In the past few years, I've pretty much been in the "new normal" phase of caregiving - that is the phase where a well spouse has made some peace with the spouse's illness and has established a livable daily routine, with only intermittent crises.
The Lord has answered my prayers of years ago by filling my life with blessings, friends, and things to keep my mind busy and distracted from focusing on Vince's illness. So I go along pretty smoothly, with God's grace of course; however, every now and then I just get down, run out of steam, and I guess you'd just call that "depressed." It doesn't last long, and I have learned that it won't, so I don't get upset by it. That's when I stop and realize what I am really living with. I tell myself - Hey, my husband has a degenerative illness; he can barely move; he barely talks; and I have to take care of all his needs (with home health aides, of course, which can also be problems!) - we can't do anything together - NO WONDER I'M DEPRESSED!!! The miracle is that I'm not depressed all the time! And that miracle is by God's grace.
So if I feel temporarily down and out of commission, I cut myself slack because it is really very awful. Of course there are zillions of people with worse lives, but having a husband who always was and always will be practically lifeless is difficult!
I'm not depressed right now - I'm writing this because I think about it often, so thought I'd put it down. It's exercise time, and thank God I can still do that!
Friday, September 11, 2009
Thursday, September 10, 2009
Health Care Reform
Here's my two cents on Pres. Obama's speech before Congress last night:
I believe that the President is very concerned about our healthcare system and how broken it is, and I believe he is trying with everything he has to correct it. He came before Congress last night, looking like a father trying to appeal to his fighting children to come to some agreements rather than the stupid bickering they've been doing. The stony-faced opponents to healthcare reform looked like spoiled, petulant children who don't want to share their toys with their less fortunate brothers and sisters; they want what they want and don't care what "Daddy" Obama says - their minds were closed to compromise. They have lots of money and power and are used to getting their own way.
Obama explained very clearly all the issues involved and what he said made great sense; there was a lot of compromise which brought together concerns of both sides of the argument.
What needs to happen is a change of hearts more than anything. If people did "what Jesus would do," there would be less disagreement, because people would truly work toward what was best for everyone. I'm afraid our democracy has become a money-ocracy in which those with the most money can buy the public policies they want - and those policies are the ones which protect their wealth and power, and to heck with the hardworking people who can't buy the laws we live under.
I believe that the President is very concerned about our healthcare system and how broken it is, and I believe he is trying with everything he has to correct it. He came before Congress last night, looking like a father trying to appeal to his fighting children to come to some agreements rather than the stupid bickering they've been doing. The stony-faced opponents to healthcare reform looked like spoiled, petulant children who don't want to share their toys with their less fortunate brothers and sisters; they want what they want and don't care what "Daddy" Obama says - their minds were closed to compromise. They have lots of money and power and are used to getting their own way.
Obama explained very clearly all the issues involved and what he said made great sense; there was a lot of compromise which brought together concerns of both sides of the argument.
What needs to happen is a change of hearts more than anything. If people did "what Jesus would do," there would be less disagreement, because people would truly work toward what was best for everyone. I'm afraid our democracy has become a money-ocracy in which those with the most money can buy the public policies they want - and those policies are the ones which protect their wealth and power, and to heck with the hardworking people who can't buy the laws we live under.
Tuesday, September 8, 2009
GRRRR!
Sometimes - like right now - I think the thing I hate the most about Vince's FXTAS is when he won't open his mouth when I have to give him a pill or see if he has swallowed it.
He has started taking Ritalin to see if it will focus his mind a little and wake him up a little. We started with four days of the lowest dose - a very tiny pill which I think is harder for me to get him to swallow than a larger one. We've done this pill in the morning and that has gone down, and I think has made him walk better and be a little more awake. Yesterday I had to up the dose to two pills a day (working up to three, starting in a week). I can't say for sure that he swallowed either of the second pills.
I made the mistake both days of not making sure every little crumb from lunch was out of his mouth - if anything is in his mouth, he will have trouble swallowing a pill. So I put the pill on his tongue, give him water, and the pill is still in his mouth somewhere!! Then he won't open his mouth so I don't know if he chewed it, swallowed it, or if it's just crushed somewhere between his teeth. He won't open his mouth, no matter what I do. So I told my aide to give him more water, and went off to calm down and pray that he in fact swallowed the pill.
I have to remember to clear his mouth before giving him medication - not that that's always possible without making me furious at FXTAS!!!! I don't throw fits anymore - I just walk away and pray - but I still feel hatred for this insidious illness when Vince won't do something simple like just OPEN HIS MOUTH!!
I know I've complained about this before, and I know no one cares, but this is my way of diffusing my frustrations. If Vince does stay on this medication - if it does in fact ever help him - I'll have to find a better way to get it into him. These little pills are horrible!! GRRRRR!
He has started taking Ritalin to see if it will focus his mind a little and wake him up a little. We started with four days of the lowest dose - a very tiny pill which I think is harder for me to get him to swallow than a larger one. We've done this pill in the morning and that has gone down, and I think has made him walk better and be a little more awake. Yesterday I had to up the dose to two pills a day (working up to three, starting in a week). I can't say for sure that he swallowed either of the second pills.
I made the mistake both days of not making sure every little crumb from lunch was out of his mouth - if anything is in his mouth, he will have trouble swallowing a pill. So I put the pill on his tongue, give him water, and the pill is still in his mouth somewhere!! Then he won't open his mouth so I don't know if he chewed it, swallowed it, or if it's just crushed somewhere between his teeth. He won't open his mouth, no matter what I do. So I told my aide to give him more water, and went off to calm down and pray that he in fact swallowed the pill.
I have to remember to clear his mouth before giving him medication - not that that's always possible without making me furious at FXTAS!!!! I don't throw fits anymore - I just walk away and pray - but I still feel hatred for this insidious illness when Vince won't do something simple like just OPEN HIS MOUTH!!
I know I've complained about this before, and I know no one cares, but this is my way of diffusing my frustrations. If Vince does stay on this medication - if it does in fact ever help him - I'll have to find a better way to get it into him. These little pills are horrible!! GRRRRR!
Sunday, August 23, 2009
Giving it to God
Now that I know God is definitely up there (as well as down here with us), I have been really trying to hand my life and struggles over to Him, because I so often feel helpless and clueless with making up Vince's care as I go along - which is what it amounts to. With God's help, I have taken excellent care of Vince so far, and I hope He keeps leading me - of course God will lead me; I have to pray that I will be able to know what God is leading me to do.
It's been a relief lately that I have been able to hand to God trying to get Vince to walk. Sometimes Vince can walk - with lots of help from me and our aide - and sometimes not. I was having trouble trying to push it too much, and just getting myself upset when Vince wasn't walking. What I have started doing is - every time we get Vince up to walk (which is only a few times each day), I ask God that if it is His will, to please help Vince walk. If not God's will that Vince walks, I will have him sit in his walker or wheelchair and ride. This has worked well for me. Sometimes, Vince does walk, and sometimes not. But I know I have handed it to God; so when I get to the point BEFORE I stress myself out trying to get Vince to walk, I have him sit and ride the rest of the way. This has worked much better for me; and it's better for Vince when I don't push and get upset.
Sometimes God wants to do things for us, but waits for us to ask for Him. And if not, we have to accept His will, because it is ultimately what is best for us. God wants us to be peaceful. So many times over the past years, it seems that He tells me "Stop struggling." I know I have pushed too hard, because I want Vince to keep whatever strength and abilities he can. I just never knew where to draw the line. By handing it to God, I can know where to draw the line, and know that I have done all I could.
It's been a relief lately that I have been able to hand to God trying to get Vince to walk. Sometimes Vince can walk - with lots of help from me and our aide - and sometimes not. I was having trouble trying to push it too much, and just getting myself upset when Vince wasn't walking. What I have started doing is - every time we get Vince up to walk (which is only a few times each day), I ask God that if it is His will, to please help Vince walk. If not God's will that Vince walks, I will have him sit in his walker or wheelchair and ride. This has worked well for me. Sometimes, Vince does walk, and sometimes not. But I know I have handed it to God; so when I get to the point BEFORE I stress myself out trying to get Vince to walk, I have him sit and ride the rest of the way. This has worked much better for me; and it's better for Vince when I don't push and get upset.
Sometimes God wants to do things for us, but waits for us to ask for Him. And if not, we have to accept His will, because it is ultimately what is best for us. God wants us to be peaceful. So many times over the past years, it seems that He tells me "Stop struggling." I know I have pushed too hard, because I want Vince to keep whatever strength and abilities he can. I just never knew where to draw the line. By handing it to God, I can know where to draw the line, and know that I have done all I could.
Thursday, August 6, 2009
Sick of Celebrities
I am so very sick of the celebrity culture we live in. I receive a magazine called Neurology Now, a neurology magazine for families dealing with neurological illnesses. I am grateful for the free subscriptions they give and the articles can be informative. But every issue features a celebrity on the cover - a celebrity who either has a neuro illness, or has a family member with one. It's always how so-and-so-celebrity copes with their illness or is a supportive caregiver to a family member. I'll tell you how they cope - THEY GET ATTENTION!! TONS OF ATTENTION AND SUPPORT AND PRAISE FROM ADORING FANS. Not to mention the tons of money they have to hire the best help and treatments.
I know that I would cope much better with my caregiving situation if I got only a fraction of the attention the celebrities get. I definitely feel better about myself and about my situation on the occasional days when I feel supported by others. But I and most of the country's millions of caregivers do not get much attention. We are sidelined and often isolated, feeling invisible. Not that I want to be on the cover of a magazine being praised for caregiving - honestly, I would be embarrassed. I just want to scream that there are millions of sick people and their caregivers who are not getting the attention they need; many of them cannot even afford decent health care.
So, I need to keep realizing that in God's eyes, I am as worthy as any "celebrity caregiver," even though I am virtually invisible to other people; and my husband is certainly as important as any celebrity with an illness although he also is invisible to others.
There - I said my piece - now I will return to my anonymity.
I know that I would cope much better with my caregiving situation if I got only a fraction of the attention the celebrities get. I definitely feel better about myself and about my situation on the occasional days when I feel supported by others. But I and most of the country's millions of caregivers do not get much attention. We are sidelined and often isolated, feeling invisible. Not that I want to be on the cover of a magazine being praised for caregiving - honestly, I would be embarrassed. I just want to scream that there are millions of sick people and their caregivers who are not getting the attention they need; many of them cannot even afford decent health care.
So, I need to keep realizing that in God's eyes, I am as worthy as any "celebrity caregiver," even though I am virtually invisible to other people; and my husband is certainly as important as any celebrity with an illness although he also is invisible to others.
There - I said my piece - now I will return to my anonymity.
Wednesday, August 5, 2009
Little Shop of Horrors
Last night half of one of Vince's upper molars fell out. This has happened before - he's lost a few teeth in the past years. This morning I called our dentist who is the sweetest guy and a really good dentist, certain that he would take care of it as always. Well, he didn't have any time to see Vince this week and is going away next week, so he referred us to an oral surgeon in our neighborhood - made an appt. for us at 11:00.
