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My dad is 94 with Parkinson's and a bunch of serious health problems, who has been in assisted living for just a few months. He has mild Parkinson's dementia. I'm seeing these past few weeks he's starting to fall more, with bruises to prove it, but he won't admit it because he's a) in denial and b) medium-high on the narcissist spectrum. And c) because his brain is broken by Parkinson's. He also admits that he's got more urinary incontinence, peeing his pants and sometimes his bed (thank goodness for the mattress protector). So far he's refused to wear Depends becase of a, b and c above. (I told him if he didn't want to make an embarassment of himself in front of the residents and staff, he'd better get with the program. This after two years of trying to reason with him.)



He still dresses and showers himself, and gets himself to the dining room. But I'm pretty sure the staff at this ALF is onto him with the falling, and may ask us to move him soon. He's gotten so weak and skinny. He just settled into this place on August 1 and none of us has the stamina or bandwidth to move him again, but we may be forced to. Our dilemma is, memory care will be needed soon, but I can't see him among the more advanced folks in MC who are sitting in the common areas looking like zombies (this would horrify him). Adult family homes seem too small for him to be comfortable at (I'd be uncomfortable too among a handful of strangers in a strange house.) Do his physical frailties point more to a SNF or something else? He's in this inbetween place. How do you find the right facility for a parent that fits them well? I toured two with memory care recently, and they're just ok. Dad likes his finer things in life and would want a facility that felt "upper middle class" to him. If you know what I mean. I know there are continuing care places in our city (Seattle area) but I can't find them online unless they are the ones you pay $300K up front. He's too old for that kind of plan.... am I missing an obvious choice for type of housing/care?



(He asked me recently if we would ever "lock him up" and I hedged and said we would do whatever the safest and most caring option was, and we would be very discerning and thoughtful about choosing.)

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Do what you have to do. He is so far gone that its only a matter of time until his death. I was in an ordinary nursing home and will never go back. The CNA's hate
their jobs, a few do no try to hide it. This stage of life sucks for everyone.
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A couple years ago, I personally checked out quite a few facilities when I was looking for my mother. And the reason I did that is because one of the services mentioned, A Place for Mom, didn't meet my standards - and by that I mean, the 'representative' at A Place for Mom is usually someone in a completely different state; they provide you with a list of facilities BUT, they have NOT checked them out themselves - they provide you with the same information you can find yourself online.

It seems like your dad would need more than just assisted living, especially with the Parkinsons. Message me if you would like a little more info about what I found...I live in King County, WA.
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Um, yes and no and it depends.

Where I'm at, you are either in Assisted Living or in Memory Care. However, there is a wide range of care in Assisted Living and Memory Care. Some places are exactly as you described it with wards of zombies. Others have zombies, but they are not the majority. Still others have a huge range of capabilities in the same floor and no zombies.

My sister's in-law(s) lives in the Seattle area. I believe mother-in-law is now in Assisted Living in a place at Mercer Island, paying by the month. From what I've heard of what they are dealing with, her mother-in-law would definitely be in Memory Care here, not Assisted Living.

So Assisted Living for her is that she can do minor cooking in her unit. Because she cannot remember to eat, they bought the meal plan for her, but she never went because she just didn't want to. They are paying extra for medication management (however, the facility just "reminds her to take her medicine") and call her for meals (they don't make sure she eats). They pay for the extra "reminders", yet the people don't hang around to ensure she does what they tell her. That would be extra cost.

Here where I am, if you are in Assisted Living and need someone to watch you a lot for falling, you hire an outside person to come in and do that work (that also applies to Memory Care). Otherwise, they just check once every 2 hours to ensure you haven't fallen. If you pay extra for the medication management, they they make sure you take your pills. There is also an incontinence package.

If you are in Memory Care, many of these "extras" are part of the fee for Memory Care and they make sure you eat and take your meds. However, if you want someone to be with them at night, you do pay extra by the hour.

