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!
Wednesday, August 5, 2009
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?. . . . . . . .
Subscribe to:
Posts (Atom)
