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Hi everyone! My mom is still in the early stage of Alzheimer's so she can still live independently. However, I am still not comfortable with the idea of her living alone since I live a few hours away from her. I was thinking of moving her to memory care, but she refused since she could still do chores and other things on her own and suggested a retirement home instead. I know the difference between long term care and retirement home since I read it in an article on the Seasons Retirement website. However, even if she's still independent, I think moving her into memory care is the best option since she'll get the care she needs. Or is it too early to move her into memory care? Is it better to move her into a retirement home first? Any advice?

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How functional is she? Some people are really good at faking it, so you may want to try to get her cognitively assessed so you can get an opinion on whether she is fine with being able to come and go from the facility on her own.

I think the retirement homes in the article are more for people with an active lifestyle, providing amenities rather than support.

My aunt was having trouble being alone in her condo so we helped her find a nice independent living place. It was a one bedroom unit that offered a nice variety of support features including meals, linen service, medic alert pulls and pendant, wireless internet and cable, scheduled shuttle service and group activities. No caregiving was included but individuals could hire their own and the staff were a reassuring presence. The unit had a small kitchenette, mostly for snacks or preprepared meals, and the on site laundry rooms were complimentary. For a while, dropping in with the echo show device was good enough for medication reminders and she made friends there. Then caregiver visits were needed.

When she got worse, she moved to a studio unit in memory care, where she was safe but not happy, because she couldn’t come and go freely. They would have moved her to Medicaid if necessary after a period of self pay, but it wasn’t necessary.

Are there any facilities nearby that offer the continuum from independent living through assisted living and memory care on the same campus?
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I’d look for a place that offers options as care needs grow. My mother’s nursing home had independent apartments, assisted living, memory care, and the nursing home. People moved between them based on need
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You could start her in an AL , make sure they have a memory care and will take Medicaid in future. My question is , will she fight it when she needs to be moved ? Will there be openings? Will a move cause quicker decline? Truth.. I would go with a memory care… I think the multiple moves is difficult.
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She is not ready for Memory care. I would start with IL into an AL.
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Memory Care is the last resort; wait until her dementia is quite advanced before you place her in that environment. Assisted Living is your best option at this point *I have no idea what a 'retirement home' is, quite honestly* Assisted Living will offer her care options IF she needs them, and not if she doesn't. Help is there on an as needed basis. Meals are served in the dining room, activities offered, mini bus on site etc. I would not offer her Independent Living as I would not offer ANY senior with ANY level of dementia or Alzheimer's at play Independent Living b/c they ALL need SOME services available to them, and monitoring for when things slide downhill. AL will give you that. It would be best if the AL you choose also has Memory Care available so if/when she needs it, she can segue into that level of care.

Best of luck.
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I am going through this same thought process about my mom. She has mild dementia (and some moments seems much more of a moderate level). I am getting her on a waiting list for MC but I don't think she's ready yet. She'd be even more miserable than she is right now.

I also am considering assisted living which I think is the best option for your mom. I don't know what a retirement home is and it is not really an option in my area. AL is the thing to look for. Meals, med distribution, activities. Where my daughter worked, they reminded those with dementia to head down for meals or to activities. They didn't just let them sit alone in their little apartments. Unless they strongly refused, then OK, stay in your room.

For my mom, I think she's too far gone for AL but not bad enough for MC. Kind of between a rock and a hard place. But it sounds like your mom is less advanced than mine if she is still living on her own. Start searching today.
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You and she are in a good place because she is willing to explore the possibility of some kind of “sheltered living” RIGHT NOW.

If you can locate a pleasant “stepped” facility near you, she’ll have the option of being moved to a level that’s appropriate for her if Assisted Living isn’t enough structure and support for her needs.

See what you can find online. The progressive living arrangements in my area are-
Independent Living - Assisted Living - Memory Care - Skilled Nursing.
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You may want to start with Assistive Living (AL) but this is all private pay so decision making also need to entail what her finances are.

