I’m really at a loss. My dh can still chew and eat his food but has lost all interest in it. He does well at breakfast but the other meals he will just pick at and then get up and leave the table. I tried feeding him on a tray in his recliner but that doesn’t work.He just shoves the tray off his lap. I can follow him around giving him bites of food which he will sometimes take but often refuse. He is starting to lose weight and I’m afraid I’m not getting enough food into him. I have started using Ensure which he seems to like. I also picked up a few Gerber Graduates today for him to try, but I just can’t get him to eat very much. I also give him gatoraid several times a day. I’m also feeling uncomfortable about his health. He moans sometimes and I wonder if he is in pain. But he can’t tell me because he can’t make a complete sentence. He has an appt Tues with his pcp but I don’t expect he’ll be able to tell the doctor of any problems. I have him on the waiting list at 2 facilities but just don’t know how long I can do this. I feel like I am failing him and maybe not giving him proper care. He sleeps nearly all day on most days and I have to wake him to give him meals. He needs more socialization and I just can’t give it to him. I can't get his bowels regulated; either he has diarhea or, if I give him an immodium ad, nothing at all. I think he has a lot of stomach aches because of that. I just feel so inadequate and overwhelmed now that he can't communicate and he doesn't understand what I try to tell him. Alz sucks!!!!!
Yes, indeed Gmaewok, AD does suck! I don't have any concrete suggestions for you but I do have a late night (((((HUG))))) and the knowledge that somebody will be along in the morning with advice. In the meantime try not to worry. You are doing all anyone could. It may be just another stage in the disease. The PCP may be able to offer help. Try to get some rest tonight.
Such a painful situation. Is there any way you could see not eating as his choice rather than reflecting on whether you are an adequate caregiver? My husband has trouble regulating his bowels and what I have been told is a daily small dose of miralax, which supposedly doesn't cause diarrhea. My husband doesn't think that works, but he won't try it for steadily.
Gmaewok, i think you should tell his PCP exactly what you've written here. concerns over weight loss and your ability to continue his care under these circumstances. maybe he can offer some input and or get the ball rolling for his placement sooner? drs have some pull with getting things done faster we know. ensure can cause diarrhea in some, my Dh cant use it much without issues. immodium clogs them up and when they cant have normal regular BM it can stress his sytem. ask the dr about what to use =we used miralax too for a while. i give b12 complex OTC vitamins to perk up DH appetite if its sluggish. there are good appetite stimulators the dr can rx you. be sure to ask about something - you are doing a good job -i hope theres an opening soon for DH at a facility pronto. divvi
Gmaewok, as they decrease their activity, the body doesn't need as much food, and the stomach may have difficulty processing some foods. Divvi has given good advice and I hope you can tell the doctor all that you have told us. If he is eating a good breakfast, maybe just try a milk shake for lunch with a straw. My husband prefers to drink his liquids through straws now. And I make certain he has his oatmeal for breakfast and cranberry juice during the day. He will eat bite sized pieces of food at dinner while I sit with him and eat mine. We don't have him eat alone. I wouldn't try to get him to eat while he is walking - my husband has to concentrate on using the muscles to lift his feet and walk - and I have to hold his hand or arm to help him keep his balance.
You are doing a great job! Never doubt it! It is this insidious disease taking them away from us no matter what we do. Some lose weight, then level off, then gain. I would offer a half sandwich, cut in half (like peanut butter and jelly) for lunch and see if he'll eat that. Maybe some baby carrots or celery with peanut butter. Or grapes. Finger food. Like a toddler, they do get particular and sometimes just aren't hungry or their throats hurt. After the doctor examines him and hears the details of what you are doing, he can hopefully help you more.
Gmaewok, he may also be losing his sense of taste, in which case you might have better luck with sweet items such as pudding, ice cream, candy bars, cookies. Please don't berate yourself. It's not you doing this to him, it's the damn disease.
