Never ready for this

M1

thanks Jo, yes, I posted on the other thread that we're back to square one. So far the only clear hospice benefit has been the adjustable frame hospital bed.

She's back to maybe close to basline before the recent bad fall. Spending perhaps more time in bed and not eating great (no recent weight), but eating some and says she's hungry. Still very uncooperative with most things unless I'm there.

ButterflyWings

@M1 No one but a fellow dementia caregiver would believe our experiences. You really, truly cannot make this stuff up. My heart goes out to you and your LO.

Reading your recent experience caused a flashback to a couple of ER trips from H3ll and one MC respite experience that made me wish we had a caregivers’ enforcer team that could roll up and shake some sense into those who cause pain, suffering and anxiety FOR NO REASON!

I hope and pray your partner is more comfortable by now. What would she have done without you! ?

ghphotog

M1, I was looking you here to get an update to where things are for you and your partner.
I wish we good say things like "I hope she gets better soon!!" but we know that will never happen.
There is no getting better, only returning to some baseline which next month, next year the current baseline will be much further down the rabbit hole.
I hope you are doing OK through all of this and that your health is holding up.
H

CindyBum

I am praying that she is released from her pain and you from yours, M1.

M1

thank you guys for asking….what a chaotic month it’s been. My world feels very small right now, alternating between her bedside, my car, my own bedroom. Farm chores are by the by, stopping to get milk feels overwhelming. I’m lucky to get the dog and cat fed.

We’re not at any stable baseline. She’s staying in bed more, sleeping more, calmer with Ativan on board but unsteady on her feet, not eating much, maybe one meal a day if I’m here to feed it to her. A bath aide is supposed to come today but I don’t think they are going to be any more successful than anyone else in terms of getting her to cooperate.

I’m holding up but by the skin of my teeth. Feels like we’re on the last leg of this long walk, but I can’t see the end yet. Uncertainty is awful.

ThisLife

@M1 For me the last bit was like a chaotic whirlwind. I say the "last bit" because I know the duration can vary widely. Initially I didn't know it was the last leg.

Addressing issues as they came up was a continual game of Wack-a-mole. It became clear that instead of waiting for the next shoe to drop, I knew every day there was going to be some new challenge. Often exacerbated by others.

When it was over I had the feeling of what the #*@& just happened! All I can say is keep putting one foot in front of the other, don't think too far ahead, and accomplish the bare necessities. I am with you in spirit.

Ed1937

M1, I'm so sorry you are both dealing with this now. I had no idea. As hard as stage 8 can be, it's the best place for both of you now.

JoseyWales

M1, it sounds like things just won't settle down for you. I was hopeful after her move to the different room. But this disease always brings new challenges. I am inspired by your care for your wife.

White Crane

M1, how terribly difficult for you right now. It’s exhausting. I understand about letting chores go by the by. Just do what absolutely has to be done and take the best care of yourself that you possibly can in this situation. Praying the bath aide will have success. Hang in

fmb

M1, I empathize with how your world has shrunk and how difficult it is to do even the barest of necessities. I'm in a similar situation with DH's care, compounded by my physical activity restrictions due to recent cataract surgery (2nd surgery scheduled for July 1). I drive in every day to feed DH breakfast and lunch, take care of hygiene needs that aren't done by the hospice aide, and advocate for him with facility management. Almost nothing is getting done at home beyond basic grocery shopping and doing a load of laundry when I get desperate.

Don't be afraid to ask for help with various chores. After decades of relying primarily on myself, I find it very difficult to ask, but ask I must. I came home yesterday to find that the lady next door had mowed my side yard adjacent to her house (and I hadn't even asked) and another neighbor has offered to mow the rest of my grass. Neighbors have offered to pick up groceries for when they go to the store and to drive me to eye doctor appointments. Simple things to be sure, but oh so helpful and meaningful. Just from how you help people here in the forum, I am sure that you have helped many in real life. Now is the time to allow others the blessing of helping you.