I got home last night after six. I helped DH clean up, it's always hardest to clean him (recently became bowel incontinent) when I get home and he's been on his own for a couple of hours. I'm working on getting a personal care attendant to stay with him for those 2 hours.
Anyways, I made dinner for us, older boys are staying with my sisters and 2 year old doesn't usually eat with us, so it was just us having dinner. I couldn't get him to sit down to eat. I kept telling him "sit down", "sit dowwwn", but he would stand there or head in the opposite direction. I lost it and started yelling at him to sit down, banging on the chair to show him where to sit. He got upset, the two year old started crying. It was bad. I should have just let it go, but I kept thinking, what if I can't get him to eat, he's going to starve because I can't get him to sit down to eat? I know, I know, totally irrational right? But he doesn't have the weight to lose. Every meal counts for him. It reminds me of when our oldest son was little and wouldn't eat. I obsessed that he would starve and it would be my fault, nearly had a nervous breakdown over it. It took me so long to realize he's not going to starve himself to death. Kids eat when they're hungry. He's still a beanstalk at 10, but he's healthy.
Anyways, I don't know if that's how it is with AD. Would he have eventually sat down to eat if I had just let it go? The dinner would have been cold by then. It's just getting harder and harder to get him to understand simple directions. Helping him clean up is a monumental task at times, because he doesn't understand that he needs to pull his pants down or take his shoes off. I'll be trying to help him pull his shorts down and he'll be trying to pull them up, or trying to put the shoes back on.
Do any of you have "tricks" for helping your AD LO understand what they need to do? I don't think using pictures would help, but I just can't think of ways to get him to understand. I can't make the direction any simpler!
Kelly, you might want to have the doctor check him over and see if he has a digestive problem and that his body doesn't want to digest food. You may need to alter his diet. His body may be telling him things that his mind can't express to you. I am just guessing, because I am not there yet.
In my case, my husband started standing at the kitchen counter and eating his cereal standing up. I asked him if he wanted me to take his bowl to the table, and he said "NO!" I dropped it and let him eat at the counter. Nine times out of ten he eats his cereal at the counter now. For dinner, I put the food out and tell him dinner is ready, and my daughter and I sit down, call him once more, then say the blessing and start eating. If he hasn't joined us by that time, I prepare his plate and stick it in the microwave and when he wants it, I reheat it. It only took once for me to eat without him at dinner for him to come and sit down. <grin>
I'm so sorry you had this added stress. We have so much to bear already.
Oh Kelly, I don't have any tricks and we aren't 'there' yet but I know you will hear some good suggestions here.
The only thing I know is that the better we can HIDE our emotions, the better they do. BUT there are times when we just can't. I have flipped over some of the most ridiculous things and it only causes greater difficulty. Its after I've calmed down that I realize..like you did.. they won't starve and cold food is still food. Its nearly impossible in the middle of the ordeal to stop and think..ok, whats important here and what isn't. We're all in training here for sure. Hang in there!
Kelly, have you been able to figure out why your husband is queasy in the mornings, or at least what to do to alleviate that? Because maybe he is not feeling well in the evenings, too, and doesn't want to face food.
Other than that, all I can offer by way of ideas is what I've done with my geriatric cats. If they won't sit down and eat when and where they're supposed to (chicken baby food hiding their glucosamine, for example, which is actually a treat and does taste good to them), then I follow them, and keep putting the bowl under their noses. For some reason, putting the bowl on the floor may not work, but holding the bowl up in front of them often does. If they still don't pick up on the idea this is good stuff, I do what the vet calls "priming the pump" ... put a dab on my finger and hold that out to them for licking, and if they won't lick directly off my finger, put the dab on a nose or paw. They'll clean my finger or themselves, find out it tastes good, and that's usually enough to get them going.
Mary talked about letting her husband eat at the counter. Maybe your husband is too agitated to sit at the table, but would eat if offered food elsewhere. Try her eat-off-the-counter idea. Or is there a chair he particularly likes, an easy chair perhaps? Put a TV table next to that and see if he'll eat there.
Maybe he's having trouble trying to use utensils, and doesn't want you to know. Try finger foods, see if he'll go after those. You may need to switch from the usual three-meals-a-day to a bunch of smaller snacks scattered throughout the day.
