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My FIL is 92. He cannot use his legs or core at all and requires a hoyer (or a couple of strong caregivers) to transfer him from bed to wheelchair to shower to recliner, etc. He requires a high level of assistance with ADLs. He is mostly incontinent.



He does not have a terminal diagnosis and does not need any kind of routine medical care. His doctor has advised us he is too frail for any sort of invasive testing that might nail down a specific diagnosis (he has had some tests, but they are inconclusive and we aren’t proceeding with more tests). Hospice won’t accept him because he doesn’t have a terminal diagnosis. Home health care has dropped him because he is not showing any improvement from PT (he isn’t going to improve) and has no home medical needs, other than being sure he doesn’t get bed sores.



Yet, my FIL is relatively high functioning mentally. No dementia or Alzheimer’s. He is certainly not 100% mentally, but he is friendly, social, interested, responsive, can carry on a conversation, can remember reasonably well, and has interests.



Our dilemma is finding the right living arrangement for him. He is currently in a large AL community. While they try, the community simply cannot meet his considerable ADL needs…they just don’t have the staff. We have supplemented the AL staff with private caregivers. As his needs continue to grow, I don’t think this community is going to be able to meet his needs without us hiring even more private caregivers. And without hospice or home health support, we feel he needs more attention and potentially nursing oversight. This community doesn’t feel like a good fit for the future.



So we want to move him to someplace where he can get better and more consistent care. We have visited several small home-based board and care facilities and they seemed like they could meet his physical needs. But we need to be sure his socialization needs are met, and these places have maybe just one or two residents who are high functioning enough to carry on a conversation with him. The smaller facilities can meet his physical needs, but maybe not his social needs, while the larger facilities can meet his social needs but not his physical needs.☹️



Anyone have has ideas? Is there a middle ground? Facilities with 15-20 residents, yet a high level of physical care? Or is the solution to just continue to supplement with private caregivers? Anyone else have a LO who is mentally high functioning, but needs lots of ADL support? Where does your LO live, and are you happy with it?



I should note he has financial resources and this is all private pay. And my husband and I live very nearby and are heavily involved in overseeing his care.

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My MIL is in LTC in a large, reputable NFP continuum care community. She is bedridden due to refusing to get out of bed (and the aftereffects of a broken back in 2009). Other than mild dementia and memory impairment, she is extremely healthy (88 yrs old). She is large enough that she requires a Hoyer lift out of bed. Her facility is run by the Presbyterian Church and she gets stellar care. She is in a private room on Medicaid. It's on a lake and they take residents out on their pontoon for fishing, out on field trips, provide garden plots for them to tend, hosts visiting musicians and comfort animals, has activities and events. So, places like this do exist. I hope you find one.
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https://story.californiasunday.com/covid-life-care-center-kirkland-washington/

This is about the Life Care nursing home in Kirkland Wa. It’s largely focused on Helen, age 98. Like fil, Helen was mentally with it. The biggest question I had was why she had to share a room with a roommate who wasn’t.

If you go this route, see if the nh will put him with someone without dementia.
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Morningstar Assisted Living has care levels for elders like your dad. Check them out. They take elders that other ALs would never consider due to being 2 person assists or needing pureed diets, etc. You can also check with A Place For Mom to find an AL in your area that would accommodate dad's needs. There are brokers out there to help you find the proper placement you seek.

Best of luck to you
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Geaton777 Jan 2023
APFM will not be helpful since the OP's LO is really in need of LTC/is bedridden. Just learned this first-hand in trying to find a facility for my now-immobile 100-yr old Aunt who has adv dementia but other than the after effects of her broken hip, is totally healthy, doesn't qualify for hospice, but needs too much help for AL. APFM basically only is interested in finding placement if someone is a solid AL candidate on private pay.
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Also, I am right there with you on this being a whole new world to navigate. My mom is fairly young and this all happened so fast and I NEVER saw this coming a couple years ago. We are learning as we go and doing the best we can. I understand you wanting to keep as much independence as possible and I feel the same about my mom. I have practically killed myself trying to keep her out of a nursing home because of preconceived notions I had, but I am coming around. I found the best one I could for her. I compared them on Medicare.gov and also knew this one had a good reputation. Your FIL also has the good fortune of being private pay which should give him some better choices. Definitely tour some and go from there. Good luck. I know how hard this is!
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DShigley Jan 2023
😊❤️. Thank you for your supportive comments.
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Oh, I do see that you said he is private pay. There is a higher level of assisted living that my mom could have done that was out of her budget. It is level 2 assisted living I believe. I did find a facility that offered it in my area but since it was out of her budget it wasn't an option. You could see if something like that is available in your area.
I am not sure however if they are able to care someone who needs a Hoyer lift. My mom needs help with all ADL's but is still able to transfer from bed to chair, etc, with assistance. Hope that helps.
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I am new here but I will share my experience. My mom is 70 and up til 2018 when she retired was working full time 12 hour shifts as an RN. Because of a benign brain tumor she didn't follow up on for years she has gone from that to someone who is no longer able to perform her own ADL's. Medically, she is fairly healthy. She has well controlled diabetes and hypertension but for the most part is as healthy as a horse. This tumor has caused her to lose motor planning ability and strength. She has always been a person who fell frequently but could get back up before. Anyway, we tried everything to get her into either independent or assisted living because she is still fairly normal mentally, although she is a little "off" compared to before. Her only option was an actual nursing home and she just got moved to her room yesterday. The place we chose has a lot of great activities and the care is good, and she loves the food. No, it's not like AL, but there is great peace of mind knowing she is safe and well cared for.
I am no expert, but this sounds like it may be the best option for your FIL. There are some confused people on my mom's floor, but there are also some who seem pretty with it and just have physical limitations like my mom. It's not the situation she wanted, but we realize it is where she needs to be.
Good luck in your search. Your FIL sounds like a great guy!
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DShigley Jan 2023
You, and Daughterof1930, suggest nursing homes. We have wanted to keep him as “independent” as possible as long as possible, and are hoping to find another AL that can meet his needs. But your point is well taken and we may not be able to find such a magical place. 😊 Like others, I am sure, we have a preconceived notion that nursing homes are awful. I appreciate you correcting our misperception. We will go visit a couple.

My gosh, we want the best for him, but we have no idea what we are doing! This is a whole new world for us to navigate. Thank you.
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It certainly sounds like he needs nursing home level care for his physical needs. My mother lived in one for four years and during that time we got to know a wide variety of residents. There were some who were mentally sharp, just living in frail bodies. They often were recruited by staff to help with activities or do other tasks they were able to do. They definitely congregated more together for conversation than the residents who had more mental impairment. I’m not sure the size of the residence will determine what you’re looking for, and the suitability may change as residents come and go. Hopefully you can find a best fit and be involved advocates for his care. He’s blessed to have you looking out for him
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DShigley Jan 2023
Thank you. Your point that suitability of a place will change as residents come and go is good. Even if we find a small AL today that fits, that could change. Maybe we should consider the nursing home option. We just want him to be as comfortable as possible. Thank you.
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