So, as my stressed caregiver mind feared that we were about to meet the dentist from "Little Shop of Horrors", my aide and I got Vince into the car and we arrived at Dr. K's office at 10:50, in time to fill out the reams of paperwork that are inevitable when you go to a new doctor. And yes, there were reams. After the receptionist made a copy of Vince's dental discount card (which wouldn't give us a discount there, anyway), I filled out pages of Vince's medical history (what I know of it), signed privacy statements, and pledges to pay the bill after services rendered.
Then we sat and waited...and waited...and waited. At 11:20, the receptionist asked if I brought a referral from our dentist - I said no, we were not there, and that our dentist made this appt. for us this morning. This was not good enough - so they needed to have our dentist fax a referral - more waiting time for us.
Meanwhile, they typed up another form for me to sign, giving permission to give novocaine and to extract Vince's tooth, making me aware that either of these procedures carried the myriad risks of infection, dizziness, giddiness, muscle damage, bone damage, jaw damage, high blood pressure, maybe even death - and the list went on. This is what happens from doctors being sued so much. I just ignored it all and signed the form, praying that God would protect Vince from all those hazards. I mean it's only novocaine and a tooth extraction, both of which he (and everyone else) has had numerous times with no problems.
Speaking of praying, at that point I took out my Rosary beads that I had brought along, and silently said a whole Rosary (20 minutes), and we were still waiting! Meanwhile, they asked me if it was Vince's #13 tooth that was the problem - well, I'm not a dentist, I don't know what "number" it is, but to look in his mouth, it's obvious; plus our dentist should have told them.
So finally they took an Xray of Vince's mouth, and then we waited some more.
Two more patients came in meanwhile, and were seen immediately. At 12:00, as I was about to suggest that we return on a day when they actually had time for Vince, they took us in! At this point I was about to cry, but we were finally going to see the grand, high, exalted, mystic dentist! (Actually he was an oral surgeon, which meant "lots more expensive!"). So after two antibiotic pills, Dr. K entered, and was actually quite nice - not at all scary - and he proceeded to start the job by 12:20. We were out of there at 1:00, $445 dollars poorer, and full of instructions for rinsing, soft food, etc. etc. etc., more antibiotics.
Dr. K also gave Vince a script for Vicodin in case he had pain - I won't fill it, because Vince never complains of pain from an extraction; and if he did, ibuprofen would suffice. Don't worry - I won't fill it for myself either, as painful as this caregiving stuff is. God is my Vicodin!
So, as my stressed caregiver mind feared that we were about to meet the dentist from "Little Shop of Horrors", my aide and I got Vince into the car and we arrived at Dr. K's office at 10:50, in time to fill out the reams of paperwork that are inevitable when you go to a new doctor. And yes, there were reams. After the receptionist made a copy of Vince's dental discount card (which wouldn't give us a discount there, anyway), I filled out pages of Vince's medical history (what I know of it), signed privacy statements, and pledges to pay the bill after services rendered.
Then we sat and waited...and waited...and waited. At 11:20, the receptionist asked if I brought a referral from our dentist - I said no, we were not there, and that our dentist made this appt. for us this morning. This was not good enough - so they needed to have our dentist fax a referral - more waiting time for us.
Meanwhile, they typed up another form for me to sign, giving permission to give novocaine and to extract Vince's tooth, making me aware that either of these procedures carried the myriad risks of infection, dizziness, giddiness, muscle damage, bone damage, jaw damage, high blood pressure, maybe even death - and the list went on. This is what happens from doctors being sued so much. I just ignored it all and signed the form, praying that God would protect Vince from all those hazards. I mean it's only novocaine and a tooth extraction, both of which he (and everyone else) has had numerous times with no problems.
Speaking of praying, at that point I took out my Rosary beads that I had brought along, and silently said a whole Rosary (20 minutes), and we were still waiting! Meanwhile, they asked me if it was Vince's #13 tooth that was the problem - well, I'm not a dentist, I don't know what "number" it is, but to look in his mouth, it's obvious; plus our dentist should have told them.
So finally they took an Xray of Vince's mouth, and then we waited some more.
Two more patients came in meanwhile, and were seen immediately. At 12:00, as I was about to suggest that we return on a day when they actually had time for Vince, they took us in! At this point I was about to cry, but we were finally going to see the grand, high, exalted, mystic dentist! (Actually he was an oral surgeon, which meant "lots more expensive!"). So after two antibiotic pills, Dr. K entered, and was actually quite nice - not at all scary - and he proceeded to start the job by 12:20. We were out of there at 1:00, $445 dollars poorer, and full of instructions for rinsing, soft food, etc. etc. etc., more antibiotics.
Dr. K also gave Vince a script for Vicodin in case he had pain - I won't fill it, because Vince never complains of pain from an extraction; and if he did, ibuprofen would suffice. Don't worry - I won't fill it for myself either, as painful as this caregiving stuff is. God is my Vicodin!
Saturday, August 1, 2009
Aide Woes
I knew it was bound to happen. After 3 years of stability with two home health aides - one for days and one for evenings, that's coming apart. The evening and Saturday aide had to take a job at a grocery store to get health insurance, so he still works for us, but needs to work for the grocery store about 3 times a week during his hours for us - the store of course calls the shots, because THEY're the one with the health insurance. I'm just a peon.
My nursing agency has gotten a replacement who so far has been able to cover the other aide's hours, but it is a new person, starting all over, doing things differently, and Vince won't walk much for him because he's not used to him.
Long story short - I'm stressed and depressed. I'm hanging on to God and taking it slowly, one step at a time, but I'm back to doing more of the work with Vince and it's very hard to have the new normal that I accomplished pulled apart. Of course that's life, and my problems could be worse, but hey, I live with a husband who barely moves or talks - as if that wasn't depressing enough to live with EVERY DAY.
I won't stop holding on to God, though. I know He has reasons and lessons for me, and I'm trying to learn them. I keep praying that Jesus will be the Lord of my mind, and not be badgered by all the annoying and depressing thoughts that are bombarding me. I will get over this depression - my depressions are on and off - it goes with the caregiver territory.
So just felt like venting - I doubt many people, if any, read this blog anyway. I have other things going on that are dragging me down also. I'll probably feel better tomorrow, when I have my two regular aides and return to a day of more order.
I did what I needed to do today, and had a nice lunch with 8 other support group friends, so I'm not dysfunctional - just beaten down and not looking forward to my evening with the third aide, who also did the daytime shift today, so I've had enough of this.
My nursing agency has gotten a replacement who so far has been able to cover the other aide's hours, but it is a new person, starting all over, doing things differently, and Vince won't walk much for him because he's not used to him.
Long story short - I'm stressed and depressed. I'm hanging on to God and taking it slowly, one step at a time, but I'm back to doing more of the work with Vince and it's very hard to have the new normal that I accomplished pulled apart. Of course that's life, and my problems could be worse, but hey, I live with a husband who barely moves or talks - as if that wasn't depressing enough to live with EVERY DAY.
I won't stop holding on to God, though. I know He has reasons and lessons for me, and I'm trying to learn them. I keep praying that Jesus will be the Lord of my mind, and not be badgered by all the annoying and depressing thoughts that are bombarding me. I will get over this depression - my depressions are on and off - it goes with the caregiver territory.
So just felt like venting - I doubt many people, if any, read this blog anyway. I have other things going on that are dragging me down also. I'll probably feel better tomorrow, when I have my two regular aides and return to a day of more order.
I did what I needed to do today, and had a nice lunch with 8 other support group friends, so I'm not dysfunctional - just beaten down and not looking forward to my evening with the third aide, who also did the daytime shift today, so I've had enough of this.
Tuesday, July 14, 2009
Home INCHprovement
Home maintenance and decoration have never been among my strong points. Now, as a full-time spousal caregiver with a completely disabled husband, maintaining our house in decent condition has been really difficult for me.
Since my husband became disabled mentally and physically shortly after our marriage, it was left up to me pretty much completely to make his house livable - he had neglected the house for the 18 years between his first wife's death and our marriage. In the past ten years, I have replaced just about everything in the house - siding, electrical system, all appliances including hot water heater and heating A/C system, paint, carpet, floors, totally redone two bathrooms (one with handicap modifications), termite-proofed the house and water-proofed the basement, replaced windows, doors and locks, and the list goes on and on.
At this point, the house is basically presentable, but far from what I or anyone else would consider attractive. After the initial paint job 10 years ago, the inside of the house pretty much needs to be painted all over. But I just cannot handle the stress of having it painted - and don't even begin to think I can do it myself! However, our upstairs hallway and walls on the stairway have gotten so badly marked up from Vince's walker and our aides banging into them, that I finally decided I need to just paint that much. It's the only part of the house I can have painted without moving furniture.
So today - right now - the painting is in progress, and I hope it will be done in time to be dry by tonight when we bring Vince upstairs to bed and the walls begin to get banged up again.
Really, I am so worn out from my years of caregiving and dealing with all the related issues by myself withOUT my husband's help - this house being a main source of problems (but don't even say the word "move" to me - my mind could not begin to deal with that) - that every time I get work done in the house, it is a source of anxiety. So far, today has been okay, as long as I don't look at the job in progress, and I won't have to move back any furniture when it's done.
I am grateful I can afford to pay people to do home improvements for me - at least for now - and I try to be very conservative about what I do. But I really have to do things inch by inch - I call it "damage control", and just do what absolutely must be done at any one time.
A lot of my home maintenance anxiety comes from bad experiences in making "improvements." It seems that every time a worker would come to make an improvement, there would be a complication where I'd have to address fixing another problem in the house. Like the pest control people who showed my all the openings in our house whereby the occasional mouse and lots of bugs were gaining entry - then came the construction job to patch that all up. Then when the chimney sweep came - just once because I never use the fireplace - he advised that the vent or whatever was sticking up on the roof was all rusted - so that needed painting. And it goes on and on like that. Rarely has a home improvement gone smoothly for me. So I have come to fear them!
When I was having all the windows replaced several years ago, and the job took two weeks instead of the three days the installers had promised, and there were other complications with that as well - I just blew my top one day. I realized that now I have to minimize stress when I have work done in the house - inch by inch, and only do what absolutely must be done.
I have neighbors across the street totally redoing their house from top to bottom and everything in between inside and out because they are selling the house. But they are a functional married couple so they can do it together without one having to caregive the other. God help me if I ever have to go through that to sell this house! I don't think about that - it would totally destroy me - the future of me and this house are safely in God's hands.
And hopefully, if and when I get to heaven someday, God will have a lovely, clean, repair-free home for me!
Since my husband became disabled mentally and physically shortly after our marriage, it was left up to me pretty much completely to make his house livable - he had neglected the house for the 18 years between his first wife's death and our marriage. In the past ten years, I have replaced just about everything in the house - siding, electrical system, all appliances including hot water heater and heating A/C system, paint, carpet, floors, totally redone two bathrooms (one with handicap modifications), termite-proofed the house and water-proofed the basement, replaced windows, doors and locks, and the list goes on and on.
