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.
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