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I posted a few weeks back about my grandma who has dementia and had psychotic symptoms. It turned out she did have UTI, as some here politely suggested, but although we took her to the hospital and they prescribed medication, the problematic behavior only got worse once we returned home.


She refuses to eat, and sometimes even drink. Although we can pressure her/ convince her with water and medication, most of the times she pushes us away, and even hits and claws at us, when we try to feed her. At this point I need to clarify that we know how to handle an elderly person and know the choking hazards, so this is not because we are being forceful.


I am afraid this means she is late stage and basically dying, but I have to ask anyway. If she keeps doing this it is either hospital again or she dies. We absolutely cannot afford a care home and in such facilities she is not accepted because she is not vaccinated (not by our own choice; in my country you have to specifically request for a doctor to come and vaccinate elderly that have low or precarious mobility, and the state/ the doctors have ignored us for so many months that you wouldn't believe me).


What can we do? We are desperate at this point.

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Her refusal of food and medicine is a common behavior in someone moving towards the end of life.
I don't know if you have home hospice care in Greece, or some sort of palliative care program.
In the states, those resources provide lots of support and care for her, and all of you.
Many medications are not helpful when someone is at this stage - the agitation of trying to get a medication ingested outweighs any benefit. Many medicines are to manage chronic conditions - high BP, cholesterol, blood sugar, etc - to prevent complications of those diseases in the future.
Maybe just give medications that are for her comfort....and offer small amounts of foods that she likes...soft and sweet usually is acceptable. No coaxing or forcing, no begging, or frowning at her for failure to eat. Just enough for comfort of the taste in her mouth. Use a washcloth wrapped around 2 fingers to moisten inside her mouth, if she lets you. Or a bit of water on an eye dropper, placed between her gums and cheeks. Not right on the tongue.
Try not to worry about dehydration (probably already happening) or infections (antibiotics might offer temporary relief, but her immune system just doesn't do much any more.) Trying to treat those processes prolongs the dying process but does not change what is happening in her body.
I don't know if she is bed bound already, but she may soon be.
A hospital bed with rails so you can adjust her position and change the bed linens and diapers under her is a huge help for you and the family caregivers.
I'm sorry that the health care system in your country seems to have nothing to offer you at this point.
I am a hospice nurse, so the suggestions come from that experience. Your mom's statement that dying in her own bed is better than the hospital sounds like your mom may realize that death is approaching. If your grandma's organs are failing, it is not necessarily a very painful process (as compared to dying of cancer, heart failure, respiratory failure).
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Deppiet Feb 2022
Sorry for the belated reply, we have been really occupied with my grandma these days and I even forgot about this post. Thank you for replying. I think yours was perhaps the most helpful reply here, because it helps me accept what I already knew- there is nothing we could have done and didn't do at this point. We have been worrying over this quite a bit.

We are keeping her home, thankfully my SO is a doctor and we know some things about taking care of someone bedridden. She still has strength- She shoves me extremely painfully when I try to hold her up to take temperature or moisturize her- but she is like a ragdoll, not trying to stand, not swallowing meds, not doing anything at this point.

We give her extremely small amounts of drinkable supplements with something sweet, although she spits out most of it. I try to read or spend time next to her, although she does little more than reach out for a hand or so. We don't pressure her because at this point we don't want her to die in distress or at a hospital bed- she is at home and she is relatively peaceful when not disturbed.

I find myself feeling guilty because she was a very bad person while still having her faculties, and we kept wishing she would die, but now that it is happening, we are sad and helpless. I just hope we are doing all we can, you know? And if all I can do is let her know I am there, then so be it, but I am not even sure she would appreciate having us around were she conscious (she hated everyone, and I mean everyone).

Anyway, thank you very much for the tips and for helping me accept what I already knew.
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The UTI, did they just give medication and send her home? If so the medication may not have worked,

When a UTI is present and serious, IVs are needed. A couple of days in the hospital. Also, a culture should be taken to determine what the bacteria is and the correct antibiotic to use. The antibiotic gma was given may not have been the correct one. With my Mom, they were using an antibiotic with penicillin in it which she was sensitive to. Once they changed out the antibiotic the UTI cleared up.

UTIs are very serious if not taken care of. You need to get Gma back to the hospital. She may have become septic and this is very serious. She needs IV antibiotics and a hospital stay until its cleared up.
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Deppiet Feb 2022
We stayed at the hospital for a week. She had an IV and was prescribed/given antibiotics. They run tests and told us she was good to go, it was not our decision to get her back home, although during her stay there she was very very stressed and kept everyone awake at night. Once we got out we bought everything that was prescribed to her, including the antibiotic she had to take, so I doubt that is the problem. The only side effect of the antibiotic was diarrhoea which lasted two days. I doubt she is septic, she is not in pain and she does not complain of anything, she drinks fluids and such, she just really, really gets upset at the sight of food. I realise our only option might be the hospital but with Covid and the whole healthcare worker situation hospitals here are understaffed- we had to wait the whole week before ANY doctor spoke to us- and, frankly, quite gross, so we run the risk of her dying of something she catches there. My mother says that if it is her time she should die at her home, not in some horrible hospital bed, and I agree, but this mentality is as if we are condemning her.
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No, you can't force feed.
But you can offer small portions of easy to chew, easy swallow food she may like.

The last UTI (cystitis) I had brought awful bloating & I lost my appetite. Antibiotics then made my gut feel a bit off too.

Another thought is constipation. That also will result in not wanting to eat.

Does she complain about tummy pain? Or even sore mouth/throat?

Maybe just offer simple things, easy to eat, fruit & Greek yoghurt for a few days?

If things get worse you could take her back to the hospital.
IV fluids could help with dehydration, then she could return home again.

Consider what she would want as time goes on, especially regarding comfort care approach vs invasive treatments like feeding tube.
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You can't force-feed her, so short of sending her to a hospital for a feeding tube, I don't know what your options are.
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Am not sure what country you're in, but is there a Public Health Department available? I know here in the U.S. they'll come out to the house for disabled folks to get their vaccine at no charge.

If you think she is actively dying - can you send her back to the Hospital in an ambulance and ask the Hospital to give her the vaccine while she is being treated?
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Deppiet Feb 2022
Greece. I know that is weird, I mean I am on this site after all, but to be frank greek sites of this sort are way less expansive and populated by less knowledgeable users, so I figured my best chance at actually getting sound advice was this site (well, since I am basically bilingual and all.)

No, they don't charge here, either, and supposedly once you formally ask them to come, and once your doctor formally confirms that the patient cannot move, they come to your house and do the Johnson vaccine. We brought the family pathologist months ago and did our part of the whole proccess, doctor confirmed she has mobility issues, filed the equivalent of the respective petition, they called us to let us know everything was okay. Fast forward this Christmas, no one had come, and each time we tried to trace the doctor that was supposed to give her the vaccine, or anyone else for that matter, we were either told that 'X is on vacation/ is out of town' or, my personal favorite, 'I am not in charge here, so I cannot give you an answer'.

I thought of asking for the vaccine while she was in hospital, indeed. We stayed a week and in order to talk to a doctor you had to basically beg and even then the doctor would slam a door in your face and say they were busy. Tbh, they are all overworked and understaffed, so no blame from me. But we did not manage to make any progress on that front.
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