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!!

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.

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 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?. . . . . . . .

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!

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!

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!!

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!!!!