Moving parents

JJPups

Hi - I think I have only posted here once before. I'm looking for some input or if anyone might share their experiences in supporting older parents in a move to a new location. In my situation, I have one parent with Alz Disease. The other is the primary caregiver with me increasingly playing a support role. Parent with Alz is in moderate stages, still oriented to family and home environment of 18+ years, ambulatory, and is friendly / social despite very obvious challenges with words and tracking conversation. Parent with Alz is now in need of support around hygiene and dressing (in addition to already needing meds, meals, all housekeeping done etc). I am concerned at this point how this will go as caregiver parent I feel is not keeping up with the hygiene concerns the way they should, though is generally attentive to needs. Is just becoming overwhelmed I think. I would like them to move closer and caregiver parent is receptive to this but still functions independently / does not qualify for assisted living.

My questions are for those who have helped parents move when one did not have Alz and the other did, what arrangement did you seek? I have narrowed it down to independent living facility nearby or purchase a second home in my immediate area so I can support more frequently. A goal would be not to separate my parents as they are together many years and caregiver parent is a strong focus / comfort for parent with dementia. Finances are limited so they could not afford two rents in a supportive housing environment (lets say with one in independent living and one in memory care on same campus). I am curious how it has gone for anyone placing their family member with dementia in independent living. We would obviously be back filling any care need in that setting in order to keep them together and avoid nursing home admission.

harshedbuzz

JJPups-

This is a tough question. A lot will depend on their available assets, cost-of-living where they're moving vs where they're moving from, ages, and the state in which they'll be living. You didn't fill out your profile when you joined, so I can only speak to generalities. Sometimes the gender of the people involved can add clarity to the picture- you didn't flesh that out.

If there aren't sufficient assets for long term custodial care, your best option is to sit down with the PWOD and a CELA to discuss Medicaid planning. This should be done in the state into which you plan to move them. They can discuss ways to perhaps shelter some assets or provide for one spouse as the community-spouse while the other receives care with Medicaid paying once assets reach a certain level.

I had a very similar situation with my parents. Dad 84 with mixed dementia and multiple medical issues and mom 80 with her own set of medical issues splitting their time between MD and FL. I would have preferred them to move into a CCRC that would have allowed them to start in independent living while bringing aides in to help for a time and then transition dad to MC and the SNF as his disease progressed while mom was just across campus in her own apartment with meals, transportation, amenities and social activities on site. Alas, my first choice CCRC does not offer residency to those who cannot pass their dementia screening on application. Plus, my mom wanted homeownership. The CELA explained how we could make that happen and still qualify dad for Medicaid if he outlived his share of the assets.

We'd sold their other homes and were able to buy a nice place in an Active Adult 55+ Community. This place has a clubhouse, pools, a HOA that manages all exterior maintenance like painting, landscaping and shoveling snow. And it's a short walk to a large shopping area with grocery, pharmacy, restaurants, banks, her favorite clothing store. I chose it more because it suited the needs of my mom who would likely survive my dad. She did hire aides for a time to give herself a break for a time.

One piece to this is that you and your PWOD need to have a frank conversation ahead of any move to discuss what the expectations are. "Support" is a loaded word. Many caregivers regret moving near an adult child who has offered support they define as a weekly visit and maybe a couple frozen meals or shopping when the PWOD needs someone more hands-on sharing shifts, toileting, showering and such. 

But still she was overwhelmed. IMO, gender roles, especially for the silent and boomer generations can be deeply ingrained. It's not unusual for caregiving standards to slip because the caregiver can't overcome resistance from their spouse. Stories of the traditional man-of-the-house refusing to submit to care are pretty common, so are stories about confused women with dementia who don't recognize their longtime spouse and consider hands on care a sexual assault. My own dad was a bit like a you're not the boss of me toddler in the middle stages. Ignoring mom's requests to take meds, a shower or eat where ignored because that's who he was. It was frustrating for her because she was a product of the silent generation who saw it as her responsibility to take care of everything and everyone. Sometimes the spouses of those with dementia will see care at home as honoring their "in sickness and in health" vows. 

I pushed for placement in the late middle stages. Mom was overwhelmed and not sharing all that was going on in her version of protecting dad's dignity. I finally succeeded by suggesting that his care was killing her and if she wanted to pick his MCF she needed to act because if it fell to me to bury her and place him, he'd go to the first place that would take him. (I did have a Plan B with a SNF he'd been in for rehab prior that they would take him same-day as a self-pay client should mom died or need to be hospitalized)

TBH, I wish we'd placed him sooner. For some reason he saw the staff as the professionals they are and people who wanted to help him. He was very cooperative with them in terms of care. They were well trained in validation and were able to get him fed, dressed, medicated and showered regularly. And mom was able to visit and just be the doting wife which was so much better. 

HB

Ed1937

JJ, I think HB gave you an excellent reply. It would be hard to argue with anything she said.

One thing you said needs to be expanded on. You said " I am concerned at this point how this will go as caregiver parent I feel is not keeping up with the hygiene concerns the way they should, though is generally attentive to needs." Exactly what does that mean? Do you feel that he needs a shower every day? Is he not brushing his teeth? What exactly is the problem? And the biggest question here is whether or not it is hurting him in any way?

mommyandme (m&m)

My thought…if they stay in their home now or a new one you purchase closer to you, then maybe hiring in just for hygiene help, showers etc… maybe a little training for your mom to understand what his needs are might be appropriate? 

 Side thought… sometimes we able minded people think our LOs need more showers than they really do.

JJPups

Hi, thanks for your response. It is actually my dad taking care of my mom. They are "silent generation," married for decades, but luckily my dad is not a stereotypical male of that age. He knows how to pay the bills, grocery shop, keep house while taking care of my mom. I just want to be able to give him a break more often and be more hands on with helping them, especially as mom declines. Have already had the Medicaid planning discussion, engaged an elder care lawyer and had POA, health care proxy redone for their situation. I understand my mom does not need a shower every day. But sometimes think she is looking more disheveled and unkempt than she should. I think my dad has not fully grasped the need for her to be supervised in doing hygiene now and over estimates her ability to do these things herself (though I have tried to talk to him about that). My dad is on board for a move. Mom only knows her little universe with him and will need to make this as smooth a transition as possible for her. I am their only daughter and I have one other sibling who is not in a position to help them due to his own health issues. We do not have extended family in this area. Sorry I have not built a profile. I am not someone who uses these forums very often.

Docgus

Hi JJ! Your comments about the situation sound so very familiar. I am also dealing with a mom with early dementia and dad trying to care for her. He is not healthy and I am starting to understand how difficult it is for him to ask for help. They have moved into a second house on our property - after 3 years and prodding and encouragement- but mom still insists on traveling to her oncologist three hours away once monthly. Dad says he tried to force her to switch to one near us and he regrets it because it upset her so much. He cannot stand to see her upset and she IS so often upset about the smallest things. (Not saying an oncologist you trust is a small thing). 

Anyway, I just wanted to commiserate and wish you the best. I’m trying to figure out my own situation and find it helps just to vent and know that I am not alone. 

mommyandme (m&m)

JJ, sorry I mixed up your parents’ dynamic.  

I didn’t deal with two parents, only one.  I am a denial kind of person regarding health issues.  Your dad probably doesn’t want to face the true reality, as you probably know. It’s just so hard and I’m so sorry for what you and yours are dealing with. 

I hope you can find some support here.  I certainly did am I’m still coming back.  Hope you will too.