On my Mom's floor, we have at least one person who has Parkinson's. He is in the Memory Care floor because he needs to be watched more often than up in Assisted Living. In 11 months, I have seen him go from a person who is walking to a person who has to use a wheelchair and has trouble maneuvering the wheelchair.

So the range of ability in Assisted Living is huge and so is Memory Care. I would continue visiting places. Don't be shy about asking who you are visiting, about competitive places. There are plenty of people and they really want people who fit into their facility, rather than a person who is higher functioning. Make a list of the things that are musts. Does your Dad use the internet? If so, do you have to provide it or will they? TV and cable? Is it available all the time? outings? How do they deal with incontinence? Do they ensure that he takes his drugs or is there an extra cost for that? What happens when he gets injured or sick? Can he stay there or does he have to move? If he has to move, does he still have to pay the full cost of his room while he is away so that he can come back to it? When he becomes bedridden, does he have to move to a different facility or can they take care of him there? Can they take him to the doctor, or can they only take people to the Emergency Room for care?

As for my Mom, she is a fall risk. In fact, during their every 2 hour check, they found her on the floor more than once, fast asleep. She fell, she was too weak to get up, so she decided to just sleep there. So they wanted me to get a bed monitor, which I did. Now, when she gets out of bed, they check on her. She does not have a private room however, she is now okay about it since the other person is pretty nearly confined to the bed. I see my Mom nearly every day.

Ask and ask and ask. There probably is a regulatory agency which inspects these places either at the county or state level. See if you can get their list of who they inspect. Look at the specific violation, before you say no to a place.

The more research you do now, the better prepared you are for the future. In addition, places are starting to have waiting lists again.....
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Oh my, My husband and I are having to deal with a similar situation with my mother in ASL. She has continual bouts with UTIs which only affect her with dementia, which leaves her a little more "demented" each time we get it under control. Our problem has been that she refuses to have someone with her when she leaves her U/A specimen, but she contaminates each specimen each time so that we cannot use it to get a culture in order to get her on the appropriate antibiotic. It is a Catch-22. I tried to be there for her last one, and she promised to wait for me, but did it on her own, anyway. Sure enough she contaminated it by putting the special wipes in with her specimen. I then had her drink two glasses of water, wait an appropriate time, stayed with her til the nurse came and II insisted the nurse go in with her to get the specimen. Soon her dementia will keep her from being in the ASL, and she will have to go to Memory Care, which is very expensive. Much of the advise here is way out of her financial reach. Like your dad, she considers herself upper-middle class, and we would like to keep her living in the style she is accustomed to. However, she and my dad did not plan well financially for their golden years, and I am loath to use our money to help her because my husband (and I) worked very hard to save for our golden years. She has been able to pay her rent and medicines with her savings and will for a few years more at this pay scale, but we pay for everything else - and her requests are many. Many of your dad's issues, (my mom is a sweet woman to everyone (but treats us passive/aggressively as her servants, especially me, the elder daughter, who is the caregiver), will lie to get her wishes, will lie due to ego, will lie even though it affects her safety, and makes extremely poor decisions even when she doesn't have a UTI. Now my mom was always treated as a dainty "southern belle" by my dad, and hid much of her issues in the years before he died, so I (who did not live hear them) was blindsided (as, apparenntly my sister, who live near them) with how poorly she was on her own after my dad died.

Because we are having more and more issues with my mom, like you are having with your dad, I eagerly and hopefully have been reading the answers to your questions. Due to the financial aspects, my mom's attitude, and the lack of trust in much of housing for people in her condition in our area, I am becoming quietly (sometimes tearfully) frantic in her future. We cannot, because of our own physical limitations, have her live with us. We tried. It was not good.

Some of the ideas (like only allowing him disposable ) sounds mean, but it is necessary. Many of the things we come will come up with, our parents will hate and fight against. I truly wish you good luck and send prayers, and if you find an answer that will help you and your dad, please post it. It will help many of us that are in your particular situation in many ways.

I think, you and I may have to face the fact that we will have to sacrifice our parent's "lifestyle to which they are accustomed" for a modest, but hopefully trustworthy, place, one which will accept financial aid. I really do not know what else to do. I know I will bear the brunt of her wrath, my relatives' distress, and the guilt, but I have to consider my health, my husband's health (neither of which are great in our 70s) and my children's health and well-being (should we become incapacitated some day and need that money we have saved for our needs). I do not want my children to go through what we are going through.

No matter what, our parents are not going to be satisfied, are not going to be happy, and will not accept their limitations.
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Kablooie: Perhaps your father requires Memory Care.
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Martha007 Dec 2022
Memory care is between 8,000 to 10,000 a month in VA. Who can afford that? And what if one doesn't qualify for Medicaid
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Call "A Place For Mom" - Seattle has plenty.
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my wife and I came to the assisted living facility four years ago we both had bad knees, wife also had dimentia and was placed in memory care, she used wheelchair but she was falling out and ingiuring herself,
via Medicare and insurance we got a wheelchair that pyou could tilt the seat back and preventing her from sliding forward and falling off,
she used it for several months and she never fell out, sadly she passed away , and chair was not paid in full and it was returned.
( I was not charged for the unit )
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Where do you find adult family homes
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Kablooie, no matter where your Dad lives he is going to fall. Elders fall so quickly it is impossible to catch them that split second as they are going down.

My Mom's brain told her she could stand and walk, but in reality she could no longer do that. It was even difficult to keep her in a wheelchair as she would constantly try to stand up. Eventually a geri-recliner helped slow her down. Staff would place a pillow under her knees and Mom would be busy working on trying to get that pillow out.

As for Memory Care lock-up.... it is no different than any of us here locking our front and back doors during the day/night. My Dad was in Memory Care and he had free range of the whole building until 8pm when the elevator on his floor was closed off to the residents [Staff had a code to use the elevator], and of course, the front door to the building was locked. Dad was in Sunrise, a national chain, and he loved it there.
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Oh and for the incontinent part - take away his undies and leave adult pullups in their place. If that's all he's got, he'll have to wear them.
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I'm not sure what you should do but I feel your pain. Had the same dilemma with my mom. I thought they'd try to push her into MC which she's not bad enough for. She's currently in AL with extra levels of care which seems to be going OK. I don't think they're doing as much for her as I expected but she's managing.

I might hire one of her previous caregivers to help her out here and there if it comes to that. Speaking of which - can you do that? Instead of moving him, hire someone to come help him a couple hours on a couple of days a week?

Does the facility have PT/OT services? Maybe he's falling due to weakness and PT could help him out and keep him in AL longer?

Good luck!
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if walking causes falls, why is he walking ? Can a wheelchair be brought in ?
perhaps the trade off of him using a chair ( or walker) so that he doesn’t need to move to other care would motivate him to actually use the wheelchair.
His conditions do speak to needing more care, very hard when the person fights that.
Finding a good place where he has things around to keep him mentally busy.and doesn’t feel like a sterile place.Hope you can find support to navigate that next step
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Assisted living, memory care, skilled nursing facility and please don’t rule out hospice care.

Wishing you peace as you navigate your way through this challenging caregiving journey.
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Really consider your father’s needs above anything else. I have had my mom in three facilities this past 18 months. I was not satisfied with any of them. The last one was the more upscale one, beautiful facility, promising great food, a lie of course, special services, that she never saw. she was only there three months before I had to move her back to a previous facility. I keep cameras in my mothers room. I could not reach the facility, knowing that she was extremely agitated, positioning herself, in ways that I knew she was going to fall. I tried reaching them from 7 PM until I saw her laying on the floor at 10 PM. Nicer is not always better. Look at your staff ratio, look at activities. I understand what you mean about placing someone that is in stage four or five with people that are like six and seven. It’s a unnerving for someone in stage 4 or 5 to see that sort of decline, either realizing they will get there themselves one day, or just dealing with the depression of seeing it. I would think in Seattle they would have some facilities that separate the two. I have read of memory cares that do that. That have a complete separate wing for the more advanced cases. If I were you, I would see if you could find out if that’s a possibility in your area. Also my mother found the bigger, newer, nicer facility to be too overwhelming. She seems to adjust better to a smaller cozier environment.
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After checking, we do have 2 Morningstars in nearby cities (some might call them suburbs) but they are kind of far for regular visits. My dad will give us lots of grief if we do that, that's for sure. (Or if in he's in an MC surrounded by upsetting things and circumstances and they won't let him have a phone, that could agitate him into being a problem resident... angry.)

