It caught us by surprise. It is almost like when she was pregnant. There are sudden and unexpected severe adversions to some foods she used to love. She would order something at a restaurant, and then become nauseous when the food is served. She claims she cannot even stand the smell of it. Is this part of the early-mid progression?
This is Lucy, my 52 yo DW who hasbeen showing signs of cognition decline lately that are definitely not simply mental disorders like depression or BP.
Yes, this can happen. Mom would order a meal she normally enjoys and then decide it was "nasty". Not to mention she forgot what she ordered and swore they brought her the wrong meal. On the flip side she would eat things she never liked before. She was never a cooked spinach lover. The first time I saw her eat it my comment was... "I think she forgot she didn't like that!". Since she has eaten spinach. But she refused to eat the rib eye steak on Father's Day which was a first.
Cognitive decline affect any and everything so expect the unexpected. They may become more or less sensitive to touch. They lose peripheral vision, color perception, depth perception, and other visual components. They lost auditory and or visual processing. They lose their ability to find words or form sentences. They lose their inhibition, their judgement, their social filters, and their empathy. They lose the ability to connect to others. They lose the spacial and abstract thinking. And on and on and on. Remember that the brain controls everything! The disease affects the brain. So everything and anything is possible depending on what part of the brain is affected when. We think of dementia as memory loss when in fact it is a brain disease that affects everything.
PS... this is one reason you have to monitor what they eat. I watched Mom pour spoiled milk (lumpy even) on her cereal and start to eat it. When I tried to stop her she said it was good. We also have a resident that loves to eat tempera paints. They are non-toxic but geeze
I have no clues about my FIL's change in the beginning. The only thing I know is my FIL later on forgot what he liked so anything we serve is OK. One thing for sure is he suddenly likes sweet food a lot. (He liked it anyway.) There was a time the caregiver had to hide the cookies or desserts in the fridge or anywhere so he could not reach. Once he had the desserts, he will keep eating it until it is gone. It is not healthy since he will need to eat regular meals again. Now he does not get hold of a bag of food anymore (that year when he moved to the NH, he was not reaching for the sweets in the kitchen anymore.)
However, the desire for sweets will never die. Yesterday when my husband fed him the cookies from the NH, he asked for 3! It is a big cookie. I told my husband no more as his dinner is coming in 40 minutes. My FIL does not talk well anymore so his hands gestured for more. We moved him to the activity room to wait for dinner like everyone else.
The thing to watch out later on is really to make sure Lucy does not have too many sweet food in her hand and that she does not eat them all too much each time. Now she probably forgot what she liked so she is experimenting... Eventually she will forget what she used to like. She will like the desserts more and you will have to hide the sweet food.
We noted some of the same things as Nina. DH never had much of a sweet tooth before the diagnosis, but he definitely got more of a sweet tooth as the illness progressed. Eventually he forgot his former food preferences.
We went through an awkward stage when he couldn't read menus or make decisions in restaurants. He'd either fake it, or would ask us to order for him. We'd talk about how a particular dish sounded good, so that he could order when he couldn't read a menu. Eventually I just ordered for him. Our situation was very different from yours. DH knew that he had Alzheimers and was afraid of being a burden. From being a Type A person with strong opinions and preferences, he became extremely meek and passive for many years after his diagnosis. Even if he didn't like foods or remember ordering them, he wouldn't complain.
As a side note, I used to get some very hostile looks and comments from waiters/waitresses, cashiers and others over the years when I'd order or talk for my husband. I guess they thought I was really pushy since DH looked so normal. We'd be told to "let the man talk for himself." I used to wish there was a "Dementia Badge" sometimes.
When my mother was still at home, and I was preparing her food, she always had to have raw onion with everything. She always liked onion but never to that extent. If left up to her, she would come up with some really stange combinations, like mixing several things that didn't go together, in a glass of milk or water. She would say this is so good. Taste it. She also made these strange combos for her dog. Of course the dog would not eat it and looked at her like what the..... You have to laugh sometimes, it is a great stress reliever.
Weird food preferences aside.... Now she won't stop eating! This is really weird. Yesterday, she had a huge breakfast, followed by a midmorning snack, gigantic lunch (2 entrees and 2 desserts). Then she was hungry for dinner 3 hours later, and devoured a huge plate of seafood alfredo pasta and a gigantic apple pie with ice cream. Son and I just looked at each other in total disbelieve. She is only 109 lbs! Where is she putting all this food? She is in her 3rd day of this food binging! Our restaurant bill on this trip is ginormous!
I wish I knew!! Dad did that as well. He would eat breakfast, be back in the kitchen an hour later eating again. Lunch was an hour later and he would eat anything put in front of him. A few minutes later he was back in the kitchen for a snack... and this would go on all day, day after day. We laughed that his "full button was broken!" That may be exactly what has happened. The brain does not tell her when she is full. She just keeps eating. Or she may be confusing thirst with hunger. Make sure she is getting enough to drink.
It could also be caused by the stress of the trip. It is difficult for them to distinguish emotions and feelings. For those with cognitive impairment anything different is stressful. Particularly if she has been a stress eater before, she may be eating because of trip stress. It will be interesting to see if she continues to do it once she returns home.
Do you best to help her not excessively over eat without causing distress or arguing with her. The excessive full feeling may be mistaken for hunger... or make her uncomfortable and bring on other behavioral issues. But if she is just eating with no other problems... let her eat
Hope otherwise the trip is going well
PS... it is better than her brain telling her she is never hungry!