If there are lots of assets so sell/spend; then a high level AL with continuum care may be a good option as many have memory care and nursing home options, rehab too right there and one can transition from independent AL to AL w/more assistance, to Memory or Nursing/rehab as needed . For these higher end facilities, one pays a large up front fee (about $100K where we live) and then the person buys the AL unit (can be 3 bed down to a studio size, about $250K to $100K or more depending on size chosen). But if one has a house to sell those proceeds can be rolled over. Then there are the monthly fees (about $15-18K where we live).....In other words several millions needed for a longer life expectancy. Sorry, this is not in expensive. Medicare and Medicaid does NOT pay for this. If one has private long term care insurance, that may pay for some.

Group home ALs can be much less, about $9K a month were we live and no up front fees, no need to buy an apt. But then your mom does likely does not get a private bath or suite, just a room. And in these "home like" AL, there are fewer activities as all are group for the 6 to 8 residents there. All meals together, no choice of meals in the room. If she needs "nursing home care" or "memory care" at some point, she'd have to be moved as these "group home ALs" are not nursing homes, some offer "memory care" are licensed for that but that would be more expensive, more like $12-$15K a month (where we live, east coast urban area, may be less where you live).

For all these situations where we live, one has to bring in their own furniture or rent it monthly and all require a hospital bed but Medicare should cover that.

If there are little to no assets, then one can spend down and in time qualify for Medicaid. It would be good to find an Elder Care lawyer licensed in your state to help you navigate this. Hopefully you have already executed things such as a durable power of attorney to step in and handle her affairs as needed. And hopefully you have an Advanced Directed executed so you can make medical decisions for her if needed as well as to serve as her "medical agent" as needed.

For my situation, mom w/no real assets and moderate dementia but also cannot do ALDs and IADLs; we had to do the spend down to qualify her for Medicaid. She was placed in a traditional nursing home that is Medicare and Medicaid qualified. AL would have been nice, but there were not millions to handle that expense for the hight end AL places. And the cheaper group home AL facilities w/no private bathroom, lights out at 10 and no ability to have meals in her room (she is anti social, does NOT want to be with anyone, cannot be w/a roommate due to nocturnal behavior and outbursts) the nursing home w/a private room was the only real option. Because she really cannot walk further than about 10 feet with a walker, there is no concern about wandering so the "memory care" unit was not needed (these units are locked to prevent wandering and they have lots of activities to help maintain memory, but my mom refuses any activity even in the nursing home unit, won't even go outside to get fresh air....They do not force things, that only triggers the meltdowns/outburst so it is what it is at this point.

Good luck with this. This is not a fun journey.
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Personally I would move her to assisted living where they also have a memory care unit on site. We did it for my mom..she LIKES it!!! The building has gorgeous surroundings, good food and the services she needs. My mom agrees if she gets deep in dementia she will move into their memory care. The unit is in her building so she knows it will be a safe place. She trusts I will do the right thing. Educate her.
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Paintingjtj Sep 2022
May I ask …Where ? I am looking for a future place for myself … have seen 3 … one in FL and 2 in NY. The place where your mother is sounds like a good one.
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Rabdom question. What exactly is a "retirement home"? Is is it synonymous with Independent Living? Or with Skilled Nursing Facility?
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Frebrowser Sep 2022
Strangely, the original post has been edited to remove the the link to the article, which if I recall correctly, described retirement homes that I would label as active living communities, not long term care at all.

They listed amenities including golf and other activities. So, something like a 55+ Del Webb community where they highlight home features like spa bath, entertainment space, and specialty kitchen storage.

