Kathryn has suffered a big decline over the last 5 days. She is no longer able to hold up her head or sit upright without assistance or arms on the chair to prevent her from falling to the side. She is also having trouble eating and drinking and is staying in bed longer even once she is awake. Hospice is bringing in a hospital bed to make it easier to care for her and I plan on keeping her home as long possible. Not sure how much longer that will be. I am, as always, hoping she will rebound some as she has sometimes in the past after a decline, but hospice says not to expect much of a rebound this time. Once I am able to get her up she will walk around the living room but I have to watch her closely in case she starts to fall. She is now house bound.
I don’t know what else to say. I don’t want to loose her, but I don’t want her to suffer either. I just want whatever is best for her
I feel the love in your posts. This disease is heartbreaking. You have shown such caring and strength.
Being of similar ages and spending lots of time at the beach, your beautiful photo touches me. I can't imagine Your pain now. Sending you caring thoughts.
(((HUGS))) I'm sorry Kathryn is declining, Jim. She is fortunate to have such a loving husband to care for her. This cruel disease has taken so much from her, but it can't take that. You are in my prayers that God will provide you with the strength and energy you need.
I was about to write something, and then I read mary22033's post. Ditto to what she said. You have been the best. Nothing can take that away from both of you.
I don’t know what to say. I guess I never admitted to myself that we couldn’t win. Every step of the way I have been able to compensate for what she lost at any given stage. I have done small exercises with her every night so she could continue to walk and played recording when she was asleep in hopes it would help her be able to talk longer and everything worked until last week. Until last week I was able to fix it in some way. She can still walk a little but it is just so hard for her to move her body now and her vocabulary has been reduced to just a word or two at times and nothing the rest of the time.
Hospice gave me a book on recognizing the signs - as death nears. She has all the symptoms. All I can do is sit here with tears running down my face. It hurts to even breath. I wish so hard there was more I could do. I should be able to fix this and I can’t anymore. This just isn’t right.
We are all so sorry that another caregiver has to face the beginning of the end so to speak. Your love will carry you through this. It isn't/wasn't easy for any of us but somehow we all rose to the occasion and you will too. Just keep loving her every minute and know that we are here for you.
Yes, I know how hard you tried to fix it, it had to be fixable. Everything you did was a precious offering to your beloved - some worked, some didn't, but no one could do more and she knows your love, I know she knows. Let the tears flow, they are cleansing and needed.
jim, cry your heart out friend. it does help to relieve the stress that builds and tension. it will help you cope. everyone who knows me here, has heard i have done and tried everything in the book to subdue the symptoms, attack the disease, and bring DH back from the brink and as time passes i have finally had to admit as well there is nothing that impedes the progression. its one of the most sobering ideologies we have to accept with the disease is it is non fixable. those of us who are 'fixers' have an especially hard time accepting. so sorry for your pain. we all will have to endure this torture soon enough. (((JIM))) divvi
JIm,I went thru the exact thing your going thru a year ago,my LO lost the ability to hold her head up about 4-6 weeks before she was transferred to hospice,a week later she left me an I still can't cope with it,I hope you can deal with it better than me,I held her hand for a week,slept next to her in a recliner an never felt any responce for a week,eyes closed,never moved,left to take a shower when my daugther called an said to hurry back Margie is waiting for you,when I ran in the room she opened her eyes,reached out to grab my hand an took two heavy breathes an passed,talk to her tell her how much you love her,I'm convinced they're still with us right to the very end.Prayers for you an Kathryn
Jim, my heart goes out to you. As everyone has said, you have been a wonderful caregiver. It's so sad to think that this is something we can't fix. You have done your best. (((HUGS))) to you.
Jim---the last and hardest "fix"--the strongest evidence of your love--tell her, when she's ready, "it's alright for her to go. You will be alright." She will be free finally of the journey. We are here to support you and you too will be free, finally from the horror of Alz. You have done a phenominal job taking care of Kathryn, seeing her through with dignity through your deep love. She will always be in your heart.