At this point, the house is basically presentable, but far from what I or anyone else would consider attractive. After the initial paint job 10 years ago, the inside of the house pretty much needs to be painted all over. But I just cannot handle the stress of having it painted - and don't even begin to think I can do it myself! However, our upstairs hallway and walls on the stairway have gotten so badly marked up from Vince's walker and our aides banging into them, that I finally decided I need to just paint that much. It's the only part of the house I can have painted without moving furniture.
So today - right now - the painting is in progress, and I hope it will be done in time to be dry by tonight when we bring Vince upstairs to bed and the walls begin to get banged up again.
Really, I am so worn out from my years of caregiving and dealing with all the related issues by myself withOUT my husband's help - this house being a main source of problems (but don't even say the word "move" to me - my mind could not begin to deal with that) - that every time I get work done in the house, it is a source of anxiety. So far, today has been okay, as long as I don't look at the job in progress, and I won't have to move back any furniture when it's done.
I am grateful I can afford to pay people to do home improvements for me - at least for now - and I try to be very conservative about what I do. But I really have to do things inch by inch - I call it "damage control", and just do what absolutely must be done at any one time.
A lot of my home maintenance anxiety comes from bad experiences in making "improvements." It seems that every time a worker would come to make an improvement, there would be a complication where I'd have to address fixing another problem in the house. Like the pest control people who showed my all the openings in our house whereby the occasional mouse and lots of bugs were gaining entry - then came the construction job to patch that all up. Then when the chimney sweep came - just once because I never use the fireplace - he advised that the vent or whatever was sticking up on the roof was all rusted - so that needed painting. And it goes on and on like that. Rarely has a home improvement gone smoothly for me. So I have come to fear them!
When I was having all the windows replaced several years ago, and the job took two weeks instead of the three days the installers had promised, and there were other complications with that as well - I just blew my top one day. I realized that now I have to minimize stress when I have work done in the house - inch by inch, and only do what absolutely must be done.
I have neighbors across the street totally redoing their house from top to bottom and everything in between inside and out because they are selling the house. But they are a functional married couple so they can do it together without one having to caregive the other. God help me if I ever have to go through that to sell this house! I don't think about that - it would totally destroy me - the future of me and this house are safely in God's hands.
And hopefully, if and when I get to heaven someday, God will have a lovely, clean, repair-free home for me!
Thursday, June 25, 2009
God to the Rescue!
We had an incident last night - one of the insidious symptoms of FXTAS. After my aide and I got Vince into bed (which is never easy - always a trial in itself for various reasons), I was giving Vince a drink of water like I do every night. He often seems to be thirsty by the time we get him in bed, and I need to make sure he gets enough fluids, as everyone needs. He wouldn't be able to ask for a drink, so I offer it every night. Sometimes he takes it, sometimes not.
Last night I held up his head like always and put the water to his lips. He took some, but then I thought he had water in his mouth that he wouldn't swallow. This has happened before with food and liquids, but not as bad as last night. He just would NOT open his mouth to show me if there was water in it. I didn't think there was water in his mouth, but something just wouldn't let me give up on it. I kept praying to God to not let Vince choke if there was water in his mouth, but I was unable to just give it up to God - I was getting more and more frantic, until I was screaming and getting so angry at the FXTAS because Vince would not open his mouth. I was trying to squeeze his mouth open, but he would NOT open it. It's the stupid things that upset me the most - it's not like I was asking Vince to do cartwheels - I just needed him to open his mouth and he would not. It looked like he was being stubborn, even though I'm sure somehow the FXTAS wasn't allowing him to open his mouth.
Finally I had a picture in my mind of what they do with people they fish out of the ocean and save from drowning - they put them on their side. So I rolled Vince on his side and kept coaxing him to open his mouth - FINALLY he let the water out - he DID have water in there and held it in for so long! He had quite a bit of water in his mouth. Once it came out, he was able to talk and open his mouth. SCARY!!! God did take care of him.
Of course I hated myself for having yelled at Vince, and told him I was sorry and that I was angry at the illness, not him - like always. I was feeling miserable about myself and my ability to take care of Vince and praying and praying to God for answers.
This morning I was anxious when I woke up about going through another FXTAS day. When I started reading my morning prayers, though, I was blown away and much relieved at what God said to me in those prayers. Catholics have a prayer book called the Magnificat - it has prayers for morning, Mass, evening and nighttime for every day - each day has it's own prayers, so they are always different. The very first line this morning said "All who are thirsty, come to the living waters!" I just laughed and said "Lord, you really do have a sense of humor!" The whole theme of the morning prayers was water - the waters of life, thirsting for Jesus, etc. etc. What a perfect message for me after last night's water incident.
Then there was a small commentary in the prayers which said, "no matter what force of abuse is unleashed on us, we stand firm; we do not collapse. The authority of Christ upholds us." This reinforced my courage to continue my battle with FXTAS for another day. Only it should not be a "battle"; I need to just let God work through me and trust Him rather than getting so upset like I do sometimes. I know I'm just being human, but God can give me the grace to go beyond what I can humanly do alone. I need that supernatural grace in this situation because it IS truly more than I can handle. But I have no better alternative than the way I am managing our life now, so I must continue to build my faith, because God really has been faithful to me all along, and I have to believe He always will be.
These lessons to me through God's word in prayers and in the Bible happen a lot to me - that's a lot of how I know God is real and is with me. These prayers relaxed me and helped me feel safe in God's care. Every day I also read a commentary on the daily Gospel reading in a booklet called "One Bread, One Body." Today's message was called "Sitting Tight" and explained how sometimes we just need to wait patiently for God, and sometimes we need to take action. That was a lesson I needed to hear after last night's "water" incident: It was right for me to get the water out of Vince's mouth, but I should have done it with more patience and trust in God's guidance rather than getting so distraught. Isaiah said "By waiting and by calm you shall be saved, in quiet and in trust your strength lies."
I also learned a more practical lesson: I went out today and bought an adjustable bed, so I will be able to raise up Vince's upper body to give him water in bed, and feed him meals for when he has bad days and can't get out of bed. Oh I hope it helps!!
Last night I held up his head like always and put the water to his lips. He took some, but then I thought he had water in his mouth that he wouldn't swallow. This has happened before with food and liquids, but not as bad as last night. He just would NOT open his mouth to show me if there was water in it. I didn't think there was water in his mouth, but something just wouldn't let me give up on it. I kept praying to God to not let Vince choke if there was water in his mouth, but I was unable to just give it up to God - I was getting more and more frantic, until I was screaming and getting so angry at the FXTAS because Vince would not open his mouth. I was trying to squeeze his mouth open, but he would NOT open it. It's the stupid things that upset me the most - it's not like I was asking Vince to do cartwheels - I just needed him to open his mouth and he would not. It looked like he was being stubborn, even though I'm sure somehow the FXTAS wasn't allowing him to open his mouth.
Finally I had a picture in my mind of what they do with people they fish out of the ocean and save from drowning - they put them on their side. So I rolled Vince on his side and kept coaxing him to open his mouth - FINALLY he let the water out - he DID have water in there and held it in for so long! He had quite a bit of water in his mouth. Once it came out, he was able to talk and open his mouth. SCARY!!! God did take care of him.
Of course I hated myself for having yelled at Vince, and told him I was sorry and that I was angry at the illness, not him - like always. I was feeling miserable about myself and my ability to take care of Vince and praying and praying to God for answers.
This morning I was anxious when I woke up about going through another FXTAS day. When I started reading my morning prayers, though, I was blown away and much relieved at what God said to me in those prayers. Catholics have a prayer book called the Magnificat - it has prayers for morning, Mass, evening and nighttime for every day - each day has it's own prayers, so they are always different. The very first line this morning said "All who are thirsty, come to the living waters!" I just laughed and said "Lord, you really do have a sense of humor!" The whole theme of the morning prayers was water - the waters of life, thirsting for Jesus, etc. etc. What a perfect message for me after last night's water incident.
Then there was a small commentary in the prayers which said, "no matter what force of abuse is unleashed on us, we stand firm; we do not collapse. The authority of Christ upholds us." This reinforced my courage to continue my battle with FXTAS for another day. Only it should not be a "battle"; I need to just let God work through me and trust Him rather than getting so upset like I do sometimes. I know I'm just being human, but God can give me the grace to go beyond what I can humanly do alone. I need that supernatural grace in this situation because it IS truly more than I can handle. But I have no better alternative than the way I am managing our life now, so I must continue to build my faith, because God really has been faithful to me all along, and I have to believe He always will be.
These lessons to me through God's word in prayers and in the Bible happen a lot to me - that's a lot of how I know God is real and is with me. These prayers relaxed me and helped me feel safe in God's care. Every day I also read a commentary on the daily Gospel reading in a booklet called "One Bread, One Body." Today's message was called "Sitting Tight" and explained how sometimes we just need to wait patiently for God, and sometimes we need to take action. That was a lesson I needed to hear after last night's "water" incident: It was right for me to get the water out of Vince's mouth, but I should have done it with more patience and trust in God's guidance rather than getting so distraught. Isaiah said "By waiting and by calm you shall be saved, in quiet and in trust your strength lies."
I also learned a more practical lesson: I went out today and bought an adjustable bed, so I will be able to raise up Vince's upper body to give him water in bed, and feed him meals for when he has bad days and can't get out of bed. Oh I hope it helps!!
Wednesday, June 24, 2009
Much Better Today
God answered my desperate prayers from yesterday's awful day, and today was back to what is normal for Vince and me. Our regular aide returned, got Vince out of bed, showered him; Vince was able to do his little bit of walking again, and I did get my workout this afternoon.
I think sometimes God lets me have those awful days, so I appreciate the regular days instead of complaining about them. None of our days are easy or normal with FXTAS in our lives. I say we live an X-treme life. But when I get a really rough day - like Vince being like a zombie and a substitute aide who can't handle him - I am so happy to get back to our normal situation.
I think sometimes God lets me have those awful days, so I appreciate the regular days instead of complaining about them. None of our days are easy or normal with FXTAS in our lives. I say we live an X-treme life. But when I get a really rough day - like Vince being like a zombie and a substitute aide who can't handle him - I am so happy to get back to our normal situation.
Tuesday, June 23, 2009
The Worst of FXTAS
Today was just awful - and the day is not over. Today was one of those days when Vince's FXTAS shows all of its ugly dimensions.
The past couple of years have been relatively stable, with 10 hours of home health aides a day and Vince having a steady daily routine of a morning shower, coming downstairs to the family room for the day, and back up to bed at night - walking a little bit with help. It's dull, but he's perfectly content and I have time to get out every day and do non-caregiving things, so it works as well as anything can.
Once in a while, Vince has a day when he just doesn't function - he just seems to want to sleep all day. Today was one of those days. I knew it as soon as I woke up this morning and he was sleeping, but looked more knocked out than usual. He felt a little warm - our bedroom is the warmest room in the house, even with air conditioning on to the point that the downstairs is cold (time to buy an attic fan I think); I got him to drink water and washed him around and he cooled down. He didn't have a fever or any other noticeable problems.
