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!!!!

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.

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?

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!