Has anyone had their LO talk about what would happen to you if they died soon? We live in an apartment for seniors and we just moved in less than a year ago. The apartment complex has an age limit and I am 3 years under it. One day he asked me to ask the manager if he died would I still be able to stay in this apartment. He kept asking me to ask her so I finally did. Of course while I was telling her I started to cry because I couldn't believe that he would be thinking of that. Of course she told me that yes, I would because we already qualified for the apartment and that wouldn't change because he dies. When I told him what she said I guess he was content with that answer he didn't bring it up again. Again, yesterday, out of the clear blue sky he says "I don't think I am going to live more than 10 years more. I didn't know what to say so I just said "Oh, maybe, or maybe not, I don't know".
Over the years I too have acknowledged, but down played such negative thinking, expressed by mny DH. "Things are rough now, but they will get better." He never believed he'd see 50. I think it was the Mental Illness talking. I'd basically try to reassure and keep a positive spin on things, but never put his comments down. "You may think that now, but _____________is coming up and that's a good thing to look forward to." Seems to work for us--he'll be 67 in October.
deb - good that he has the moments to worry about your future. He may not remember it but I believe somewhere down inside he will remember you can stay and give him some peace. As for timeline of death - none of us know if we will be here tomorrow either.
My DH doesn't specifically talk about dying, but always is asking what else needs to be done around the house because he wants to make sure everything is "done before he is gone". So very sad.
My DW, now probably slipping from mid/late Stage 6 more into Stage 7, has increasingly been expressing some dark thoughts about dying lately. Not the kinds of things y'all have been talking about -- not questions about what will become of her family or affairs afterwards -- she seemingly doesn't even know who my son and I are most of the time now, and increasingly asks to be taken "home", evidently to a quieter and more secure place. My son and I are mostly just someone who takes her to the potty and tries to get her to eat too much. She wouldn't eat breakfast this morning -- only a small glass of prune juice and some water -- complanining 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. She frequently complains of being very tired, but no specific complaints beyond that. I asked her if there weren't things that she still enjoyed doing, like singing, and her answer was that the only reason she sings is that people expect it of her. 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'l 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!
So sorry Gourdchipper. My DH is still high functional so I can only imaginewhat you are going through. I can only pray that your DW will feel better soon and that you and your son will find comfort knowing you are both doing the very best you can. Jean
Isn't it surprising that they can be so lucid sometimes? These are hard things to look at Gourdchipper. It sounds like she has made her peace with dying and maybe that can be seen as a blessing? My heart goes out to you.
Gourdchipper, I'm sorry that your wife is moving into stage 7. It must be so hard to know that's happening. I hope that her not wanted to eat isn't an indication that the end is near, but you might want to read "Dying to Know" by Tani Bahti. It is a really good book that talks about what actually happens in the body towards the end of life including myths about death. One myth is that when someone quits eating, they starve to death and that it is painful - it isn't true. It's just a sign the body is starting to shut down. I don't remember if it specifically talks about whether it helps to insist someone eat or not. It will be helpful for all of us to know about some of the other myths at some point - I hope it's later rather than now though for all of us.
I think you are not to force someone to eat for fear of choking. I think it may be the body shutting down and not needing any more nourishment. After all, our bodies can only last so long. I tried to encourage my Mom to eat but didn't overly insist during her final days. She was at peace and did not seem to be in pain. Why try and keep her alive when her quality of life was zero? We all have to make our own decision about choices and it is hard.
If she has been doing things to please others for years, this could be the one thing she has found she can control - eating and maybe dying. If you can, try to get insure into her but if nothing else water. I am so sorry you are having to go through this Gourdchipper.
My DH went through a period when he talked all the time about dying. He was completely convinced that he was in the process of dying and would be gone very soon. He is beyond that stage now, thankfully. I wonder if somewhere in the depth of him he was aware that his brain was starting to shut down. At one point though he thought I was dead and had come back as his guardian angel. He would ask me what things were like "on the other side", then get a sheepish look on his face and say, I know, I know, some things you just aren't allowed to tell me. I'll quit asking because I don't want you to be in trouble for telling me more than I'm supposed to know. He would ask me if I had seen his mom and dad there and if they were okay. It was all kind of sweet at that point; again, all in the past.
Thank you for your comments. It is hard to hear my DH talk about this but I also know, like you said, somewhere deep inside they know that their mind is shutting down. He still knows me and I thought that he was in stage 4 or 5 but sometimes I am not sure. Everyone seems to be so different. I think the stages are just a guideline to go by I don't think they are written in stone that you can say yes, because so and so is in stage 6 or 7 or whatever that they don't have much longer. I am also always amazed at how sometimes they seem to be so cognitive and then others it is like they are really bad again. I would like to get the book "Dying to know" I was thinking about the eating issue and how they don't want to eat. I never thought about the fact that they thought they had just eaten and that is why. That would make sense. I just keep remembering that when my kids were little they wouldn't eat and I worried about them and the dr. said "It is OK when they get hungry they will eat. Don't push the matter." It sounds like that is the way we need to be with our LO's with this terrible disease. As long as we can get them to drink something during the day then that is about all we can do. I haven't been able to force my DH to do anything, in fact when I do he is more determined to do what I don't want him to do.