Today my regular aide (both my aides are males, therefore, strong enough to handle Vince) needed the day off, so the agency sent a female aide. She was very nice and I'm sure very competent for a person of usual needs, but she and I could not get Vince out of bed. So he had to stay in bed all day. His incontinence was worse too - changing Depends every 1 or 2 hours. We had to keep pulling him up in the bed because every time you change him (which involves rolling him from side to side), his body moves down the bed till his feet are almost at the end of the bed.
Then we got him to a sort of upright position - using a big wedge pillow behind him - so we could feed him simple foods like oat bran and mac and cheese. (time to buy the adjustable bed that raises the upper body!).
I couldn't get any of Vince's medications into him today - he can do without them for one day. So he just slept and sweated all day. At 6:30 p.m. my evening aide (male) came, and we were able to get Vince downstairs, into his recliner, and having a regular dinner. I made hamburgers which is one of his favorites, and he seemed to eat fine. Except after dinner, I had to fish chewed meat out of his mouth - he does this sometimes, but of course had to do it today because the FXTAS had to do all its nasty tricks today. Then the aide gave Vince a vitamin, which he wouldn't swallow and I had to coax that out of his mouth.
All of these things happen sometimes, but today we got the whole range! Vince couldn't walk either - we pushed him across the room in his walker/seat - he took a few steps, but didn't make it all the way. Now after dinner he's sound asleep again in his recliner. Later we will probably have an ordeal getting him up to bed - but maybe not. Sometimes after a day like this, he gets his "feet" back at night and does much better. I really hope so. And do I ever hope tomorrow goes back to our normal routine - as difficult as it is, days like today make "normal" days seem great.
AND I didn't get my workout in today, so I am not happy. I did go out to lunch with a friend, but I get really anxious when Vince has days like this, because he doesn't talk and I don't know what's wrong with him, other than just FXTAS at its nastiest.
But what's really scary, is that today was not the nastiest - this will only get worse. That's why I have to believe that God is in control and I have to believe that whatever happens is God's will. I beg God to guide my days, step by step, especially days like today when I just get clueless about what I should do.
Vince has his twice-yearly appt. with his neurologist tomorrow - if we can get him there. But that won't help any. Doctors tell me I'm already doing all I can for Vince and never have any better suggestions (other than the dreaded nursing home, which I will refuse to do as long as keeping him at home is in any way possible).
This isn't my best writing either, but my mind turns to mush on days like this - I just wanted to get it written down. Here's hoping for a better tomorrow.
The past couple of years have been relatively stable, with 10 hours of home health aides a day and Vince having a steady daily routine of a morning shower, coming downstairs to the family room for the day, and back up to bed at night - walking a little bit with help. It's dull, but he's perfectly content and I have time to get out every day and do non-caregiving things, so it works as well as anything can.
Once in a while, Vince has a day when he just doesn't function - he just seems to want to sleep all day. Today was one of those days. I knew it as soon as I woke up this morning and he was sleeping, but looked more knocked out than usual. He felt a little warm - our bedroom is the warmest room in the house, even with air conditioning on to the point that the downstairs is cold (time to buy an attic fan I think); I got him to drink water and washed him around and he cooled down. He didn't have a fever or any other noticeable problems.
Today my regular aide (both my aides are males, therefore, strong enough to handle Vince) needed the day off, so the agency sent a female aide. She was very nice and I'm sure very competent for a person of usual needs, but she and I could not get Vince out of bed. So he had to stay in bed all day. His incontinence was worse too - changing Depends every 1 or 2 hours. We had to keep pulling him up in the bed because every time you change him (which involves rolling him from side to side), his body moves down the bed till his feet are almost at the end of the bed.
Then we got him to a sort of upright position - using a big wedge pillow behind him - so we could feed him simple foods like oat bran and mac and cheese. (time to buy the adjustable bed that raises the upper body!).
I couldn't get any of Vince's medications into him today - he can do without them for one day. So he just slept and sweated all day. At 6:30 p.m. my evening aide (male) came, and we were able to get Vince downstairs, into his recliner, and having a regular dinner. I made hamburgers which is one of his favorites, and he seemed to eat fine. Except after dinner, I had to fish chewed meat out of his mouth - he does this sometimes, but of course had to do it today because the FXTAS had to do all its nasty tricks today. Then the aide gave Vince a vitamin, which he wouldn't swallow and I had to coax that out of his mouth.
All of these things happen sometimes, but today we got the whole range! Vince couldn't walk either - we pushed him across the room in his walker/seat - he took a few steps, but didn't make it all the way. Now after dinner he's sound asleep again in his recliner. Later we will probably have an ordeal getting him up to bed - but maybe not. Sometimes after a day like this, he gets his "feet" back at night and does much better. I really hope so. And do I ever hope tomorrow goes back to our normal routine - as difficult as it is, days like today make "normal" days seem great.
AND I didn't get my workout in today, so I am not happy. I did go out to lunch with a friend, but I get really anxious when Vince has days like this, because he doesn't talk and I don't know what's wrong with him, other than just FXTAS at its nastiest.
But what's really scary, is that today was not the nastiest - this will only get worse. That's why I have to believe that God is in control and I have to believe that whatever happens is God's will. I beg God to guide my days, step by step, especially days like today when I just get clueless about what I should do.
Vince has his twice-yearly appt. with his neurologist tomorrow - if we can get him there. But that won't help any. Doctors tell me I'm already doing all I can for Vince and never have any better suggestions (other than the dreaded nursing home, which I will refuse to do as long as keeping him at home is in any way possible).
This isn't my best writing either, but my mind turns to mush on days like this - I just wanted to get it written down. Here's hoping for a better tomorrow.
Sunday, June 21, 2009
The Blank Stare of FXTAS
The very worst of all the horrendous symptoms of Vince's FXTAS condition is the blank stare I see too often on his face. I've gotten used to it to some extent, but sometimes it can upset me as much as it did when it first started replacing his former, healthy face several years ago.
At least I know what it is now. In the first years of our marriage, Vince would sometimes just stare at the TV (or straight ahead when I shut off the TV) when I was talking to him. I had no idea his mind was falling apart, and I was quite upset by the apathetic attitute he developed in the first year of our marriage, and probably earlier as I now look back with my knowledge of FXTAS. He's just apathetic because his brain doesn't work.
Now, he just stares straight ahead pretty much all the time. Once in a while, he speaks a little, thankfully says he loves me, and looks sort of alert; but mostly it's that horrible vacant stare which reflects the empty space in his atrophied brain.
I can get really, really frustrated when I ask the simplest of questions, like "Are you hungry? Are you thirsty?" and he just stares and says nothing. I look for the slightest nod or shaking of his head which will sometimes be the only answer I get - if I'm lucky!
Probably the majority of married women complain about their husbands' occasional lack of attention to them and their emotional distance. Maybe if they spent a day in my house, they would learn to be grateful for what they had. On the other hand, if I spent a day with a woman whose husband was paralyzed and connected to tubes, I'd probably be grateful for what I had!
For the past couple of years, I have learned to better cope with the FXTAS in our life, but I do have depressions which arise every now and then - it IS depressing, isn't it?, to be married to a man who rarely talks, aside from not being able to walk or do anything else for himself. The depression just creeps up on me, especially if I have not been out of the house enough - between Vince's blank stare and my very lethargic home health aides being an almost constant fixture in my house, I think it's more surprising that there are days when I am NOT depressed!
But, on the good side, Vince's blankness brings with it a quiet contentment on his part. He does not get angry or anxious like some people with FXTAS or other forms of dementia. Dementia - how I hate that word - maybe instead of dementia (which sounds like "demented" and has nasty connotations) we can call it. . . . . . . .hmm. . . . . .brain-on-permanent-vacation?. . . . . . . .
At least I know what it is now. In the first years of our marriage, Vince would sometimes just stare at the TV (or straight ahead when I shut off the TV) when I was talking to him. I had no idea his mind was falling apart, and I was quite upset by the apathetic attitute he developed in the first year of our marriage, and probably earlier as I now look back with my knowledge of FXTAS. He's just apathetic because his brain doesn't work.
Now, he just stares straight ahead pretty much all the time. Once in a while, he speaks a little, thankfully says he loves me, and looks sort of alert; but mostly it's that horrible vacant stare which reflects the empty space in his atrophied brain.
I can get really, really frustrated when I ask the simplest of questions, like "Are you hungry? Are you thirsty?" and he just stares and says nothing. I look for the slightest nod or shaking of his head which will sometimes be the only answer I get - if I'm lucky!
Probably the majority of married women complain about their husbands' occasional lack of attention to them and their emotional distance. Maybe if they spent a day in my house, they would learn to be grateful for what they had. On the other hand, if I spent a day with a woman whose husband was paralyzed and connected to tubes, I'd probably be grateful for what I had!
For the past couple of years, I have learned to better cope with the FXTAS in our life, but I do have depressions which arise every now and then - it IS depressing, isn't it?, to be married to a man who rarely talks, aside from not being able to walk or do anything else for himself. The depression just creeps up on me, especially if I have not been out of the house enough - between Vince's blank stare and my very lethargic home health aides being an almost constant fixture in my house, I think it's more surprising that there are days when I am NOT depressed!
But, on the good side, Vince's blankness brings with it a quiet contentment on his part. He does not get angry or anxious like some people with FXTAS or other forms of dementia. Dementia - how I hate that word - maybe instead of dementia (which sounds like "demented" and has nasty connotations) we can call it. . . . . . . .hmm. . . . . .brain-on-permanent-vacation?. . . . . . . .
Father's Day - I Am My Fathers?
Today being Father's Day, and I being a spousal caregiver who, aside from my cargiving persona, is not sure of what or who else I am, it occurred to me to think of the positive qualities that I inherited from the fathers in my life, all who are deceased.
From my father - Milton - I inherited a quiet, non-confrontational personality. My father taught me at a young age to appreciate reading and literature such as Dickens, Poe, Shakespeare, Plato and Aristotle. He also taught me to be a health-aholic with regard to diet, and the joys of exercise, both of which have so far kept me in good health. He always kept the current copy the New York Times Book Review in the bathroom, so I knew the titles of the bestselling books, even though I didn't read them.
From my paternal grandfather - Pop-Pop Harry as he was known to his grandchildren - I inherited a love of writing. The center of his life was God, and he was always in the synagogue (I was raised Jewish). He would often take me to the synagogue with him. Even though I had no relationship with God for the first 40 or so years of my life, now as a Catholic, God is also the center of my life. Perhaps my affinity to have faith in God came from Pop-Pop Harry's personality and example. Pop-Pop Harry was the secretary of the synagogue Men's Club; I am the secretary of my church's Women's Council. And like him, I pray several times a day!
My maternal grandfather was named Abe, but we all called him Pop-Pop Muzzy - a name I was told that I gave him when I was small because he had a mustache. Pop-Pop Muzzy was funny, funny, funny, and did magic tricks which were amazing. I still have never figured out how he got a penny to walk down the stairway by itself. I think I must have gotten my sense of humor from him.
