I've noticed that for the past few days my DH is holding his left hand "cupped" (as though he might be holding something.) I asked was it hurting, he said no, but continued to hold it that way, even as he ate his meal. I opened his hand and it looks as though the tendon ( I guess thats what it is) in the center of his palm stand out more than in the other hand. Have any of you ever seen this?
Also, and I don't think this is related to the hand, but DH has been worse for the last few days....just can't seem to get things straight as far as where he is, where he wants to go, how to open fridge, etc. Nothing has changed with meds and he is still on the MCT Fuel which I was convinced had helped him over the last weeks. Any ideas, or is this just progression?
My husband's hands are contracting also. This happens with the disease. I have talked with the people at the facility he is at and observed how it is handled with other patients. There are a couple of things you can do about it. Warm them up (a heating pad will help this) and the muscles will relax some so that you can open them better. Have him hold something in them (a rolled up towel works well or a stuffed animal if they will hang onto them). You can also put splints on his hands at night so that they stay open like.
I also asked if it was bad to allow this to happen. The answer was it can be because the hands get all sweaty and when they hold them that tightly, it can cause the skin to break down causing a whole bunch of nasty problems.
The other possibility is that he has developed Dupuytrens Contracture, a condition in which the tendons in the palm of the hand shorten, causing the fingers to bend or cup. Dupuytrens has nothing to do with AD. You should check with your doctor, who should be able to decide which it is.
Geez, that sounds really bad! One of the ladies in my caregivers group takes care of her AD Mother, who is confined to bed and keeps her hands up next to her chin/throat. They are curled and she rubs her neck raw with her fist. So sad!
Nancy, they can and do get into some very unfortunate positions and have some unfortunate things that they do like repetitive rubbing that rubs them raw. There are some on my husband's floor that are also very curled up. These people are often holding stuffed animals that seem to help with the problem. This disease can be very cruel.
These are but a few of the side effects of this devil disease that most uninformed observers never know. It's so much more than a "loss of memory", which is what most people think Alzheimer's is about.
Very few know about the rages, the inability to walk, to feed themselves, and eventually swallow and breathe.
I saw this! My SIL lived with AD until she was totally blind, could not swallow, and eventually could barely breathe. Her husband kept her at home and sat by her bedside all day every day, tending to her with such tenderness. Until then, I had no idea that one could live as long as she did with AD. One could actually see the degenerating of the brain as it moved from one sense to the other. I pray my DH will NOT live that long. (I hope you all will not think ill of me for saying that.)
Any disease of the brain and/or that affects muscles (MD, MS, AD, etc) can affect them. My BIL had his first finger that stuck out straight. The last year there was no way to bend it cause the tendon had contracted - it caused him much pain if you hit it. It is so horrible and since AD patients loose sensory we never really know how much pain it may be causing them.
NancyB, I doubt that any of us would "think ill" of you for wanting your DH to avoid the agony of end-stage AD. Most of us would rather have them die of a heart attack in bed after they reach stage 7. My DW is in stage 6, and still seems to enjoy life and being with me. But, I would prefer that she go now rather than get into the stages you have described. This is where you have to make decisions on treatments such as statins, Blood Pressure meds, Diabetic meds, etc.
My husband was one of those who went thru all the stages and had a prolonged death. His arms were contracted at the elbows and his fists were tucked up under his chin. It was hard trying to keep rolled up washcloths in his hands and then to make sure that he didn't get a fungus in the bends of his elbows...it was one of the horrible parts of this disease.
NancyB, I prayed every day that my husband, who was lying helpless and unresponsive in his bed, would die in his sleep. I would "think ill" of someone who would want to prolong someone's life when Stage 7 symptoms and total system breakdown occurs. I watched my husband in this condition for almost 5 years....He was young and otherwise healthy...that is why he lived so long in the end stage.
I think of March 16, 2008 (the day he died) as his personal Independence Day..... "
Nancy B, thanks for having the courage to say out loud what many of us are thinking privately. While my Stage 6c DW has been having a run of good days recently, and we treasure these, I would certainly prefer to see her go now than to have her undergo some of the stage 7 agonies you hear about.
Nancy B, I would rather my dh's life would end before this stinking disease takes its toll. He is in approximately stage 6a with FTD, has his good and bad days but if given a choice?...Yes, marsh, you said it well. We are off statins now and maybe bp meds tomorrow. Heartwrenching decisions.
If I were to have my 'druthers, as they say, I will say that I am so graeful my DH does nott have FTD. I had not heard of that particular diagnosis before I began reading all of your stories on this web site, and it appears as if it is much, much harder on the caregivers for two reasons. You are all younger couples - many times with children, it progresses so much faster (is that not true?) and they have more rages and are more aggressive (is that not also true?) It just seems so much worse on the caregiver, mainly. Bless you.
To all of you who don't want to prolong the suffering, I feel the same way. I think the love we have for the wife, husband or parent is what makes us feel this way. Even now, when I think of how "alive" my husband was just a couple of years ago, I think of the song (Diamonds and Rust) that said "wish we both could have died then and there." I don't really wish for death just to avoid some unpleasant things, but this is a whole different world for all of us.
When I ask my husband if his hand hurts he say "no" and he doesn't have any problem straightening his fingers....I think if he continues to hold his hand this way it would not be a good thing. I've had him start stretching his fingers and opening/closing his hands. He has a doctor's appointment in two weeks so I may wait on having this addressed.
Sandi, if one of our beloved cats or dogs was suffering the way your husband did, we would have requested the vet to give that pet a merciful death. I know not everyone will agree with me, but I hope to live long enough to see the day when that is possible for loved ones clearly beyond all hope or help.