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Heart failure, liver failure, systems shutting down. She has not eaten for 4 days. I want to bring her home with home hospice and caregiver help. She wants to do hospice at her assisted living facility to spare me the care and pain. Assisted living would not allow visitors and she would be in quarantine with no visitors until right before she passes. I cannot tolerate this thought and am telling the social worker/nurses to intervene ( she can't hear me well on the phone because of deafness) and explain why I need to override her plan and bring her home with me for the end. I have cared for her for several years until she went to rehab in January after a heart attack and stroke. My heart tells me I am doing the right thing, but part of me is programmed to listen to my mother...do not want any regrets. Help -

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I love compromises...they either make both people satisfied with the result or both are unsatisfied so here goes......
Ask mom if she would come home and be on Hospice for 4 weeks, if it is to difficult for you, or if she is unhappy Hospice can arrange a transfer back to her AL facility.
You would have her home for a while and you can care for her with the help of Hospice.
I am sure one of the reasons she wants to go back is she has friends at her AL facility that she would like to see again and she knows that might not happen.

Your last few words to your post..."do not want any regrets..."
There will always be regrets, whenever we make a choice we always wonder "what if". Make the best choice for the NOW and don't look back.
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No matter what you do, there might be regrets. But make the best decision and try not to beat yourself up later. Especially now, there are not really any good choices.
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Talk to a few places that do hospice to see what their policies are. If none will allow you 24/7 access. Explain this to your mother. Get nurses and social workers to do the same. Contract with a home health care agency that does hospice so you have 24/7 care for her. May God grant you a memorable time together and a peace-filled passage for your mother.
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Has the Assisted Living expressly stated "no visitors" even with hospice? There is usually an exception to that rule with family visits with hospice. Check it out. Ask the hospice too. They might be able to advocate on your behalf. Don't delay.
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elaineSC May 2020
My aunt passed away the last of April and my cousin (her daughter) was so upset because she wanted to be with her at the end but my aunt was so upset at the end because even though she knew what was going on with the virus, when she became worse, she said to my cousin on the phone "you just don't want to come!" My cousin went to her window a couple of times but she ended up dying there at the assisted living center with NO family present. It hurt my cousin badly and I felt her pain. Anybody would. Now, the word was, if it was end of life stage that they made exceptions but they DID NOT. So sad. This was awful. If your mother is on morphine/sedatives, she will not know if you are there anyway. I had sat with my Dad in 2016 and my mother in 2018 until very late but they both ended up passing after midnight when I had gone home to rest & get some sleep. They both were sedated due to struggles with respiratory distress and did not know that I was not there. They were out of it. That helped me because if they had been awake & knew what was going on, I would have wanted to hold their hand. We had already said our "I love you's" so I was okay with that.
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If she prefers to be at the AL it's her choice, and I think you should respect that. Does she have dementia or anything that would effect her ability to make decisions regarding herself? Is she still in the same AL as in your last post, the one you say she loves and loves the caregivers? It sounds like you want her home out of some sort of perceived obligation, and not what she actually wants.
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She wants to go to the AL because she thinks her care is too much and she will be a burden to me - and wants to "spare" me after what we went through with my Dad. She likes the facility when she was not in quarantine - and was able to eat with other people there, etc. If she returns ( I am in PA), she will be in quarantine for 14 days - only her nurse and PCA allowed, and the in hospice there, no visitors until she is actively dying . There is no anticipated easing of visitation at the facility until August ( anticipated). Under those circumstances, I think she will decline faster and sooner. If she comes home and improves, I certainly would understand her going back there ( her apartment would still be paid for), but if she continues to decline, she will already be home. She is just so weak and fragile and bedridden right now, she could not do therapy anyway...if she starts eating, stabilizes and improves, we re-evaluate. The facility told me to follow my heart - and 2 of the care administrators said under the current COVID restraints, they would certainly bring their parent home and find a way to make it work.
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We literally just went thru this. My FIL had been on hospice for 7 months, improved and was taken off. Since I have not seen him for 2 months, I could not track his further decline. He was taken to hospital with some issues, evaluated and we decided that at 95, with his other issues, no further treatment would be of value. He had not lived with us; he was in a memory care facility. I really did not want to take him home; he would require 24 hour car and honestly I did not want to deal with him dying here. He had been at MC for 1 year and they really took such excellent care of him, we just had him go back there and got hospice restarted. He lived 10 days and died on Monday. Hospice care in the MC was quite different because hospice caregivers were not allowed in for routine care. The MC staff took care of him and I got daily updates. We were given an option to come in and see him when they felt the end was near. We opted not to, as we had not seen him for 2 months. He was so peaceful we did not want to risk upsetting him to see him with us in full PPE as he had been in hospital. For us, it was the right decision and we are very peaceful about it; a nurse was with him at the end.

If you are sure you want to take care of her at your house, then do it. But you do know that hospice only is there for a couple of hours; they are not there 24/7. Since she had not eaten for 4 days, she may not live much longer. If you are comfortable with the care she will need, then do what you want to in your heart.
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I had experience with home hospice and another experience with a hospice facility associated with a hospital. Ask if there is a hospice facility near you that is open. The hospice facility cared for the patient and the family. I don't know how the pandemic has changed the rules but my mom could stay all night- they had a guest bedroom- and if she got up at 3am, she could make herself a cup of tea and talk with the staff if they were available. The family was welcome to drop in anytime. It was a very good experience.

Home hospice was very hard. It was rewarding and I'm glad we did it, but it was hard physical work. I'm sorry you are going through this. Losing your mom at any time is wrenching. The current situation makes things even harder.
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I just went thru this. The hospital social worker helped. My mom was sent a rehab skilled nursing where she had been to before. They knew I stayed with her 24/7 in past. They gave me permission to be with her. But I had to quarentine in her room. That meant I could not leave room, had my temperture taken daily and could never leave building. All patients had been tested neg since coming from hospital, but were still quarentined 14 days. At the end hospice covered care, but out of pocket for room /board, which worked.
At first some improvement, rehab was her sitting on side of bed with help,, then could not swallow, stopped eating, hospice only 1 day. 1 week total. But I was with her and had help! Very grateful for this time.
AL could not get an exception.. I would not have been allowed with her.
Home help if needed is harder to get with virus, too.
However moving your mom will have positive or negative affect too.
My mom only lasted 3 days not eating, but was told usually longer.
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Take her home so family can say goodbyes ! She will be living her last days without pain and you know you did your best for her! Hospice covers all costs, meds, supplies ect,
God Bless you & Mom. Been there with many friends & family with the home support of hospice & worked in a inpatient hospice unit. With Covid restrictions I would not send her back to assisted living as she’ll not have the comfort of visitors & May die alone.
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