Prime the pump with dessert first, then offer him the main course. (Try adding sweet toppings to meat dishes, fix dishes that are a little spicier, etc. -- maybe his sense of taste/smell is changing, and he simply doesn't find food very palatable any more.)
Does he come into the kitchen while you're cooking? Perhaps you can prime the pump by asking him to taste-test what you're whipping up.
Maybe there's something about the dining area that's bothering him. Is it too noisy? Are there windows that reflect the light at night, acting like mirrors, and that's scaring him? Maybe your dishes are too "busy" -- if they have patterns, that might be bothering him. Try switching to plain plates of a single color, preferably red or yellow.
Mary, I think it is strange you mentioned your DH standing at the kitchen counter to eat. Mac started this a few weeks ago. He can fix a sandwich for himself and stand in the kitchen. I've asked him why doesn't he sit at the table and he says this is fine. I don't say anything anymore. It is getting really hard to figure out what this disease does to a person and if it is another sign of things getting worse. We are all going to end up paranoid looking for signs.LOL
So sorry for your difficulties. It is bad enough for most of us CG that have only our spouses to care for and can stay home with them. To think of you with children and a job is beyond my total understanding on how you can cope. Your husband probably is thin to begin with like my husband. My husband eats but seems to be losing weight. He only weighs 132lbs. I am in a comfortable stage of CG right now, don't know how long it will last. I have decided to let the chips fall where they may. I agree with everything he says and let him do whatever he wants and I just refuse to get myself upset or to try and reason with him. Every thing that gets worse concerning his condition I look at it as good. That may sound strange to most of you and terrible on my part, but we have to remember this is a fatal condition and he is doomed. So, I want this over with. I have taken the position, bad is good. I must be terrible, but that is how I am coping.
Thanks for the helpful suggestions. It didn't occur to me that he didn't want to eat. I just thought he wasn't understanding it was dinner time. Just an example I guess of how we have to "read" them and decode what they're feeling. He did clean his plate as usual once he sat down and started eating. I've been giving him Zantac or Pepsid for the queasiness. Wow, Sunshyne, you must have the patience of a saint! I wish I could borrow some! Lots of ideas for ways to improve his eating. It is like having a child that you have to coax to eat.
JudithKB, you have gotten "it". There is no point in trying to figure out what is going on (the medical professionals don't even have a clue), there is no point in trying to "teach" them new behaviors (not gonna happen), no point in getting upset and "losing" it...I have long said "it is what it is". There are some things you can't fix....the best way to survive this awful enemy is to just go with the flow....enjoy what you can and accept that we can't fix it!
Sunshyne-you had me scared for a moment there. I have had to do the same thing you did to get my senior cat eating again (he's up to 18 lbs again). I was afraid you were going to suggest that Kelly put food on her husband's nose. Now that that's said-I think putting favorite foods all over the house so husband can nibble as he wanders.
The attitude I have now,came after I got so frightened and upset with a rage my DH had that I had to go to my Dr. He spent an hour with me and was so understanding and supportive. My Dr. said, we can't help your DH so you have to quit thinking "what if this?...what if that?"... just let what will be...be and move on... your health is what is important now, so you come first. He said "no matter what you do it is not going to change the outcome for your DH. You do what is best for YOU and what YOU want to do." It is like I have a new lease on life...maybe I was needing someone to give me permission to do what I wanted to and not feel quilt if I wasn't at my DH's beck and call every min. I really just don't get upset about it. (No meds for me either, just sleeping pills if I need them). If he wants to eat in the living room, outside or not eat at all.. I really don't think he would eat at all if I am not here. Well, I can't help that and I really don't care. I leave him food if I am gone. But, sometimes he eats it sometimes he doesn't. What difference does it make if they lose weight, if it isn't that it will be something else that is going to take them down. I know I must sound so cruel. I am not cruel, I am loving and understanding to my DH, but I don't try and control his behavior or care about his behavior anymore...doing that was driving me crazy.
