My DW is down to 77 pounds. She eats, really she does, but she's just losing weight every week. She was normally 120-130 in the last few years. She's gone from 120 to 77 in 6 months.
In a private care home. The Hospice nurse says it's just that the body forgets how to process food. She is in stage 7, so it's not like it was a huge decline in overall condition. Just one of the last things to go.
Trisinger, I am so sorry. I wish I had information to offer, but my DH isn't at that stage as yet. I'm so glad you were able to get her into the private care home. I wish I could give you a hug.
My husband is not anywhere near there, but I've heard about this symptom before.
You might want to try this web site. The entire book is available online, or you can buy a copy. The author has years of experience as a Hospice chaplain. He has seen it all. I think sometimes we need to know the hard facts.
http://www.hardchoices.com/about_hc.html
You have reached a hard time in your journey. Our thoughts and prayers are with you.
Please don't consider tube feeding. Your wife's body has forgotten how to digest food. It is nature's way of shutting down. I must be tough for you to watch-sorry.
Trisinger: My husband is also in a downward weight spiral; not quite so rapid as your wife. He eats well, in fact, more than he used to when he was healthy. His body just cannot seem to use it properly. The doctor has run assorted tests to make sure something else is not going on, but the tests show nothing. He has been losing about 4 lbs a month. When he was at the doctor a week or so ago, he said that as long as he is not vomiting or having diarrhea, he is not malnourished and it is just something that happens with some dementia patients in spite of a good appetite and eating. He did not offer any other advice.
The hard choices book explains why you should not attempt tube feeding at this point. It also explains the other hard choices we will all have to make at some point. I really do suggest people read it.
My DH is probaby late stage 5, early stage 6, but he has lost a massive amount of weight over the last several years. He weighed around 195 normally and now is down around 148-150. It's awful to see. But I guess it is part of the illness. It's like they're "disappearing" in every way possible.
Mine to has dropped lots of lbs in recent yrs. but he eats everything i give him and always looking for food. its obvious speaking to all of you too, this is just one more 'sign' that is associated with the spiral down with AD. 175 to 158lbs. in about 2yrs maybe. hard to know he wont get on a scale at dr office. i can tell by his clothes. i am so sorry, Trisinger, i also believe in not pushing the feeding issues and let nature take its course. hugs. divvi
We are in the moderate stage of this disease, but before I had any idea what was going on my DH started to withdraw and loose weight. He started to complain that nothing tasted good. Food that I had prepared for years and he always liked didn't taste good. Now it's too salty, too sweet. too mushy, too chooey, too hot,too cold,complains about taste and texture. Nothing is right. I hardly know what to try and cook for him. Of course I know now why this is happening so I just try to have the things around he will eat . Soup, crackers and cheese fruit some meat and salad. We have no problems with him preparing food and feeding himself. I think we are far from that, but one never knows. I just didn't realize early on that the weight and appetite problems had anything to do with AD.
No, we won't do the feeding tube. We had already decided that, and it was hard even though we knew it was the right thing. When I told the Hospice nurse we weren't going to go feeding tube, he told us, "Well, I wouldn't have told you what to do, but I want you to understand that you have made the right decision. Feeding tubes are for people who for some reason can't get the nourishment that will help them. If the LO is eating, and the weight is dropping off, a feeding tube wouldn't help other than to prolong. The nourishment isn't being used, so it's not a solution in this case."
That made me feel a lot better. And so do you all. Big hugs to everyone. yhc
trisinger, that is basically want the book says too. I didn't know any of that stuff when I started looking for information. I read the book and recognized that I had already made what I know is the right decision.
Trisinger - I keep thinking about how little your DH weighs. We are no where that place, but my DH, who weighed 172 when we married, now is down to 157. He is 6'1" and is starting to look sick. Until Saturday we are with about 2000 people who live in RV's and I'm starting to see him as the sickest looking person here. He doesn't want to be alone, so he goes to every event with me. I don't know how much he understands, since he is very quiet and when there is an opportunity he finds a chair to sit down while I talk to vendors, or whatever. I feel the need to learn as much as I can, but am also starting to feel guilty about depleting his energy this much. It is a big effort on his part to go with me. Yesterday when I asked him to stay and rest he said, "I know I don't have much time left and I love you and want to be with you." How can I say no to that?
Fran, you can't. He understands, and as long as he can physically do it, you aren't pushing him. The physical activity is supposedly good for them for as long as their muscles respond. You are so lucky to have had him make that statement. I know my husband feels the same, but he can't say it. Enjoy your travels and he will too.
I asked my DH if he wanted me to ask for a wheelchair for him when we go to the airport Saturday, so he won't have to walk the concourse, he said yes! I was shocked! He never admits to weakness, but he knew he needed it. And he'll get the wheelchair. Sometimes those concourses are so long, I want one! :)
Not only that, but the wheelchair "drivers" know where the next gate is if you are changing planes in an unfamiliar airport. Works great especially overseas....Frankfurt..the airport from hell! Not that i need to worry about that any longer...
Down to 72 lbs. She's still walking, sometimes until she drops from exhaustion. She'll walk for a few days, then stay in bed for a few days. We've been taking her peaches from Fredericksburg (the best in the state!). She eats a whole peach (diced) and asks, "More?" And she eats her daily meals. But still the weight melts off.
As you know I am new here, and haven't been able to catch up on peoples stories. I didn't know about your wife, I am so sorry for you trisinger, for your whole family. I feel so useless as there is nothing I can even offer to do to help. The best I can offer is to keep you all in my thoughts, God Bless, Nikki
All of us thank you, Nikki, and we offer the same to you. That's why we all come here...we know that when we relate our stories, we're telling people who truly care and understand. Some days the kind words we hear from each other are the only ones we'll get all day. That in itself makes you useful, more than you will ever know.
I just can't find any words to reply... I am an emotional person to begin with, and this is bringing me close to the edge... Your strength, love, compassion....what wonderful gifts you have given your dear wife. I can't begin to imagine what you must be going through. The best I can do, is offer my hand in friendship to listen if you ever need to talk. Again, my thoughts and prayers are with you and your family, Nikki
Trisinger, it's a shame that a miracle can't happen to help our spouses recover from AD, and if I could, I would gladly give your wife 50 of my pounds. Believe me when I say I would be glad to get rid of them. <grin>
Your wife is a fighter, and she'll stay with you as long as she can, no matter what her weight. You both are in my thoughts and prayers.
I'm noticing when I posted on 7/2 I said my DH weighed 157. Today he weighed 149.5 - yikes. Because of the gallbladder problem I'm afraid for him to eat much at one time and nothing with a lot of fat, but I think he's been consuming enough to not go down that much. Now I'm guessing because he was terribly constipated and we have that under control that his previous weight was too much gas and fecal matter. I think he is going to have to start wearing suspenders!
Fran, they make some very good looking suspenders as well as some bright colored ones. Hopefully once he has his laproscopy, he'll be able to put back on the lost weight. We'll keep our fingers crossed.
Trisinger--I'm so sorry. This has to be so very hard for you to watch. My mother weighed 63 lbs when she died. She never was a large woman--110 to 115 at most. But 63 lbs she was so thin. It really hurt to see her that was. But, she ate a lot. She loved fried potatoes. I eat that and gain 5 lbs.
Blessings. You and your family are in our prayers.
Hi trisinger, haven't seen you on in a couple of days... hope you and your DW are doing as well as can be expected... keeping you and your family in my thoughts and prayers, Nikki
Trisinger, like Nikki, when you don't check in every day or so, we are concerned about what may have happened with either you and your DW. I believe you said that some days she was still getting up and walking and other days she preferred to just stay in bed. Has there been any change? As Nikki said, you are in our thoughts and prayers.
Lynn use to be a healthy weight, in the 170's. I remember a few years back, he started eating all the time, though he never gained a single pound. In fact he lost 30 pounds. The doctor told me he was eating so much because the part of his brain that should tell him he has eaten was no longer able to function. So I got use to fixing extra meals, sometime he has up to 3 or 4 dinner a night!
He has held his weight in the 140 area for the past few years. I have noticed in the last year he was losing weight again, and mentioned it to his doctor. I was told this correlates with the disease progression. I keep bringing up his weight loss, but that is all I am ever told. At my insistence , they did run test to make sure nothing else was wrong. Everything came back fine.
He is now down to 122 pounds. Is this really normal? To eat so much and still lose weight?
Comment Author Dazed CommentTime 5 hours ago edit delete
Same thing happened to my DH. He also used to weigh about 175 and started losing before we suspected AD. Doctor ordered tests and everything came back fine. He is now down to 138 and like your DH, eats all the time. I didn't know his brain doesn't tell him when he's already eaten. Where does all this food go?
Comment Author Starling CommentTime 4 hours ago edit delete
I think my husband is losing weight as well. I think it has started. He is actually 2 pounds more than he was a year ago according to the doctor's records, but I think he gained weight during the year and now he is losing it.
The pot belly is gone. He craves sweets and he never ate dessert before. Now he has it every day. He has basically given up the heavy exercising he was doing. Even with the 2 hour walks, it is nothing like what he used to do several times a week.
From what I've read in Hard Choices in the section about feeding tubes, the brain loses the ability to tell the body how to digest the food. In the earlier stages we are seeing that they still feel hungry, but in time that will go too. But even now they just aren't digesting the food properly.
Comment Author Mary CommentTime 3 hours ago edit delete
Trisinger's wife has lost down to the 70s; Fran said her husband lost 9 pounds in the last 2 weeks, but then he has had the gall bladder problem, which might account for his loss of weight. My husband has only lost 5 pounds, but his arms FEEL frail now.
I think Nikki's doctor has told her what is true for all AD patients: the AD changes the body so that no matter how much they eat, they use it up and lose weight. My husband will eat the food set in front of him, because he has lost the "I'm full" button as well. <grin> However, he still doesn't gain any weight.
Comment Author divvi CommentTime 2 hours ago edit delete
I am seeing the weight loss as well. DH has gone from 172 when dx to 147lb over the time. he eats everything and like you all say the calories just dont stick. i believe they get to the point the nutients dont absorb so they just sort of melt away-i give lots of fiber bars, nuts etc to keep the intestines working -. he loves his sweets too esp jellybellies..:)just like ronald reagan-i also see him getting frailer in bone structure too. these vibrant intelligent people just are withering away in front of our eyes no matter how hard we try to reverse it..heartbreaking. divvi
Comment Author marge CommentTime 1 hour ago edit delete
My husband's normal weight for years was 195-200; in the early days, he gained weight, went about to 220+. Then he started a downward slide, in spite of eating enormous amounts of food. I even limit him at times, since I am afraid he eats so much he will literally get sick...there is no full button! He is down to 175 and the doctor has run tests for all kinds of things that are not the cause. I used to think AD patients lost weight because they no longer had an appetite and just wouldn't eat much. Actually, I am glad to see it is not just him...I swear there are people (some family) that think I just am not feeding him. He always acts as though it is the first chance to eat he has had in days!
Comment Author Nikki CommentTime 43 minutes ago edit delete
Thank you Joan, I wasn't sure if I should post this on trisinger's post as Lynn isn't in the same stage as his DW and I felt "funny" asking about weight loss with all that he is facing now. Thanks
Marge, I had to laugh as Lynn too acts like he hasn't eaten in days! When we go out to eat with my sister she asks what he wants to eat and he always has some witty things to say about how hungry he is. It cracks me up. She has seen him eat dinner and then not a half hour later ask what is for dinner, most of the family has.. so I never had anyone wonder if he eats lol
It is sad, but also a relief that Lynn isn't the only one this is happening to. I am beginning to despise the term "this correlates with the disease progression" Thank you all for your input and support, one worry checked off my list, Nikki
I have always loved to cook, and keep us supplied with fairly sophisticated food. Now with DH in the hospital, they seem to serve boiled potatoes, carrots, mystery meat in gravy, etc. At home, or once upon a time, indeed the last time he was there 9 years ago, he would have turned his nose up at every bit of it!
