My Mother is in late stage Alzheimer’s Disease, has lived in assisted living the last 5 years, and recently started hospice. My state is actively restricting visitors, but hospice says I can visit in the center when she is “actively dying”. I have not seen her for 4 1/2 months other than on my echo show device. (Like FaceTime but no button pushing by her is needed) Yesterday I got a peek at her in person for a brief minute sleeping, as I had to pick up some furniture from her room at the center. Her decline was easily apparent. I worry the isolation has affected her in many ways. They told me she had refused food that day and is sleeping much more.
As a daughter who has always been close with my mom, I just want to bring her home and be with her til the end. To hold her hand and sit with her❤️. If it’s best for her I will find a way to make it work. My question is what is best for her? I don’t want to act irrationally and make changes that make things harder for her, as I know change is hard for the elderly. But I also don’t want to abandon her at end of life which COVID Seems to be requiring. Any insights would be greatly appreciated as I navigate a difficult situation made even more so by the challenge of our time...
Within a few days he was back in hospital where I could not go, then back to another SNF for more “rehab”. At that time I was not aware of just how bad his health was. When he arrived at the SNF they put him on 14 day quarantine. Even though he had been tested for the virus and was clear of it. Which once again put me in a position of being unable to even SEE him because they wouldn’t allow him out of his room. After 5 days I brought him home. He wouldn’t eat, take meds, and barely took any fluids.
Within a few days he was back in the hospital again. They wanted him to be discharged after a few days to another nursing facility. I said No I’m carrying him home. We set up hospice and brought in the hospital bed, lift, oxygen etc.
By that time I realized that he didn’t have much time left. I told him he never had to go to the hospital or skilled nursing facility again and he didn’t have to do anything he didn't want to. He said Yes! And then smiled his last smile.
You don’t live long when you don’t eat or drink anything. He died in less than two weeks. That was May 21, 2020. I was with him holding his hand when he passed. Hospice was such a blessing to us. I don’t regret bringing him home for his last days because I know he was comfortable, cared for and felt loved. Do what you feel you should, but I’ll bet your mom had rather be home with you.
There are so many things to consider. Can you provide around the clock care? Can you have hospice care at home? Can you handle if someone brings COVID into your home to her? Can you bear to be separated from her during her final days/weeks/months? Is mom at a point where she would be aware that there has been a change in her location and routine?
Look at all of the pros and cons and remember that you have to make the decision you can live with. There are no do-overs. No chance to go back and play out the other option. There is no absolute right or wrong answer. Neither option is easy (being distanced vs providing daily care). If your pro and con list is fairly equal, let your heart break the tie.
Prayers for you and your family, my friend. Praying for wisdom to make your decision and for peace with consequences of that decision.
If it is possible, bring her home. But ask what they do for her on a daily basis first. Can she get up? Can she walk? Will you be changing diapers all day. Can you do all that will be required? If you can't and you cannot afford in home care, you may find yourself having to take her back. Ask social worker at the facility what kind of help you can get - hospice does come to the home - and then evaluate.
These are hard times, especially for those who are sick, elderly, or on a decline. They may tell you about visiting at end of life, but that can change, too. Some facilities have no visits at all, even at end of life.
i am glad I let my mom die in the memory care and not bring her home as she was so well taken care of there. Care that would not have been feasible for me to provide. You have to think about how much care they require and can you provide that care?
Best wishes.
A good rule of thumb is adk yourself what you would want.
My 96 yr old Dad wants to be in his own home to die.
I went through the same pain as you two months ago. My mother was in a nursing home and contracted the covid virus. She had late stage dementia, could not communicate. She had a fever and was not eating or drinking, needed oxygen and was becoming weaker. I was getting daily calls with updates and knew she would not get better. She was fighting and her body was getting so tired and weak.
I too thought of taking her home wanting to be with her through all this. I knew I couldn’t take care of her as the nursing home could. They had all the equipment, nurses and doctors. My mom needed a lot of care. I also knew the move would be very upsetting for her. She was used to her surrounding and familiar with the staff and their voices. This did hurt very much, in my heart I wanted to be with her, but thinking logically (which is very difficult), I knew this was the best for her keeping her comfortable as possible.
The nursing home did let me come in when they knew she was not doing well. They said if I wanted to see her, that day was the day. I could go in with masks/gloves/protection and stay for 15 minutes.
I did go and see her and she was so weak but looked very comfortable. She responded to my voice, opened her eyes and tried to talk, but couldn’t because of her breathing difficulties.
I was able to talk to her and touch her and spend some time. I hope it gave her some comfort knowing I was there. And hopefully even though I left, she may think I was still there.
It is very painful not being there, but I feel my mother did not have a sense of time and how long I was away from her. She was very sick and weak, so mostly she was sleeping. She did pass away four days later. And though I had the opportunity to see her, it is still painful not being there every day by her side while she was sick and when she passed.
I know it is a personal choice to decide whether to take your mother home and only you can make the decision. I only can say what was best for me and my mother.