Kelly, my DH hasnt sat down at the table for yrs now. of course its just him and me, so we dont have family so it may be harder in your case with children. i found my DH likes to lay on the leather couch and watch TV or look at books etc and I have a small round table next to it and he eats all his meals there. no way he'll go into kitchen table. so i am on line here while he eats which works out fine. i also have to just feed him sometimes if hes slow or doesnt get it all down. he usually eats it all but if not i do help him with feeding. like you we cant afford to lose lbs. divvi
JudithKB.....you are not cruel..you are realistic....bless your doctor for giving you "permission" to not go crazy! You will come out of this ordeal with your head and body intact and with the knowledge that you did the best you could do....right on, sister!
JudithKB---I commend you for your attitude!! You are so right. I have saved your posts and will refer to them often. My DH is very mean and ornery. I will certainly go back to your healthy attitude many times. Bless you, and thank you so much!!
kelly5000 there are some excellent suggestions written above - hopefully some of them work for you. My husband is in a facility now but they have taught me a very important lesson in dealing with the disease. It is simply if they are not getting hurt or hurting someone else, anything goes.
This disease keeps changing our perceptions of what is "right" and how things are supposed to be. If he is more comfortable standing and eating, it really is okay. Adding more finger foods to his diet is also okay. Making foods or handing him his plate where the food is already bite-sized and easy to pick up might help a lot.
Loosing it and getting very frustrated with the changes in them happens. There have been so many times when he would change and act like he had always done it that way, it often took me a while to mentally and emotionally adjust to the change.
Kelly, my heart goes out to you……Judith, I don't think you are cruel at all. We each have to handle this the best way we can, and hope we come out whole in the end. For me, I am not there yet. By that I mean, I know there is no hope, but I am not yet ready to give up. Lynn is in late 6 with some early 7... but he still has excellent quality of life. Since he has been on the Seroquel, I have little stress. Care giving has become easier and I truly enjoy our time together. Having Lynn’s personality - at least in part back, is something I never dared hope for…. and is a gift I intend to enjoy every second of every day.
Having said all that, Lynn too does not sit for the average meal. I did as sunshine suggested and changed to plain simple plates years ago and cut everything to small manageable pieces. If he doesn’t want to eat with us, I don’t force him. He prefers to sit at the counter, or stand in the kitchen. I keep lots of finger foods and of course tubs and tubs of peanut butter in the house. He eats very well, but still loses weight *sigh
bluedaze, if putting peanut butter on his nose works ... why not? :-)
therrja: "My husband is in a facility now but they have taught me a very important lesson in dealing with the disease. It is simply if they are not getting hurt or hurting someone else, anything goes." That one goes on the Things I Wish Someone Had Told Me thread.
Judith, I know what you mean. When I almost had a nervous breakdown trying to get my DH to understand something or do something or remember something I finally hit a brick wall emotionally and finally came to realize remembering something or doing something right was not going to heal or stop the disease. The disease was going to continue no matter what he said or did or didn't do. So I also let go emotionally, and decided to go with the flow of the disease, it was going to win anyway. I still loved him but I had accepted that he was in the process of dying and I should make his life easier, not more stressful. Without me being so stressed, I could show more love to him. Nothing to feel guilty about at all.
I'm having trouble getting my husband to focus and actually sit down and eat when I do. He has to wash out the beer bottle right now. He has to do this job or that job or the other one that could wait a million years, RIGHT NOW.
When the food is on the table I sit down, put food on my plate and I start eating. At this point he sits down too in a few more minutes and starts eating as well.
At this point we both still serve ourselves from the serving dishes and pots, but I know that is going to change over time.
My DH has a terrible time trying to sit down on any seat...couch, chair, bed, etc. I get him in front of the chair and tell him to sit, but his mind just cannot get that message to his body. I've tried letting him stand up to eat, but so much of the food winds up on the floor---my dogs will double their weight!! In the last few days, he's had more trouble using a spoon and eating...don't know if this is temporary or another step down. He does seem to want to eat so I put an apron on him and put food in a bowl.
The facility where my husband is has these really neat metal things that go around the back of a plate (hope someone can say what they are called with this description). In essance the plate becomes almost like a bowl and they can use it to help get food on their spoon or fork to get to their mouths. It does seem to help. Of course, one of my worst nightmares when I help to feed my husband is when they have those mixed vegetables with lots of little round things - can't make all that stay on the fork to well myself nevermind succeeding in getting it to his mouth.
