Elder-caregivers
Related: About this forumSome lessons learned - dealing with family stuff
I'm not sure if this is the best forum, but hopefully I won't offend anyone. Please feel free to direct me to a better forum. Buckle up, its a long post.
My father, age 90, is healthy, but in long term memory care. He no longer remembers me, but he is otherwise healthy and happy. His care is expensive. Really expensive.
He had planned for this. He got long term care insurance. He has a pension, which includes a decent BCBS health insurance policy. When my Mom was going through Multiple Myeloma, this health insurance took care of it all - at a really decent hospital, Butterworth / Spectrum in Grand Rapids MI, it didn't bankrupt them (Thanks to the teachers union in Pennsylvania).
After Mom passed Dad was doing well, at least we thought so. He always sounded good, on top of things, but we started getting concerned. We hired a cleaning service, and the person assigned said that she was finding lot's of pills on the floor, and other similar things. Dad was still making his bed every day, and going to coffee every morning, but we asked for a nurse to come in and fill his pill containers every two weeks. He was unhappy, but accepted it. It turns out he wasn't remembering his pills. He was also not eating well, and not doing a good job with food safety (long story, I will spare the details).
I should add in here, my parents bought in to an 'age in place' condo, the Holland Home, in Michigan. Once you buy in your care is guaranteed for life. My Grandmother was the first of our family to buy in, but I have had many more as well. It is a great system.
Back to the story: Just before Covid hit, my sister and I were concerned enough that we asked a social worked to check on our father. Their assessment was that he should not be living on his own. We had suspected that for a while, but which is why we got someone involved. It turns out he was really good at 'faking it'. Well, he was a former politician! But seriously, it was far worse than we thought.
So, we arranged for him to move from independent living to assisted living. That was a HUGE and unpleasant battle, and the very same day that we moved him in to his new place, the facility got locked down for Covid, as did his old condo. Thank God, now he was at least getting meals supplied. If he had been in his old condo he probably would have died.
He seemed to be doing well in assisted living. He was kind of pissed off about the fact that he couldn't just get friends to take him out to dinner, that sort of thing, but other questions about finances and stuff seemed good. And then he got Covid. I could tell from my daily phone calls. He survived, but his younger brother, my much loved uncle, didn't. He was never the same after that, but I think we were ignoring the signs of his decline.
These days I still visit my Father when I can, call him often, and my Sister visits often (she is local), but he no longer remembers us. That's OK, we remember him, and still love him.
And now, to summarize the issues:
1. We assumed for far too long that our father was keeping up with finances and bills. He forgot he had long term care insurance (something he used to tell me was so important), and the policy lapsed. When we found out about it, it was too late to do anything.
2. He was many years behind on state and federal taxes. We have made progress, but are still catching up.
3. Our family has a cottage that has been in the family since the 1950s. It is in our parents name. Dad simply forgot to pay taxes or utilities. We are catching up.
4. Years ago my parents filed for a 'ladybird deed' for the children, a good step. but only covers a specific circumstance.
5. Now that my father is in need of Medicaid, all of his assets need to be depleted before he can get benefits. A first and a Second home, such as his cottage, are not included in the assets that must be liquidated before he can receive benefits. The problem is, despite he and my Mother living there about 6 months out of the year for decades, he didn't use that as his mailing address so it doesn't qualify for Medicaid as a residence.
Lessons learned:
1. Be more forceful with your parents, even if you think they are doing OK. Even if they are private with their finances. Or resentful. Or think children, or women (daughters) shouldn't be involved (I'm the son, btw, and think my sister should have been included much earlier).
2. It's NOT selfish to ask about probate related stuff, but is selfish if you avoid it. I kind of thought that was morbid, and didn't want to think about my parents death. My selfishness had compounded the problems, and now I am dealing with a worse problem, definitely not good. Confronting it earlier would have saved all of us a lot of grief.
This is really long, and I doubt anyone will actually read it, but I appreciate having somewhere to talk about this. My sincere love to all of you.
dixiechiken1
(2,113 posts)I'm sorry your father doesn't remember you or your sister. He is blessed to have children who care so much.
enough
(13,455 posts)take it to heart. It doesnt matter what financial level your parents may be at.
SharonClark
(10,323 posts)thoughtful post on an emotional and stressful topic.
My mom is 91, still lives in her home, and is doing well although I handle all for finances. When the time comes to overrule her decisions, your post will be helpful.
I hope everything works out for you and your dad.
3catwoman3
(25,441 posts)What a poignant statement.
