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My mom was recently diagnosed with frontotemporal dementia after having a large number of cognitive issues over the course of the last 18 months. Looking back we believe that this may have started closer to 4 years ago.


Things really took a turn in December of 2017 when she had her first fall incident. During her hospitalization a team of doctors ran the necessary tests and declared her medically incompetent. It was at this point that we knew that she could not live on her own. She can't live with me because I live in another country and my brother (only other sibling) struggles with his own issues which prevent him from being able to take on the duties of providing that level of care. At the time my mom was discharged from the hospital my aunt (mother's sister) decided to take my mom in, but as a lot of you know from your own experiences this caused a lot of stress and strife and around November of 2018 I was informed that my mom needed to be relocated, the sooner the better. I don't fault my aunt for this at all, she did her best and the complications of this disease require an almost saint-like level of patience to deal with.


Over the last couple months I have lead a concerted effort showing incredible due diligence, and with the assistance of family members doing facility tours and sending video back for me to assess, we have selected a facility where we believe that she will get the care she needs despite the fact that she may not be the happiest person in the world when she finds out about it.


The big problem is that I'm the sole person making the big decisions and breaking big / bad news to my mom. Back home, no one has the ability or the courage to discuss these things with her, and in the case of my aunt she doesn't feel like it's her place and I can't disagree. She's my mother after all. So any time we need to talk about anything serious, I need to come back into town, sit with her, discuss, drive the main next steps, and then I have to go home while the rest of the family deal with the smaller follow up items.


My mother has no idea she's about to go into assisted living, and frankly has no ability to grasp the fact that she's mentally incapacitated. Next Friday I will be travelling back to town to break the news about the relocation and the very next day we have a nurse assessment at the facility to determine if she belongs in assisted living or memory care.


I'm looking for any advice on what I can do to make this easier for her, and while it may sound selfish, how to make this easier for me as well. I'm not looking forward to this. It's going to be a big change, it's all going to come at her VERY fast, she's going to be separated from her dog which she loves more than anything, and she may not even be able to understand why.



Keep in mind I already have DPOA and full guardianship. So I can make the decision that she's going to go, but I have no idea what to do if she physically refuses to get up and go to the assessment.



Any comments are appreciated. Thank you.

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I don't recommend an AL. My ex husband just died from this disease. Your mom will eventually require 24/7 care.
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A little over a year ago I had the same problem with my mother. She was in a rehab after a bad fall at home which broke her neck! I just told her we were taking her to a new rehab facility that will take her furniture to make it feel more like her home. She was fine and fell asleep that night without any problem after a couple of months she called it her home and that she loved it. A little white lie for the elderly to help keep them in a safe environment goes a long way. Please know I did (and my father) go visit her daily and this really seemed to help her out with the transition to her new home. My father is now with her in the memory care section and doing as well as can be expected. I know in my heart they are being taken very good care of and are receiving their medications and meals on time each and every day, not to mention getting daily activities which helps out as well.
Please know some facilities allow dogs to live with the owners but require someone to take them out for potty breaks at your cost. I know where my parents are they allow this. I can bring my dogs to visit my parents whenever I so desire and that really helps my parents, by just sitting and petting them.
I wish you luck with your mother, I know how hard it is to do this and I have done it with both parents.
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I don't know how old your mother is, Peter, but many of the Wives of The Greatest Generation never made a decision for themselves. My mother would defer, delay, distract, deflect. My sister and I had to make the decision for her, even though she was not under guardianship and theoretically fully competent to decide for herself where she wanted to live. The only "option" that was not working was, of course, the only want she wanted - to stay where she was, alone, with no help, and die there. We had to tell her that neither of us could live with ourselves if we sat by and did nothing, while the neighbors called police to do wellness checks, and then called to implore us to do something about Mom and her living situation. The move was not easy. The staff advised us to not visit for about a week. She acclimated fairly quickly and even said she wished that she had made a move like that while Dad was still alive - they could have enjoyed some time together without the burden of a house to take care of, meals to fix, and someone having to drive. She was still bitter about our having made the decision but she was never going to get around to it herself. She even said that she would make the move to ALF if/when she could have an apartment as large as her house (3 BR plus lots of storage) and take 2 years to go through all her stuff prior to moving. This from a woman who was not getting out of bed.

