Hello everyone... haven't posted much latley but I read the messages everyday. When I'm not active on the board it usually means things are not going well. I try to have my thoughts in order before I comment here but today I need to say what's on my mind. I got a call from the NF on Wed. that John wouldn't/couldn't get out of bed or walk. Although his movements had become slower and more hesitant recently, I was really shocked by the news. LONG story short, I met him at the ER where they did bloodwork,ekg,cat scan,x-ray and urinalysis looking for a cause. None was found. I asked him 20 different ways if his legs hurt but he just didn't answer me. Finally in a halting way he said, "I can't walk because my feet are sick." I now understand that his brain can no longer command his body. The things we do without thinking are being lost to him. His liquids have been thickened to pudding consistancy because he chokes so easily. He needs to be reposistioned every 2 hours through the night. At the NF I'm getting silent pats on the shoulder, hugs and sad looks from the staff. Is this the beginning of the end? I guess knowing that is not really important. What is important is he is still sweet and social. He dosen't seem at all bothered by the wheelchair and I'm thankful for that. He will begin OT and PT on Monday. Maybe he'll walk again maybe not. Seeing my vibrant vain proud husband in a wheelchair has knocked me for a loop but if he's okay with it I have to be too. Thanks for listening. You are all the best friends an alzspouse could have. xox cs
Oh CS, I'm sorry. His feet are sick. I just have to say Lordy Mercy. When I took DH to visit his friend last week, he too, is in a wheelchair and can't walk. When he mentioned having to be in a wheelchair, I asked what happened. He said "my feet just stopped working'. Simple as that. His left hand didn't seem to move. I've wondered how it can be that if the feet are 'sick' nothing seems to show up on the xrays or ct scans..in those regions of the brain. Maybe the PT will help. Glad you let us know.
CS, just so sorry to hear about this :-( Your heartfelt feelings are felt thru your post and I wish I could just give you a hugg!! "is this the beginning of the end"...it may be, but the "end" may be a long time coming too. "His liquids have been thickened to pudding consistancy because he chokes so easily"...this too may be a step towards the end. This disease is so hard and just continues to rob and take from our loved ones and from us!! Praying for peace for you...Much love, Debbie
CS, its so hard when LO's move to a new and horrible phase in the journey. Sorry to hear about this and know that I am thinking of you and sending you hugs!!!! It is good to hear that he is still sweet and social and finds words to communicate with you. Hugs, Sue
My brother, who has not been diagnosed with AD, as far as I know, has a similar problem. His wife came home one day and found that he could not walk, or move his arms. He has had several hospitalizations, been in rehab twice and is home since Christmas. They have full time care for him. I am not able to go to see him due to my own problems with DH and the fact that my brother is in NJ, I am in NC. When I call, his wife says he is asleep. His diagnosis is possible small strokes, along with diabetic neuropathy. My sister and brother have seen him and think he is in a bad way.
Have you called hospice? I'm not saying that your LO is in the last stages, but I'm saying that hospice would have the answer to that question.
A combination of not being able to walk, and needing as much help as he does need to eat should qualify someone for hospice help. And it does not hurt to ask.
I know how hard it is to see a spouse in a wheelchair. The facility where my husband is moved him from a merry walker (he kept tipping it over) 3 months ago. It broke my heart all over again to see him that way. He also needs thickened liquids but does well with solid food. Beginning of the end, maybe, maybe not, hard to tell with this crazy disease. Hope things look up for you soon. It did not take Charlie too long to learn to move the chair and he is fairly mobile.
Thank you, cs, for bringing us up-to-date. (Hugs) and angels for comfort. Your statement, "if he's okay with it I have to be too." struck a chord w/me. It seems that that attitude would be comforting to our spouses, and would make things easier for both of us. So, on each step down the path, I'm going to try to be accepting and only be upset when I'm alone--as much as that's possible. Case in point, last night I was preparing a root beer float (we call them ebony bovines/black cow) for myself and asked hb if he wanted one. No. Later, he said he'd like one, and he'd fix it. (I sat in my chair and watched.) He put the ice cream and root beer on the counter, but then didn't know what to do. Got a bowl out instead of glass, started to pour root beer in bowl, stopped and said, "I think I need some help here." He's NEVER done that before--usually tries to cover up what he's doing or stops and does something else or gets upset if I offer to help. Acceptance is good.
Everything that they could do that they can't do anymore is heartbreaking. Watching them lose their balance, watching them be wobbly, watching them unable to put the food in their mouth, and watching them be unable to follow the simplest direction ("take my hand") brings tears.....to see our vibrant spouses reduced to a baby is devastating. There are no words as we go down the end of this horrible road....just love and sympathy and hugs....lots and lots of hugs
what you said Mary is so true. Sometimes it is so heartbreaking all we can do is hug them and reassure them that we are here and still love them. Life can be good even in turmoil if we take it be the horns and deal with it. Not saying it is easy just that it helps to do this. I know my dh expects me to be able to handle things and keep him safe. I am doing this as best I can and trying to keep the tears and concerns behind closed doors. We all learn to handle the beast of alzheimer's the best we can.
This is one of the times that I am very thankful for my quirky sense of humor. It hit hard when he had to go to a wheel chair. That was one of my "of how awful indicators". He will walk with two aids now but walks so high on his toes my comment is "if he walked any more on his toes, he would need (ballet) toe-shoes" In our case the chair was a mixed blessing as he was able to propel himself around while in it so went from sitting around to at least being able to get himself around somewhat. Now he no longer does much of that and again it is so sad.
I do believe that he takes his cue from me. If I can accpet and deal with the changes, then he does too. So, my thoughts and feeling stay on the inside while I am with him and I try to be positive and upbeat for him. So far, it seems to work and when he is relaxed about the change, I relax about it.