Saturday, September 15, 2007

Waiting on the doctor

Thursday Dad had this "jerking" - involuntary movements of both hands and his right leg. Really it began Wednesday afternoon but became much worse on Thursday. The jerking - which is the best word I can use to describe what was happening - was severe enough that he could not feed himself. I don't know if it is Tardive Dyskinesia or not but it is kind of like I imagine that to be.

He let me feed him breakfast and lunch but by supper he was very combative and refused to let go of the spoon. I put a pad in his lap (turned over - see how clever I've gotten!) and tried several times to feed him but it just made him really angry at me. I think he believes that I've caused this. Of course that's my great fear, too, that I've caused it with some medication. So it doesn't take much to make me feel guilty which makes me angry which makes everything else worse.

Finally I gave up feeding him and just let him do the best he could which was what he wanted. It was so hard to watch him. His determination remains. The disease hasn't taken that so far. I can imagine myself fighting to retain the ability to feed myself. I would just stop eating if I lost that ability, if I could think about it and will it so. But that's the question isn't it? Will Alzheimer's leave you with thought and will? If anyone can it will be my dad.

I called my hospice nurse Thursday afternoon. She was in an all day seminar so I had to talk to her supervisor who has never seen dad. That angered me. Again I'm on knife edge. I described the jerking and discussed the drugs we're using. All she knew about Dad was the chart they had. Angry. Angry. Angry.

I believe the Temazepam is the most likely suspect since it is new. I counted the capsules and only 5 have been used and they are the lowest dosage. I don't really find that symptom listed as a side affect but there was a mention of "tremor" on one web site.

She arranged a doctor visit for Friday. On Thursday I thought to myself "that won't happen and if it does there will be nothing to see." She wanted me to keep the drugs the same but that's ridiculous. I omitted the Temazepam since I suspect it and it is definitely not needed for sleeping. The other drugs I left as is. I don't really think it is the Geodon but that's my other best suspect.

Then I started worrying about telling Mrs. Flinty that our time together would again be lost. Another disappointment for her. Sometimes my entire life seems to consist of disappointing people I love.

Dad went to sleep about 9:15 Thursday evening and slept until about 11:30 Friday morning. I checked him several times during the night and he really was sleeping so hard - with his mouth open - that's new - doesn't look good to me. I figured it would be a big mess Friday morning but it wasn't. Probably because he didn't eat or drink very much. Lack of urine output is never a good sign. That's kind of funny.

I canceled my aide until evening. Canceled my brother for overnight. I do a lot of canceling stuff.

Dad made it to the porch on Friday afternoon. He slept in his chair and occasionally noticed a jogger or car or a big truck. His communication is worse. I waited. I do a lot of waiting.

We listened to music. My brother got dad a CD recored by Dad's last pastors. It is really quite good. My brother told me he wanted to see if we could get them to sing at Dad's funeral. I'm not going to plan Dad's funeral. I don't have the energy for it. My brother can do it. I don't even want to go.

Doc never showed. I got dad upstairs again and changed - again very little output but very little input - and fixed supper. He fed himself - almost no jerking - but still some. He ate about 1/2 of his normal - took almost an hour.

Aide arrived at 5 pm. She put up dirty dishes the other day. Really irritated me and I spoke to her about that and a few other things. I think I've succeeded in making her afraid to do anything now. Probably my scintillating personality. May need to talk to the agency.

I left to pick up Mrs. Flinty and her mom and sister. Her mom's 86th birthday is Saturday and we took her to her restaurant of choice for supper Friday evening. It was a relatively new restaurant of a pretty good local, small chain. One man of our party returned from the men's room and announced that there were flat screen TV's mounted above each urinal. The girls didn't really understand this and so I tried to explain some of the unwritten rules of being a man and needing someplace to fix your gaze during the process of urinal use. I don't think they really got it. They were wondering why there weren't flat screens in the doors of the women's room.

This isn't a photo from the restaurant but one I found on the Internet. Thought I needed a picture. I learned a lot about urinals writing this post. More really than I wanted to know. There are even urinals for women. And there are pictures of urinals posted on the Internet from all around the world including the Taj Mahal.

Who would have thunk it?