You make very important points.
onecaliberal
(35,833 posts)Very good points
Rebl2
(14,705 posts)in your situation too. My parents lawyer left the firm he was with and became an elder lawyer. They guided us through everything. My parents lived in their home (they both had dementia) and they could not keep up with the care of the house any longer and neither could I because I am disabled. I took care of their bills because Mom couldnt anymore and my Dad couldnt either. My Mom ended up having serious blood clots in her lungs (2019) and went to the hospital and a week later my Dad fell and ended up in the hospital. They both went into rehab and there was also a nursing home there as well. I was so upset my husband had to figure out if they could afford to then be transferred to the nursing home. (My sister who is local was dealing with working and a problem adult child at the time.). It worked out ok. They both got Covid in 2020 before vaccinations were available and survived. Unfortunately my Dad passed last August. My Mom has declined quite a bit. She will 92 later this year. I have no desire to live to my nineties after watching what they went through. Now my Moms twin sister in (another state) and and her husband are not doing well either. Its been very sad to see their decline.
MLAA
(18,602 posts)💖💖❤️
Phoenix61
(17,648 posts)I didnt find out until after he passed things had changed over the years. Power of Attorney isnt the be all it used to be. Lots of financial institutions will only accept their form.
Never underestimate the possibility of a sibling to turn into a compete douche.
3Hotdogs
(13,398 posts)OR SPOUSE was a combat vet. Korea, Viet and so forth.
They helped my mom with a monthly stipend and later, with full residential care.
If it doesn't apply to you, I hope it helps someone else reading it.
Meanwhile, as posted above, an elder lawyer is also a good resource.
I wish you well during a difficult time.
AmBlue
(3,441 posts)My Mom passed away just last week at sge 89, after living with me for almost 5 years after Dad passed away in 2017. Her last year she spent in a state of advanced vascular dementia and, Iike you, I think we excused away all the earlier stages that preceded it. Sadly, we simply don't know what we don't know, and no one in our family had experience with dementia before Mom.
Three weeks before she passed away, we moved her into a lovely, expensive memory care facility, with lots of dementia appropriate activities, weekly manicures and hand massages, bingo, chair yoga, and daily story time. She loved the food and was actually having some fun during the daytime hours after living basically in isolation at my house ever since the pandemic hit.
Her insurmountable hurdle was the nighttime hours and "sundowning." At night she became very paranoid and was certain everyone there was trying to "do her in." Last week, as the caregivers were trying to help her get ready for bedtime, she was struggling against them and broke her hip. She had surgery the next day to repair the hip and within an hour after coming out of recovery, she simply stopped breathing.
It's another long, sad story about how our bodies can outlive our mental capacity when dementia strikes. What I learned is much the same as you. We should have acted sooner in getting her to memory care. The ladies in her facility that are doing well there, and have been there 2, 3 or more years, were not as far along in their dementia journey as Mom. If we had acted sooner, Mom would have had better mental capacity to adapt and get to know her care givers, and they her.
Regardless, we did the best we could for Mom. I hope somehow she knows. I know I have not even started to come to grips with the loss of my Mom, but with dementia loss is a lifestyle, and death comes by a thousand cuts. It is a brutal, horrible disease.
The one thing we did right was we had Dad and Mom do their wills and trusts before we lost either one of them, so their wishes are clear. It's a huge step and goes a long way toward keeping family from painful fights over leftover assets when everyone is already raw and hurting.
Blessings to you, my friend as you weather the storm.
niyad
(119,931 posts)My parents died many years ago, so nothing like what you are dealing with. But I did memory care for many years, and saw so much of your experience.
Please know that your DU family is here for you.
narnian60
(3,510 posts)I have become just a lurker here on DU because the political scene in this country has become so soul-sucking, but your post made me want to comment. I, too, have gone through the dementia nightmare with my mom and stepfather, and it was a long, exhausting 2 year battle trying to do the right thing for both of them. They are both gone now, but I, like many others, could write a book on my experience with this disease and all the hurdles and difficulties involved. Thank God I had a husband who supported me the entire time even though it was mainly up to me to stumble through the process. So many of us have a story (or will have one in the future) to tell about this horrible disease and someone close to us. Thank you for sharing yours.
ZERTErYNOthe
(244 posts)I avoided reading replies, as I was embarrassed about my post (I considered deleting it shortly after posting), but I am so surprised and feel the love from my fellow DU family. Thanks to all of you. Now my vision is getting blurry ... need to look at posts by @Siswan!
Trueblue Texan
(2,925 posts)...clean up such a mess. But I'm grateful you shared this important story. Good luck to you all, and thank you!