I knew only one of my great-grandfathers, my mother's maternal grandfather. Everyone called him "Zayda", and it was some time before I realized he had a real name - Eli. He too was completely devoted to God as an Orthodox Jew. He was alive until I was in college, I think, and he died in his 90s with no gray hair. Although I'm grayer than he ever was, I hope I've inherited Zayda's faith and devotion in God, as well as his health.
So, all of my negative qualities and caregiver depression aside for now, I guess this all makes me a basically healthy reader/writer who loves to find things to laugh about, who tries to keep God at the center of my life, and who is still always looking for some magic!
From my father - Milton - I inherited a quiet, non-confrontational personality. My father taught me at a young age to appreciate reading and literature such as Dickens, Poe, Shakespeare, Plato and Aristotle. He also taught me to be a health-aholic with regard to diet, and the joys of exercise, both of which have so far kept me in good health. He always kept the current copy the New York Times Book Review in the bathroom, so I knew the titles of the bestselling books, even though I didn't read them.
From my paternal grandfather - Pop-Pop Harry as he was known to his grandchildren - I inherited a love of writing. The center of his life was God, and he was always in the synagogue (I was raised Jewish). He would often take me to the synagogue with him. Even though I had no relationship with God for the first 40 or so years of my life, now as a Catholic, God is also the center of my life. Perhaps my affinity to have faith in God came from Pop-Pop Harry's personality and example. Pop-Pop Harry was the secretary of the synagogue Men's Club; I am the secretary of my church's Women's Council. And like him, I pray several times a day!
My maternal grandfather was named Abe, but we all called him Pop-Pop Muzzy - a name I was told that I gave him when I was small because he had a mustache. Pop-Pop Muzzy was funny, funny, funny, and did magic tricks which were amazing. I still have never figured out how he got a penny to walk down the stairway by itself. I think I must have gotten my sense of humor from him.
I knew only one of my great-grandfathers, my mother's maternal grandfather. Everyone called him "Zayda", and it was some time before I realized he had a real name - Eli. He too was completely devoted to God as an Orthodox Jew. He was alive until I was in college, I think, and he died in his 90s with no gray hair. Although I'm grayer than he ever was, I hope I've inherited Zayda's faith and devotion in God, as well as his health.
So, all of my negative qualities and caregiver depression aside for now, I guess this all makes me a basically healthy reader/writer who loves to find things to laugh about, who tries to keep God at the center of my life, and who is still always looking for some magic!
Sunday, June 14, 2009
Eleventh Hour Rescue - Literally!
I have so many stories of woes with the home health aides that I must employ to help me care for Vince. However, for the past three years I've had the same two guys and I have been able to enjoy a modest amount of stability in my life and have been able to kind of "have a life" apart from caregiving. I can get out every day and I have been able to maintain my physical health.
Once in a while, though, the crisis happens - neither of my aides can come, and I have to get a substitute. Because I use an agency, I usually am able to get a sub. Yesterday was one of those days. I needed a sub for the day shift and evening shift. The day shift (9-3) was filled by a guy we had had once before several months ago, so it was not as bad as starting over with someone new, but I still had to do most of Vince's care, with the aide helping me to move Vince around. Invariably, when someone new is helping Vince to move around, Vince must feel the strangeness because he has more trouble walking. So this becomes way more stressful for me; yesterday was stressful! But after we got Vince cleaned up, downstairs, and breakfast done with, I went out to meet a friend for lunch. That was lovely - even had a small ice-cream sundae for dessert - I needed a treat (so did my friend who has her own trials!).
For last night's evening shift (6:30 - 10:30), we were supposed to have a female aide whom we'd never met. I was hoping she was stronger than me, and figured between us we would get Vince back up to bed one way or another (pushing him in his walker or transport chair if he couldn't walk - I have lots of methods, but I cannot do any of these by myself). At 6:45, I got a phone call from the agency saying that the aide's car was towed and she wouldn't be able to come, and they did not have anyone else available at that late notice. I did not hide my despair, saying that I would just have to deal with it, and we'd probably spend the night in the family room, with Vince sleeping in his recliner.
The only problem with spending the night downstairs, though, is that after I've stood Vince up from his recliner a few times to change Depends, I can't get him sitting back far enough in the chair (the aides can pull him up and back - I cannot, no way! - and believe, me, I've tried!). So he is farther down on the chair, with his feet hanging over, even when I lay the recliner down flat - then I put a hassock under his dangling feet - not a great position for an all-nighter. Not to mention my crankiness if I had to spend the night sleeping on the downstairs couch.
Meanwhile, I asked God "What are you thinking? How could you let that woman's car be towed when You know how I can't handle Vince without help?" I really wasn't being irreverent. Sometimes, though, I do think that I act a little too familiar with God; but I have developed a relationship of reliance on Him just like a wonderfully loving Father, which I have learned is what He wants from us. And I know He has a sense of humor. I know that God uses bad experiences to teach me lessons of faith, patience and endurance. So I did expect that God had a reason for leaving me stranded without help last night and I was still hoping He would pull the saving rabbit out of His hat. My favorite saying is "Nothing is impossible with God."
The agency lady must have felt sorry for me (and God was working wth me!), so she called back a little later to say that one of her male aides was finishing a job not far from us at 10 p.m., and he offered to come after that to help get Vince to bed. Normally the agency has a four-hour minimum for a shift, so I asked about that. She suggested he be paid for two hours. I declined that - way too much money for the aggravation I would have just explaining to the guy how to get here (I go through this routine with every new aide - and their English is bad so this is more difficult than you would think), and he would only need to be here for half an hour. So she offered one hour, and I accepted gladly.
So, in the 11th hour, at 10:20 p.m., a very friendly and energetic aide appeared at our door, and helped me get Vince to bed within half an hour. It wasn't easy, but we did it! I was SO grateful to the aide and to God for really pulling off this rescue!
Every inch of my body was aching, though, and I had a good cry, bemoaning that I had to be dependent on others to handle Vince's care. I took an ibuprofen, got into bed, and amazingly, was not hurting any more this morning. I went to Mass a very thankful lady, with my regular aide returned this morning.
And about God - He did hear my cries for help. Today's Psalm reading at Mass was Psalm 116, which is my favorite. It talks about God hearing our cries for help, and how much we need him, and how he rescues us! I laughed as I read it, because I felt God was really speaking to yesterday's trials, and I felt greatly relieved. Read it - it's all true!
Once in a while, though, the crisis happens - neither of my aides can come, and I have to get a substitute. Because I use an agency, I usually am able to get a sub. Yesterday was one of those days. I needed a sub for the day shift and evening shift. The day shift (9-3) was filled by a guy we had had once before several months ago, so it was not as bad as starting over with someone new, but I still had to do most of Vince's care, with the aide helping me to move Vince around. Invariably, when someone new is helping Vince to move around, Vince must feel the strangeness because he has more trouble walking. So this becomes way more stressful for me; yesterday was stressful! But after we got Vince cleaned up, downstairs, and breakfast done with, I went out to meet a friend for lunch. That was lovely - even had a small ice-cream sundae for dessert - I needed a treat (so did my friend who has her own trials!).
For last night's evening shift (6:30 - 10:30), we were supposed to have a female aide whom we'd never met. I was hoping she was stronger than me, and figured between us we would get Vince back up to bed one way or another (pushing him in his walker or transport chair if he couldn't walk - I have lots of methods, but I cannot do any of these by myself). At 6:45, I got a phone call from the agency saying that the aide's car was towed and she wouldn't be able to come, and they did not have anyone else available at that late notice. I did not hide my despair, saying that I would just have to deal with it, and we'd probably spend the night in the family room, with Vince sleeping in his recliner.
The only problem with spending the night downstairs, though, is that after I've stood Vince up from his recliner a few times to change Depends, I can't get him sitting back far enough in the chair (the aides can pull him up and back - I cannot, no way! - and believe, me, I've tried!). So he is farther down on the chair, with his feet hanging over, even when I lay the recliner down flat - then I put a hassock under his dangling feet - not a great position for an all-nighter. Not to mention my crankiness if I had to spend the night sleeping on the downstairs couch.
Meanwhile, I asked God "What are you thinking? How could you let that woman's car be towed when You know how I can't handle Vince without help?" I really wasn't being irreverent. Sometimes, though, I do think that I act a little too familiar with God; but I have developed a relationship of reliance on Him just like a wonderfully loving Father, which I have learned is what He wants from us. And I know He has a sense of humor. I know that God uses bad experiences to teach me lessons of faith, patience and endurance. So I did expect that God had a reason for leaving me stranded without help last night and I was still hoping He would pull the saving rabbit out of His hat. My favorite saying is "Nothing is impossible with God."
The agency lady must have felt sorry for me (and God was working wth me!), so she called back a little later to say that one of her male aides was finishing a job not far from us at 10 p.m., and he offered to come after that to help get Vince to bed. Normally the agency has a four-hour minimum for a shift, so I asked about that. She suggested he be paid for two hours. I declined that - way too much money for the aggravation I would have just explaining to the guy how to get here (I go through this routine with every new aide - and their English is bad so this is more difficult than you would think), and he would only need to be here for half an hour. So she offered one hour, and I accepted gladly.
So, in the 11th hour, at 10:20 p.m., a very friendly and energetic aide appeared at our door, and helped me get Vince to bed within half an hour. It wasn't easy, but we did it! I was SO grateful to the aide and to God for really pulling off this rescue!
Every inch of my body was aching, though, and I had a good cry, bemoaning that I had to be dependent on others to handle Vince's care. I took an ibuprofen, got into bed, and amazingly, was not hurting any more this morning. I went to Mass a very thankful lady, with my regular aide returned this morning.
And about God - He did hear my cries for help. Today's Psalm reading at Mass was Psalm 116, which is my favorite. It talks about God hearing our cries for help, and how much we need him, and how he rescues us! I laughed as I read it, because I felt God was really speaking to yesterday's trials, and I felt greatly relieved. Read it - it's all true!
Thursday, June 11, 2009
Frustration with Attitudes
I have noticed over the past years an attitude in my husband's doctors and therapists that really disturbs me. Because Vince is 74 and because he has a degenerative illness for which there is no cure, they don't try very hard to do anything for him - I know they're thinking it's not worth it.
Medicare's physical therapists don't want to work with Vince because they won't "improve" him; but if he doesn't get therapy, he will worsen; he needs therapy to maintain the strength he has left - which, by the way, is a lot! I have hired a private massage therapist who works Vince out every three weeks (I'd do it more often if I could afford it). He thinks Vince has the strength of someone in his fifties, and he does a wonderful job stretching Vince and working him out for an hour.
Then there're the doctors - they don't do research to try to find creative ways to help Vince; any medications he's gotten to help certain symptoms have been at my suggestion, from my reading of FXTAS research and contacting the FXTAS research doctors in Calif. Everyone has just given up on him! But I can't do that. What am I supposed to do? I love him, and I'm grateful for any words he can still say to me and any steps he can still take. I'm grateful for just his presence. I can't write him off like the doctors have.
Vince is completely healthy aside from his brain not functioning - what if they DO discover a cure while he is still alive? It's not likely, but it's not impossible. I'm not delusional, but I can't NOT do my best for Vince. What else can I do?