Yes, do talk to her I'm convinced she will hear you until her last breath. It is the hardest thing in the world that you are going through. Some of us have been there and understand. You have done your very best and maybe more than some and your dear one knows that. Prayers for you.
Your story of your DW's changes remind me clearly of what my mom went through at the close of her earthly life. It is all so familiar. Like you, hospice gave me literature on what to expect. This is without a doubt the hardest part of the journey. I know you are with your LO all the time now...I understand that..cry when you have to...keep soft music in the back ground if you can, read something she would like...maybe a poem or a special card...and just keep telling her how much you love her and she has your blessing to " do whatever she needs to do"....and let her know you will be fine. Hearing this will give her comfort somehow.. I read my mom some scripture about the love and devotion of a wonderful wife...I asked her if she would like to hear this again and she actually nodded yes...It is amazing what might still be understood at some level. We are all here for you, you have been a wonderful caregiver, done everything possible to keep her well and strong as long as possible...It has been amazing to read your testimony which is filled with wonderful insights for others to try to do to help our LOs as they face these changes, as surely they are going to. You are strong and your faith will see you through.
Jim, I am sorry for your pain. Kathryn is so blessed to be loved and cared for by you. I pray that she can feel the love around her, even if she does not comprehend the word right now. Continue to love her and hold her close. I pray for a quiet and peaceful passing for her and for comfort for you. You have done a wonderful job caring for her. This is a pain that we must all go thru unfortunately, but the main thing for all us is make sure that we have no unfinished conversations and no regrets. Arms around you and Kathryn.
Kathryn seemed to have a fairly good day today. I was able to get her out of bed and she did walk some. Only about 25% as much as normal but I guess anything is good. She didn’t eat or drink hardy anything at all but didn’t appear to be in any discomfort because of it. We used to go to the Savannah Theater a lot so I played her some of their music from the 50s. She enjoyed that and clapped her hands and one point dance a small step for a few seconds. It was called “The Beat Goes On” and It think she was feeling the beat.
She doesn’t smile anymore but I understand that is normal and is not a sign rather she is happy or not. She lifted her head for a second and looked around but seemed to look right though everything as if there was nothing there.
The hospital bed was delivered and it did make it much easier for me to get her back in bed once she got tired.
Jim I'm glad you had a better day to spend some Time with Kathryn. It is touching and beautiful to hear how you care for her. How loving to share the music with her. I'm sure she felt the beat and your love.
Jim, I just went through what you are dealing with. My dh would not eat or drink for three weeks. So heartbreaking. He died Feb1st. While he was in his last days I just prayed for his peace. I kissed his forehead and hands all the time. I told a daughter that I was going to kiss him all the way to heaven.
I think we stay in the caregiver mode for so many years it is hard to transition to losing them after years of doing for them.
What a beautiful love story, Jim..So glad you had a wonderful quality day with a little wee dance step of a few seconds . It is so hard to find the joy in a day and when one shines through it is worth more than money can buy.
Anchor20, I tried to look for this topic but I couldn't find anything. You mentioned that your DW "rebounded"? The reason I am asking is because my DH rebounded from last winter quite a lot. I had called hospice because he was so bad last winter and then when it got warm he got a little better(physically) mentally he continued to get worse. How long was her first rebound and it sounds like with each rebound she got worse, was that the case? It was a year ago last month that I had called hospice and he is just now starting to go down again.
Other than this time Kathryn’s biggest declines have come after some dramatic event such as her going to the hospital my being gone for an extended length of time ( I am no longer gone at all because I retired last July to be home with her all the time). After each big decline she has had a rebound to some degree. Not every time but most of the time. The rebounds have only equaled a small percentage of the decline and haven’t lasted long. Some rebounds have only lasted a few days before being over taken by more decline. Some a few weeks. I have noticed that she was more likely to have some rebound in the earlier stages than in the later stages.