You and your brother, even though he is not the point person, need to present a unified front. We leveraged the "health and safety" aspects of the move, what kind of children would we be if we let something bad happen to her and didn't even try to find a safe environment? Your aunt did the best she could but she is on the same page also, so living with her, or living alone, are no longer options. Gradually narrow the "choices" so that she doesn't have to make one.
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I was the primary caregiver for my grandma because lucky me I inherited what I call the "caregiver gene" whilst gram's daughters did not. Through attending one of the many caregiver luncheons/information sessions, I was blessed to have listened to a guest speaker who specializes in these such moves. Knowing that I cannot do this alone, that it truly takes a village, I essentially asked her if she could meet up with gram's daughters to let them vent, cry, lay out all their concerns and essentially give them a pep talk that this is the next logical step. I, being on the other side of multiple burn-outs, was ready and confident in how it would work. I knew from my solutions to caregivers course that our care-receivers are always telling us something...we just have to know how to listen. Grams was a worker, always cleaning. She also was a good piano player. So, I essentially was taking her to work and I had to travel for my work (the white lie). I found what dementia could never take from her; the strong work ethic to help out family, to help pay for her bills, to help pay the taxes. Because I was working, she was definitely willing to help...even if it meant wiping up tables and having to play the piano for all the old people. She was 90...and one of the oldest in the LC. One thing said in course that stuck with me for all the caregivers with that guilt or promise to the other spouse that you'd always take care of them, is that would you truly think that the spouse that passed would require you to keep that promise you made knowing the current condition of the still living spouse? I think not. Oh, and that care specialist usually was booked with 2 moves a day with family. She is truly an angel for helping my family out with gram's move. Good luck everyone with your moves; one of the most difficult things we have to do from my caretaking experiences.
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My daughter has brought her father's (my long ago ex) dog to visit him every other day for almost three years now. ... a miniature dachshund. My ex is in nursing home with probable Lewy Body dementia (diagnosis made by my psychiatric RN daughter) , unable to get out of bed unassisted now, although in the beginning he could get up to use the bathroom (and locked himself in once). She says that his visits with his dog are the only thing he lives for now. I no longer have any pets as I live in high rise apartment that doesn't allow dogs, and I don't think cats are quite as companionable, although I prefer them for ease of care. I'm afraid my daughter will be burned out when it is my turn to go to nursing home or memory care, but I hope I don't put up a fight about it. Actually I hope I die before she has to spend all of my money on memory care!
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PeterS,

First off, I want you to know that I have also been in the gut wrenching angst position where you are, and you will come through this. Second, there are many excellent suggestions posted here already, and I would like to point out what worked for me with my mother.

I believe in conversation that what you call something is crucially important. As an example, I made a determined effort to always call the AL her new apartment, not "room." When she would say, my room is so small, I'd say, your apartment is quite generous with a seperate bedroom and living room. There are actual single room studios but she is not in one, but I would still call it an apartment to give it a more homey and independent sound. To me, "room" is like being punished and sent to your room...or a hotel room which is temporary.

Yes, have someone else with authority be the bad guy. For instance, when I had to take the car keys away from my mom, I asked her attorney to tell her. He was at her house for a friendly consultation, and mom excused herself to go to the bathroom. While gone, I asked the attorney to tell her she couldn't drive anymore. Playfully he said, 'oh you want me to be the bad guy,' and I said YES! I am her daughter and she will argue with me and do the opposite, and you are an authority figure she respects and will follow your instructions. And he did, and my mom did, and I got the keys to her tiny 18-yr-old car wo being the bad guy. (However, 15 yrs ago w my dad, I was always the bad guy no matter what. It's awful to take a battery of constant hurling insults but the man was seriously demented).

I like the suggestion of going for a drive and saying, "how about this one?" and then stopping there. Let's see what it's like inside, or, I hear they have a free lunch today, or they called me and said they want you to come live here and they already have a nice apartment for you.

At mom's facility, there are a three or four small dogs (I'd say under 20lbs), and the dogs owners hired a person to walk their dogs every day. My mom is allergic to dogs, so I don't know how animals are managed aside from the dog walkers. No cats that I am aware of. There are regularly scheduled therapy dogs of all sizes that come in to the main gathering area, maybe once every two weeks or so.

My mom still complains abt the AL apartment I selected for her, but with her health issues, it was the only one of three available that she could live in. She will always complain but seems to understand I am doing the best I possibly can. I live 1000 miles away in another state and it is difficult. When she needs things, I can order delivery online through local stores or Amazon or other sources.

Peter, it sounds like you are a strong person and loving son, and you will get through this. Please take care of your Self, take a walk, eat good food, keep regular sleep times, limit things and peole that take away your focus, find resources for senior support (and I know that being at a distance makes that very difficult), take notes (!) and get names and phone numbers for reference later of who said what.