I know how painful this is. I didn’t see my mother in two months prior to her passing and she has been gone for two months. I think no matter what decision you make; it will hurt for some time. Our mothers are very special and a big part of our lives.
I am so sorry and wish you much strength in making your decision. My only advice is asking the facility for a visit.
Please take care.
I do have a question, you mention a device which allows you to peek in on her.
Can you share what that is? I have my 89 year old Dad with dementia in a rehabilitation facility after falling several times and than breaking his hip AND Mom (86) at home in her apartment. Even though I am only 3 miles from Mom, it would be nice to be able to "peek in" on her, especially when she gets herself so worked up about not being able to get a hold of Dad on the phone.
Thank you and God Bless you
One of the parishioners at our church had a smart phone and he could check on his mother in her bedroom, could see the whole hospital bed with her in it, hear her voice, he was not too far away. She was on Hospice. It worked quite well for him. I was amazed at such a product.
Best wishes
please if you can bring her home and do your best to take care of her yourself .. it won’t be easy but your mom needs to feel that love right now.. unfortunately I lost my aunt in a nursing home in May and I truly believe part of her decline was the family not visiting because we were there all the time ..she too was late stage dementia.. could not talk walk eat for herself go to bathroom .. I also think because of her condition the facility paid less attention to her because she could not complain or tell us anything even if and when they did do Zoom .. so please give her the respect dignity and love that she needs right now .. if it’s her time let it be with her family and not some uncaring facility and staff
🙏🏼🙏🏼🙏🏼🙏🏼
I should work with hospice and the facility and see if you can negotiate your way onto her care team. They will be adopting PPE and other infection control measures; perhaps you could ask to undertake training in compliance so that you can be present for your mother.
Meanwhile, you're still able to monitor her daily? I appreciate your longing to be there, but if she is mainly sleeping and doesn't seem distressed I should let that be a consolation. I'm so sorry for what you're going through.
It is a real problem. Infection control - getting through the pandemic with the least possible loss of life and long-term damage - has to be implemented on a population level. But we aren't populations, we're individuals, and what's right for the population can be very hard on people. I'm not suggesting there is a solution, mind.
My situation is quite similar to what you are experiencing. My mom is 95 and is in the late stages of Alzheimer's as well and had been living in an AL facility since the end of February 2015. My mom had been doing pretty well until the pandemic when her AL facility was running rampant with the virus and all the residents had to stay in their rooms. I felt terrible that she was alone with nothing to do and probably wasn't able to fully understand what was going on. We did try to do Facetime with her but, once she became so ill she wasn't able to get to her iPad in the living room while she was in bed due to weakness. After being in the hospital for 4 days because of severe dehydration along with contracting COVID-19, she was sent to a rehab facility for three weeks. I didn't have the option to have her in our home. Actually, it isn't even our home as we are renters plus the fact I'm taking care of our aging Dachshund who is almost completely deaf and has developed new "barking" behaviors which would not work for my mom even though she loves her. So since I refused to take her back to the COVID laden facility, we found one facility that would take her as long as she tested negative and was able to get her an apartment in the memory care unit with a window so we could see her. She too had stopped eating and was sleeping more. I'm her only child and have always been extremely close to her just like you mentioned in your post. While she was in rehab, I called hospice because they had taken care of my dad briefly before he died in 2004. She still wasn't qualified but, at the end of her stay she had lost 20 pounds and still wasn't eating. Hospice then said they would be able to take her on when she was released to the new facility.
I am at peace with the fact she is getting more care at the new facility along with hospice being involved too. But, especially knowing that if there comes a point where she really is at the end, that I will be allowed into the facility to be with her as now they have their first two cases and my mom is confined once again to her apartment. Since April, there have been at least four times that I thought she would pass away and already had contacted the mortuary as well as the cemetery to do some preliminary paperwork. Today, the hospice nurse called and said she is doing well and has started to eat a little more. Also, when she first moved there on May 19th she was being combative and uncooperative. The hospice doctor recommended a very low dosage of something that would take the edge off as well as help her sleep throughout the night since she was falling in the middle of the night - we suspect she was trying to get up to go to the bathroom as she would never push the pendant button. Normal nighttime sleep did wonders and now she is awake when she should be in the mornings instead of sleeping more or at odd hours. She is also in better spirits. That being said, you never know how long they actually have so if you do decide to bring her home with you just like "lealonnie1" said it can be a lengthier process than what you might think. Also, your mom might be a stronger person than you might think just like my mom. I hope you find the right solution/answer to your dilemma with your mom and peace for yourself. Do take care and let us know how things are going!
When my dad was dying, he lived in Assisted Living with my mother, his wife of 68 years. I may have taken him home had he not been there with my mother; but he did have her there with him, so I didn't. For me, it was very very difficult to witness my father struggle to breathe at the end, and to get agitated and require medication from hospice, etc. What saved me was the ability to go home and decompress, you know? I don't think I could have gone through the trauma of watching him pass in my home.
I know how hard this whole process is, and I am sending you a hug and a prayer for peace. Whatever you decide to do, know in your heart it's the right decision. I hope your dear mom has a smooth and swift transition to her next stage of eternal life.