And this time he gobbles down everything. Saltines. Chocolate chip cookies (and he has NEVER eaten chocolate). ALL the potatoes and the carrots and the mystery meat and the salad and the three slices of apple cut up with something like mayo to dip them in and so on and so on. I'm NOT looking forward to finding out that the clothes he will wear are too tight!
So - here is my question to you who have spouses losing weight and eating more and more. Where does all that food go? Do they have huge BM's? My DH seems to just plain eat less...
My husband is not as far along as many of yours but he has already started eating so much less. After years of his being always hungry and me trying to help him cut back, I am amazed at how little he eats. He used to eat a take-out chinese dinner in one sitting. He now has three meals from the same dinner.Often at diner time he tells me he is not hungry....This is so different for him that I often ask does he feel sick.... It is just one more weird thing about this disease.
My DH has gone through various stages with eating and this disease. Long before his diagnosis, he became obsessed with not eating too much and maintaining/losing weight. He would only eat fruit for breakfast and lunch and then eat a full dinner. He started this disease at about 165 pounds and was down to 150 for a while. Over the last year or so, he has started eating again but his weight is holding steady at 150-156. Now, he will eat everything on his plate and look for more, but he isn't gaining.
My husband is in the final stage has gone from 180 to 130. It's just what happens. The hospice nurse says it is a very peaceful way to go. I am trying to see it as a blessing. As destroyed as he is and as much as I want him to be at peace, and as much as I want this to be over, I still hate to watch it happen.
beenthere, I am sorry to hear that your loved one is in the final stages. I can only imagine how difficult this must be for you to watch. My heart goes out to you......
Lynn still has his speech so he is not considered to be in that stage 7 yet, though he does want to sleep/or lay down all day. If I let him, he would stay in bed 24 hours a day. I try anything I can think of to get him a bit of activity every day, I am not ready for him to be bedridden, I know I never will be, but i think if he CAN get out of bed, he should. Then I feel like such a heal for not letting him rest. Though he does seem to enjoy going for rides and puttering around after I get him up.
As for the weight, I am concerned because he still eats like a horse, but is still losing weight. He has always had a good metabolism, could eat whatever he wanted and never gain a pound. His doctor can't explain the weight loss, other than it correlates with the disease progression. Does anyone know if this can this happen in any stage? Or does dramatic weight loss only occur in stage 7?
DD went out of town, and I use her computer. I do have a computer of my own, but I like using hers better.
They said she gained a pound. But Wednesday they called because she fell. Well, they aren't exactly sure what happened because nobody saw it, but she was on the floor by her bed. She hadn't been IN bed, and can't get there by herself, so probably she wandered into her room and tried to sit onthe bed and slipped off. She keeps putting her bottom to the chair, but missing it by about 3 inches. it was a matter of time before this happened. The NH called right away and her Hospice nurse came. I went over and gave her hugs and kisses, and she seemed fine. Poor baby. I have dreaded the broken bone time, because I know that that is a downhill signal. I am taking her fruit to eat each day, and she always eats it.
Hi again trisinger, I posted in the other thread, but I was worried enough about your DW to post again .... I am very glad it was nothing more serious WHEW! I had a tear in my eye as I read your post..... you love shines through... I hope I will still be able to be this way with Lynn when he progresses. You hear so much about having to detach yourself, that it is refreshing to hear of those who never let go. It warmed my heart. ~Nikki
Nikki, I think they can lose weight at any stage. One of the first problems I noticed with my husband was that he lost about 35 pounds over a few months. I was panicky. He kept insisting he was fine, that he was simply dieting. Since I did the cooking and he ate everything I dished out for him, and I sure hadn't changed what I was feeding him, I knew this was wrong. Once I finally got him to see a doctor about all the unnerving things I'd been observing, and he was put on namenda (and we got a couple of major sources of stress out of his life), he put the weight back on.
trisinger, your daughter is going to have to switch computers with you. We simply cannot have you disappearing on us like that! Gads, the trauma to my nervous system!