Hugs, because you'll need them.
Live247 - my screen name because I need an affirmation to remind myself to live 24/7.
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It's going to be ok.....be gentle and firm.

My mom's personality was easy-going yet when I told her she couldn't return home because things changed, she was devastated. She cried, got angry, went silent, yet *eventually* realized it was for the best. I told her 'if I thought it could be another way, I would do it'...
Society talks about the golden years and retirement, yet there's an extra chapter at the end sometimes. It's called old age and decline.
I had to explain and bring my mother across that bridge of understanding. 'Our bodies and brains are changing and sometimes we need more help that we think....'

It's a tough passage, yet she'll get through it. It took her about 3-4 weeks to settle in...
Being there to support (just being present) and listening are the biggest things.

Set up her space beautifully so it looks warm and welcoming before she gets there.
I also put a focus on the foods that she really loves, too. Snacks, take-outs, desserts, beverages to enjoy that the facility might not have (she had a mini fridge that we brought in).

The dog can visit if someone is going to keep it.....most facilities are open to that.

All the best to you and Mom!!!
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Live247 Jan 2019
These are all great suggestions, Savita. And kind.
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There will be a period of adjustment for her, and for you. It may be uncomfortable because it is confusing for her. She may call you and say some harsh things at first. You have to comfort her and visit as often as possible. Steel yourself, it will be OK.

It will smooth out after a couple of weeks. Bless your heart.
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Kudos to the aunt for having taken on this task for almost a year!
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It's very difficult to tell anyone you love that they cannot have something they desperately want. Most elders don't really know what an AL or MC is - they consider any facility a NH with confining hospital like rooms. So in addition to wanting to avoid a NH at all costs, they are also afraid of being left alone in a strange place and losing what little control they have over their life.

I am guardian of my father with vascular dementia and placed him in MC; both guardianship and MC placement were very much against his wishes. Dad's executive decision making was completely gone by the time I retained guardianship - all decisions were spur of the moment emotional choices based on what he "wanted".

I explained it all to my father as though he was still fully competent. I think that even if he doesn't understand or retain what I'm saying, he still picks up on my tone - that I really believe this is in his best interest. I explained why he needed 24/7 care that the family could not provide. I explained why I had chosen this particular MC. I explained how I envisioned his life was going to continue in the MC, with his basic lifestyle unchanged or somewhat improved. He mostly could eat what he wanted when he wanted it. Someone would continue to visit every day. He would have a phone in his room that he could use to call anyone. There's a porch and patio area he could visit whenever he wanted. Dad would interrupt me and tell me he didn't care about that amenity or that I had no right to do this to him. I would calmly response that the judge had decided I need to help him make good decisions and MC was the best option for his care. I arranged for a involuntary transport if needed. I told my father that he knew I was just as stubborn as he was and that he would be going to the MC - his only choice about it was how he was going to get there, a pleasant drive over in the car or a transport in a ambulance. He chose the car and cussed me all the way there. We arrived while breakfast was still being served and he got to pick out a meal. He fussed with/at me for a couple of hours then my estranged brother arrived and I left so they could trash talk me.

Dad settled in quickly to the MC. I think primarily because he didn't have to be afraid anymore - there's someone there to help 24/7. My estranged bother visits him 6 days a week and the rest of the family on the 7th day.

Although Dad continues to complain to me about wasting money on MC, he told his nephew during a visit that he likes MC and is only worried about being able to stay - which he probably will because I have told him there's enough money to pay the bill for the rest of his life.

You are very lucky you seem to have the support of the family behind you. My family split over care giving for our parents. Just remember when your mother resists entering AL or expresses some hurtful comment on your care decisions the behavior is that of a broken brain driven by fear of the unknown; please don't take anything said from this frame of mind seriously. Stay calm and be as comforting as you can. Good luck with this difficult transition.
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We went through all of this last year. We had to put my mother in law in a facility because she is 92 years old and lived with her 93 year old husband who could not take care of her but would not let any one else take care of her. When assessment day came we told her she was seeing a nurse for a phisical. Her husband was out of the house doing some shopping with his Daughter. Mind you, she passed the assessment for AL but about two weeks later had to be moved to memory care because once she realized she was going to be without her husband (who refused to go with her) her demencia got much worse. Keep in mind this might happen with your mother.

Realistically it takes much more than two weeks for her to settle in her new surroundings but eventually she will. My mother in law may ask once in a while when will she be leaving and I tell her that she is there because of her problem with her memory and that as soon as she gets better we can talk about it. It seems to help her and she goes for a while without bringing the question up again.