Thanks for reminder about asking A Place for Mom to help with resources; it's like the service in my City that I'm already using, though.
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Thank you Lealonnie for the tips. And it sounds like you found your mom a good one.

The two I toured recently were the type I didn't feel great about. They were small and homey ALFs with a memory care wing. They took me behid the locked door and it was definitely obvious that there weren't many places to go beyond a hallway and a big common room, and that the farther advanced folks were mixed in with everyone else and not much was going on in the big room. My dad would want to just stay in his bedroom, like he does now but even moreso (except to eat). He's not a big socializer these last handful of years.

I think he's less "upper class" and more "upper middle class" - perhaps we need to get him installed at one of the Aegis residences, but I hadn't looked yet because it is a $13-16K community fee (after already paying an $8K fee to his current place) and is around $6K a month for a studio in AL, so prob similar or a bit more in MC.

I guess I will just have to step it up and look at as many as possible, yet don't know where to start! We have a nonprofit group here that acts as a liaison (kind of like a real estate agent) to find facilities that meet certain criteria and that have openings, but they keep steering me toward adult family homes.
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lealonnie1 Dec 2022
Ask A Place For Mom here...on the right of your screen. The agent may be able to direct you to a few places in your zip code. Also, do you have Morningstar Assisted Living in your city? They custom fit seniors kind of, into their places bc they do AL, MC and certain SNF care all in one location. No buy in either. They assign caregivers to each resident which is a more personalized approach.
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Your father needs Memory Care Assisted Living whether he feels he belongs there or not. Private pay Memory Care is for "upper class folks" since the costs are at least $6500 a month or more. A person does not have to be drooling and incoherent to require the higher level of care given out in such a setting. There are elders in ALL levels of dementia and Alzheimer's who reside in Memory Care and a good one will set your dad up with other residents who are at his level of functionality. Being "locked up" is irrelevant really, unless your father is accustomed to leaving the current facility thru the front doors all the time and walking around the neighborhood? Otherwise, the Memory Care ALF will prove him doors to an outside garden/patio sitting area that he has access to and can use at his leisure. Most folks have no idea the exterior doors are locked bc they're covered with murals of library bookcases or similar, as they were in my mom's MC.

Otherwise, your dad can move into a Skilled Nursing Facility but they also house a lot of dementia patients. You'd have to find one that doesn't accept Medicaid residents and only private pay. The upscale one in my area of Denver was $14k a month in 2014 when my dad was in need of managed care.

There's no ideal or perfect set up for a dementia patient who requires managed care. Tour a few Memory Care ALFs to find one that you feel will meet dads needs to socialize with elders at the same level of dementia he's at. Keeping in mind he WILL progress and get worse, maybe slowly, maybe quickly. What the situation is today may not be the situation tomorrow or 3 months from now. You need to set dad up for the long term, perhaps sacrificing some of his immediate happiness for his long term safety and care requirements. And lets face it, at this stage of disease, there is not going to be a LOT of happiness under ANY circumstances. My mother fell 45x while living in MC. Sometimes 3x in one day when she forgot she couldnt walk. And the male nurse would come and pick her up every time, gently, and make sure she was okay and not hurt, take her vital signs, give her a pep talk, and get her back in her wheelchair. But when she first got into MC, she was the "sharp one"....who didn't belong there and yada yada. Not a day went by when I didn't thank God she lived there, where she was properly cared for, with no threat of being asked to leave, etc.

She passed in Feb at 95, peacefully, with hospice in attendance, and a parade of caregivers going in and out of her room paying their respects, the likes of which I've never seen.

Wishing you the best of luck with a difficult situation.
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