Follow
Share

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 -

This question has been closed for answers. Ask a New Question.
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.
Helpful Answer (3)
Report

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.
Helpful Answer (6)
Report

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.
Helpful Answer (3)
Report

I (NP) hear your sincere frustration and concerns over what to do. I would bring her home, with the understanding that she could return to AL in 2-3 weeks if desired.
Once settled in your home, I feel she should know "at this time" she wouldn't be returning to the AL "as she remembers it". No socializing, no dining room, no visitors from outside. In 2-3 weeks, if hell-bent on returning to AL, then honor your word, and transfer her. FaceTime is a way to stay connected to friends (AL) if available. Hopefully this could be a win-win for both of you.
Helpful Answer (1)
Report

Bring her home. If she hasn't eaten in four days, she won't last more than a couple of weeks at most.

If she's at the AL place, you won't be able to be with her until the very end, and to me that's not acceptable. Hospice is wonderful, and you won't be terribly burdened.
Helpful Answer (1)
Report
dogparkmomma May 2020
Hospice in AL right now is not really hospice. Really too bad. I don't know how it has changed for home hospice. I was fortunate that my FIL had been in this hospice before for 7 months and the primary hospice nurse knew him and was able to really help us assess him since she got to see him. Really challenging.
(0)
Report
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.
Helpful Answer (3)
Report

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.
Helpful Answer (4)
Report

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.
Helpful Answer (2)
Report

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.
Helpful Answer (2)
Report

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.
Helpful Answer (2)
Report

You are doing the right thing. Bring Mom home.
Helpful Answer (2)
Report

My heart aches for you. Mom passed away on Thanksgiving, after living with me for 7 years with dementia and progressive strokes. Besides the miny stokes from a genetic clotting disorder and the resulting in dementia, she had strong heart, kidneys, liver functions etc. She was on hospice the last 6 months, and after a final large stroke in mid Nov, leaving her bed bound and mostly non responsive, she peacefully passed, after no food and water for two weeks. Mom was a bit heavy so that gave her fuel to last so long, hospice said.
I would do it all over again, but it was HARD (physically and emotionally) as a single woman, with no family help. I had 24 hour caregivers and home hospice nursing. I am a pediatric nurse. I told people at the time I don't know how lay people do it. But I was alone as a family member with only caregiver help. If you have a supportive family and friend network, I would not hesitate to bring her home so you can lavish your love on her with your family. If she hasn't eaten for 4 days, with so many co-morbidities and probably multiple medications needed and she can't take without eating, I doubt she could last a full two weeks with no intake. (Before her last large stroke, the only Rx mom was on was a anticoagulant and little something for pain.) However, there is no way to know for sure. I would listen to your heart. Being separated at the end would be so heart wrenching. These Covid circumstances are insufferable. Just pray and ask for leading. No guilt either way. Like one person said, make a choice and move forward, no looking back. Just look for the way of peace in your heart and set your mind like flint and do it. Your mom knows and feels your love either way. She loves you too, and does not want to cause you any further pain. Ask and look for the way of peace, then strength and grace will be given to you either way. Hugs and prayers, dear one. 🥀♥️
Helpful Answer (2)
Report

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.
Helpful Answer (4)
Report

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.
Helpful Answer (4)
Report
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.
(1)
Report
start by calling her insurance co., then you know what coverage you have.
Helpful Answer (0)
Report
dogparkmomma May 2020
Hospice services, nursing, equipment supplies and bath care are covered at 100% by Medicare. Even home hospice. Room and board at facility are not. For some people who need services like IV morphine, they may qualify for in hospital hospice, room is covered too. We just went thru this.
(1)
Report
Listen to your mother. It is sad to watch your love one go , but if she is comfortable where she is. Do not transition her back home. I'm a daughter also, with my mom in a rehab facility. I know your heart is heavy. But give her this last gift. Let her spare you the sadness of watching her last days become her final days. God bless you both.
Helpful Answer (1)
Report

If you are on hospice you can have visitors at assisted living facilities.
Helpful Answer (1)
Report
dogparkmomma May 2020
You can only do that when the person is actively dying. My FIL was discharged from hospital on hospice. We could not see him until death was imminent.
(0)
Report
See 1 more reply
Imho, it may be best to speak with her physician.
Helpful Answer (0)
Report

I'm so sorry for your pain! Well, can she understand it if it's explained to her in person and not over the phone? If so, I'd do that and also have a nurse/doctor/social worker there with you to explain it to her and also because it might make it "more official" and mean more with someone in authority there telling her the same thing! Please be prepared because she might not change her mind out of her love for you! Also, you might be able to get a laptop or tablet with a loud speaker so you can Skype with her if she does go to a hospice! It can be disinfected and they shouldn't have a problem with it! Big hugs to you and prayers! You're doing a great job in a very hard situation! 🙏✝️🙏
Helpful Answer (1)
Report

Your mother is very old and ill and YOU are NOW in charge. YOU make the decision that will best help both of you - do what your heart and head tell you to do and pay no attention to anything else. Then you will be able to live with yourself. Do what you must do - now.
Helpful Answer (1)
Report

First and foremost, do what you need to do for you. It's damn hard living with the regret of; "I wish I'd done this," -regret will eat you alive. Ask yourself this, and ponder hard; could Mom just be saying this, just to see if I love her enough to bring her home...I'm a caregiver for senior's with Alzheimer's, and sometimes, they will tell family "I don't want you with me when I pass." But in reality, without fail, when their time came, there were tears, love, and "I'm so thankful you're with me." Realize it or not, they're testing you, to see if, in fact, you really do love them enough to go against their "wishes"..when that's not what they want at all. Do what your heart tells you to...but make sure it's not done out of guilt. Dying or not, senior's are pretty sharp cookies. They KNOW STUFF....they can sense it. You have my prayers....
Helpful Answer (1)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter