What are the options when chewing and swallowing food is difficult for an advanced dementia patient?

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My loved one is in a Memory Care unit. She is stage 6 now. So far she still eats fine, but I'm wondering about when she doesn't, as that is likely in the last stage.

I've read here and other sites about how the chewing and swallowing become affected. The risks then become great for choking and aspiration. But, what happens then? If the patient did not want tube feeding, and I agree with that based on all my readings from many sources, what happens? Do they go into Hospice at that point? Does the doctor give you various options? Do they just keep trying soft foods or liquids with thickners? I just wonder what choices you may have at that point.

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Sunnygirl, I have already gone through this with my mother. She died on Sunday from end-stage Alz. and congestive heart failure. A few weeks before she died, she stopped eating, and then she stopped being able to drink. Since she was under hospice care there were no feeding tubes and she was allowed to die, safe and warm in her own bed with no artificial means of prolonging life. She was being given pain meds. Not trying to feed them is far harder on the caregiver then on the dying person as this is just nature taking its course. As long as she wasn't in pain my dad and I were OK. There is nothing easy in this, but be gentle on yourself, as you seem to be a very caring person. Blessings on you, Lindaz.
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Oh, I will check to see about the other residents doctors. I think most of them see the ones I have researched.
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Thank you for your kind words. I've done everything in my power to do the right thing for my cousin. She has no one left. The few other family members are old, infirmed or not interested in her at all. It's very sad. Plus, I promised her mother, on her death bed, that I would look out for her. Of course, we had no idea then that dementia lay ahead. She's only 63 years old!
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You are being very conscientious, Sunnygirl1, and very pro-active for your cousin. I do admire that.

In the end stage, the doctor in charge will probably be the hospice doctor, and you will not necessarily work directly with him or her, but with the hospice nurse. So the doctor you are looking for now is for the interim -- from now until Cousin goes on hospice. Just something to keep in mind ...

My husband' death certificate says he died of Lewy Body Dementia. The autopsy report states the cause of death was pneumonia and pulmonary embolism. These are the most common causes of death in dementia.

Be aware that aspiration can occur on saliva. Eating is not necessary for that to happen.

My husband turned down a feeding tube twice in our ten-year journey with dementia. He also tried and then rejected a soft-food diet. He wasn't eating much at all in his last few weeks, but when he ate it was whatever he wanted. He had scrambled eggs with cheese and salsa the morning he died.

Bless you for you concern and care for your cousin.
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I just had a thought that I want to share. Talk to family members of other patients in the facility, the ones that are there all the time. Perhaps they could give you more info on the doctors on your list.
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I think I will. Since she moved to the Memory Care facility, she's further from her primary doctor and we have discussed changing her doctor to someone who is closer to her facility. I've been researching and honestly, the choices are limited. There are only a few who practice Geriatric medicine. Then, the one who's listed as Palliative care, isn't on the list at our the local hospital where she would go if necessary. The third one sounds good, but I read some odd things about him in a review online. I'm just not sure which way to go. It's a big decision.

I've repeatedly spoken with the staff at her Memory Care facility about doctors who work well with them, but I never get any feed back. I guess they are careful not to favor one doctor over the other. I just don't want to select one who is not available in emergencies, is slow to respond, orders too many unnecessary tests, etc.

I guess the only thing I can do is go meet with the three doctors and then make my decision. But, that is time consuming. I'll get it done soon though.
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Perhaps your cousins doctor could refer you to someone who does provide palliative care. I am assuming she is not ready for hospice. Regardless you ask your questions just like you asked in this forum. The more information i had and understood allowed me to be comfortable in making the decisions i needed to make. IF you don't get it the first time, don't hesitate to ask again. Hopefully you will be able to talk to people who will explain things in a clear concise manner. I think you are on the right track.
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Yes, we've already decided no feeding tubes. This if for my cousin. She had to make decisions for her mom some years ago and she made it very clear her wishes on the matter, so I am at peace. Besides, from everything I've read by professionals, the feeding tubes are not helpful. I won't put her through that for my wants.

The concept of Palliative Care was introduced to me at her first AL. It was then I started really facing the progression of her condition and her future. She has progressed very rapidly, especially after she fell and fractured her spine. She is now in a Memory Care Unit.

I'm not really sure how to discuss it with her doctor until the issue arises. I know he has all the signed paperwork in her file. He confirmed this while we were in his office. I was told that his practice does include palliative care.

I think I will schedule a meeting with the Memory Care director and go over what I might expect. Thank you for your thoughts.
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Maybe speaking to someone about palliative care could help explain your options and help with the choices you will need to make in the future about your moms care. If you have already decided no feeding tube (applaude you for this) then you have already prepared yourself for some of what is to come. Spend as much time with your mom as you can, things can change very quickly. Good luck and God Bless.
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At the final stage, when they are not eating, they are not digesting well either. Forcing stuff in there when the system is shutting down is not particularly comfortable for the patient. Hospice is then the better option, pure comfort care for the final weeks.
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