Its a difficult situation no matter what you tell her or how you get her there. Just know that she will be well taken care of and she is still loved. This was something we really were not prepared for and there will be all kinds of emotions. When a loved one gets to the point where she needs 24 hour care no one person can take care of her. You are making the right decision and it comes from the love you have for her.
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We're going through this with our Mom right now. We got her to the facility by saying she needed to have her multiple medical issues monitored (which was the truth). She's been there less than two weeks and is insisting that she is leaving. This has been extremely hard on us but trying to keep her home and safe was almost impossible. We're hoping this stage will pass and have heard from others that it could take anywhere from 2 weeks to a few months. I'm hoping we can stay the course for a while because other options could put her in an unsafe environment. I'm telling you this because, like you, I was dreading the day I had to take her but wanted you to be prepared for what could come after that too.

Mom had a cat that she loved. Her facility allows cats but we waited to bring him as he likes to escape and that caused a lot of anxiety for Mom. If she had continued to ask about it, we were going to try to come up with a way to help keep the cat in the apartment. But she has not asked about him once since she moved so you might be surprised that this could happen with your Mom's dog too.

This is one of the most heartbreaking decisions and events you will probably go through. I wish you all the best and hope your Mom gets through the tough phase quickly. Hugs.
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Our family is in the throes of this as we speak. Except that for the first time ever, our mother is having serious issues with delirium now which has been horrible. No, you are not selfish for hoping for yourself too particularly with your international situation. Frankly if your mother may not even understand that she is separated from her dog, then I wouldn’t bother with assisted living. I’d go right for memory care. Moving her once is better than twice. Also, consider an aging in place facility so she won’t have to move anymore. My sister and I discovered a company that owns small neighborhood group homes that are fully licensed but provide a much more intimate and nurturing atmosphere. Unfortunately we have to get to rehab first to buy us time to get her things settled in the new place. Good luck to you. You sound like a very good
child to your mother.
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shb1964 Jan 2019
Weeble, your situation sounds exactly like mine! Today my mother goes to rehab after an awful experience with delirium, delusions, and hallucinations and my sister and I have also found a neighborhood group home that is "aging-in-place." In Fla, they must have the same licensing and inspections that large, institutional places have. After some rehab for a fractured knee, we're moving there. We don't want to do two moves, but it's necessary to buy the time for us siblings to move her stuff.

One more suggestion for Peter, though it may be late in the process, and anyone else in this situation. Hire an elder advocate and if possible, a senior housing consultant. My sister and I have done both - paid with Mom's funds. We have paid the EA about $1,300 and her assistance with the medical maze (and encouragement for us siblings) has been invaluable. She knows her stuff and recommended the housing consultant; they've worked together for 30 years. She gets compensated from where Mom is eventually placed. Money well spent. Also, get everyone else to be the "bad buy" - they're used to it. The docs, nurses, techs, hospital care and case managers, the facility's marketing/sales person or whomever you're dealing with. Let everyone else be the bad guy - some will fall on you but maybe less.

I understand your feeling about selfishness and be assured, it's not selfish. Taking care of our parents sometimes means realizing we cannot physically do it ourselves, so taking care of them means finding a place with a staff that will. Give your aunt a hug - she tried but no one realizes how ungodly consuming this is until they step into it. She was wise to realize that it was too much for her.

From what you've said, this is the right decision for all concerned. A final thought...if she has regular visitors, perhaps a new, smaller dog (to fit the size requirement) might be a good idea to help with the transition if staff and family can be there regularly to ensure the pet is being regularly cared for. Best of luck. You are doing the right thing and it is not selfish.
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I had to move my mother to assisted living also under difficult circumstances. Luckily, I had looked at the places with her, perhaps a year earlier, so I kept reminding her that we had looked at her facility together and we liked it. I suggest spending the first few days with your mother if you can when she moves in, to get her into the routine and to get her used to the new surroundings. I also frequently reminded my mom of all the things she brought from her home and we made sure to decorate the place with all the paintings and art and photos that she had at home. At first she thought it was a hotel, and never complained. There was a while when she said she was going to pick up and move but that seems to have stopped. Now I think she knows it's her home and she rarely complains. Occasionally she might ask about her old home, which I had to sell, so I do tell her that it was sold. Somebody also told me that at some point, you might have to do things that you just don't want to do, but you don't have any choice. I think moving a parent to assisted living is one of those situations.
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Not sure if this will work for you, but I had luck explaining to mom that I want to check out some places while she still had the majority of her faculties. That way she would be more in control of where she may go when/if that time comes. She thinks that time will be much later than we do.
I gave the sales directors the heads up where we are and found out that they offer free two day stays. We plan on taking advantage of that when we get the long term care assessment/approval back and go through the elimination period.

