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...
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.
If you can tend to her and her needs with the help of Hospice and if bringing her home would quell any misgivings you may have then ask Hospice to arrange it for you. They can order the bed and other supplies to be there when she gets there so she could be settled in rather quickly.
If she is aware of where she is and who is caring for her a move might upset her and cause a faster decline.
If she is unaware of where she is and the people surrounding her a move may or may not effect her.
(Sounds like I stirred up muddy water for you..in other words I doubt the above made things any easier for you)
But if you can care for her at home without a lot of stress to you or the rest of the family. Possibly hire a caregiver to help out for a few hours a couple days a week. If that can be done it might help.
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.
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.