Placement Pending

ThisLife

I've posted before about wish to place my H and my son not feeling he is severe enough and more importantly being concerned about money for care after the LTC policy is exhausted. (About 5 yrs.)

Update: VA did neuropsych testing in June. H has had these done numerous times in conjunction with clinical trials. What used to take 4 hrs, became 3 hrs, then 2 hrs. This time it was 1.25hrs. Lots of loss of language skills which explains the near lack of communication. All but three of the numerous categories were "significantly low." Level was severe. Shared this with my DS. He felt the level was more like middle. Things could be worse e.g., friends DF could not find his way room to room, and they came home to him on the roof trying to make a repair. And then the money! A lot of ugly conversation. I'm very negative, I'm not grateful for what I have, and I just need to make an effort to be happy. Grr!

When I went back home in May a friend called me when I got home sharing her concern that I wasn't my usual self. She has been there for the 10-year journey. My PCP, therapist, and several friends are supporting me on the placement issue.

I told him about the additional places I had toured and costs. Figured he would want to see the facility since it wasn't one we had seen together. DS said I could make the arrangements since I seemed to have selected the place. He would help with the set up if necessary. He hightailed it out of the coffee shop. My DS did say that his dad would probably get worse, and his health would be jeopardized being exposed to so many more people. H has gone downhill significantly since we moved here two years ago. I'm sure I will be blamed if either outcome happens.

I'm pressing on. I have a lot of support from my friends back home. : )

M1

This life, with all due respect, it's your decision, not your son's. He's not there for the 24/7. And frankly, the money is yours, not his (is he worried about his inheritance)? Have you talked to a certified elder law attorney about preserving your assets?

And honestly, from the sound of it, if he is declining that fast, he is not likely to survive five years so you may be fine money-wise. You can only make your best guess, but I would not borrow trouble in that regard.

I can understand not wanting to incur your son's displeasure, but you need to do what's right for you. Is he an only child? The reason I ask is, curious whether there is anyone else you could trust to handle your affairs, assuming you outlive your husband. I have two kids and they are very different. I hope to make my own plans so airtight that there will be little to be left to their discretion.

ButterflyWings

Well, DS is right about one thing (sort of): he will "probably" get worse. Make that definitely. And not because of placement or home, but because dementia is progressive. You did not cause, can't cure, and can't control that. I am so sorry your DS is not more supportive. But you are hearing from other people who care about you and hopefully that will help you feel more confident that placing your DH in a care setting so you can just be his wife as he continues to decline.

The other part of his statement that your DH's health [may] be jeopardized by exposure to so many people -- may not be accurate either. The frontline workers I have interacted with for the last 2 years are folks that take more precautions than most because of the care settings they work in. They don't want to get sick either. So most of them aren't careless and clueless about things if that is what DS was thinking? At least that has been my experience with respite, home health, and home hospice providers.

What DS is ignoring or minimizing is that your health is jeopardized by handling the heavy weight of dementia caregiving which cannot save your husband's life no matter what. I think you are wise to find a good placement for him especially since DS is not able to help. And then save yourself. That is your job too, and a very important one. Do see a CELA asap if you have not.

Quilting brings calm

DS is in denial. I wonder if he would learn something if he heard things from the doctors directly?

DS doesn’t understand that the safest place for DH is in a locked facility with a staff 24/7. Staff that are awake since you occasionally must sleep. He doesn’t understand that you are trying to prevent the patient on the roof scenario.

It’s your decision not his. He’s not the caregiver, it’s not his money, it’s not his health that is being compromised. Maybe he’s afraid there won’t be money left for your care later - but you would need to be alive for that to matter.

Dio

ThisLife, first and foremost, take care of yourself!!!

Kibbee

Not your son's money, so not our son's decision. Not your son's life, energy and health being consumed by full-time hands-on caregiving, so not your son's decision.

Imagine if you had a medical event and suddenly your son had to be in your house, giving up a piece of his life to be the full-time hands-on caregiver. What would he think about using the TLC then? It's so easy for Someone to tell another person to keep going with the caregiving, if the actual work of that caregiving is not affecting the Someone's life in any major way.

You have a TLC plan, with 5 years of coverage, it sounds like you planned well and are in good shape with being able to handle the cost. You paid for those TLC benefits, use them.

You decide what is the best thing for you and your DH, you put your plan into action, and inform son about it as a done deal. You do not need to ask for his opinion or input - you are in the driver's seat on this one and you are fully capable of doing what needs to be done.

Ed1937

"DS said I could make the arrangements since I seemed to have selected the place. " So just do it. When you have things underway, you can let DS know what is happening. At this point in the game, taking care of YOU is the most important thing, and it doesn't seem you are doing that. Don't let him bully you into grinding on until you need someone to be a caregiver for you.

"I'm sure I will be blamed if either outcome happens." I have a son with mental illness. He has said numerous times that if something happens to me, he will get the blame for it. I always tell him not to worry about that. If anyone wants to blame him for my death, that is their problem, not his. I'll tell you the same thing. Use your head, and do what needs to be done.

ThisLife

Thank you everyone for your supportive input! Yes, I'm the one bearing the brunt of this stressful journey, not him. I am proceeding with the placement. I hope to finish the packet by this weekend. The room will be available August 31st, ad DS knows this. I'll try to address points globally here.

I have a CELA. We had all of the DPOAs, Healthcare POA, Living Will and Revocable Trust done. I have an appointment with her in two weeks and a big packet of papers to fill out prior to discuss what happens if he outlives the LTC. I made this appt in the hopes of reassuring him there is a way forward post LTC. It will be via Zoom, and I've invited him to attend which he has expressed an interest in doing. I've also explained VA Aide and Attendance and will be going the State VA facility to get information.

I guess I'd hoped he would recognize how this is for me now, and how his dad has declined. He's in denial in more ways than one. FIL and his dad had dementia in their 80's-90's. MY H is EO. My DS sees this as his future. I've tried to share articles on Familial Alzheimer's which I don't think this is. He is very reactive to anything in his dad's decline. I've invited him to doctor's appts but he never has the time. I think he would learn more if he heard it from the doctors.

My son is not looking for an inheritance which is a good thing. lol We have a comfortable income, but it won't cover $5,000 mo. LTC and my mo. expenses and only some modest assets. I only have one living son. Only other relative is an estranged brother which I don't maintain contact with. If I couldn't care for my husband, DS would have him in MC in a heartbeat. There is enough to take care of me if I survive my H. It's another story if LTC is gone and we both need care. So yepI need to take care of myself even if DS can't see it.

Everyone has given me some great points to use as come backs if needed in the future. DS is mostly concerned that he will feel obligated to fork out if we run out of money. I just don't see H outliving LTC and income should take care of me.

M1

Good for you. Sorry this is so lonely, but it really, really is. It's really sad when family members fall away, but many times they do.