Is this progression?

Joydean

Yesterday after doing some errands we stopped at this small restaurant for lunch. It was about 2 so it wasn’t too busy. My husband wanted chicken fried steak so that’s what I ordered for him. I was watching him eat and just had to stop and look at him closer. He had his knife in his left hand and fork in right hand trying to use fork to cut his meat. I was truly surprised to see, he of course could not cut with a fork so he was just using his hand to pick up his food. He had gravy all over his hands. I kept sliding napkins to him but he didn’t use them! I just wanted to help him so badly but didn’t want to embarrass him either. Today we were out again and he wanted to stop for lunch. We opted to gust get a hamburger. Stayed in car. He took his hamburger, opened the wrapper and had it opened and said they didn’t put any buns on my burger. I fixed his food for him and he wanted to know where did I get the bun. 

I know this is not really a big deal, but it’s like he doesn’t know how to eat or use utensils. 

Today it was 80 degrees and he had a fleece lined jacket on and was cold. He stay’s cold most of the time. He doesn’t bathe because he says it’s too cold. He did take a shower today because he said his bottom hurt! Before Alzheimer’s he took a shower in the morning to be fresh and at night to relax. He is having more trouble getting his clothes off now. I have to help him and this makes him frustrated. I also help him get dressed. 

The eating scared me!  I know some of you have/or are having worse things than this. I know I should be prepared for things like this but it’s was just a shock. 

Stuck in the middle

That sounds like progression.  It sounds like you will soon be sitting beside him rather than across the table.  Sorry.

I am gradually doing more and more for my wife.  I'm not cutting up her food yet, but I will when she needs the help.  I try to watch her to be sure she is OK, because she surprises me from time to time with new things she can no longer do without assistance.  

This thing seems a lot like sleeping on a staircase.  Most mornings, we wake up on the same step on which we went to sleep, but once in a while we have new bruises and we're another step nearer the bottom.

My wife doesn't walk beside me anymore.  She follows me, because I know where we are going, and she does not.  I listen for the metallic click of her cane to be sure she is still there.  So far, she always is.  But the click will stop someday, and I will have to adjust.

Iris L.

Be on the alert for choke hazards, meaning mostly meat!

Iris

markus8174

Joydean

I remember well how difficult it was when my beloved wife started having with issues when eating out. After we had an empty nest, we ate out 4 days a week. It was so difficult for her to have to give that up. She is in long term care now and does fine eating. It was dealing with the menu, and using knife, fork and spoon at one time and incontinence issues that kept her at home for meals. I did all the cooking and tried to make foods that could be delt with using just a fork or spoon. Like your DH, using 2 utensils at once got harder and harder for her.  Just one more kick in the head that this horrible disease has given us.  This would be the time to start looking through Medicare.gov to evaluate facilities that would be a good fit for your DH if it comes to that. Also, if you haven't already, a meeting with an elder attorney is an urgent need for you before things get worse. A POA, HCPOA, living will, and asset protection should be discussed ASAP. At this stage, your DH will need you to deal with multiple issues very soon that require you to hold his POA. 

Lynne D

Joydean,

We are in exactly the same situation. Eating out is becoming embarrassing for me and I feel overly-burdensome on the servers.

I always ask for extra napkins up-front and have ample wet wipes in my purse. When given the choice, we sit at a secluded table. When the mess on the floor is too much or there is spilling of beverages We will likely stop eating in restaurants.

Regarding bathing, I don’t press the issue until he stinks so bad I can’t stand it. I sell in another room.

Best of luck. Let us know if you discover any brilliant solutions! It is difficult to lose one of the few activities/outings.

Davegrant

     I can relate to eating issues, it seems like there are many odd behaviors that happen. My DW only eats about 1/3 of the food on the plate and pushes 2/3 to the top of the plate for one reason or another.  She doesn't eat crusts, meat, food that is too hard, or too spicy, or two sweet, or too salty. Potatoes must be mashed. Every meal is pretty much a problem for one reason or another. We seldom eat out because of her complaints. Her back up plan is chicken noodle soup which is mostly salt. She tells me that she will only eat what I cook but actually this is not true. She paces in the kitchen a good part of the day eating cookies or cookie like items. Breakfast is the best meal, and it is usually cereal and toast with Jam.  

     She takes a pill for diabetes and her sugar count on exams is surprisingly quite good. She asks me odd questions, like when I put her cereal on the table, "What do I put on this", I respond, "milk". So, it has gotten more confusing over the last five years. I just started doing the cooking and we were eating out several days a week, but now seldom eat out and it is appearing to me that I need to fix a meal for her and a different one for myself, but then she wants to eat what I eat. So, even what I think are solutions are a problem. It feels like a no-win situation

    I am sorry that I don't have any suggestions and can only empathize with the eating problem.  

