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This is more catharsis and any general advice appreciated...


Mom has dementia, is 90 and has now been in NH for a year after going to rehab after a fall. I am the close by caregiver daughter, my brother lives a few hours away. He's very supportive but not here. She remained ambulatory and had language and could chat, and would sing songs she recognized through the end of 2018. She stopped recognizing me consistently sometime in the fall. After Thanksgiving she stopped eating consistently. The NH tried some interventions to stimulate her appetite but because she did not have a medical need, they could not provide someone to sit with her to try to get her to eat. They recommended we hire a private aide to try to get her to eat, but that is not covered and we could not afford that. My brother and I agreed, based on my mother's inclinations, that we would not do a feeding tube or use other artificial means and unless she was obviously in distress we are not sending her for tests and scans. Her hemaglobin levels are very low so after a few weeks of talking about a transfusion we said give it a try and they sent her to the transfusion center. I did not go with her; It did not go well, she refused care, was shuffled around and did not receive the transfusion. I think it was too confusing and upsetting to her; they may have tried to use her bad arm; who knows. I think it caused a bit of PTSD because after that she started refusing food altogether. As of today she has not had a real meal in two weeks. I have spoken to the NH consistently and they recommended putting her on hospice. We cannot get her to eat more than two bites or two sips at a time, then she refuses more and then she gets agitated and seems to experience gas pain.


I met with the hospice nurse today, they took mom off the saline IV as part of the comfort care protocol, she did order some meds for the gas pain (and I am really ticked off at the NH doctor who I kept asking about this!) Mom can sit up but too weak to get out of bed. Hospice will try to get her out of bed for a little bit, they will try to get her to eat. They will give her meds if she is in pain. In one respect I know this is probably the best course, but in another, it is still hard. I read everything but wonder if I am asking the right questions, am I missing something, is there more to be done for her?


So if anyone has any thoughts - it is appreciated, and like so many of you, I do feel guilt and responsibility. I did not do enough, I mostly only visit once a week. I rarely am there on a weekday. No matter how much someone tells you "you should not feel guilty", "you did what was best", it is hard when you read how someone else got all kinds of help to keep the parent at home, or are caring for them in their own home, or are at the nursing home every day.

"Being Mortal" is a book about end of life choices. It really made me aware that once the body starts shutting down, it becomes painful to eat. I think you saw that with your mom and the "gas" pains. A feeding tube would be more pain and not helpful. You are doing the right thing.
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You’ve thought it all out realistically & logically and made the correct choice. I too know the huge “tug” on your heart wondering about your decision.

You and your brother have made the correcf decision. At 90 it’s ok to let nature take its course. You’ve seen a significant change in her and a decline for months. She has stopped eating. Her body is slowing down and that’s a natural progression. It’s ok to let her go.

Peace to the 3 of you on this journey. My situation was similar to yours ...my mom was 89, myself and my older brother were our own little “unit” for years. So my brother & I decided to enroll our mother in hospice. Looking back now I was very fortunate my brother & I agreed.

Now at the end of her days you all can be together to comfort each other. It’s a win-win in an otherwise dire situation.
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Maggiecat, You and your Brother are doing the very best thing for your Mom, no matter how difficult the decision is to bring Hospice in, or how much you might be second guessing yourself, it is definately the best decision!

Hard as it is, we cannot keep them living forever, and I do know, as I've been through this with 2 of our parents, you along with Hospice will be making the end of her life the best it can be.

Your Mom put you in the lead to make these hard line decisions for her, and at this stage, I do not see any other alternative, IMO a feeding tube at this stage of the game just seems like putting her through more anguish than is even fair to her, as her QOL will never improve, even with a feeding tube, so Yes, you are doing the right thing, making the best of a sad situation.

My own experience with both Hospice care decisions we made were very good ones, both for our parents and for the entire family. Your Mom's Hospice team will see to it that she is as pain free as possible, all of the nessasary medications and supplies will be covered, and she will have that many her extra eyes on her, frequent wellness checks, additional bathing and better hygiene as well as many comfort measures given (think full body rub down with lotion after bathing twice a week), and she will have better overall care for the rest of her life, however long or short it may be.

You can also request for Chaplain service, volunteer visitors to sit with her and read to her, music therapy, and maybe even massage therapy, and more depending on what your Hospice offers in services, I would request it all, just to give her more visitors, if you think she might enjoy that.

Just the fact that you have always been there for her, and are continuing to be her voice in arranging this kind of support and care for her now when it Really counts, truly shows that you are a very loving and devoted Daughter, who only wants the very best for her at this most difficult stage of her life, well, she knows that you are, so please do not dwell on guilt or sorrow, as this is the end stage of Dementia and so many other crappy diseases that we all hear about and dread the most. You Are truly being So Loving and So Responsible, so please give yourself some well deserved credit and try to be kind to yourself, as you Are doing the right thing!

My thoughts and prayers are with you, your Mom and your family during this difficult time! Take Care, Stacey B
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Maggiecat, you did good. I don't think any of us, when making the hospice decision, do not feel some level of guilt. I think it is very normal. It sounds like the right decision for your mom. It is the most loving option that could be selected.

It most definitely is a very difficult decision to make. Just know that I am thinking of you. Hospice has support and counseling available for you. Check into it, it will help.
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