During my Friday waiting time forum and blog reading I happened to think about my favorite Dallas area restaurant, Javiers. Gosh I haven't been there in so long.

Then it was back to my mother-in-law's house for some ice cream and cake courtesy of Mrs. Flinty. She said when she ordered the cake they asked if she wanted butter icing or whipped icing and she said "white icing." I didn't realize there were choices with icing except color. I thought her response was funny - something I would have said. We had the whipped icing and whipped icing is pretty good.

We didn't sing happy birthday. I would have except that I don't sing plus I've been working on when to keep my mouth shut.

I made it home about 10:15. Dad was asleep in exactly the same position I left him. I was gone 5 hours and 15 minutes.

He called for me this morning at 4:45. Well, he was hollering something anyway. I changed him. Still not much output but definitely some. He went right back to sleep.

I think I'm up for the day - probably head down to exercise an hour or two. I feel like I need to just exercise until exhaustion sets in.

This is kind of a whiny, needy post - not sure I want to publish - oh what the heck.


nancy said...

i am so sorry that is happening with your dad. you feel so helpless don't you? that's really irritating to me that the hospice doc never showed. did they ever call to say s/he wasn't coming?

i'm glad you stopped the temazepam. you never know how drugs may affect someone with AD. and it sounds as if the tremors were slightly better without it. could be purely coincidental but you never know.

i'm glad too that you still got out for dinner friday, albeit short.

you, your dad and mrs. flinty will be in my prayers. i hope for a better today for all of us.

Lori1955 said...

Flinty, Helen has been doing the jerking thing too. When I told the nurse, the response was Hmmmmm. I was thinking it was either muscle spasms or little siezures. She hasn't had any med changes. Now that your dad is doing this too, I am thinking it may be part of the disease.

flintysooner said...

I think it is the Temazepam because no jerking at all today. I can live with the disease and what it is doing but I don't want to make things worse with drugs.

The drugs are just so tricky.

The doctor deal irritates me because he will come eventually and he may or may not see anything. I just don't see the point to it. I don't blame him because I know he gets involved in really critical cases.

cornbread hell said...

here's the deal, man. *whine* all you want. mostly i don't post the more worrisome stuff because i tend to hold it in, but i know that's not healthy.

vent, flinty. we love you and ALL of your posts.

btw, here's a funny blog about waiting for a doc, albeit much different than your wait.

~Betsy said...

I think the waiting and the unknowns are the worst part. Constantly questioning - does he/she need this med? Will it hurt? Help?

I hope you and dad are having a better day today. Maybe Mrs. Flinty could come for a visit soon since dad isn't as active? You'd probably have more time together anyway.

Your comments about the funeral really struck a chord with me. My brother has mentioned this or that about Mom's and I feel the same way. I really don't want to deal with all the condolence wishers - where were they when I needed them?

Hang in there. You're a really admirable son.

redcedar said...

I think your remark about your father's funeral is very interesting. My husband and I both lost our mothers in the past month. They were both sick for a very long time. I was my mother's caregiver, and my husbands father (93) took care of his wife. Since we live on the same farm with my husband's parents, my husband was sort of the caregiver for the caregivers. That is, he did everything his father needed while his father took care of his mother, including talking and talking and talking about every daily event. He also talked and talked with me every step of the way.

My husband and I, and his father, have noticed a very big difference between our attitude toward the funerals of these two beloved old women who have recently died, and the attitude of family members who were not involved in the caregiving. Not one of the three of us caregivers had the slightest interest in the funerals. Other people carried the ball, and we felt as if we were barely there.

I've been wondering about the relationship between caregiving at death, and mourning the death of someone for whom you were not the caregiver. This is still a new theme for me in my life, but I'm hoping to hear more about it from others who have been there. Thanks as always for talking about everything, flintysooner.

flintysooner said...

My cousins just buried their mom who was the same age as my dad. She had dementia, too.

They just had a very small graveside service with their immediate families. Several of us would have gone to the funeral but they didn't really want that.

At first it seemed wrong to me. But when I put myself in their place I really do understand and agree with their decision.

Another thing is age, too. Dad's 90 and there's really no one of his contemporaries to attend.

It's a topic I probably need to think more about though. I think you're right that it is different to those who have been so involved in the caregiving.