Hello all, I'm new to the group.

My mom had a stroke the day after Thanksgiving 2022. Doc at the hospital said it was a pontine stroke which is fairly rare and involves the brainstem. It can lead to 'locked in syndrome' where a person is awake and aware but can't move at all. "Fortunately" (if one can truly call this fortune) my mom only got paralysis on the right side of her body and the left side of her face (this kind of thing is common with pontine stroke).

Mom was in the hospital for about a week following her trip to the emergency room. For the first couple days she was quite lucid, but this faded. The neurologist said that this was because the stroke was continuing its course and there was nothing to do but keep giving her blood thinners and wait.

Mom never improved after that. She was discharged to a skilled nursing facility in the hopes that she could be rehabilitated and gain some independence. Instead, she was either too tired or refused to comply most days, insisting on staying in bed. The most she recovered was the occasional ability to wiggle her right toes or maybe lift her right knee slightly--not enough to support her weight. She barely spoke, mostly just nodded or shook her head to questions, and occasionally a partial sentence. Most of the time she refused to eat and barely even drank water. She had to get a saline drip to rehydrate a couple times. I tried bringing her food from outside because she would just pick at the meals she was served, but still all she would do was nibble and then refuse more. I insisted that her appetite might be affected by depression, and the doc on staff added an antidepressant that is supposed to help with appetite, but it hasn't helped.

Due to mom's lack of progress, Medicare stopped paying for her stay at the facility, and she was discharged still bedbound and incontinent. We originally were going to appeal but we (my spouse and I) lost faith in the facility's ability to care for her, given that it was a facility for physical and occupational therapy, not for someone in her condition. We hoped that a change of scenery to somewhere comfortable would encourage her, and have hired a caregiver to help with keeping her clean, changing her, watching her, feeding her etc. so we can do the things we need to do during the day, and because my anxiety (about making a mistake and hurting her, about watching her slowly die) is so intense that I'm unable to do a lot of these tasks myself.

The unfortunate problem is that we will not be able to afford 24/7 care for long. I'm budgeting for 6 months at most, and if she doesn't improve enough to gain some autonomy (and she is still alive) we will have little choice but to put her somewhere that / in the care of someone who Medicare will cover. In my mind that means a nursing home where she'll go to die, hopefully with some dignity, or hospice care at home--and that's only if I can stand it.

My mental health is fraught and has been for decades. I was diagnosed (in order and over several years) with major depressive disorder, anxiety & ADHD. They are all managed passibly with meds most days, but not enough that I can take the pressure of employment, and certainly not for the level of stress triggered by the situation with my mom. I've not had a therapist for about a year and I've already had several anxiety attacks and a full-on crying and screaming breakdown. I'm trying to find a long term therapist (been without one for a year; my therapist of 10 years no longer takes my insurance) but it's hard to find one with availability, and it's also another big expense when we are already putting so much money into mom's care.

The only positive change I have noticed so far is that my mom is actually drinking a lot more water now. But she still won't eat more than a few bites at a time. I think she refuses food because she is nauseous, but we're not sure why because she isn't able to express it. I'm happy for the water she is drinking, but if she doesn't get more calories in her, there's no way I see her ever getting out of bed again. She will continue to be too weak to even consider physical therapy,

She *can* eat, let me be clear. She can chew and swallow; her dysphagia is minimal. She just can't or won't eat more than a few bites at a time and seems to have lost any sense of when she is hungry.

So anyway. That's the context of what's going on so far. I guess what would help me at this point is to hear from other caregivers in a similar situation or from stroke survivors who overcame their eating apathy.

When responding please keep these in mind:
- Mom has diabetes and hypertension. Her cholesterol was an issue previously, but with how little she eats nowadays, I'm not so sure.
- We have tried giving mom a variety of foods, including some that are her favorites, but no matter what we give her she only takes one or two bites. We've had the most luck with fresh fruit, especially bananas--she will eat half of one, and occasionally even the entire thing.
- We have tried Ensure and Glucerna. She loathes it and will immediately refuse to drink it. I would be open to other suggestions for liquid nutrition that are not these two or similar.
- I am aware that some folks make a conscious decision to want to die after a stroke, and therefore refuse food. I've asked mom more than once if she just wanted to give up, and she shook her head at me each time, but I can't rule out that she's just trying to appease me. Still, until I get a clear sign that she wants to stop trying to live, and/or she reaches a point where she is no longer responsive (she currently is able to ask the caregiver for water and does so plenty), I'm not going to give up on trying to get her appetite started again.

Thanks for reading and considering my and mom's story.

- Shay, the Anxious

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