So sorry to hear this Jim. You and Kathryn will be in my thoughts and prayers. As the others have said, you've been a warrior caregiver! I hope you get the rebound you're hoping for. Please keep us posted! {{{HUGS}}}
Jim, your words over the past few days about "Every step of the way I have been able to compensate for what she lost at any given stage" and "I wish so hard there was more I could do. I should be able to fix this and I can’t anymore" and "I don’t want to loose her, but I don’t want her to suffer either. I just want whatever is best for her" could have been written by me three plus years ago when I was losing my precious Frances, as you are now facing losing Kathryn. It was a wrenching experience for me, and if I had it to do again I might have done it differently in some ways. With 20/20 hindsight, I now can see that, in my unwillingness to admit defeat and lose her, I perhaps put her through more suffering than she would have otherwise chosen. Letting go is hard. Let me paste in a few paragraphs of stuff I had posted to this forum or else e-mailed to family during those dark months of 2009 when I was going through much of what you are going through now, in hopes that there might be something in there that would help, or at least resonate with you:
<<She wouldn't eat breakfast this morning -- only a small glass of prune juice and some water -- complaining angrily that "they" just kept trying to force her to eat when she'd already done that -- so when I tried later to get her to eat some lunch, the same reaction again. I tried cajoling her into it by offering watermelon, ice cream, whatever, but she kept protesting that she'd already done that and she was full up to the top, and when I tried explaining that she'd had virtually nothing to eat for several days and that I was concerned about her health if she didn't eat, her answer was that everyone has to die sometimes. I agreed with her, but told her I wasn't ready to let her go this soon, and asked why she would talk about dying. She had a hard time getting the thought out, but it was basically that people keep trying to force her to eat when she doesn't want to. I really hadn't heard her express that before, and it sort of shocked me -- but that does sort of tie in with something our son has said several times -- he thinks that maybe she does a lot of the things she does in the attempt not to disappoint us, and that it's taking lots of effort on her part to do that. I guess he could be right -- she has always been one who "did what she was supposed to do", and I'm sure she has put up with my dragging her through lots of things she would rather not have done -- just to please me. I guess I'm going to listen more carefully now -- I'd hate to be putting her through hard times just to not disappoint me. If I conclude this is true, I guess I'll just have to just suck it up and give her permission to leave us if that's what she wants. Not a fun thing to think about -- I've known that time would come, but not prepared for it this soon! Maybe she'll feel better tomorrow!>>
<<Frances still isn't eating well, and hasn't shown any improvement since she's been taking the pills prescribed a couple of weeks ago by the hospice doctor in hopes of stimulating her appetite. Increasingly it's beginning to look like it's not a matter of her not having an appetite, but rather maybe just being tired of it all and ready for it to end. Bill and I had a long conversation about this a few nights ago, and both agreed that our continuing to push her to eat might not be the right thing to do -- she may just be doing it to not let us down. When I was trying to get her to eat some breakfast one morning recently, and telling her she needed to eat some to maintain her health, she said, "So then I guess I'll just be dead." I asked her if she was really serious in talking about being dead, and she said, "You never think I'm serious." I tried then to tell her that I loved her and didn't want to let her go, but that I also wouldn't want to force her continue to hanging around in pain and feeling tired all the time if she was ready to go -- but I started tearing up and couldn't get the words out. I'll try again later. >>
<<We're pretty much having to spoon feed her the small amount of food she's eating, although maybe every day or two she'll sip a container of Boost through a straw -- and is usually willing to take a few sips of water and swish them noisily before swallowing, so she's managing to soak three or four pairs of Depends daily. Bill and I are speculating that she really could be in the last weeks of her life -- not a fun thing to think about, but we're pretty much reconciled to the fact that it won't be long. On the chance that we're right, I've made an appointment tomorrow to go to the funeral home for a pre-planning conference, and as the spirit moves me (not much) working on an obituary notice and material for a eulogy to be read by someone. But on the bright side, she sometimes surprises us by coming out of the fog and joking or singing with us for a short time before the effort wears her out -- maybe once every couple of days. Wish there was better news.>>