I know in the grand scheme of things, people don't feel as badly for sick older people as they do for sick younger people. But a person is a person, a creation of God, and it is for God to decide how long we live. As long as a person is alive, he/she deserves as many rights as anyone else. Are we just supposed to put sick people to bed and wait for them to die? I am just so sick of this attitude!
My husband is still alive - he still counts - he is as human as anyone else and I love him, and I will continue to do everything I can to give him a decent life, so help me God!!
Medicare's physical therapists don't want to work with Vince because they won't "improve" him; but if he doesn't get therapy, he will worsen; he needs therapy to maintain the strength he has left - which, by the way, is a lot! I have hired a private massage therapist who works Vince out every three weeks (I'd do it more often if I could afford it). He thinks Vince has the strength of someone in his fifties, and he does a wonderful job stretching Vince and working him out for an hour.
Then there're the doctors - they don't do research to try to find creative ways to help Vince; any medications he's gotten to help certain symptoms have been at my suggestion, from my reading of FXTAS research and contacting the FXTAS research doctors in Calif. Everyone has just given up on him! But I can't do that. What am I supposed to do? I love him, and I'm grateful for any words he can still say to me and any steps he can still take. I'm grateful for just his presence. I can't write him off like the doctors have.
Vince is completely healthy aside from his brain not functioning - what if they DO discover a cure while he is still alive? It's not likely, but it's not impossible. I'm not delusional, but I can't NOT do my best for Vince. What else can I do?
I know in the grand scheme of things, people don't feel as badly for sick older people as they do for sick younger people. But a person is a person, a creation of God, and it is for God to decide how long we live. As long as a person is alive, he/she deserves as many rights as anyone else. Are we just supposed to put sick people to bed and wait for them to die? I am just so sick of this attitude!
My husband is still alive - he still counts - he is as human as anyone else and I love him, and I will continue to do everything I can to give him a decent life, so help me God!!
Tuesday, June 2, 2009
Surviving the DMV
A few weeks ago, the ominous summons came in the mail - time to renew my husband's Virginia state photo I.D. card (in lieu of driver's license, since he can't drive anymore) - IN PERSON - every five years they need to take a new photo and this was the year. Naturally, the thought of taking Vince to the DMV in his very disabled condition filled me with dread, as it is always very crowded and you have to wait and wait and wait.
I tried to reach the DMV on the phone to see if they made any special accommodations for handicapped people - I just got busy signals all day. So, today being a day with no other obligations and the only day this week that rain was not predicted (you don't want to try to get Vince in and out of the car in the rain), I decided this was the day to get it done.
I thought I prepared well, remembering Vince's wallet, his I.D. renewal application, extra Depends, fruit bars in case of starvation, and a Reader's Digest magazine for Vince to look at while waiting. But - as soon as we drove up to the DMV, I realized I should have brought him a hat because the line was out the door and it was getting hot - I didn't think we'd have to be outside.
I asked my aide to wheel Vince over to some shade while I waited in line. After a few minutes, a security guard thankfully came up to Vince and allowed us to go inside and take a number. I was very grateful for that, but as it turned out, that was the end of our handicap "perks." We still had to wait an hour and a half to do our business. Our number was A092 and they were up to A079 when we came in - BUT, aside from A's, there are B's, C's, D's, and E's, all of which were being called faster than A's. Even an occasional G was thrown in. There were several windows with service reps, and every few minutes a whispery female robo-voice would announce "Now serving number E??? (they called more E's than other letters)" at window number whatever." I felt like I was at a Bingo game, waiting for A092 to be called so we could win. After about an hour, I found myself softly announcing the numbers with the robo-voice - there wasn't much else to do.
After about an hour, I also started quietly praying that we would actually get through this. Vince was fine - luckily, he's just always quiet and calm and out-of-it - but I was getting a little woozy because believe it or not - this modern-day DMV was not air-conditioned!! There were ceiling fans, and they probably can't run air-conditioning since the lines are always out the door and the door remains open, but I don't do well in humidity (which was climbing today).
Well, they finally called A092 to window 12, so off we went, feeling like I'd won a lottery. After the initial business, we were sent over to get Vince's photo taken. We were almost done - sort of. Because Vince was in a wheelchair, he needed to go to a special camera - attached to a separate computer which needed to be booted up and signed in by at least two service reps - this took some time, but then we were ready for the photo. That wasn't too easy, either, getting Vince to look at the correct spot and keep his head in the exact correct position (they are quite finicky about that). But again we prevailed, went back to window 12, paid our ten dollars, and we were on our way. The new I.D. card will arrive in the mail.
Phew!!! I feel so accomplished to have gotten that done - believe me, it IS a big deal from this caregiver's point of view. And we don't have to take Vince back to the DMV for another five years!!!!
I tried to reach the DMV on the phone to see if they made any special accommodations for handicapped people - I just got busy signals all day. So, today being a day with no other obligations and the only day this week that rain was not predicted (you don't want to try to get Vince in and out of the car in the rain), I decided this was the day to get it done.
I thought I prepared well, remembering Vince's wallet, his I.D. renewal application, extra Depends, fruit bars in case of starvation, and a Reader's Digest magazine for Vince to look at while waiting. But - as soon as we drove up to the DMV, I realized I should have brought him a hat because the line was out the door and it was getting hot - I didn't think we'd have to be outside.
I asked my aide to wheel Vince over to some shade while I waited in line. After a few minutes, a security guard thankfully came up to Vince and allowed us to go inside and take a number. I was very grateful for that, but as it turned out, that was the end of our handicap "perks." We still had to wait an hour and a half to do our business. Our number was A092 and they were up to A079 when we came in - BUT, aside from A's, there are B's, C's, D's, and E's, all of which were being called faster than A's. Even an occasional G was thrown in. There were several windows with service reps, and every few minutes a whispery female robo-voice would announce "Now serving number E??? (they called more E's than other letters)" at window number whatever." I felt like I was at a Bingo game, waiting for A092 to be called so we could win. After about an hour, I found myself softly announcing the numbers with the robo-voice - there wasn't much else to do.
After about an hour, I also started quietly praying that we would actually get through this. Vince was fine - luckily, he's just always quiet and calm and out-of-it - but I was getting a little woozy because believe it or not - this modern-day DMV was not air-conditioned!! There were ceiling fans, and they probably can't run air-conditioning since the lines are always out the door and the door remains open, but I don't do well in humidity (which was climbing today).
Well, they finally called A092 to window 12, so off we went, feeling like I'd won a lottery. After the initial business, we were sent over to get Vince's photo taken. We were almost done - sort of. Because Vince was in a wheelchair, he needed to go to a special camera - attached to a separate computer which needed to be booted up and signed in by at least two service reps - this took some time, but then we were ready for the photo. That wasn't too easy, either, getting Vince to look at the correct spot and keep his head in the exact correct position (they are quite finicky about that). But again we prevailed, went back to window 12, paid our ten dollars, and we were on our way. The new I.D. card will arrive in the mail.
Phew!!! I feel so accomplished to have gotten that done - believe me, it IS a big deal from this caregiver's point of view. And we don't have to take Vince back to the DMV for another five years!!!!
Sunday, May 31, 2009
Caregiver Couture
I am so glad we live in this century and not in past times when clothing was so uncomfortable and women needed shoes and purses to match every outfit. My husband and I have never been into haute couture, and now as ill and well spouses, respectively, I'm sure we're breaking every "fashion rule" there ever was. But in this situation, COMFORT reigns supreme.
I've realized that I can relieve some of my frequent caregiver's irritability by just putting on a looser pair of pants, putting my hair up, or taking off my shoes. My favorite attire is cotton sweats, jeans, tee shirts, knee-length workout capris, and anything that is cotton, solid-colored and loose. If I need to "dress up" for church or another occasion (which does not happen often in this caregiver's life), I wear pants that are not jeans or sweats, and add jewelry and a decent jacket or sweater.
Vince's wardrobe has been totally overhauled since I became his full-time caregiver several years ago. When he first became mostly immobile, he put on some weight, so all his clothing needed to be replaced. Plus, if he just sits all day and hardly goes anywhere, he needs to wear non-restricting clothing which is more comfortable for him and easier for me and the aides to change the Depends all day. So instead of the khakis and "regular" pants he used to wear, and button-down shirts, I got him elastic-waistband sweatpants, lightweight workout pants, and what they now call "lounge" pants for him to sleep in or wear during the day - heavier ones for winter, and lightweight ones for summer. Shirts are cotton tee shirts, long- or short-sleeved, and sweatshirts for winter. His clothing is all a few basic colors - blue, black, gray, brown, gold - that can be interchangeable.
In the past year or so, Vince has lost some of the weight he had gained, because his appetite has lessened. So, the same elastic waisted clothing still works. He's on the short side, so I just roll up the pants on the bottoms (I used to hem them at the start of his illness gig, but that got old quickly.)
So there are some compensations about having an ill husband who can't do anything. Our clothing budget is probably less than anyone's - our clothing comes mainly from Target and Old Navy, and I wear lots of hand-me-downs from my two daughters who tire quickly of their clothing and give it to me. I took Vince shopping for shoes several years ago and got a few pairs for going out. But at this point, the only outings he has are to doctors, so one pair of athletic shoes has been all he's needed. He wears slippers in the house and even on the odd occasion when the weather is okay for him to sit outside.
Another compensation for me is that I don't have to dress up. All the various jobs I had before I became a caregiver required only casual attire - I don't think I could stand a job where I had to dress in a suit or something "professional-looking" every day. I taught dance classes for 11 years, and really enjoyed the clothing that required - comfortable!!
I'm not sure why I'm even writing this blog - maybe to demonstrate that you don't have to stress over clothing or spend a lot of money on it in the well/ill spouse situation - after all, there have to be some POSITIVES in this not-so-pleasant lifestyle.
I've realized that I can relieve some of my frequent caregiver's irritability by just putting on a looser pair of pants, putting my hair up, or taking off my shoes. My favorite attire is cotton sweats, jeans, tee shirts, knee-length workout capris, and anything that is cotton, solid-colored and loose. If I need to "dress up" for church or another occasion (which does not happen often in this caregiver's life), I wear pants that are not jeans or sweats, and add jewelry and a decent jacket or sweater.
Vince's wardrobe has been totally overhauled since I became his full-time caregiver several years ago. When he first became mostly immobile, he put on some weight, so all his clothing needed to be replaced. Plus, if he just sits all day and hardly goes anywhere, he needs to wear non-restricting clothing which is more comfortable for him and easier for me and the aides to change the Depends all day. So instead of the khakis and "regular" pants he used to wear, and button-down shirts, I got him elastic-waistband sweatpants, lightweight workout pants, and what they now call "lounge" pants for him to sleep in or wear during the day - heavier ones for winter, and lightweight ones for summer. Shirts are cotton tee shirts, long- or short-sleeved, and sweatshirts for winter. His clothing is all a few basic colors - blue, black, gray, brown, gold - that can be interchangeable.