https://www.delwebb.com/Design/Life-Zones
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Retirement home is independent living where everyone does their own activities of daily living but in a safer environment than in their own home. Meals are served in the dining room. Inside activities and outings for active seniors.
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My mother lived in a 'continuing care' facility, where she started in independent living, then moved to assisted living/memory care in another wing, and in her final weeks moved to skilled nursing. It worked out very well for her. The facility also had an insurance policy that kept the monthly fee stable, except for cost of living increases. She had to pay extra for the insurance, but it was worth it because she didn't have long-term home care insurance. It worked out well for my mother; she used every unit in the facility. She had dementia but wasn't aware that she had it. The social worker at the facility is the one who notified me that it was time for my mother to move to assisted living/memory care. She was not totally happy about moving, but in time she adjusted to it as her abilities declined. Have the discussion with your mother about what she wants if her health declines to a point where she is no longer able to care for herself. Would she want in-home caregivers, or would she be OK with moving to an assisted living/memory care facility? Much will depend on her finances. Get connected with a local social worker who can help advise on her options. While she is still able to sign legal documents make sure that all of her paperwork is in order. She needs to set up powers of attorney for medical and financial matters, have a living will with her advance medical directives and a will, if she has assets. I was my mother's POAs (only child) and my mother made me joint owner of all of her accounts and also we got a credit card on her account with my name on it so that I could make purchases for her. It made things much easier. I took over her finances when I saw that she was no longer making out checks properly. I had all of her bills and statements sent to my address. If she moves to a facility, don't have any valuables in her apartment, and she should have no financial statements or financial information in her apartment. Even if she has in-home caregivers, lock up or remove the valuables and financial documents. When she moves, try to downsize her as much as possible to mostly utilitarian things that she'll actually be using. No need to take all of her books, kitchen items for special events, clothes that she hasn't worn in years, etc. All the best to you both!
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Grace1122 Sep 2022
Excellent advice--regarding placement, paperwork, and caregiving!! The benefit of doing this in stages is that your mother becomes comfortable with the facility and makes friends with staff and other residents. This is invaluable because as the disease progresses, change becomes incredibly difficult. The staff also becomes familiar with you.
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Move her to assisted living now. My Mum in early dementia moved from her house to independent living. It only lasted three years and should have been far less. I feel if she went to Assisted living she would have had all her meals ( she lost weight while in IL), she would have gotten used to the activities and made friends and been able to function longer. As it was she didn't make friends locked away in-her apartment, was rapidly moved through assisted living (she couldn’t adjust anymore) and ended up in MC possibly a bit too early. Then Covid shut down everything and it’s been a disaster since then.
She can’t use these but The place where she is now at actually has dementia homes! People in early dementia move in, think they are living independently but they are closely monitored. So, as their skills slip with cooking, eating, cleaning, etc care is provided until they have to move to long term care. Maybe there is something like this in your area? They are provided by Shepherds Care Foundation. In Canada.
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Please consider moving her near you, but not in your home. Please make an appointment with an Elder Care Lawyer who can discuss your needs, mom's needs, POA and other legal documents like end-of-life care if they haven't already been drawn up. Ask for a referral to Independent or Assisted Living facilities that have good reputations. Ask for financial planning information and strategies that help. When you have a lot more clarity, then you and mom can visit facilities that have been recommended.

Memory care is the last resort.
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My mother had Alzheimers…it is frightening when they can’t tell you what is wrong or if they need something. Think I would move her to a place where she can receive continuing care as disease progresses… familiar surroundings as things progress. Not easy … wish you well.
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Do not move her away from her home. She will do worse, not better. Try to find in home care!

People think they are helping their parents moving them into these facilities when it so often leads to depression and early death.
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Lovemydoggies Sep 2022
How is your response helpful? Every situation is different, and every person is unique. One care option does not fit all caregiving situations. Not everyone has the luxury either financially or emotionally or physically or all three to care for a dementia patient until they pass.
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My suggestion would be to consider Continuing Care Communities. Moving from Independent Living to Assisted Living then Memory Care on the same campus is less traumatic than uprooting them from an environment with which they are familiar. My husband has Moderate to Late Moderate Alzheimer's. After touring standalone memory care and continuing care facilities, we decided that placement in a Continuing Care Community, Assisted Living, level 2, was appropriate for my husband. Standalone memory care facilities usually have at least two levels of care; however, both levels would have been two restrictive and non-stimulating for my husband with Alzheimer's. He was placed in Assisted Living Level 2 a little over two months ago and he is thriving. He has made friends and participates in in-house activities as well as off-campus excursions. When the time comes, my husband will move to memory care in the same facility eliminating changing geographical and building change. No matter what you and your mom decide, it is imperative that before a final decision is made, you should tour facilities and eat lunch/dinner together at the top two or three facilities. Good luck.
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Every option I considered for my husband did an evaluation of his physical and mental abilities and limitations, and they determined the best placement. He is the first level of memory care in a fabulous place that begins at independent living. The social, art, memory, current events, etc. programming and safety are a real blessing. He is so much better after just one month. He is close by and I visit each day.
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nicole2: At this time, perhaps your mother would require an assisted living facility.
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As a nurse, it sounds like it is too early for memory care. She needs assisted living or a senior apartment. There are senior communities that can "phase" your mom to the level of care as she needs it.
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In my state, she would be in assisted living or independent living, not memory care.