<<I wish I had some good news to report today, but that's not to be. She hasn't taken any food in the past three days, and probably only about 8 ounces of water in that time -- just a few small sips yesterday and none today. Nor has she really roused from "sleep" during that time -- the hospice doctor visited on Tuesday and said that once they stop taking fluids, they usually die within five days, so we could be looking at this weekend. Thankfully she doesn't seem to be experiencing any pain except when we have to move her for changing a diaper or bathing her, and just in the past couple of days we've been giving her a small dose of liquid morphine beneath her tongue beforehand to take the edge off that discomfort. And we've also begun giving her Ativan anytime she starts to fidget and tense up her arms and legs like she thinks she's falling -- and that seems to calm her down and she sleeps peacefully for hours. Making the decision to not push her to eat was hard, notwithstanding assurances from the hospice folks that she doesn't experience hunger and thirst as we do. I have realized, intellectually, that pushing her to take a few more bites or sips could only serve to extend her life for a few more hours or days, and that these hours or days weren't really good ones -- not for her and not for us. But emotionally, it was so hard not to try -- I'd feel like I'd "won" a small victory if I got her to take a bite or a sip.>>
End of lesson, or whatever it was, Jim. You have my heartfelt sympathy and best wishes for dealing with what you're facing.
As much as I don’t want to loose her I am following her advanced directives to the letter. The pain I feel at the thought of loosing her does not come into play when it comes to her desires and care. It isn’t easy to ignore but I made her a promise which I will keep no matter what my feelings are or how much it hurts me.
If you changed Frances to Kathryn almost every single thing you said would apply word for word. As I read this today I was thinking that except for the liquid morphine it all applied then the nurse arrived and said she needed to show me how to give Kathryn her new medicine the doctor ordered. It was liquid morphine. At that moment all I could think about was what you had written here. Kathryn does still eat a little but it is so little it almost doesn’t count. She has lost another 10 pounds in the last week. The last paragraph you wrote fits Kathryn so closely it is spooky. The morphine, the ativan (only she gets xanax), the tensing up her arms and legs like she thinks she's falling, experiencing any pain when we have to move her for her bed bath or to change her depends, etc. I looked up feeding Alzheimer’s on the internet and it said that forcing them to eat doesn’t help and could actually lead to additional suffering by extending her life to a point where there will be more physical problems. That would seem to fit what you are saying too.
I felt exactly like you are saying that every bite no matter how small was a good victory toward helping her. While I have not forced her to eat at all I certainly have given my all into trying to get her to eat just short of forcing her.
Thank you for the input. I have some thinking to do. Maybe it is time to leave it in the hands of God and let nature takes it course. That won’t be easy because I am not a person that sitting by and just watching and doing nothing come easy to.
Jim, I, too, tried to fix everything for Eric, and when he died, I felt that I had failed in every way. Failed to keep him comfortable, failed to keep to him from choking, failed to give him a peaceful passing, failed to keep him alive until he died a natural death. It’s only with time that we can look back and see that our love and commitment shine brightest, above and beyond any shadow of failure.
Jim...My Jim died Aug. 28th. I was so glad we had discussed the type of end care we both wanted early on and of all the decisions I made during this horrible trip with him I was most comfortable with the last week of his life because I never had a doubt I was doing what he wanted and what I would have wanted.
When the Hospice Dr. and 2 of the hospice nurses came to the house and told me I had choices to make and it was up to me, however my dh was going to be gone sooner then later. The choices they told me were: Discontinue all medication, Give him food and water or discontinue one or both. If I discontinued food he might last two weeks and if I discontinued water he would only last maybe a week. I immediately discontinued all medications, food and water and the dr. was right he was gone in less then a week.
My heart breaks for you and I will pray that you have peace in whatever decisions you make.
These choices are always very, very difficult. However, I did feel comfortable in doing this because I knew this is what we had discussed and what he would have wanted.
