Lessons learned (learning)

quartlow2

*I needed to add to my original post that didn't explain much.*

Mom and dad were in MC together. Dad need AL but mom needed him with her and she needed MC. Mom passed last year and Dad passed in May. We Loved their facility and caregivers, and feel they were much better cared for there than we could provide at home. I keep thinking that there must be ways I can prepare for my future needs. They died in their early 90's so I've got a few yet to figure it out. But the care facility environment, even in good ones, are not ideal. I doubt there is an ideal for PWD.

Cost was really the least of the issue. Although they had a good pension, they could have lived on the money from the sale of their home. The money saved by living in a facility included property taxes, utilities, yard care, maintenance and care of yard care equipment, house maintenance and repair, homeowner and auto insurance, fuel. AL\MC expenses, including rent, are deductible on taxes.

They never wanted to be a burden on their kids; emotionally or financially. Mom wanted to move way before Dad agreed to it. Once he saw that each of his kids were willing to make a significant lifestyle change, so that he didn't have to change his lifestyle, he decided it was time to make the move. It was a sacrifice they made for their kids and for each other. He later recognized and appreciated the benefits of moving to AL. Their sacrifice was not unappreciated.

Mom and Dad moved from their 3bd/2.5bth home on a lake to a 1bd\1bth apartment in an IL facility on a busy suburb street closer to doctors and family. They really needed AL at this point but this was the biggest step they were able\willing to make at the time. They were there for 2 years before we started getting reports of Mom wandering. So we found another place that also had AL and MC. Moving is disorienting for anyone; let alone a PWD. It takes weeks for our brain to settle down and develop new patterns and routines. The fewer the moves, the better, and adjustments are easier when moving with our spouse\partner. My parents were married for almost 70 years.

So, the issues I'd like to see improve, are surrounding the care of PWD. I feel like we had the best care team. We loved all the nurses and all but one of the aides. The one either just had a gruff personality or was mean. We're still not sure about that. Fortunately, Mom passed before that aide came onboard. Dad was able to express himself to her and to us when her behavior was inappropriate. But Mom wouldn't have been able to. So, caregiver personalities are important. But their job satisfaction is also important. If they are overworked, or unsupported by management, they aren't happy. If they aren't happy, they can't be good caregivers.

The other issues are challenges unique to the population of people needing the care. A care facility has the advantage of 2 or 3 shifts of staff daily, 7 days\week; something we are unable to provide by caring for our LO at home. However, I doubt most of us could afford one-on-one care 24/7. That's what we think we are providing by caring for them at home. But that doesn't allow for us to get proper amounts of sleep and personal care; maybe even sacrificing our other family relationships. So, the caregiver-to-patient ratios vary between day and night shifts and from facility to facility. It is very hard, if not impossible, to get a real number when asking this direct question to a facility director. State oversight websites will, at most, provide information like "better than average", or "within state requirements" or something like that for each licensed facility.

Challenges like the following may not be able to be solved, but they are ones that I know I won't like accommodating when it comes my time: Lack of privacy (other PWD residents wandering into my room); Lack of choice in my meal schedule; Caregivers without enough time to get to know me and care for me as an individual instead of a type of PWD.

And this doesn't even address the dilemmas I have about Hospice care. Is letting someone die from a UTI considered an "acceptable", "humane", "best practice" in the industry? I'm not asking with a resentful attitude. I really wonder if I should not have intervened when I just wanted to get Mom back to Dad so he'd know she still loved him?

chrisp1653

It seems to me that other than having some sort of fund that can be drawn on when or if it's needed, there's probably not a lot you can do in advance.

There are soooo many ways that you or a family member might need to be cared for, and unless you have precognition, I can't quite imagine how you might predict what level of care might be required. 

In my case, the fact that financially I would not have been able to send my Barbara to any sort of care facility turned out to be a major blessing, because,  ( with the help of hospice,  ) I was able to keep her right here in our home, where she was surrounded with all  the things that were familiar to her.

Most of all, until her final few weeks of life, she was able to sleep in  our bed. When she finally had to be placed in a hospital type bed, there was no room except in our living room, and she was able to say ( in a rare moment of lucidity , ) " I miss being in our bed with you. "

When she passed in late 2020, she was in our home, and I was there with her.

I would not have traded that time for anything !

Just my two cents, for what it's worth.

Chris

quartlow2

chrisp1653 wrote:

"I would not have traded that time for anything !"

Thank you Chris! I treasure every minute I had with my parents.

I agree that there are too many variables about the future to prepare for every contingency that may or may not happen. I've also been thinking along the lines of general emotional resilience. My faith helps me a lot. Like most of us, I think I can stand more personal suffering than I can stand watching my LO suffer. But, who knows, I haven't suffered as much as a lot of people...yet.