Is it just me, or...

I could have written this! I’ve been struggling with exactly the same things. My DH is not in depends but same apathy about hygiene. I would love to have help and be able to go out and live a little/get a break…go to the gym, whatever. Right now, I don’t have the energy to find someone. I’m taking charity from my children but there’s no other way right now. I found an assisted living with memory care nearby that seems affordable but who knows…I don’t think it’s time yet for him. I said at the beginning that I’ll place him when he doesn’t remember me anymore. It seems like it will be a long road ahead. I’m most worried for my own health and future. I can’t do both…take care of him and take care of myself which includes working & saving money for my future. I’m in a holding pattern, trying to make the best of it but just living day by day, moment to moment.

it’s not just you. Sending a big hug!

Me too! It’s nuts!

@AlzWife2023 said:  I’m taking charity from my children but there’s no other way right now. I found an assisted living with memory care nearby that seems affordable but who knows…I don’t think it’s time yet for him. I said at the beginning that I’ll place him when he doesn’t remember me anymore. It seems like it will be a long road ahead. I’m most worried for my own health and future. I can’t do both…take care of him and take care of myself which includes working & saving money for my future.

Please don't let this disease rob your children of both their parents. This disease can take down the caregiver as well as the person who has the dementia diagnosis. One-third of caregivers predecease their LO.

IMO, waiting until a person no longer "recognizes" a spouse seems very arbitrary. Dad recognized my mom and I until he passed as a complication of aspiration pneumonia in stage 7. While mom had finally agreed to placement a couple months prior, his care caused her to neglect her own even though she had steady income from a good pension and no other real responsibilities. That neglect damaged her health permanently and cost her the vision in one eye and the independence that comes with driving. We had both looked forward to a stage 8 with more freedom; instead of caring for dad, I'm caring for mom now.

HB

Dear @harshedbuzz thank you for giving the adult child's POV. My sons seem happy with me at home with their dad because, I think, it makes them feel safe, but my daughter sees the toll it's taking on me and the dangers to my future. She is helping me to move forward mentally/psychologically. She talks about getting help at home, about placement, and about me getting my life back, which is ironic b/c she's the one who encouraged me to stay home with her dad in the first place 18 months ago. That was a time of panic for all of us. He was totally losing it and I was unravelling--did not like my job and was underpaid, so there were those factors, too. She can see when I'm doing well and when I am not. I left a great job of 20 years during Covid because of all the craziness, and now I am just floating. It's time to power up and make some more moves in the right direction! Thank you for sharing. It is so helpful to hear other people's experiences and perspectives.

Re: the arbitrariness of my cut-off. It was arbitrary and I said that early on before I understood anything about this journey. Thank you for pointing this out. I mean, my cut-off could be so many other things, and just as valid, if not more so, like: place him when I run out money (happened already). I will try to get f/t in-home care first. Another poster gave me the idea that he might qualify.

I'm getting services through our local PACE program with the current 40 hour per week due to DW requiring one-on-one AND MC facilities she's been involuntarily discharged for the same reason, she has extreme anxiety (medication adjustment over the years have helped though). Since she can only be cared for at home, they increased in home day care. They also provide in-home 24 hour respite care. Recently took mini 3 day vacation, first time in 5 years I think.

That’s rough. I’m glad he’s getting placed. You have gone above & beyond.

My DH is still manageable…no incontinence and low wandering behavior so far but when he’s uncomfortable or scared like when he was hospitalized two weeks ago the violence emerges. He was tearing out his IVs out as I gently tried to coax him to stop and relax, he threatened me three times with violence. It was a shock. I knew he was experiencing hospital psychosis or delirium, but I saw how quickly things could go bad. He gets mad at the drop of a hat if I don’t agree with him so I’m living in a bubble tiptoeing around him. I think I would be more scared if our son did not live with us. We’ll see if this behavior gets worse. I am certainly not going to live in fear in my own home after giving up everything to take care of him.

If I might put a different spin on the "markers"…instead of making them about behaviors of the LO, make them about yourself, your health and your abilities, both financial and physically.

Can you give your LO 24/7 care and oversight…even with hired help?

Can you insure your safety and that of your LO, be it from anger outbursts or things such as home disasters of drinking or eating dangerous materials, leaving water running, turning on the stove, wandering?

Do you feel you could be a better life partner to your LO if you had less 24/7 anxiety and could oversee the care by others better?

Whatever circumstances are for you, remember if you were not present for a short, extended time or forever due to your own health crisis, your LO would not have what you are able to give.

For many a crisis of some sort has to occur in order to make the placement decision. It did for my mother in determining placement for Dad…until then it was "we just aren't there yet". Try to keep that from happening to you…it is so much harder than having a plan.

Wising all who face this issue the best possible outcome.

Best for the caregiver is best for the person with dementia. If we're not at our best, how can we help them, and if something happens to us, who will be there for them. Stress kills, and one statistic to avoid is having the caregiver die before the pwd.