Feeling a bit sad - one more step in the progression
Let me start by saying, I know how lucky we are. I am, really am, counting my blessings.
But my LO is quite elderly and their condition is declining. They have been on hospice since the summer. The hospice has been great. But this week both the social worker and the RN independently asked if we would consider a hospital bed. I checked with the manager of the MC and they agreed it was time. So we agreed.
I know it is inevitable, but the dismantling of the bed I purchased for our LO, when they moved in and the coming of the hospital bed have really hit me as a tangible sign of progressing towards the end.
I am so sad. Moving my LO to be near me and being their local family support has made me feel very protective and close to them. I am just not ready. For some reason this step has become very symbolic to me.
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it is difficult when something, in this case the changing of a bed, in my case a fall and stay in the hospital with my dad causes us to realize like it or not this disease marches on. I was upset and sad as well but as the days marched on there was so much happening that I realized I couldn’t stop it and eventually found some peace. Now that he has passed on and is at peace I miss him a lot. Even though each step of the journey we know is going to happen, it still isn’t easy when it does. Give yourself the grace to mourn it and to also find glory in whatever you can each day. I pray for you on your journey.
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Today I visited my mom and came home crying. In the week since I saw her last, she has seemingly aged considerably and is weaker and could barely get out of bed or sit up. Weirdly, she was sort of able to hold a decent conversation though she faded in and out - at one point we laughing about somee memory or other then she was telling me incoherent stories with weird details. What made me cry, though, is the ED of the AL said that she may need to be reassessed and might need to transition to their MC floor, which means a hospital bed and fewer of her belongings. My mom is very afraid of this floor (or she was a week or two ago - some careless person told her all about it along with some scary stories) and she believes going there means she is "too far gone" and that's it for her.
I don't know much about MC and what it means but I'm scared.
All this to say, I hear you about the sadness and not being ready. When I left, all I could do was pray she'd make it through the holidays and that maybe she'll miraculously rally back to her old self - before her brain started to betray her.
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MC is a locked facility with usually 2 people to a room. In my opinion the staff there is better trained to care for dementia patients. I would trust their recommendation. I would also ask for a hospice evaluation. Hospice offers so much. Another set of eyes on your LO, supplies, Counseling and clergy. They will reevaluate her every 6 months. Maybe she won’t remember what the person said about MC.
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MC has been a huge blessing for my mom. Smaller group of residents, simpler floor plan, staff who understand dementia. But i get that a move to MC is like CaliforniaGirl's experience with switching to a hospital bed. A tangible sign of progression in this awful disease.
I had one of those signs today too. DH came with me to have lunch with my mom at her MC. I thought things went pretty smoothly, but DH said after we left that the visit was "sobering" for him because "she's just existing." I see her more often than he does, so I am used to her current state. But he's not wrong about the big picture. I am so focused on the details of her care that I sometimes don't see the forest for the trees. Bad tasting spoonful of reality.
Prayers for all of us as we walk this tough journey with our loved ones.
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OH @CaliforniaGirl-1 I’m late responding but so understand this. These changes are so hard. It’s hard to explain - sometimes it just hits that there’s nothing we can do to stop this disease, no matter how well we have gotten through the journey. It absolutely sucks.
THe fact that it sucks in no way diminishes what good care you have taken of her. You have done an amazing job. We just can’t beat this one.
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I have been where you are very recently…November, actually. Mom had developed an odd sleep schedule and would wake when the staff was not expecting it. She'd try to get up on her own and fall. She was already on hospice four months by then. She had stopped eating regularly. She was unable to communicate much at all. Sometimes I sensed a bit of recognition as if she was familiar with me, and I also witnessed her look the same way at a couple of the nurses there. I was glad she felt comforted by her people. I realized that I had been associating her level of comfort with her surroundings including her belongings and her bed with all the special bedding and pillows I had chosen especially for her. I think I was projecting how I saw her instead of what she was seeing. The faces mattered. The bed, not so much. The bottom line was that her bed was no longer a safe space. She needed side rails and padding on the floor. The nurses and staff needed to be able to lift and lower the frame so they could help maneuver Mom when she was too weak to move herself. It was definitely a sign of inevitable progression that I had to affirm and accept, but the hospitable bed was for the best. I realize now that the bed I put together for her was one of the few acts of love that I could still manage at the time. The hospice nurse was wonderful to me explaining how as this disease progresses toward the end of its course, the care giving shifts heavily toward the staff and lifts sometimes painfully off the family. As family, we have to let go, to turn that responsibility over to the professionals. My role was refocused being present, giving her my face, my voice, and my touch. Now that Mom has passed away, the odd lightness still remains. I'm learning how to fill that loss with memories and new personal goals that I know would make her proud of me. I hope that you find your own level of peace with this process. You certainly aren't alone in your sadness. So many of us are right here with you.
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These are such thoughtful posts. Thank you all for lighting the path ahead.
The bed in my dad’s MC room is a frequent topic of cheerful conversation for me to generate for him: I reminisce about in what city and at what furniture store he and my mom bought it, I talk about how well it has held up and how pretty it is. I know the day will come when it will no longer serve him.
And like @psg712, my DH doesn’t see my dad as often as I do and sometimes presents the wider-angle view of his decline. Gulp.
Yes, prayers for us all. A few weeks ago a friend who was recently widowed asked about my father. I told her a bit, and she said that “helping to walk them home” is part of life. I liked that image.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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