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re: My Mom has been getting worse with her dementia
Posted on 4/30/24 at 1:12 pm to GRIZZ
Posted on 4/30/24 at 1:12 pm to GRIZZ
Had an appointment yesterday to see about putting on her on hospice and it was not reassuring. My mother is in excruciating pain from her degenerating hip, They basically admitted that upping her pain meds any more would cause her to be sedated all the time and that they wouldn't do anything to encourage her to eat and drink, which she hasn't been doing for a few days, so she will probably decline and die pretty quickly and not be able to interact with us very much if at all.. You see the testimonials about how wonderful hospice it is but it's clear to me the reality is going to be something else, at least for us.
OTOH she was crying in pain when they got her up to use the bathroom today so we have to do something.
OTOH she was crying in pain when they got her up to use the bathroom today so we have to do something.
Posted on 4/30/24 at 2:26 pm to Jim Rockford
Just seeing this thread, but it brings me back to my dad. He passed a year ago in February after a few year bout with dementia.
I don't have a whole lot of advice that hasn't already been said. But a few things stand out:
- Take care of the primary caregiver. My mom was my dad's primary caregiver, and it was exhausting for her. Just giving her some time to go grocery shopping by herself or to a doctor's appointment without having to worry about dragging him along was some relief. As much as this disease ravages the person with it, it affects the caregiver just as much.
- Always stay calm. You can't solve anything by getting upset with anything he/she does. It will only make things worse. Particularly if Sundowners is involved. My dad would be relatively peaceful during the day even though he didn't know what planet he was on. But come evening, he turned into a different person. The longer days certainly helped, because in the winter when it got dark at 5pm, it was really rough. But know that whatever he/she says is not to be taken personally.
- As others have said, look into hospice care so that a nurse can come to the house several times a week. There are no medications that can slow down the process, but a few can help ease some of the moodiness. However, some of them can have the opposite effect, so some experimentation may be in order.
- I wish we had gone with a memory care facility earlier. By the time my dad got to be too much for my mom to handle on her own, he was too far gone. He spent 2 nights in a memory care facility, then was unable to eat, drink or communicate. He spent the next 10 days or so in hospice care before passing peacefully. I was fortunate to be at his side when he took his last breath. I'm tearing up now just thinking about it. But it was as much of a relief as it was sad. Seeing him like that for years and the toll it took on my mom was rough.
Good luck to all going through this. It's a truly awful disease.
I don't have a whole lot of advice that hasn't already been said. But a few things stand out:
- Take care of the primary caregiver. My mom was my dad's primary caregiver, and it was exhausting for her. Just giving her some time to go grocery shopping by herself or to a doctor's appointment without having to worry about dragging him along was some relief. As much as this disease ravages the person with it, it affects the caregiver just as much.
- Always stay calm. You can't solve anything by getting upset with anything he/she does. It will only make things worse. Particularly if Sundowners is involved. My dad would be relatively peaceful during the day even though he didn't know what planet he was on. But come evening, he turned into a different person. The longer days certainly helped, because in the winter when it got dark at 5pm, it was really rough. But know that whatever he/she says is not to be taken personally.
- As others have said, look into hospice care so that a nurse can come to the house several times a week. There are no medications that can slow down the process, but a few can help ease some of the moodiness. However, some of them can have the opposite effect, so some experimentation may be in order.
- I wish we had gone with a memory care facility earlier. By the time my dad got to be too much for my mom to handle on her own, he was too far gone. He spent 2 nights in a memory care facility, then was unable to eat, drink or communicate. He spent the next 10 days or so in hospice care before passing peacefully. I was fortunate to be at his side when he took his last breath. I'm tearing up now just thinking about it. But it was as much of a relief as it was sad. Seeing him like that for years and the toll it took on my mom was rough.
Good luck to all going through this. It's a truly awful disease.
Posted on 5/1/24 at 7:31 pm to Jim Rockford
Hospice nurse came today. They'll start her on morphine in the morning. Her bp is 60/40 and she has an irregular heartbeat. Nurse said she might perk up and start eating and drinking once the pain is under control but based on her observation she has a few weeks,probably less than a month. Maybe less than that if she doesn't start taking nutrition.
I've never felt more alone.
I've never felt more alone.
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