Plan B

There will come a time when a caregiver coming in even a few hours a day will not be enough. She will need 24 hr care. In the past when I thought of someone needing 24 hr care I would think of someone very far along( very confused, not very mobile). But I now realize the caregiver is also there to keep them safe and out of trouble. My mom is stage 4, but she can not be trusted to be left alone. Because of the anosognosia, she thinks she can do things she is not capable of doing ( she is unsteady on her feet and uses a cane). She didn’t understand why she couldn’t mow her own lawn, shower when no one else is in the house, go down stairs or use the stove (she will forget it’s on). She is perfectly capable of making a sandwich, using the microwave and even doing a load of laundry (although she would sometimes forget to put the clothes in). I could picture her deciding to shovel snow in a storm and falling without her phone on her to call for help. We thought about a call button she could wear, but that only works if she would actually wear it. Since she thinks she is fine I doubt she would. The point is I have no idea what she might try to do if left alone. This makes it unsafe for her, even though she is still fairly capable. I thinks this is the case for many with dementia. Caregivers 24 hours a day is going to be pricey. You may also end up with someone calling in sick. How do you handle that. She is also going to be alone ( with a caregiver) in her apartment. A good caregiver will try to keep her entertained, but you may end up with some that spend that time on their phone ( feeling there job is to keep her safe not entertained). A facility offers others her age to talk to, activities, meals with other people and just a reason to get dressed in the morning. My mom wouldn’t even bother to get dressed in the morning. I think she felt trapped and alone, but still didn’t want to move to Al. If you haven’t toured any places I would strongly recommend it. A nice Al still offers a lot of independence. A smaller apartment, but easier for her to navigate. Meals prepared for her, laundry and cleaning taken care of. But no stove to potentially start a fire and assistance always available. There can be a waiting list to get in. My mil was on a list for a year, my mom 6 months. Generally if you are not ready when there is an opening you can just decline and remain on the list til the next opening. If you expect her money will last long enough for memory care( when the time comes). You may want to consider an Al with an attached mc unit. Moving her in with family is the other option. Mom lived with my brother for a year, but he worked second shift and she ended up alone most of the time anyway. He also had no idea how to be a caregiver. I’m retired, but mom blames me for taking away all her freedom. She made the comment that living with me would be her worst nightmare. Even if you work from home it’s going to be tough to juggle. You are wise to consider these things now. None of use know what we are doing. We just try our best.

My sister is my mom's backup POA. Sis has been supportive of me in my decisions for mom since I moved her to a facility, but she doesn't really want to BE the decision maker. Nor does she live in the state where mom now resides.

With my recent cancer diagnosis, I spent some of my recovery time after surgery organizing my files of mom's business...just in case sis would need to take over on short notice. I am grateful that my prognosis is decent, but cancer reminds me that there are no guarantees that I will outlive mom.

I know that my DH would look after mom as if she were his own. I think he'd end up being her boots on the ground and sis would rubber stamp his actions with her (secondary) POA. I hope we don't have to resort to that, but it feels better having the Plan B ready.

@JulietteBee said:

As I stated to another poster above, I see where I need to start doing comparison shopping, sooner than later. The IL facility where she is, has an AL on the same grounds. I understand it has a MC unit as well. I will request a tour without my DM being present. I feel it would only depress her, especially as last year she expressed not wanting to make another move in her lifetime.

I hope the upcoming testing brings you some clarity to move forward on this with more clarity. Having an actual diagnosis of a progressive and terminal condition might make it easier to make the hard choices.

There are meds for that. The ability of PWD to be happy is generally compromised as the disease progresses while anxiety can become a major problem. PWD lack the self awareness and executive function to access and implement strategies for emotional regulation they had previously. There are medications that could dial that back.

In moving a PWD, it's best to remove them from the process and the decisions IME. I picked the apartment into which my parents moved and then found the carriage house in a 55+ community once their house in MD sold. I managed the logistics of the staging, sales and paperwork associated with their houses (FL and MD- so convenient!) and moving/storage of their belongings. Moving dad meant delivering him to his new home once it was ready for occupancy.