Kathryn is doing a little bit better this morning. I was able to get her in the car and take her to Burger King where she ate about 2/3 of a Bacon, egg and cheese breakfast sandwich and about 4 of the little round potato things and a full 32 once soda. She is now at her lowest weight and is down by 110 pounds. She is walking a little better and able to sit without falling over this morning. She can’t lift her head at all but doesn’t seem to be in any discomfort.
JudithKB* What I have decided is to discontinue all medicines unless they are for pain and comfort. I do not feed her but I am keeping food and drink near her at all times and in case she does want it. Kathryn and I both have the same advanced directives also. I know what she wanted and that is what I am doing for her.
Great Jim....everyone knows what is best for their spouses and also for them as the caregiver. I have always thought that doing what one is comfortable with and what you two have talked about will give the caregiver the most peace and comfort at the end. Glad to hear she is doing a little better today. I also gave my dh the pain medication supplied by hospice.
JimB---Putting Kathryn in God's hands, letting Nature take its course, is not sitting by doing nothing. It is loving Kathryn, keeping her comfortable, and giving her peace. No small undertaking. Acting on her Last Directives is not easy to do. We want to keep fighting--not lose them. But that is our feelings, not what's best for them. We do it because we love them and want what is best for them--always have. You arfe doing the very bbes yopu can, and it s enouigh.
Jim yes we are here for you. Any woman would have been so lucky to have found a wonderful husband and mate like you. I too am hurting and wondering about my Dado right now. Sometimes when I read how many of you still have your spouse at home at the later stage, I think about feeling guilty. However, his falling constantly was about to kill me too, so I did what HAD to be done.
Don’t judge yourself by what others do. All any of us can do is our individual best and if you have done your best you have no reason to feel guilty. I can tell you that I give my absolute best to everything I do. Some days my best isn't as good as it is on other days but it is at the moment the best I have to give.
Jim, by following her wishes you are giving the ultimate last act of Love,.. My heart breaks for you but I know that you are doing what you do for her. May God grant you peace and grant Kathryn a peaceful passing.
Kathryn gained a pound over the last 5 days. Never thought I would be so excited about so small a thing. But she has been eating a little more. It isn't enough to make a big differance but it gives her a little more strength with helps her walk around and that is a good thing because she want to walk so bad.
Kathryn has rebounded a little more. This morning Kathryn woke up at 6:30 and was hungry. She stayed awake for 15 hours. She didn't eat much and rested more during the day but over all it was a good day for her. I don't know how long it will last but at this point we will take what we can get as long as she is happy. She did fall again but I thing she was turning and lost her balance is all. She wasn't hurt. I will see how she is doing tomorrow when she gets up.
I can understand the joy when there is a good day. My DH sleeps a good bit more now during the day, no sundown issues, eating is an issue and I am concerned about his wt loss. He isn't and neither are his doctors at this point...so like you, when I see his wt go up a bit I cheer inside. He thinks he is fat...no not a bit..he is at his original fighting wt but there are days when is goes down and down just day to day...that is the scary thing. Like your wife, he has balance issues to but has not fallen. Mobility is affected now more by the ALZ than his hx of diabetes. I hope Kathryn's good days keep up.
Just when you think there is nothing else that can happen outside of loosing your loved one something new does come along and show you there is more. Last night Kathryn started experiencing periods of “Apnea” not while she was a sleep but while she is awake. Then this morning she started throwing up really bad. Where she was getting it from no one knows because she has been hardly eating anything at all. She threw up about 9 times in and hour and a half and then started have dry heaves six or eight times. She isn’t drinking but maybe 6 or 8 oz. a day at this time so she is also very dehydrated. Because she can’t left her head and goes all day walking with it just hanging down her heck hurts when she lay’s down at night and she now needs morphine to relax it which I think is causing her skin to bother her too. And to top all that off she is down another 8 pounds too.
I really thought she had reached a stage where there was nothing else left to go wrong. I hate it when there is nothing I can do to help her. I feel so hopless just standing there holding her and not be able to do something for her. She deserves so much more than that.