In independent living, it is like living in a hotel suite that contains an efficiency kitchen. Basically, you don't want to do yardwork any more and you can cook your own meals, if you want to.

In assisted living, you can come and go as you please, ride the elevator to other floors, choose to go out if you want to, own and drive a car and be expected to follow instructions. However, you might need help preparing your own meals and making sure that you take the right pills at the right time. You may not have a efficiency kitchen in your "room".

Memory Care is for individuals who can no longer live without someone to watch over them. They cannot remember to take their medications, need help going to the bathroom and keeping up with hygiene. MC is a much more structured living program as people who have memory issues, need routine and repetition and consistency. The activities in MC are more geared toward keeping their memory exercised, whereas in assisted living and independent living, the activities are more geared to learn and accomplish.

When my Mom was borderline AL and MC, it was really up to the nurse who evaluated my Mom to determine whether she went into AL or MC. It was very hard to place her.

I would start interviewing. I would look for places that have both AL and MC. Ask them how they would place your Mom. AL is usually less expensive. However, as you add on the services like medication management, laundry management, how much time they perceive they will have to watch your Mom (fall risk), it becomes more economically feasible to be classified in Memory Care. However, the activities are very different and the food is very different. I would not put your Mom into an MC environment unless she needs to be. It would be similar to a middle school child being in the same class as a bunch of 1,2 and 3 year olds. Yes, you can do that, however, the middle school child will not be in a healthy living environment.

After interviewing a few of them, you will start to understand the difference between MC and AL. I would also find out whether they can stay in the facility until end-of-life or whether she will have to move out. Do you have to pay in, then pay a monthly maintenance fee (like a timeshare), or do you pay a monthly rental fee?

I think it is too early to move her into Memory Care. However, the nurse that evaluates new residents, will tell you which he/she thinks is better for your situation.
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For anyone considering a ccrc, definitely spend time in the highest care units. Observe the general climate and state of the rooms. Share a meal.

Too many people go in wowed only by the independent living amenities, which may become inaccessible in mc.
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ChoppedLiver Sep 2022
Very, very true. My Mom's first experience with managed care was an AL floor for respite. She had a television that she could watch at any time, choice of 2 meals for each meal that was cooked to order and could be customized. Meals were served on tables covered with a tablecloth with real cloth napkins and silverware. She had freedom to go in and out of her room all night and never got lost. It was rated relatively high on Yelp.

While she was there, they realized that she really needed Memory Care because she was very forgetful and had trouble keeping her balance. She never got lost, just that she would ask the same questions over and over (e.g. what time is dinner, is it time for lunch yet, etc.)

3 months later, for respite, she entered Memory Care in the same facility. They turned off TV at night at 7 pm - 7 am because they wanted the residents to sleep. She chose her food the night before and when it came, it was pre-assembled and lukewarm. Everything was borderline overcooked. There were no tablecloths or cloth napkins. Silverware was sometimes plastic and always paper napkins. No knives allowed as the food was pre-cut or ground. Whenever she left her room, they made her go back to her room. There were people in the dining hall that had trouble eating hence, they would choke and spit out their food. Because she was in Memory Care, she was not allowed off the floor just to get some sunshine or touch real plants (her room did have a terrific view.)

That was an eye-opening experience for me. Now I was able to ask the "not so obvious" questions when I toured and get past some of the marketing-speak.

Thankfully, my Mom experienced it before she was permanently placed in memory care. We nixed the entire chain, even though each location was allowed to operate independently.

When I reviewed the great reviews on Yelp, I realized the reviews were from the assisted living viewpoint, not the memory care. One would not know that unless one either experienced it or was told it.

So yes, make sure you visit the different levels of care. I wouldn't have been surprised if they were overcharging for MC to make up for the really great, fantastic service they had in Assisted Living.
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