In the past year or so, Vince has lost some of the weight he had gained, because his appetite has lessened. So, the same elastic waisted clothing still works. He's on the short side, so I just roll up the pants on the bottoms (I used to hem them at the start of his illness gig, but that got old quickly.)
So there are some compensations about having an ill husband who can't do anything. Our clothing budget is probably less than anyone's - our clothing comes mainly from Target and Old Navy, and I wear lots of hand-me-downs from my two daughters who tire quickly of their clothing and give it to me. I took Vince shopping for shoes several years ago and got a few pairs for going out. But at this point, the only outings he has are to doctors, so one pair of athletic shoes has been all he's needed. He wears slippers in the house and even on the odd occasion when the weather is okay for him to sit outside.
Another compensation for me is that I don't have to dress up. All the various jobs I had before I became a caregiver required only casual attire - I don't think I could stand a job where I had to dress in a suit or something "professional-looking" every day. I taught dance classes for 11 years, and really enjoyed the clothing that required - comfortable!!
I'm not sure why I'm even writing this blog - maybe to demonstrate that you don't have to stress over clothing or spend a lot of money on it in the well/ill spouse situation - after all, there have to be some POSITIVES in this not-so-pleasant lifestyle.
Saturday, May 30, 2009
Business as UNusual
It took several years of aggravatingly hard work, but I have pretty much cleared up all the financial complexities that face the wife of a man who becomes mentally disabled and who, because of the encroaching disability which is not recognized at first, has gotten into lots of, well, financial complexities.
That is - except for the outstanding credit card that was still in Vince's name. He's had the card for 18 years, and for the past several years I have been authorized to use the card. HOWEVER, when I wanted to cancel the card because we don't need it anymore and haven't used it in years, the credit card company (ccc) would not do it without Vince's personal permission. I tried to explain to them that he was mentally disabled and speaking to him would yield no response from him, but that is the only way they would cancel the card.
So, after receiving several renewals of this card, today I decided to buckle down and play the game with the ccc. I got phone extensions for Vince and myself, called the ccc, went through the exhaustive menu until reaching a person. She confirmed that she would in fact need to speak to Vince and offered her condolences to me that he was ill. She asked Vince if he gave permission to cancel the card - of course he did not answer, so I had to keep saying "Just say YES." Finally he said "YES", which was all they needed. Done! But not so fast.......
The ccc rep politely explained to me that cancelling after such a long inactive period could harm Vince's credit report - even though we have perfect credit and the card was always paid off on time. What I think is that that was a ploy to get me to keep using the card. The rep tried several other ploys to get me to keep the card, like if I get to my limit on my other cards, I'd still have this one. No thank you, I said. I can't spend that much money.
I've gone through this charade before with Medicare and other companies that insist on speaking to Vince. I can understand that they are just protecting him, but on the other hand, who's to know if I just get another man to stand in for Vince on the phone?
Just another ridiculous hoop for the well spouse to jump through!! Keeps us in shape, right?
That is - except for the outstanding credit card that was still in Vince's name. He's had the card for 18 years, and for the past several years I have been authorized to use the card. HOWEVER, when I wanted to cancel the card because we don't need it anymore and haven't used it in years, the credit card company (ccc) would not do it without Vince's personal permission. I tried to explain to them that he was mentally disabled and speaking to him would yield no response from him, but that is the only way they would cancel the card.
So, after receiving several renewals of this card, today I decided to buckle down and play the game with the ccc. I got phone extensions for Vince and myself, called the ccc, went through the exhaustive menu until reaching a person. She confirmed that she would in fact need to speak to Vince and offered her condolences to me that he was ill. She asked Vince if he gave permission to cancel the card - of course he did not answer, so I had to keep saying "Just say YES." Finally he said "YES", which was all they needed. Done! But not so fast.......
The ccc rep politely explained to me that cancelling after such a long inactive period could harm Vince's credit report - even though we have perfect credit and the card was always paid off on time. What I think is that that was a ploy to get me to keep using the card. The rep tried several other ploys to get me to keep the card, like if I get to my limit on my other cards, I'd still have this one. No thank you, I said. I can't spend that much money.
I've gone through this charade before with Medicare and other companies that insist on speaking to Vince. I can understand that they are just protecting him, but on the other hand, who's to know if I just get another man to stand in for Vince on the phone?
Just another ridiculous hoop for the well spouse to jump through!! Keeps us in shape, right?
Saturday, May 23, 2009
The MRI Vacation
You know you're a Well Spouse when you have an MRI and feel like you're on vacation!
Last week I had a breast MRI just for screening purposes (because my mother died of breast cancer), and it came out fine.
Once I got over the fear of dying from being injected with contrast dye (I was warned that death is possible from an allergic reaction, although it's never been reported!), I turned myself over to God and decided to enjoy the half hour of lying still. It was my first MRI, but I was not afraid of claustrophobia or the noise - I'd watched my husband have MRIs and it didn't seem that bad - no pain involved. And, it was kind of nice to be taken care of by all the attending medical technicians - just as long as I was not really sick.
So, into the narrow dark tube I went, putting everything from the natural world out of my mind, breathing rhythmically and peacefully, taking full advantage of this separation from caregiving, finances, chores, and all the woes of our troubled society. I kept yielding myself up to God, without any resistance, feeling sure that if the MRI did not come out well, it would be God's will and He would lead me through whatever I needed to deal with.
If I thought at all about this world, it was a few minutes of imagining I was lying on the beach and the MRI noise was the ocean rumbling beside me; the beach is my favorite place, and my husband's illness has kept me from "my" beach for years.
As the MRI ended and I rolled out of the tube, the attending technician asked if I were okay - I said, "Yes, it was like a vacation for me." She didn't know I was a caregiver, nor did she know anything about my less-than-charming daily life, so she probably thought I was some kind of nut. But I felt rested, peaceful, and cared for!
Last week I had a breast MRI just for screening purposes (because my mother died of breast cancer), and it came out fine.
Once I got over the fear of dying from being injected with contrast dye (I was warned that death is possible from an allergic reaction, although it's never been reported!), I turned myself over to God and decided to enjoy the half hour of lying still. It was my first MRI, but I was not afraid of claustrophobia or the noise - I'd watched my husband have MRIs and it didn't seem that bad - no pain involved. And, it was kind of nice to be taken care of by all the attending medical technicians - just as long as I was not really sick.
So, into the narrow dark tube I went, putting everything from the natural world out of my mind, breathing rhythmically and peacefully, taking full advantage of this separation from caregiving, finances, chores, and all the woes of our troubled society. I kept yielding myself up to God, without any resistance, feeling sure that if the MRI did not come out well, it would be God's will and He would lead me through whatever I needed to deal with.
If I thought at all about this world, it was a few minutes of imagining I was lying on the beach and the MRI noise was the ocean rumbling beside me; the beach is my favorite place, and my husband's illness has kept me from "my" beach for years.
As the MRI ended and I rolled out of the tube, the attending technician asked if I were okay - I said, "Yes, it was like a vacation for me." She didn't know I was a caregiver, nor did she know anything about my less-than-charming daily life, so she probably thought I was some kind of nut. But I felt rested, peaceful, and cared for!
Tuesday, April 28, 2009
anniversary - continued
Despite my pre-anniversary "apprehension", when the day finally came, it threw me into such a depression that I couldn't write about it at the time. It was worse than I thought it would be.
The one good thing about the day was the beautiful weather which enabled me and our aide to take Vince to Mass at noon (it's very difficult to get Vince anywhere, so he doesn't go to church anymore - a visiting minister from the church brings him Communion every Sunday). We marked the day by both receiving Holy Communion on an anniversary for the first time. (At our wedding, which was a Catholic wedding, I was not to be a Catholic for five more years, so only Vince received Communion.) I felt good about that and the church was beautiful with the post-Easter flowers.
But a few hours later that afternoon, I just got so depressed and fell apart, crying and crying. Vince was having one of his less-alert days, so he wasn't talking at all, let alone being aware that we should be celebrating lasting together for 10 years of this catastrophic illness of his.
By that night, I was crying out my despair to my Facebook friends and the Well Spouse forum. Friends were supportive, but nothing could replace my husband's lack of ability to do anything! It seemed that the years of progress I had achieved as a Catholic with my new faith in God were just being destroyed - I wanted so much for our marriage to mean something and felt so EMPTY. The feelings I felt so strongly were EMPTINESS and BARRENNESS.
I had assumed I would have gotten us some gooey chocolate cake, which I like to do on special occasions, but I was afraid if I ate chocolate, I'd just get more depressed. I tried a glass of wine, which I rarely do, and it did nothing.
The next day was thankfully my granddaughter's 3rd birthday party which I was able to go to, and had a great time as I always do with my daughters and grandbabies. But that night I was losing it again, and just got angry at Vince's illness, angry that everything was so meaningless, and angry that there could be no celebration.
Then the next morning, Sunday morning, I realized that I was really out of balance, and needed to just do something for ME - like buy myself a gift or whatever. But I couldn't think of anything that would make me feel better - nothing in this world could replace my husband's lack of health. I realized that this was something only God could heal in me. Then I remembered that our church was having an extra hour of Confession that day because it was Divine Mercy Sunday. It's usually very difficult for me to get to Confession because hours are limited, and don't mesh really well with when my aides are here. But I went that Sunday afternoon, spoke to my priest, and he knew just what to say to turn me around again. It was amazing! God spoke through the priest, and was able to restore the positive perspective that I had worked and prayed for for several years. And I have been okay since then - and it's over a week later.
I get small bouts of depression now and then - who wouldn't with a husband whose mind has been taken from him as well as his physical abilities? But my walk with God has taught me that there really is another way to see this situation, and that I really am blessed in so many ways.
So this past weekend, I finally bought the big piece of gooey chocolate cake, and Vince and I shared it on Saturday and Sunday - with ice-cream. That was something we could both enjoy together, so I am thankful for that.
The one good thing about the day was the beautiful weather which enabled me and our aide to take Vince to Mass at noon (it's very difficult to get Vince anywhere, so he doesn't go to church anymore - a visiting minister from the church brings him Communion every Sunday). We marked the day by both receiving Holy Communion on an anniversary for the first time. (At our wedding, which was a Catholic wedding, I was not to be a Catholic for five more years, so only Vince received Communion.) I felt good about that and the church was beautiful with the post-Easter flowers.
But a few hours later that afternoon, I just got so depressed and fell apart, crying and crying. Vince was having one of his less-alert days, so he wasn't talking at all, let alone being aware that we should be celebrating lasting together for 10 years of this catastrophic illness of his.
By that night, I was crying out my despair to my Facebook friends and the Well Spouse forum. Friends were supportive, but nothing could replace my husband's lack of ability to do anything! It seemed that the years of progress I had achieved as a Catholic with my new faith in God were just being destroyed - I wanted so much for our marriage to mean something and felt so EMPTY. The feelings I felt so strongly were EMPTINESS and BARRENNESS.
I had assumed I would have gotten us some gooey chocolate cake, which I like to do on special occasions, but I was afraid if I ate chocolate, I'd just get more depressed. I tried a glass of wine, which I rarely do, and it did nothing.
