Kathryn has been having a very hard time. Things are a little better now. It has been about two months since my last visit and we (Hospice and I) have been adjusting and changing Kathryn's medicines and amounts. Taking some away and adding others and modifying doses. She continues to decline and has now lost 60 pounds. She still walks around and round the living room and is able to communicate very little. Just a word or two at a time. She looks down all the time and talks to herself and mirrors and lamps. She eats very little and is hunched over.
I can no longer take her out to eat or to the movies. The young lady that helps take care of kathryn while I am at work helps with Kathryn's hair and nails and takes her to the places that do these things and they open early for Kathryn. So we are still able too have her hair and nails done.
She was having signs of having terminal restlessness but her new meds seem to have helped with this. I continue to stay with her all the time when not at work four hours a day Monday - Friday.
I will try to be here more often in the near future.
I hope everybody is doing ok and wish you all the very best
Jim, I haven't posted much myself of late. But I do ck. in and had missed seeing anything from you and had wondered how things were going with hospice. Thanks for taking the time to share. I'll be praying for you.
jim i am sorry to hear your dear kathryn has been in decline of late. but that the meds are helping is always a bonus. peace to you and her, let us know how you are fairing. divvi
Jim it is so good to hear from you...everytime I read your posts your love for Kathryn just shines through. You are so lucky to have each other to love, Kathyrn is so blessed to have you take such good care of her.
Jim...Glad to hear from you. What a wonderful husband you must be to your lovely wife. To be so thoughtful with all the responsibilities you must have and then take the effort to be sure she gets her hair and nails done must very special to her and to you too. Keep us posted because you know we do care.
Jim, I am sorry to learn that Kathryn is declining and know how hard that must be on you. You are such a loving husband - a woman must always have her hair and nails done! Love to you both.
In a way Kathryn is doing a little better but in other ways she is doing worse. The medicine changes seems to have made her clearer during the day so mentally she seems better. But physically she is doing worse. She leans to the left side all the time now and it is very hard for her to lift her head at all. I have a good friend that came down from Alabama to help for a couple of weeks and she has made a big difference in the quality of Kathryn's life. She spends a lot of time with Kathryn and has helped me pick out much nicer clothe for her. She also rubs cream on her skin which she reacts to very good. It gets a bit smile every time.
I really can't take her out to movies or much else anymore walking so I am getting her a wheel chair with a basket for going to the food store. She likes that and all the folks at the store treat her like gold. They go out of their way to say hi to her and some give her hugs which she loves.
I don't know how much longer I will be able to take her their but my plan is to continue taking her for as long as possible.
Sorry I haven't been here much but my days are pretty full now and it is hard to get the time to get online at all.
I think that every body here is special and miss checking in. I hope every one is doing good and I still prayer for you all.
I was wondering about her lifting her head, is that a side effect of the new medicine? I am remembering another poster having that issue with their spouse. How nice that you both had such wonderful company! Lynn smiles when I put cream on him too, I think they must like the feel of our touch :) I am glad you have found a way to still take Kathryn out, it has to be healthy for both of you. Do keep us posted and know you are both in my thoughts and prayers.
You are amazing Jim, and after reading all the good men on this site I see that my younger years were wasted thinking that men were generally lousy. You are the best best best along with all these other guys here.. Much love and aloha and hugs to you and Kathryn.
Nikki, Hospice says at this stage lefting of the head may be part of the Alzheimer's disease itself. It's hard to know. Her medicines come and go so fast it is hard to know what side effects are due to them.
God bless you, JimB. You are doing your loving best for Kathryn. It is good that you have help to assist you and hospice to guide you through this journey. jerseymama*
Anchor, My mom developed the head problem, unable to really lift her head or hold it up as she was in the final stages of the disease. I think it is part of the disease, the decline in motor skill along with overall weakness. So very sad.
Hello, I just got Kathryn out of the hospital and back home.
Kathryn started having trouble breathing Monday afternoon and I called 911. They transported her to the hospital and we found out that one of her medicines (Exelon 9.5mg) was causing her problem in a round about way. One of the side effects of Exelon is urine retention. She has had a problem peeing for a while which in a way I thought was a good thing because I actually thought it meant that she was getting control again and not a problem. But when she wasn't able to go at the hospital they had to cath her and they got over a bag full of urine out plus enough for the lab too.
It was determined that the build up of urine cause her severe pain which caused her severe anxiety and caused the breathing issue. They did all kinds of test and they all came back ok. But a young doctor there said he believed that the Exelon could be the problem and checked it out and was correct. Sense taking her off the Exelon she has be going to the peeing very good. I would have never though I would be thankful to have the incontinence back but I am because she is much more comfortable.
However there is of course a down side. She has had a big decline and isn't rebounding a well has she has in the past after being in the hospital. She is unable to lift her head or feed herself at this time. She doesn't know my name or that we are married at all now and doesn't remember her own name either. She walks toward the left and leans that way too. Her vocabulary has been greatly reduced and she doesn't understand anything that is being said to her. I am still hoping for more of a rebound and will simply have to wait and see what happens.
I talked to her neurologist and we have decided to not put her back on any more Alzheimer's medicine at this time. There is only one medicine left that has not been used for her. I forget the name. I think at this point if there is no improvement without the medicine then her quality of life may be better without it. If we do start her on it I will be watching very closely and if the are any side effects I will discontinue it and give her the best quality of life I can without her being sick as the results of side effects.
This is with out a doubt the hardest part of everything I have had to watch her go through so far.
Oh Jim, you have been through so much lately & yet you come here to share it with us. We are all so impressed by your loving care of your dear Kathryn. I will pray for both of you.
Jim, I too hope she rebounds shortly if not back to her baseline at least an improvement from where she is now. I guess all the professionals tell the caregiver not to "force" them back but when it became apparent that DH was declining during/after his hospital stay last year I had the dr order physical therapy, speech therapy and I worked with him every day on his abc's, months of the year, etc. Just like you would a stroke patient. He didn't get back to baseline but improved from where he was.
You are a wonderful spouse and caregiver please know you are loved by all here. Thanks for sharing your hard journey.
I got a wheel chair and took Kathryn to a brazilian steakhouse tonight (she wasn't able to eat much but that's ok). Most people would say it might be a waste of time and money but I don't care about that. I want her to enjoy everything possible for as long as possible. It wasn't easy but it was worth it. I'm not sure she knew if she even realized where she was but at least she was out of the house and a ride in the car was one of her favorite enjoyments before the trip to the hospital this time. The only thing is she was leaning to the left the whole time and fell asleep in the car after a few minutes so she didn't get to enjoy it as long as I had hoped she would.
Yes Jim, these are the times when we are tested beyond what we think we can possibly take. It hurts deeply these later stages *tears* I am glad you went out tonight Jim, it will help you through this too. Your love and devotion shine through brightly.