My DH has been through several cycles of wanting to understand what he has and what is going to happen. He knows he's forgetting more and more. Just last night, he told me that he was worried that he would not be lucid (his word choice). I had caught him trying to research Lewy Body Dementia, which is something I had convinced him not to do about a month ago. I keep trying to explain to him that the research will be more confusing than helpful because no 2 people with LBD are the same, that everyone has a different experience, that no one has all the symptoms and some people don't have many of the symptoms, and that he needs to really focus on living each day. I have been focusing on telling him that he is not dying until the day he dies. Until then, he is still living and we are going to make the most of every day. I also told him that people with dementia sometimes get worse and then plateau for unknown periods of time. I try hard to stick with the truth, but flavor it with a positive spin.
In 2007, before he was diagnosed with dementia, my DH was severely depressed to the point that he was suicidal on more than one occasion. It is interesting that once he was diagnosed with dementia, he no longer wants to die. I guess that's just part of the human condition - one that I am glad exists.
I have to admit that I cycle through worrying that he's going to die any day and then worrying that he will drag out through the whole process and even longer because he's only 51 and I know that is not how he wanted to live/die. Frankly, a part of me is afraid he will die soon (autonomic functions are really getting off) and another part is afraid he wont. The pain of watching him fade and seeing his fear of losing his mind (and he seems to know it is happening) is killing me, but the thought of him dying is even worse. Rock meet hard place!
May God be with each of you and bring you comfort and strength to meet the challenges of this night and day. I pray that all who read this feel a touch of God's love and comfort and the still small voice within assuring each of you that God is here, right now, where you are, with you, and carrying you in His loving arms.
Sharan, I sympathize with your "rock meet hard place." I think it's a dilemma that most of us will face (for some of us, in the future). Perhaps comforting to realize that you really have no control over the outcome and have to wait and accept whatever happens. I wish you strength in these difficult days and nights.
moorsb, I think that is a good idea as long as she is doing it equally amoung the kids, if you have some and you are ok with it. I have also did the same with some of my things. Really the only thing of ours they want is their grandparents old junk.
Thanks to All of you for this discussion: My wife is now stage 5/6 and has metasticized non-hodgkins lymphona. She is wanting to stop all treatments, but, has not discussed the fact that it will kill her pretty quickly if she does. I think (can only assume) that she knows this and that that is her reason. I think that I should talk to her frankly about dying, but, I hate to. Does anyone want to give me some advice about it? What worries me is that I am the one that will have to ultimately make the decision to discontinue her treatments and that is a heavy burden to bear. This is life and death and no turning back and I really don't want to make that decision for anybody, especially my wife of 57 years.
The other part is that I don't know how much she understands. Some days are better than others and I am going to an attorney in the morning to change our wills and power of attorney. I don't like that either. I feel like I am writing her out of everything that we ever worked for. I find it distasteful.
Oh well, thanks for listening. As you can see from my rambling, I am not handling things very well at this time.
Dean - have you asked her why she wants to stop treatment? That may be a good place to start.
If it were me I would choose the quicker cancer death over AD death. I know after 57 years the thought of loosing her is heartbreaking - painful beyond imagination. But, you have to be unselfish and do what she want. This would mean putting aside your own pain and desire and risk the wrath of others, but this is her choice. Did you talk about this early on in your marriage whether you would want to linger on?
I see the latter stages the same as being put on life support. I would not want it. If I had the choice between quicker or slower, especially AD slow, I would take the quicker.
Me too, Charlotte. Dean, I think she knows but it would be good to ask her about it. Maybe she is not bringing up the death issue because she is afraid you won't understand. Years ago when my 50 year old cousin was dying of breast cancer she told me she wanted to discuss things with her husband but he would not let her talk about them. I, myself, have chosen funeral arrangements, clothes for burial, burial spot, written obituary without the help of husband or children because it was morbid to them. To me, it is going to happen and I want to have those things in place. Your feelings are not unusual.
Anyone use Purple Cross for burial insurance? I have seen and heard of it for years, but just now went to their website. I also found that the VA will give $300 towards cremation and that many National Cemeteries have gardens especially for scattering ashes. I still want to be scattered in the wilderness area.
Dean, you might try gently but a little indirectly broaching the subject. The next time the issue of treatment comes up, perhaps say something like "what do you think will happen?" when she says no treatment. Sometimes if you can find a way to provide an opportunity, the other person will talk about dying. Some folks need an indication that it's a "safe" subject. Often people feel so threatened by the idea of death that they brush off remarks that are meant by the ill person to be conversation starters. For what it's worth. . .
Dean, it might be helpful for you to read Chapter 5, entitled "The Journey To Letting Go", of the book "Hard Choices For Loving People". The book can be downloaded free at http://www.hardchoices.com/.
I like Charlotte's suggestion of asking your wife why she wants to stop treatment, as a way of starting a needed conversation. And I think Lois could be right in suggesting that your wife is not bringing up the death issue because she is afraid you won't understand.