The trip has been going as well as expected, but not without a bump or two here and there. Thanks for asking, Deb. this is really the first time that I had to interact with her 24/7 continuously and closely. So it really gave me a chance to see what is really going on. Among the first things that struck me was that sundowning is really real. When we were home, she usually retreated into her study these days and I don't really have to interact with her that much. On this trip I really notice that her behavior grows odder and confusion more severe as afternoon and evening approach. The first few days, Lucy and son were constantly at each other throats, usually from Lucy trying to pick fights. After a few days, and much discussion with me, especially wisdom from all of you on this board, son is now learning to not tahe what she says as personally, and learning how to deal with her. So that is good. The very sad realization is that it is very clear that my wife's cognitive abilities has diminished significantly in the last few months. I am realizing that a real meaningful conversation with her these days is close to impossible. The thought occured to me that this may be the last vacation we will be taking. For this trip, I endeavored that Lucy will have a good time. And she is! But it has been exhausting for me.... I hate to say it, but i am looking forward to some peace and quiet when I can get to go back to work.
She has been looking forward to her son's wedding next summer, but I have no confidence that she will be able to make that trip. Next summer is so far away.... I hope I am wrong.
Yes, sundowning is real!! There is no explanation for it but it is a reality. I expect this trip is going to be a learning curve for you.... a blessing. It will give you a better perspective of what you are dealing with. If it has taught your son how to deal with Mom a little better than that is also good. Yes, conversation is difficult at best when the other party is not in the real world with you. Now you understand the little fiblets that makes life so much easier. I am glad Lucy is having a good time but I understand how tired you are. It is physically and mentally exhausting!! Yes, work can be a respite and a relief. Just don't bury yourself there. You still have a diagnosis and decisions to make. I do hope you are wrong about next summer's wedding but it is a long time and this disease waits for nothing. For now, just try to enjoy the vacation you are on and come back ready to figure out what is going on with her.
Luau, as long as she eats well and does not get sick for overeating, it is Ok for now on the road. I know it is hard to say no to her. Sometime down the road later on, you may have to tell her you just had one serving and that one was big so you don't need to have another one... Having double desserts is OK as she would prefer sweet food. Of course, watch out for her diabetes.
My FIL usually forgot or told us he didn't eat the last meal and begged us for more food or cookies. It was not true. Either he knew it or he tricked it so he could get more food.
It is not true. We have to be "cruel" to say that he had good meal and he cannot have too much now or he would get sick or would not eat the next meal again! It is more important to eat 3 meals well in the NH because they don't serve hot food later in the day. Yes he got upset and didn't smile when we refused him more cookies Sunday but he was able to eat more dinner. What he needs is a good dinner - not too many cookies.
For now you can observe how much Lucy would eat the food and next time you may want to consider how to "control" this. You got to control her at some point later on.
I don't think she will say she won't go to the son's wedding next summer. Maybe the son can have his wedding near his Mom? This kind of eating habit will last a long time, so it is not practical to think ok next summer I won't take her.
Again, it is more practical to try to come up with a plan to control her and stop her funny habits for her sake. Say no to her or tell her she ate so much already so let's order less or tell her, oops, we have to leave now!!
I understand now you are not doing anything to control Lucy. But you will see down the road. You see, it will never work if you expect not to upset Lucy. She will get upset forever until the last day. Same as my FIL, he gets upset a lot if peopel say no to him. But when we have to do the right thing, we ignore him. All we need to do is to minimize the impact of getting him upset. Say oops sorry, or say excuse me, may I... Comfort talk and etc.
Actually, her new eating habit is not the core reason I wonder if she will be making the trip next year. I wonder because she seems to be declining so fast. Already the present trip she is a handful. Not sure if i will be able to manage her on a trip by next year. The new temptations associated with travel is already posing a challenge to the insulin dosaging, and this is quite aside from the level of vigilance and diplomacy required to address her tendency towards combatness when denied. She may be needing a more highly controlled environment sooer than expected. At this moment I am not optimistic.
I got exactly what you were saying Luau It is not one thing but the deterioration that you have noticed in the last short while. If that keeps going then she will not be able to go with you in the future. It is sad when you hit that realization in the process. But it is also good that you have a realistic outlook on what the future will probably be. Hope you do find enjoyment in the trip you are on now and hold on to good memories to carry with you
Know what? Her "full" button must have broke too. It's still not working. Let's hope if I jiggle it a bit, it may work again for a while..... Holy Moly, i feel like I am trying to feed a sumo wrestler!
With Dad, he had to eat everything he saw. What we finally did was just let him see less. It's more difficult when you are eating out but when you get home serve the plates from the stove and put smaller portions on her plate. If she has to have two desserts then give her a half piece each time. Sometimes it works Until then... good luck!
I am not sure how tall lucy is but 109 is not that much weight, one of the things that a lot of us deal/dealt with was the tendendsy of our loved ones to lose weight and not be able to regain it, the loss of weight makes them so frail and not able to combat infections of any kind with very much success, at this point in time a little extra weight on her may be a godsend, don't worry so much about it, down the road you may look back and wish she was eating like she is now..maybe a place that has salad bars would be a better choice for now if you are worried.
glad lucy is having a great time, the realization that this may be your last trip is bittersweet, take lots of photos and don't worry about the things you can not fix at this moment, like the eating... one of the main mattras that my daughter and I repeated over and over was "it is what it is".. try it, it really works...
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