IF/when the time comes that I have to move her, that is where I'd move her to. It would be least disruptive AND still conveniently located 1 mile from my driveway to hers.

I can't see any scenario in which you wouldn't have to move her unless she passes gently in her sleep in the near future.

Close is good, but a facility the has well trained staff and dementia-informed programing is best. There were 9 facilities into which dad could have been placed on the drive between my house and the one I eventually chose. He was tough and needed staff who could deal with potential challenging behavior. Your mom's current apartment sounds lovely, but your mom needs a greater level of care and supervision at some point.

As a decision maker, we have to focus on what matters to the care of a PWD and tune out the decor and amenities corporate designed into their spaces to appeal to the spouses and adult children who are making the decision. You have to use your head, not your heart here. I get that it's really hard to picture a LO among others with dementia in a small suite that's sparsely furnished rather than the lovely apartment with the stacked washer/dryer but she needs a place that prioritizes care not decor.

When touring, make sure you tour all units within a facility. One thing I discovered was that often within CCRCs and other places that offer multiple levels of care is that the quality of care is not always consistent among units. Often the IL (especially in big "active adult communities") and hospitality-model AL spaces are lovely to appeal to seniors making a choice to move in while the MCF is an afterthought. Sometimes the SNF attached, which might be needed for rehab/sub-acute care should she have a hospitalization and not be ready to move into her unit is lacking.

My cousin made the mistake of placing her mom with dementia into a hospitality-model AL that sounds very like your mom's level of care. She had a small apartment, she could come and go, meals and snacks were included as well as activities and medication management. It did not go well. The other ladies didn't appreciate having a woman with dementia inserted into their social group— she was repetitive, "cheated" at games and couldn't keep up with conversations. They went "mean girls" on her and she started holing up in her rooms. The other downside was that her well check was daily with her meds instead of the hourly one in dad's MCF. Auntie fell and broke her hip and wasn't discovered for hours. She saw the aide at 8pm but was found after she missed breakfast and lunch.

With better understanding, I see that a "Plan B" involves having a plan in place for if/when I am no longer around.

Plan B is not just about your availability. It's also about addressing mom's care needs as the disease progresses. After Auntie broke her leg, my cousin had to scramble to find a SNF that would accept her. While most MCFs will allow a PWD to age-in-place (live out their lives), most require them to be self-feeding and ambulatory on admission to the community which meant the door for MCF closed.

Plan B can also include considering medical decisions ahead of being presented with them. Given the terminal nature of the disease, at some point it makes sense to cease screenings and later preventative and even specialist care. Thinking ahead can keep you from being blindsided by doctors who don't see the bigger picture. In my situation with mom, I have a plan to winnow down her many specialist appointments and keep only the doctors whose care contributes to her QOL in the moment.

In her legal paperwork, she has my adult child (her grandchild) as her successor DPOA. I have kept them abreast of where to locate her papersmwork. Where her banks are located. I even went as far as giving them access to my digital file cabinet with all necessary passwords for both hers and my accounts, and any stored documents pertaining to the business of renting her house. I believe they are ready to go whenever duty demands it. They are hoping they will never be needed, as that would mean my life threatening disorder finally took me out.

This is all good.

Oh, something else came to mind today. Feel free to tell me what you think of this. If the cost of 24/7 care proves to be prohibitively expensive, ON TOP OF the amount I pay for her apartment, I could move her BACK in to her fully paid off 2000 sqft house. It is 6 miles away from me. Her house would no longer be a source of monthly income. The money I was previously using to pay for her apartment would then be used to pay for her in-home care and start spending down her liquid asset, making her more likely to meet the "5-Year Medicaid Look Back" period.

In-home care is very expensive. An agency aide will run about $40/hr in most places and there may be a premium for weekends, nights and holidays. That's about $1K/day.

This could work. I would absolutely run it past a CELA/elder law attorney. It might make the most sense to sell the home and use the proceeds to fund her care transitioning to Medicaid as she runs out of assets.

HB

Don't feel badly.

While I was pretty sure dad had dementia (parents fought me for almost a decade on an eval) and sorted out where I wanted to go for a diagnosis, nothing else was in place. I learned on-the-fly. It was awful.

HB