After her Stroke my mom does not want to eat pushes her food way.

So glad to have found this thread. I am 52 years old, had a mini-stroke on December 30th. Since then, my sense of taste has been off, and I can't eat most foods, they feel uncomfortably dry in my mouth, and I'm never hungry. I am basically living on soup. I am morbidly obese, weighing around 285 when I had my stroke, down to 245 now. My doctor is stumped, my stroke doctor wants me to follow-up with a gastroenterologist. My stomach feels fine, but I am never hungry. My mouth sometimes feels kind of nauseous, I eat because I have to, not because I want to. It's very frustrating and I wish so badly I could eat normally.

Sue

I have a mixed basket of issues going on. So, my father-in-law had brain surgery at Keck hospital in Los Angeles on 03/29/24, during the surgery he had a stroke. His primary care unfortunately is with Kaiser. He's been home for approximately 2 weeks and is a diabetic on a puree diet due to swallowing issues. He went from being a vibrant 74 year old who ran everyday, rode his bicycle for 20+ miles and more....to being an adult with a bratty childlike behavior. He is currently in a diaper in a hospital bed at home. My husband and mother-in-law have to do everything from cleaning him up to checking his blood sugar, feeding him 0-2 tsps of food, and has to beg him to sip a little water....after a few sips, he is done. They also have to suction him, and brush his teeth. Sometimes he even fights them on taking his meds. He isn't talking, just a little whisper here and there. When they pack him up to take him to appointments, it's like packing an infant or toddler bag. His wheelchair is heavy and although he's never been overweight, he's heavy because he has no balance, but his right side has feeling but he cannot move the parts. The first 2 weeks my husband had to stay with his parents to get a routine in place to end the night. He recently has been able to come home because his dad has been sleeping through the night. It's so disheartening that he has not had any PT, OT or Speech since leaving rehab. He was at rehab for about 4 weeks. My husband has been buying gadgets to assist his dad with sometime of therapy. We don't know what we are doing. His mom is willing to pay out of pocket for whatever but everything as far as referrals are in limbo. There should not be any dead time!!! We treat the incarcerated better than retired and working law abiding citizens. I know, I worked in the system for years. (Venting) We are not the United States of America, we are just states in America. Some states do more and care more and in some states like Califonia it's the polar opposite. I don't know, we just need help....(tears flowing)!

@yvette08, I am so sorry to hear that your father-in-law has not had additional access to rehab therapy beyond the initial 4 weeks. It sounds like your father-in-law is equally frustrated being unable to move like he would like to and to having everything done for him. This may explain some of his behvior. It is a such a challenge and heart-wrenching for your mother-in-law and husband. They feel like they are flying blind with little knowledge or support. So hard for everyone.

I bringing @scottrl @pmorgigno @san72 @strokesurvivordynamo @pek59 @neverquit72450 and others into this discussion to share their experiences with rehab and access to services.

Yvette, I'm wondering if your brother--in-law has access to a social worker. They can be helpful in coordinating services and may have suggestions regarding further rehab programs as well as home care support for your mother-in-law.

JULES, I know how mom feels. Stroke wiped away my appetite, too. Hunger pains were rare, so had little clue I was hungry. Maybe taste buds are off, creating a bland flavor, with even the best of foods. Mine are partly dead, or so it seems, then sometimes there is a metallic flavor (chocolate, various sweets, even spicey foods). Of course it's not the food, it's my dysfunctional taste buds. Some seem to work, but those on left side of tongue do not. Between taste buds and plain lack of appetite, I learned to eat to live. I ate little, but tried to consume healthy food.

Also, don't know if mom communicates, but I had a major problem biting inside of lips and cheek. Chewing, as well as, minor sluggishness in tongue, contributed to making eating literally bloody business, lol. I had sensation on my left side, just poor control. Don't know if mom deals with this, but just throwing those things out as contributing factors to her disinterest in food.

For months after my large cerebellar stroke each and every activity was troublesome, overwhelming, challenging, and just plain work. Even eating. If she eats little, pack her *little* with high quality calories. Keep available to her calorie rich drinks, like "boost". Her therapy may help her work up appetite, maybe plan eating for after therapy? Stroke patients are frustrated. We seem to complicate even simple activities, like eating, because strokes suck the life out of us, though usually not literally. They can extinguish a sparkling personality, not necessarily with depression. Emotionally, I sort of flatlined. Life had a bit of a surreal quality. It was all around me, so apparently life goes on....but my place in it, my participation, no longer seemed important, had little satisfaction, and required so. much. work. I lost my usual zest for life. Hard to believe, instead of depression, I dealt with my own lack of will to participte, because participation required lots of thought, clumsy attempts at family dinner, using my stupid walker, and being upright. I was so tired, I just wanted to sleep. Not work on my participation skills, lol. As I improved, the veil lifted a bit, I began to find my place, enjoy humor again, use my deficits as my daily challenges and embraced working on them. Didn't love it, or enjoy it, didn't get all sporty, lol. But I knew I would not improve unless I put the effort in. God bless.

After a stroke, your brain is a jumbled confusion. Not to mention there can be a lot of pain due to spasticity or tight muscles. If she's able to speak well I would just try to talk to her about what she's gone through and let her know that there's people here to support her. I would have them check her executive functioning skills. I stopped eating and it was because my brain just was not knowing what to do. What my son did for me is he just really put out my favorite foods no matter what it was until I started getting more interest in eating. A stroke can make you feel very down because your life has changed radically in an instant. I would give her opportunities to talk about it and find things that she really loves to eat.

Hello @hopeann44

As I see this is your first post, I'd like to welcome you to Mayo Connect. I appreciate your very helpful comments and suggestions about eating problems, post-stroke. Your thoughts should help others understand the causes as well as some strategies for dealing with eating difficulties.

As this is your first post, please share as you are comfortable doing so, a little about yourself. How long ago was your stroke and what types of therapies have been most helpful. Most importantly, how you are feeling now?

My most recent stroke was September 1st 2023. It was number three. Currently the most helpful therapy has been therapeutic ultrasound. It took a while to find the right location and get it started but it is taking the pain in my shoulder from a 10 to a four. How am I feeling now? terrible. I've never been this down, frustrated, and alone after a stroke. My executive functioning has dropped to almost zero. I am having to come to acceptance of that but it's hard to get anybody to listen and to help me with more support. So at this point if they get unhappy with me because I'm not scheduling appointments or eating I'm just going to look at them and say well then there you have it. I can't do what I cannot do. I can't get more support because of my age. On a positive note, my walking did come back quickly and I am able to talk even though at times I don't say the correct words or I have difficulty making sentences.