Dave

toolbeltexpert

Joydean it's sounds like progression to me, nothing anyone wants to hear. I eat out with my dw. She shadows me as we eat at buffet style restaurants. She can't ever decide what to eat at a sit down. Yesterday dw was moving plants away from windows cause they froze "not" .   Slow but sure unfortunately. Sending hugs

toolbeltexpert

Stuck in the middle wrote

  I listen for the metallic click of her cane to be sure she is still there.  So far, she always is.  But the click will stop someday, and I will have to adjust.

Struck that really hit me. So sad.

When we go out to eat I wait for my wife cause she can't  remember what table we are at.

Ed1937

I could have written a lot of that. I'm sorry you are at that stage. My wife uses her fingers more than she does a fork. Mashed potatoes and gravy? Salad with dressing? Corn? Spaghetti? Yes to all the above, and more. And she is double incontinent. I sometimes go out to get something to go, and bring it home, but no longer go to restaurants.

DrinaJGB

My once meticulous DH now gets food all over his shirt and hands every day now. I am constantly doing laundry if not from spilled food, but incontinence issues. It is heart-wrenching to see him this way. He has no idea that his clothes are soiled when I tell him to put on clean ones. He will hang up dirty shirts and wear them again. He smears peanut butter and honey and humus all over the kitchen and himself. Just another brick in the wall.

Rescue mom

The OP sounds like familiar progression. IME and how PWDs can be alike and different….We ate out a lot. One the first things I noticed about DH was that he no longer looked at the menu, and did not ask questions. He’d say “same as her”: or “the special” (if offered).

 Then noise and other people upset him, even at quiet times. Then he’d get lost inside  the restrooms, if large. Problems grew.  He just wanted to go home. 

We have not eaten out in years; I cook or pick up.

His use of utensils, however,  remain perfect. 

He doesn’t know his kids or where he lives/worked,  won’t bathe, , etc etc., but he uses knife, spoons and fork like he’s sitting with the queen. It’s uncanny to me. The “worst”  thing may be that he will meticulously, painstakingly, chase down every crumb on the plate. And he has no idea what he is eating.

French

We are also here. He now can’t use fork and knife at the same time and also try to cut with the fork and pick with the knife. It 

As stuck in the middle, for 6 months to 1 year I remarked he no more walk at my side but follows me. I interpreted that it is easier for him and perhaps he doesn’t see on the sides

Ed1937

Rescue mom wrote:

and how PWDs can be alike and different… 

Isn't that the truth? It's mind boggling how they can be so different, yet have so much to tie them together.

toolbeltexpert

I noticed several things in this thread my dw is starting to do. Clothes, she mostly wears the same thing. Today she looked into the closet for 5 minutes for the jacket she was gonna wear, she just seemed stuck? Here is the thing that caught my eye she is increasingly walking behind me, I   could crawl and she would be behind me. She's  back to skipping showers.  I read a lot of posts trying to see my dw progress. Some of these things are not constant yet, but I am seeing them more.

Marie58

Davegrant wrote:

   She asks me odd questions, like when I put her cereal on the table, "What do I put on this", I respond, "milk". 

This reminded me of one of the first odd things with my DH regarding eating. I had forgotten about it. One morning he prepared a bowl of cereal with milk and then tried eating it with a fork. I was dumbfounded. Then it was not being able to order at restaurants, having trouble with utensils, not 'seeing' the food on certain parts of the plate, etc. I started cutting everything, even salad, and putting it in a bowl when he could still use a spoon. Then it was finger foods. Now he's bedbound and gets hand fed. 

JulieB46

I have been cutting DH’s meat for the last week or so. If I don’t, he spears it and chews off of it. I worry he’ll choke. He has stopped drinking Budweiser in the last month. He used to drink at least 9-12 a day.  I’m glad this has happened, but he’s abused alcohol since he was in his twenties. He’s now 66. Very weird. He isn’t eating as much, and has stopped exercising or doing things around the house, because he no longer knows what to do. Finally, he is anxious and has hallucinations and delusions. He thinks people are in our house and tells me to whisper and that he wants to leave. Things are progressing too fast. I’m starting to research memory care.

Pat6177

JulieB - could there be a connection between your DH stopping drinking and the anxiety and hallucinations? Might be worth checking with his doc.

Stuck - My DH started walking behind me years ago, well before he was diagnosed. Especially in unknown areas like the airport. I’d ask him to walk beside me so I wouldn’t have to keep looking behind me and he refused. He said he wanted to be able to follow me since I knew where I was going. I’ve just had to get used to looking behind me constantly.

JulieB46

Good question, but he had delusions, hallucinations and paranoia, before he stopped. He actually started earlier in the day for a while, probably self medicating due to his anxiety. The doc thinks it might be a side effect of switching from seroquel to Risperidol, or he has forgotten that he drinks daily.

Joydean

Stuck in middle and French, my husband does that too. He just walks behind me no matter where we are. He doesn’t pick his feet up while walking anymore, he just kinda slides his feet, and if there is a door he will just wait until I open it! He always used to open doors for me . When we eat at home I do cut his food up for him but I try not to when we are out. I guess no more eating out for us. And that’s the sad part because he so enjoyed going. 

Thank you all for listening to me and your help.  

ButterflyWings

So much in common, its true.

Yes, the walking behind me - at least that was back when he would still leave the house. And boy, heaven forbid we needed to hurry...I'd be walking, looking behind me encouraging him to keep up, and it was like he was determined to slow down on purpose. Its a wonder I didn't break my neck, not looking where I was going...more worried about him. We missed several (several) non-refundable flights in the first year or two post-diagnosis before I wised up.

And the food on his shirt and face...yes. Though he is still pretty good with fork and spoon except for the tremor, which can actually be a little humorous to watch as long as he isn't upset by the challenge. Last year he commented that he must be nervous about something. Now, he just fills the spoon and if his hand is shaking (it doesn't always) then he carefully, slowly makes the trip to his mouth watching intently until the last 1/2 inch or so when he pounces on it before his food falls off the utensil. Its cute to see him feel gratified at that accomplishment.

This post reminded me of one of the last days that he confidently made his own breakfast (a mix of cold cereals) and then poured grape juice on it like that's what we always do. And the grape juice bottle looked nothing like the almond milk carton. He ate it without even noticing. That's been months ago. Maybe even a year or more. Yikes. Dementia sure does march on.

Reclining to eat and drink is "a thing" here now. Trying to get him to the table more often since this isn't a great habit to get stuck on and I really don't want to argue about it, nor clean up the messes in bed, or the reclining end of the couch as well as his clothes. Thankfully I haven't had to worry about him choking yet though. He chews forever now it seems like. But I do often have to wipe the corner of his mouth because he's oblivious to the drips and spills, and can't (or won't) follow instructions if I hand him the napkin to fix it himself. At home the grossness is kind of ok - if I don't watch him too closely while I'm eating lol. But we'd likely be a spectacle in public and I think it's not worth compromising his dignity in our case, as he hasn't liked restaurants (probably the noise and crowd) for a very long time anyway, and we are sure to see someone we know. 

Sad. He used to meet me for lunch a couple of times a week even during busy times for both of us, and loved to surprise me with dinner plans out, on the spur of the moment -- just because. It's been so long, I actually had forgotten that. Chalk it up to pre-diagnosis progression. In hindsight, I can see clearly now. Dang it. Hate this disease.

malaise

My guy has lost so much weight and is never hungry. He is 6"2" and is down to 135 lb! Practically lives on Boost or other protien supplements. This has stressed me out the most. Tried all the usual medications to help increase appetite, even medical THC, nothing works. How does one handle this knowing its setting them up for physical issues that really are not positive. My guess we are in 6/7

Kat63

This group helps me so much. Definitely similar behaviors. My DH has walked behind me for quite some time. At first he would say go ahead as I normally walked faster than he. But after a few months i realized it was his way of hiding that he didn’t know where to go and so wanted me to always lead. He does always follow. As far as eating I have ordered food for both of us for quite sometime when we eat at restaurants, most of the time sharing the meal. I do cut his food and he is always fine with me helping. At home I have fixed his plate for almost a year now, since one evening when I cooked hamburgers on the grill and set them out with bun and condiments etc and he could not figure out how to put his hamburger in the middle of the bun. After two attempts I had to do it for him. I have fixed his plate since. He does still use fork, but not knife. Do have to watch though, as one time he grabbed a knife to use to eat a piece of cake, instead of a fork.

Ed1937

This thread is 1 1/2 years old.

alfielucy

this has been so helpful, especially about eating. My first time on this chat my LO has lost so much weight in 4 months She is in Memory Care and tells me she doesn't like the food I've asked them to serve her sandwiches like chicken salad, tuna salad, egg salad I will request finger food although I'm not sure what to request. any suggestions? I'm supplying protein drinks, pretzels and potato chip, apples, bananas ice cream. I think she does ok with cottage cheese and fruit....... any comments or suggestion appreciated. not sure I've put this in the right place thank you Charlie

trottingalong

https://alzconnected.org/discussion/comment/126953#Comment_126953

I sneak my DH dirty clothes while he is sleeping and replace them with clean ones. So far it has wroked

JudyVE

https://alzconnected.org/discussion/comment/183555#Comment_183555

Yes, but I”m pretty new to the group and seeing that others were having very similar experiences to what I am in present day is comforting and helpful. Thanks everyone!