The next day was thankfully my granddaughter's 3rd birthday party which I was able to go to, and had a great time as I always do with my daughters and grandbabies. But that night I was losing it again, and just got angry at Vince's illness, angry that everything was so meaningless, and angry that there could be no celebration.
Then the next morning, Sunday morning, I realized that I was really out of balance, and needed to just do something for ME - like buy myself a gift or whatever. But I couldn't think of anything that would make me feel better - nothing in this world could replace my husband's lack of health. I realized that this was something only God could heal in me. Then I remembered that our church was having an extra hour of Confession that day because it was Divine Mercy Sunday. It's usually very difficult for me to get to Confession because hours are limited, and don't mesh really well with when my aides are here. But I went that Sunday afternoon, spoke to my priest, and he knew just what to say to turn me around again. It was amazing! God spoke through the priest, and was able to restore the positive perspective that I had worked and prayed for for several years. And I have been okay since then - and it's over a week later.
I get small bouts of depression now and then - who wouldn't with a husband whose mind has been taken from him as well as his physical abilities? But my walk with God has taught me that there really is another way to see this situation, and that I really am blessed in so many ways.
So this past weekend, I finally bought the big piece of gooey chocolate cake, and Vince and I shared it on Saturday and Sunday - with ice-cream. That was something we could both enjoy together, so I am thankful for that.
Wednesday, April 15, 2009
10th Anniversary!
So, in two days it will be my and my ill spouse's 10th wedding anniversary. I am approaching it with a mix of apprehension and a yearning to celebrate. Apprehension because I know we can't have a real celebration because of the Fragile-X illness that has been plopped in the center of our lives since right after our wedding (even before, but I didn't realize at the time that my husband's cognitive abilities were being compromised). But I also want to shout from the rooftops that WE MADE IT TO 10 YEARS AND STILL LOVE EACH OTHER COMPLETELY!!! And I also want to shout that GOD HAS BEEN THE NECESSARY THIRD THREAD OF OUR MARRIAGE (AS WE WERE TOLD BY THE PASTOR AT OUR WEDDING), AND GOD HAS ENABLED US TO ACHIEVE 10 YEARS OF MARRIAGE.
For the past couple of years, our well spouse/ill spouse life has stabilized (for now, anyway) and things have been relatively peaceful. I have enough help from home health aides that I can have a life of sorts, and my husband Vince is safe and content in his own home. Before things stabilized, however, we had years of struggling with getting a diagnosis of Vince's mysterious illness and keeping up with all of his physical and mental deterioration. There were times in the early years of our marriage when I wasn't sure Vince really loved me anymore - that my marriage to him was some sort of a cosmic joke. I didn't realize he was having cognitive deficits because his brilliant brain was atrophying.
Luckily, I was drawn into Catholicism, Vince's faith, when his priest came to visit us. I really didn't think I wanted to be Catholic, but I read the books the priest kindly gave me. One book gave stories of people in horrible situations who placed their lives in God's hands and ended up being okay! I wanted to see if that could happen to me (it did, after some years of building a relationship with God!). Another book, which explained the Catholic faith, in its discussion of marriage, said that God promises to stay in the marriage and help the couple through difficulties. Well, I never forgot that one sentence, and would call on God when Vince and I would be having an awful time communicating and I was feeling totally desperate - peace would then descend on us. God has been faithful to me as I have stayed close to Him through this whole 10-year journey. I just handed over my life to Him, not knowing what to do several years ago, and I watched for His answers in the form of people and opportunities that He placed in my life (this includes finding Well Spouse!).
Meanwhile, Vince tells me often that he loves me with all his heart - and he has trouble saying anything, for the most part - very few words come out of his mouth these days. And I do believe him and love him too. This is miraculous, considering how not-fun and not-easy our life together has been.
So, as for our 10th anniversary, I have been asking God to just show us His presence on that special day. I hope it can be a special day in some way. I'll let you all know....
For the past couple of years, our well spouse/ill spouse life has stabilized (for now, anyway) and things have been relatively peaceful. I have enough help from home health aides that I can have a life of sorts, and my husband Vince is safe and content in his own home. Before things stabilized, however, we had years of struggling with getting a diagnosis of Vince's mysterious illness and keeping up with all of his physical and mental deterioration. There were times in the early years of our marriage when I wasn't sure Vince really loved me anymore - that my marriage to him was some sort of a cosmic joke. I didn't realize he was having cognitive deficits because his brilliant brain was atrophying.
Luckily, I was drawn into Catholicism, Vince's faith, when his priest came to visit us. I really didn't think I wanted to be Catholic, but I read the books the priest kindly gave me. One book gave stories of people in horrible situations who placed their lives in God's hands and ended up being okay! I wanted to see if that could happen to me (it did, after some years of building a relationship with God!). Another book, which explained the Catholic faith, in its discussion of marriage, said that God promises to stay in the marriage and help the couple through difficulties. Well, I never forgot that one sentence, and would call on God when Vince and I would be having an awful time communicating and I was feeling totally desperate - peace would then descend on us. God has been faithful to me as I have stayed close to Him through this whole 10-year journey. I just handed over my life to Him, not knowing what to do several years ago, and I watched for His answers in the form of people and opportunities that He placed in my life (this includes finding Well Spouse!).
Meanwhile, Vince tells me often that he loves me with all his heart - and he has trouble saying anything, for the most part - very few words come out of his mouth these days. And I do believe him and love him too. This is miraculous, considering how not-fun and not-easy our life together has been.
So, as for our 10th anniversary, I have been asking God to just show us His presence on that special day. I hope it can be a special day in some way. I'll let you all know....
Sunday, April 12, 2009
A Well Spouse Easter
Holidays are usually rough on well spouses, depending on how ill the ill spouse is. My husband is totally disabled in mind and body, so this tends to make holdiays even more depressing than regular days. The regular days have become more routine and less depressing as I have achieved a level of balance with my situation (at least for now, until the next crisis!).
Holidays get pretty lonely, though. I went to Mass this morning, anxious to see the church alive with flowers and joy after the solemness of Lent. It was mobbed, as I expected, and traffic getting in was difficult. But what I didn't expect was when I got into the church and it sounded like the bleachers at a sports event. Whereas at Mass, it is always quiet and most people come in and get down on their knees for some quiet prayer before Mass starts, today it was full of non-kneeling people chattering about everything except the Lord whose Resurrection we celebrate today.
Like one of my fellow well spouses who has called herself a curmudgeon after 30 years of caregiving, I was feeling curmudgeonly myself in church, and irritated that I could not have quiet time with Lord as I always do before Mass (that's what keeps me sane as a well spouse!). When Mass started, it quieted down and Mass was lovely. After Mass, I stayed a few minutes after the others had left to have my quiet time with the Lord. That was calming, and I didn't have to deal with the traffic getting out.
Now for the rest of the day. It is lonely seeing all the families at church, knowing they're going home for their "normal" family celebrations. My husband and I are alone today, except for our home health aides. I used to make holiday dinners for any of our children that were around, but I ran out of steam for that after a few years of caregiving. Any well spouse will understand that. Besides, my husband can't even eat the Easter lamb he used to have every year (he would make it - he was a great cook, way better than I am) - he chews meat and then never swallows it, so I have to then pry it out with a spoon. So, I don't give him meat anymore, except for hamburger, which we will have for our Easter dinner tonight - he loves that too.
Usually on holidays I try especially to be good to myself - try to relax in some way - play piano, watch TV, read - when the basic chores are done. I suppose I'll do that today. My husband doesn't care or isn't aware of holidays or anything, so he's just fine - always quiet and content. Barely talks. Ever.
So that's it! God is good and I know I'll be fine, and I'm not as depressed as I used to get on holidays. If I start to feel sad, or even cry, I know it's okay - it's normal to feel sad in my situation and I know that it passes. These days, I am okay more than non-okay, so I can deal with the sadness, by God's grace. I know that I can always read God's words in the Bible or prayer books - and that always comforts me. So I'm okay. I'm not alone - God is very much with me, and He is the best company one could have!
Holidays get pretty lonely, though. I went to Mass this morning, anxious to see the church alive with flowers and joy after the solemness of Lent. It was mobbed, as I expected, and traffic getting in was difficult. But what I didn't expect was when I got into the church and it sounded like the bleachers at a sports event. Whereas at Mass, it is always quiet and most people come in and get down on their knees for some quiet prayer before Mass starts, today it was full of non-kneeling people chattering about everything except the Lord whose Resurrection we celebrate today.
Like one of my fellow well spouses who has called herself a curmudgeon after 30 years of caregiving, I was feeling curmudgeonly myself in church, and irritated that I could not have quiet time with Lord as I always do before Mass (that's what keeps me sane as a well spouse!). When Mass started, it quieted down and Mass was lovely. After Mass, I stayed a few minutes after the others had left to have my quiet time with the Lord. That was calming, and I didn't have to deal with the traffic getting out.
Now for the rest of the day. It is lonely seeing all the families at church, knowing they're going home for their "normal" family celebrations. My husband and I are alone today, except for our home health aides. I used to make holiday dinners for any of our children that were around, but I ran out of steam for that after a few years of caregiving. Any well spouse will understand that. Besides, my husband can't even eat the Easter lamb he used to have every year (he would make it - he was a great cook, way better than I am) - he chews meat and then never swallows it, so I have to then pry it out with a spoon. So, I don't give him meat anymore, except for hamburger, which we will have for our Easter dinner tonight - he loves that too.
Usually on holidays I try especially to be good to myself - try to relax in some way - play piano, watch TV, read - when the basic chores are done. I suppose I'll do that today. My husband doesn't care or isn't aware of holidays or anything, so he's just fine - always quiet and content. Barely talks. Ever.
So that's it! God is good and I know I'll be fine, and I'm not as depressed as I used to get on holidays. If I start to feel sad, or even cry, I know it's okay - it's normal to feel sad in my situation and I know that it passes. These days, I am okay more than non-okay, so I can deal with the sadness, by God's grace. I know that I can always read God's words in the Bible or prayer books - and that always comforts me. So I'm okay. I'm not alone - God is very much with me, and He is the best company one could have!
Tuesday, April 7, 2009
More Than We Can Handle?
People, including myself a few years ago, can be very cynical about the cliche "God doesn't give us more than we can handle." I was feeling buried way under more than I could handle in my first years of marriage and caregiving to my husband (the caregiving followed close on the heels of the wedding!). But the more I got to know God and the more I trusted Him to guide my life, and the more miracles I saw in my life to help me cope, I realized that God doesn't give us more than we can handle, BUT BUT BUT the catch is: we have to handle it with God. He doesn't allow more bad stuff to happen to us than we can handle WITH HIS HELP. Because, with God's help, I have been able to handle it, and the less awful it has become and the more blessings I see in my life and my marriage to my very mentally/physically impaired husband. And I have gained a lot of emotional growth and self-respect. The only credit I take for what I have accomplished physically and emotionally over the years is that I have allowed God to help me and have constantly asked for His help - He has performed miracles day after day - and on days when I get really down, I know that He will lift me up somehow - because it has happened time and time again.
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