Increasing comfort meds for mom, caring for her in my home

MoniqueV2024

Hello to the rest of the incredible caregivers here -

My mom is 73 with dementia (possibly Fahr’s Disease), and moved in with my husband and I in October after a series of facility failures. We began hospice in late January after home health could no longer help and I ran into safety issues trying to shower her due to her decreased mobility.

About a month ago she had an 8-hour rally where she was the most conversational she’d been in months, was sentimental, wanted to hold hands all evening, ate a bunch of pizza, saw her long-deceased Dad in the room and said “he is waiting”, and my dog was glued to her all night. I thought it must be the end and now it’s a month later and we are on a steady decline down.

Her appetite and willingness to drink anything is overall declining but can vary. She’s been restless the past 2 weeks but today cakes the cake - I’ve been administering comfort kit meds based on hospice’s guidance and she’s still fidgeting nonstop.

I am utterly exhausted. My question is this - has anyone been in this restlessness toward the end position and perhaps have any personal stories you can share on what happened next? I’m trying to understand what to look out for / prepare for in the days ahead.

On top of everything, hiring help has been a nightmare this past 5 months but I’m hoping we can get consistent care during the work week so I can get a break. I think I’m finally acknowledging and trying to accept how big of a toll this has taken on my mental and physical health from the perpetual uncertainty. Not to mention the interference with my general life and work.

sandwichone123

My mom had terminal restlessness, and I wish someone had told us about that. We didn't get hospice on board until the last 48 hours of her life, but they were who gave us the term. Apparently it's pretty common. My mom died 3 weeks after she started being really restless like that.

It was tough because she was in the hospital, and no one in the hospital told us she was near the end of life—didn't refer to hospice or anything, just kept yelling—YELLING at her (she wasn't hard of hearing) to DON'T GET UP, YOU'RE GOING TO FALL, etc. We finally got her discharged and took her home where she could move around without getting yelled at. She puttered around the house for another two weeks before she had a visible decline, we gathered the family and she died a week later.

Death is so unpredictable. It can be "last hours" several times over a period of months, or like my mom go from no healthcare professional will admit mortality exists to death in weeks.

jiffy

My mom with dementia was on hospice for 6 months after surgery. The comfort kit meds were not helpful in my opinion. After hospice ended I weened her off those meds. She's now on a med for depression and a med for agitation and she's a lot better, happier, easier to work with, no more seeing things are aren't really there and no more sun downing.

JeriLynn66

Talk to your Hospice RN about the continued restlessness. They can adjust her medications to make her comfortable. I'm so sorry for the circumstances and wish you peace …