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We were told it was very common for people to "leave" when their loved ones were not there. The nurse said they suspect it might be easier for them to let go when you aren't in the room.
If you can be available night and day for her and want to, then by all means try; I do not know what rules may apply to removing a person from hospice during lockdown or even if they allow it.
So sorry you are dealing with this during this pandemic. We lost my partners dad in February, got told he had aggressive leukaemia the eve before we moved. Literally threw boxes in new place and went to see him. He lasted just 20 days and of course very few could attend the funeral.
Whatever you decide, be kind to yourself during this rough time.
Regards,
Second, is she getting the end of life care she needs in the MC? If you know you can offer a better standard of care at home, then I would definitely consider bringing her home.
Third, providing her care will include both good and bad moments. Will you feel better after her death for having been with her during this time? Even considering the stress of providing care? I have found the emotional impact of my parent yelling at me with some form of disapproval or begging me to help them call/visit a dead relative much more difficult than any physical care. It's not easy to see a parent in pain or unable to eat or drink either. Be honest with yourself about your ability to handle these things 24/7.
If your mother can appreciate being home and you can handle her care at home even with social distancing considerations, then I would probably bring her home so I spend those final days and hours with her.
BUT only if she tests negative for COVID19.
Another option would be to have her transferred to the Hospice In Patient Unit again only if she tests negative for COVID19.
You do not want to put yourself, the rest of the family or any of the Hospice staff at risk if she tests positive.
I’ve spoken with the staff about what specifically their end of life care is. I would love to bring her home but this would be physically, mentally and emotionally exhausting and not something I could do.
In my opinion, you’ve arranged the best care possible for your Mom, you’ve done your absolute best.
My deepest sympathy goes to you and your family. It's an especially heartbreaking time to lose someone in a care facility.
Do you have anyone to help you with her care around the clock? I know how you feel about wanting to bring her home. I think my LO would be able to sense it, though, I may be imagining that. I wonder if she's waiting to get home, before she lets go. I know this must be so difficult. Please post with updates, if you can.
Many times in the morning, after breakfast she would need to use the restroom and most often the nurse was with someone else doing all the necessary state requirements of feeding, changing bed, etc. So she would have to wait and would often end up having to use the toilet in her diaper which caused her distress. After several times of this, I would just get her out of bed myself and to the restroom. I watched what they did. I was fortunate in that I am a little younger at 51 which made the physical part easier.
By early Autumn, after several times of her telling me she was afraid to be alone there I started asking questions. One morning, one of the day nurses said I should listen to her, because it wasn't just her dementia talking and that she was more "with it" than people would give her credit. My mom complained that some staff were mean to her. After some thought, I just decided that her being there wasn't worth it. I brought her home and yes it was challenging, yes it was difficult, yes there were sleepless nights for me. But, it was also peace of mind that I knew exactly the level of care she was receiving, I knew when she was fearful or upset or happy. For 2 months she would wake at night and yell out. She was confused, especially at night, and didn't know where she was or how she got there. She would try to get out of bed, she would call out several times a night and I would go in to soothe her and tell her she was safe and she was in her own bed and her bedroom. Slowly she found peace and the nightly call out diminished to maybe one a week. It made me sad to think about the times at the care facility when I realized that staff would tell her to be quiet or worse "shut up" and to go back to sleep. They would stuff pillows on her sides so she couldn't turn or try to get out of bed. I'm glad I got her out of there.
I know my situation isn't for everyone, but after 6 months of caring for her she passed gently and softly one afternoon. She wasn't in distress and fortunately didn't need any pain medications. Having been with her intensely for months I knew her pace and her rhythm. I knew when she was comfortable, and when she was anxious. I knew the day she stopped eating, and then stopped drinking. I could tell she was getting closer to her next journey. I spent the last 3 days with her nearly non-stop, showered her, changed her, and held her hand. Told her constantly she was loved, brushed her hair. I was alone with her, holding her hand when she took her last breath. I like to think she chose me to be with her for her last few months. My other siblings were busy with their family and kids. But I knew I would only have this one opportunity to be there for her in this way. I'm glad I made the decision I did and I know that it isn't for everyone. But if you do have the choice, I say bring her home. I don't regret making that decision for one moment.
All the best to you in this difficult time.
My understanding was that exceptions for visits were made for those actively dying/on hospice. If she is truly dying, they should allow you, with restrictions, to visit.
If she is not on death's door OR they won't allow visits, bringing her home is something you will have to decide for yourself. Talking to those who provide her care would be a place to start. In order to decide whether you can provide the care she currently gets, you need to know what that entails. If she needs specialized nursing care and you don't have the skills/expertise, then unless you can hire a nurse (NOT a CNA), bringing her home might be off the table.