Getting parents in CCRC

DearLiz2020

My mom has advanced alzheimers with mixed dementia. My quadruple bypass diabetic type 2 father is her primary caregiver and he refuses to plan long term for him or hers. My mom needs 24 hour care and he refuses to do anything about it other than a having one woman from care.com come in a few hours a week to cook for him. She tries to do activitieswith mom. He complains about caregiver, doesn't like her, but refuses to find someone else. He absolutely has no idea how to cook. Can't boil an egg. He can't walk well and is a fall risk. He eats poorly (lots of carbs forca diabetic) often yell at her because he doesn't get her disease and sits her in front of tv all day. I have been in hospital 3x with him for panic attack

I had mom stay with me for one week earlier this year to give dad a break. I realized she needs better care than what even I can do.

She wanders. Is up the night going to bathroom but does not go. She can't speak or iniate or hold a conversation. She needs visual ques on every basic step for handwashing and eating. She needs someone to bathe her. Caring for her that week made me realize as a full time working mom of two young children, her level of care has surpassed my skills.

My dad has the money and assets to put both of them in a ccrc. He yes'd me to death about it so I went and toured 3 of them in our area. 2 seem good. today when my sister and husband and I confronted him about it, to schedule a tour, what is his plan, we can not care for them in our homes, , he stormed out.

What do I do. I can't take care of mom if something happens to him. I can't take care of both of them if something happens to him. He doesn't get it and doesn't want to plan. Full on denial and anger issues. Further I question their safety on their own.

harshedbuzz

@DearLiz2020

This is a difficult set of circumstances. I saw you asked about CCRCs back in December; did you find one that has memory care? Will it accept a new resident with advanced dementia? (many don't) Is the plan for them to split immediately with dad in IL/AL and mom in MC? Moving both into a smaller apartment where meals are covered and housekeeping comes through weekly isn't going to be enough care at this point.

If they will take a new resident in MC, and you plan to place mom in that section, will they be able to share meals and use the amenities together? Some CCRCs discriminate against those with dementia keeping them out of main dining rooms. Some even have physical barriers to keep those with mobility issues out of parts of dining rooms.

Does your father want to sell his house and move to a CCRC? Or is his plan for Stage 8-- after your mom's passing assuming she dies first-- to remain in his familiar house and neighborhood? Would he consider a MCF for mom? She'd get better care and he'd be better able to attend to his own health.

You need a plan B. Do you have a DPOA for them both?

I would tour MCFs and make a plan for placement should your dad become incapacitated again or pass first. Once he sees her getting better care and has his caregiving burden relieved, he might leave things as they are.

The other piece is your dad's cognition and mood. Is he the one with panic disorders? Is this a new thing for him? Could he be depressed? It's not uncommon in dementia caregivers or people who have had cardiac interventions. Or could he be having his own cognitive shift? Executive function deficits are some of the first symptoms we saw with dad; he could follow a well reasoned argument and made poor decisions. He also struggled with problem solving and taking steps to remedy a situation seeming more passive than he'd ever been. The inability to cook is also concerning. When one person develops dementia, the spouse generally picks up the slack and figures it out either learning a new skill or delegating it to a service of some kind.

If the vessels near his heart have blocked sufficiently to require a quadruple bypass, he could be at greater risk for the clogged arteries that lead to vascular dementia. Diabetes is also a risk factor for dementia. Has he been screened by his PCP?

HB

DearLiz2020

Good morning. Thank you so much for replying to me.

Good news. I called Dad this a.m. to check in and currently his mood is - "I'm going to call the CCRCs and schedule tours. I never want to be a burden. We need to do something for Mom now." Now I'm happy to hear this but heard it before. I'm planning to go with him so we can tour together and maybe he will like it, too..

But Yes, since Dec I have talked to two nursing home, one with a secure MCF, and toured 3 CCRCs in my area - two of the CCRCs have memory care portions of their building. The nursing homes still won't let me tour b/c of COVID. But was able to go to 3 CCRCs in person on a tour with my sister. I have given the info to my dad, and, yes, they are very expensive so he is balking. But honestly, when you do the math in my area of the US (NY/NJ area) it's all the same. $12-15k for a Nursing Home with MCF for my mom, $12K for 24 hour around the clock live in care, or $12-15K for both of them together in a community with support for them both. I imainge we'd help dad sell his condo - no one wants/needs it. We all tell him to use it to pay for him and mom's care services at this point with their medical issues. I keep telling him I'd rather see him use/spend his money for their care and have a careplan now vs. waiting and seeing (as explained above with their healthy/safety). As far as the plan for CCRCs, all 3 have told me they work with the family, mom/dad's doctors and their own social workers and staff to decide the bset plan (keep them together, have them separate) and would accept my mother in her current stage. I'm not sure and I would defer to my Dad has the primary decision maker when/if we get there on this CCRC hunt if he lives with her (both in AL) or her down the hall in MC and his doctors. One of the CCRC staff personnel actually told me to go speak to mom and dad's doctors as you advised. I do have DPOA thank goodness and actually want to call the attorney tomorrow/this week and go over how this works so I can implement plan B. Currently I can't put her on any lists without his consent/cooperation, nor woudl I want too. I'm just trying to get him to #1) understand mom will never be the same #2) understand mom's disease will get progressively worse (incontinence, aggression/depression, not recognizing him). I do wonder, like you said, perhaps he has his own cognitive issues. He has always though - been a Mr. Milk Toast (my mom's words) when making big life decisions. It was always her pushing him to do something (like take a vacation) - he always yes's everyone to death and does what he wants..

DearLiz2020