If they are using a regular spoon or fork, what about getting one that has a bigger handle that is easier for them to hang on to. There are some people that do very well with those where my husband is.
My local rehab hospital, Good Shepard, also has a rehab store filled with all kinds of items to make life easier for disabled people. Before we knew it was dementia my husband did cognitive therapy with them.
Meals are no fun with my husband either. If I can get him to sit, I start feedin him. Then he will feed himself for awhile. Usually he walks away. I leave the food there and eventually he comes back and eats some more. Today was the first day I left him w/a caregiver. She had a hard time with lunch. She said she eventually followed him into the living room and when he sat she fed him. He only took a few bites and told her no. Tonight he ate a great supper and stayed at the table the whole time. Who knows??? Just go with the flow.
I won't even go into how much this sounds like Andrea, but I tell you the truth when I say "Been there, done that stage." Eat, hop up, return, eat, hop up. Stand and eat. So weird. I was all for let it go, too, but she didn't have the weight to lose, either.
The NH feeds her by putting her in an easy chair, and scoots a TV table tray right up to her. She usually can't figure out how to scoot it away, and therefore can't get up, and therefore eats. Most of the time.
I haven't seen this one mentioned yet...eating off OTHER plates. When we had Andrea at my daughter's house, she sat next to the grandkids. She would NOT eat off her plate, but she would always eat off the grandbaby's plate! I just knew the grandbaby was going to starve, because Andrea would always gobble up his food before he got it! yhc
That is so funny, trisinger, 'cuz that is exactly what my husband has been doing.....he eats off my plate. He would start off with his plate but eventually he ended up eating all of mine. Good diet for me.
I also have a big problem with him sitting down anywhere......not on the toilet, not at the table and very, very hard to get him into bed. He doesn't want to lie down, but will eventually crawl into bed. Then, ends up sleeping all night on his stomach. I really think he's scared and doesn't trust that there is actually something behind him. Last night when I tried to roll him over in bed, he started crying and said he was scared and wouldn't let go of the bedframe. It made me feel so bad. Tonight I'm going to try and place rolled up comforters on his back and hope he will lean back long enough that I can get him to lay down.
Carole you might want to consider some body pillows to cocoon your husband. They are available all over. Might make him feel more secure-sort of like swaddling a baby.
Trisinger, thank you for my smile for today! Tell us, did the grandchild have baby food, or was it the same food Andrea was served? My husband seems to prefer finger food most of the time now, though he will still eat with his fork. I do cut up his meat before serving his plate to him, so that he doesn't have to do that. He would, but it takes him FOREVER (his determination is still in place) and sometimes pieces go off of his plate.
Carole, I have not had the problem of not wanting to sleep on his back. Did this just start? I would try Starling and bluedaze's suggestions.
Well, I say grandbaby, but he was 3-4. They're all babies when you pass 60, right?
Same food, pretty much. Except for the milk. She had hers in a regular glass, and he had his Pooh cup. She went for the Pooh cup every time.
My DD did start cutting up the food, because it was obvious that Andrea wouldn't eat as much. Well, how could you eat if your meat was a giant chunk and you didn't know it could be made smaller? So cutting up is a great help.
Also, there's something about serving food on a colored plate. Of course, since AD is obviously catching around here, I can't remember what they said. I think that if you serve light colored foods on a light colored plate, they don't see it due to vision processing problems. You want to use a plate that contrasts as much as possible to the food, and no pictures on the bottom. Something like that.
Sitting down - I would pat the couch next to me and say "sit down" and my husband would look straight at me and sit down on thin air. He couldn't grasp the concept of "before" and "behind" Trying to get him to sit on the toilet was the most frustrating thing.
When I put him in the facility, they started feeding him pureed food and he was able to eat really well for quite sometime.
trisinger, one of the tricks I've read about for getting an ADLO to eat is to use a brightly colored plate. They are attracted to the color, and after a while just start eating. As one color gets "old", switch to another. Most of the posts I've seen say red and yellow work best.
Patterns aren't a good idea, those can bother and confuse an ADLO. (Although it does sound as if a Pooh cup can attract!)