My wife has been in a dementia ward of an assisted living facility for 3 months. I hadn't really felt until a week ago. the doctor visited my wife, gave her a perfunctory exam, and then said she wanted to talk with me. We went into a a private space, and sh asked me how I was and I said fine. I told her that I was concerned because my wife seemed to again started losing weight and shun any walking- her only exercise. She said that eventually my wife would stop walking all together, then stop eating after that. She said that every day she spends in bed, she loses 55 of her muscle mass. I said that at home, even though she spent most of the day in bed, she would easily climb our 30 steps up to the kitchen floor, etc. I said that she appeared to be someone that might live another 10-20 years. The dr. said NO, she might live 3 to 4 years, that was all. She also told me not to try to limit my visits to 1/wk for the next month and NOT continue to weigh my wife.
I left the facility after that talk, and realized as I was driving home that I was feeling very, very sad..as if the dr. just pronounced a death sentence on my wife. I started crying once I was in the house and have been crying off and on since then. When I thought about it based upon earlier prognoses, it was basically the same range that her neurologist had given me 3-4 years earlier, then of course it was a larger number. I've found some books re grieving a spouse but none where the spouse was in the slow process of dying from alzheimers. Does anyone know of a book or a website that discusses this?
So sorry for what you are going through. Actually, you are at the only place on the Internet that discusses the issue of mourning a living spouse. Everyone of us understands your situation, as we are going through the same thing. I have written blogs about it, and we have discussed it often on these message boards.
Please forgive me for making you wait until tomorrow, but it is after midnight, and I am too tired to look it up now. Tomorrow morning I will do the research and find the blogs and discussion topics for you.
Watchful7, It is good to hear from you. I have been thinking about you and wondering if you had found a suitable facility for your DW. IMHO no doctor can predict what is going to happen 3 to 4 years down the road. She is your loved one and no doctor should tell you what not to do for her as long as you aren't causing any harm. It is be absolutely cruel on the doctors part to say this to you. It would be devastating for your health to go through all of her remaining years in a state of constant grief. I think you are at top of the chain of command in your DW's care. In my opinion I would visit when I dang well feel like it and have her weighed when I dang well feel like it too. I am profoundly sorry that you are going through all of this mental anguish. I am not familiar with any web sites or books in dealing with this. Perhaps some of our other friends here will know of some that will help you. We are here and we care.
Watchful7, This is THE BEST place to be right now. All of us understand the sock in the stomach you just got from the doctor. There are veterans here who have experienced a wide range of situations and can give you some advice, help or just lend an ear. This disease affects all of it's victims in similar ways and what the doctor said might happen. Or something else could intervene. One never knows for sure what to expect at any one given time. So hang in there. By the way, those of us who have a * have lost our spouse.
watchful7, I am so sorry for your pain. My DH was placed on hospice at the first of the year. Everyone felt he had 6 mons or less left. He did not pass until this month. And only the last two weeks were bad. He was eating and enjoying himself until almost the end. His world had gotten so small. But he was still content in it. He passed the experts time frame by 5 months. And they were seeing him every week.
If I can give you any advice, it would be to enjoy each day for what it is. Don't worry about what tomorrow brings. It will come if we worry or not. Don't let the worry of tomorrow ruin the happiness of today.
My DH was losing so much weight, I stopped weighting him for myself. There was nothing I could do to stop it. And it was only upsetting me, not him. You do what you feel is best for you and your DW.
There are more, but I believe these two will be of help to you. The first is the discussions on grieving a living spouse, and the second is one of the blogs I wrote about it.
Watchful, as others have said, this is THE BEST place for support, advice, comfort, etc. because we're all experiencing what you're experiencing, just maybe on different timelines.
I am so sorry the doctor was so insensitive in her approach and giving you information about your wife's condition and prognosis. I think we all know in our hearts that this is a terminal illness but to hear it from a medical professional forces us to face the sad truth of how this journey will end. Personally I don't dwell on how this will end, I just try to enjoy each and every day I have with him. It's my way of surviving the emotional devastation you describe. Visit this site often, we're here for you.
What others said above. Doctors hate to deliver bad news as much as patients and families hate to receive it. Some are better at it than others. I suspect that the doctor didn't want you obsessing about weight loss, since it is part of the disease process. If you mentioned 10-20 years, she may have been trying to guide you to a more realistic number. The fact is that you are fragile and super sensitive. We all are. If you read through the threads you will find a lot about this long drawn out grief process as well as comments made by well-meaning outsiders that cut us to the quick. We all understand and this is a safe place to share your feelings and learn coping techniques.
Watchful, The advice here is reliable. Many of us have been where you are....or similarly experienced. Only you can decide how you want/need to handle things. I think the Dr.'s comments about reducing your visits and stopping weighing her, were said out of concern for you; possibly a nudge toward acceptance of what is happening. There is no stopping the progression and keeping such a tight watch won't change that, but can elevate your stress.
In our case, my DH was Dx'x in Aug.=-Sept.of 2006. At that time I was told he had Vascular Dementia. I was also told that while there was no projected time limit for it, because of the Vascular disease, I should be on alert because he could die from a massive Stroke or Heart Attack at any time. It didn't take me long to recognize no one can live "on alert" 24/7/365. DH was going to die someday, but when was impossible to know. A car accident, bad flu, an Injury-----it really wasn't any different than before, just that there was that one thing moving him to that point a bit sooner. I resolved to take care of him the best I could and make our days the best they could be. The picture changed when he developed a second terminal condition. The Aortic Stenosis was inoperable because of the Dementia and was causing Critical Congestive Heart Failure. The Cardiologist expected , with palliative treatment, we'd have a year. That was more definite than the open ended projection of the dementia. I was adjusting to that, when we lost him a month later. And that was okay. You see, we went from an open ended terminal case, to an any minute case, to an in-a-year projection, to the immediate. Our reality was: we had 6 years and they weren't all that bad.
No one knows how long we have. Our job is to make the time as good as we can. Spend your time making life good, not marking its passing.
HI watchful I am so sorry for you sadness, and oh my, how you say what so many of us feel. Dear watchful, when I checked my husband in to his new nursing home with the Veterans , the administration had a meeting with me to discuss his care. One of the first things they asked, "Have you made funeral arrangements?" Well, no I had not, though of course I will now. He is only 65, and still eats and his weight is holding. He is however getting well in to stage 7, the last one.
I cried all day, it hit me like a ton of bricks even though I know it is coming. I LOVE HIM SO I LOVE HIM SO, kept going through my heart, he cannot die on me!!
But he will. As Carosi said, maybe we could go first, but it is likely he will. I shall make arrangements first thing in the New Year.
I know we will suffer no matter what, I hope that for you, as it is for me, that this group can help, and that you can hang on and maybe find someone to talk to.
Weight loss does not always happen. My FIL never lost much weight and last pic I saw of SIL, she has not lost weight. My husband definitely has not, but then he is still in the moderate stage.
My DH never lost much weight at all and he ate really well up until 13 days before he died. They did start to puree his food only 2 days before. Whhe did not respond to me much during this 13 day period, he did respond to the aides who were feeding him - not verbally very much but with a smile or a twinkle in his eyes. As others have posted, just enjoy each day as much as you can and try not to stress about the 'future'. We all know how it will ultimately end.