I have not had the problem of not wanting to eat, but my thoughts have run along the same line as Pam. Maybe it is his body letting you know to leave him alone and let nature take its course. I think we all eat more food than we really need and hence the national obesity situation. My DH has cut back about half on his normal food and at this point I am not urging him to eat more. I figure if he is eating a couple small meals of some sort a day, with no exercise, and is still drinking fluids I am not going to worry. They are regressing back to infant stage and you know babies refuse food when they are not hungry. Maybe our DH are smarter than we are sometimes.
I think you should not worry about not being a good caregiver. You are doing a fine job. Miralax was a daily med for my Mom for 6 years and my DH for 2 years until presently when he now somehow doesn't need it. But, it is important to give it every day to be effective.
Also, at the other end of the spectrum my DH has been plagued with soft bowels lately and I have to use about a dozen wipes to get him clean. I started him on accidopolis daily and it has cleared up within a couple days.
I've heard that as the disease progresses they are reverting to being like a baby. Therefore, they have difficulty chewing their food and difficulty swallowing. So, what you're doing with the junior baby food sounds right. My husband takes Ensure occasionally. He doesn't eat regularly. I let him eat when he wants to. Right now he is eating breakfast! It's 2 pm. He doesn't eat lunch. We have dinner late because he eats his breakfast so late. That really isn't good for me, so sometimes I eat earlier and he eats later. I don't like it, but I wouldn't worry about his eating. Let him eat when he wants. And, following him around with the food will just make you, and him, upset. You have to think about yourself. Just follow his lead about eating but make sure he drinks lots of fluids. When my husband does not take in enough fluids, you can tell the difference in him. Once, when he got sick with a very bad cold, he ended up in the hospital to get fluids because he was dehydrated. So, just do the fluid thing and give him the Ensure, or maybe there's another supplement that won't cause the diarrhea. Furthermore, we had a big problem with diarrhea here for more than a year. It was the bane of my life. Twice a day was spent cleaning bathrooms, etc. It seems to be a lot better since his PCP dropped his antidepressant and we got him off the Aricept. I know how difficult your life must be. Isn't it possible to get someone in to help you with his caregiving before he is placed?
My husband has lost about 40 lbs over all, and has little appitite. Usually one meal a day is his limit, he's just not hungry. He knows better than I at this point, what he needs to eat. he also sleeps a lot, I figure 18 to 20 hours a day. part boredom, part actual fatigue.
I need to give DW 2 tblsp of Milk of Magnesia every 3rd day, plus 1 tsp. of Colace every day in chocolate Carnation Instant breakfast, to keep things moving along. Sometimes she moves before I have to give her the M of M. In the evening, sometimes she is lathargic and chews and chews and sometimes it just falls out of her mouth, so I give her baby food (no. 3 level...Junior I guess) with a little salt, pepper, and margarine mixed in, and she can handle that well. She has never been a drinker, and it all has to be nectar thick, so keeping her hydrated is a constant project. You guys are right...this really sucks! But we do the best we can, and what happens, happens, as I've said many times before.
What I think when I read these posts about LO's who won't eat enough is that I can hardly imagine that happening. DH eats everything in sight. But I know that things will change. What I really can't imagine is that he will ever not want to eat jello (sugar-free) with soft fruit in it. Last time, feeling I had grown wiser from past experience, I put the batch of jello into four separate Tupperware containers and hid three of them in the back of the fridge so he would not eat it all at one sitting. I gave him one container. He loved it. Later he went rummaging in the fridge and the next time I looked it was all gone and the containers neatly washed and dried but left on the counter because he can't remember where to put them. I plan to bring back a LARGE supply when we are in the States for Christmas.
Well I think I've found a solution to at least part of my concerns. DH was eating breakfast well, but not the other meals. After watching him and giving it some thought I realized he can no longer eat with a fork. I exchanged his fork for a spoon tonight and he ate very well. When he starts having problems he will sit at the table and let me feed him the rest. Sometimes I think I am "too close to the forest to see the trees". Just need to watch and adjust to his changing abilities (or lack thereof).