It it really helped that we found a “resort style” that we can manage financially. She seemed really positive about the experience and the possibilities of improving her life style.
We know that this will most likely be only a step, and a higher level of care will be needed soon. But having activities and people around could help delay the brain rot that comes from just sitting at home and watching the Boob Tube.
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About the dog: therapeutic white lies again. Poochy is going to live at Auntie's until he's gotten his medical clearance. Poochie has to have a 6 month quarrantine because he was exposed to an unvaccinated stray. Poochie has to go to assisted living therapy dog training first, and they are unbelievably difficult to find!(I like that one best).
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jacobsonbob Jan 2019
"...assisted living therapy dog training..." LOL, this is great! Thanks, surprise! (However, I've seen dogs brought into my mother's nursing home to "visit" as many residents as are receptive, so maybe there IS such training.)
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Your mom's dog is a victim of her disease, too. It will lose it's beloved person, as well as whatever home it knows with her. Is there a good solution for it if mom can't have it?
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PeterS Jan 2019
The dog was a sticking point for the family for a while. Up until a couple weeks ago I was being told that certain family members wouldn't sign off on any plan I proposed unless the dog could go with her, but they've relaxed their stance a bit. We know that the dog is not getting the best care with her now, and sending the dog with her would ensure ongoing negligence. Plus every facility that we toured stated that the would allow dogs so long as they are under a certain weight (the dog doesn't qualify), and if the resident can take care of the dog, which my mom cannot actually do.

The good news is that my Aunt is an animal person. On the farm they have 7 horses, 5 dogs, 4 cats, a parrot, etc. They've already stated they're more than willing to take the dog in.
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Does the facility you are moving her to have both an assisted living part and a memory care part? If it has both, I agree with Grandma1954 to skip AL and go straight to memory care. The fewer changes the better. She will settle in...eventually. It will be heartbreaking but you are doing what is best for her.

Her brain is damaged and she does not have capacity. You can't be sure what she is and is not capable of understanding. Do not tell her that she is moving. My in-laws, who both had capacity, made such a stink about moving to independent living that one would think we enrolled them in the Hunger Games.

On the day of the relocation, act as if it's an ordinary day and that you're taking her to a special senior luncheon. Make sure that a director from the facility is there to receive you and your mother and give her a tour of all the activity rooms and amenities. Let the director take the lead and you observe. Also make sure that her prized possessions are in her new room before she's shown it for the first time. Enlist the help of the other family members in getting this done. Peace.
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It might be wise to skip Assisted Living and go to Memory Care. The only reason I suggest this is once she is comfortable in Assisted Living if she takes a down slide she may have to be moved to Memory Cane and it will take her a while to get used to that move, another group of people, another group of caregivers.
If she grasps anything at all you could tell her that the Doctor said she had to go for "rehab". Many people will accept the decision a doctor makes easier than a decision from family.
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PeterS Jan 2019
Thanks Grandma1954!

The facility we're moving her in to has both assisted living and memory care. After discussing placement with doctors, consultants, the facility itself, and more, the plan is to move her into assisted living. The FTD hasn't reached an advanced stage and while we know that a move later on could cause issues, it's believed that having her as a resident with more cognitive people may prolong what time she has with good cognition. However we'll be keeping a close eye on things and will be looking to do the shift to memory care before advanced stages are reached.
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I am going through this myself, which I will wrote more about in the Dysfunction Family Blogs section....But...if this helps, or possibly it doesn't matter in your situation, but the Assisted Care Facilities I have seen allow dogs. Is she well enough to care for her dog, in the assisted living facility? If so, please look for one that will allow her to take her dog. I'm 'in love' with my dog, and it would be horrendous, if I had to part with her...Good luck in this next journey.
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SusanNeedsHelp Jan 2019
I'm replying to my own post! Ha! I see that you addressed she has actually not been taking good care of the dog, and, bottom line, the dog is too big, to be allowed there anyway. AND I see an Aunt with a wonderful place, will take the dog..and the Aunt is a dog person. Good!
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And good for you that you recognize others limitations for providing care and doing what is needed to find mom the needed care. Some prefer to stick their heads in the sand.

It will be a tough conversation, no doubt. I don't think I would tell her that she is going to be assessed for assisted living vs memory care. I may not even tell her that we are going to look at a facility. Instead if I told her anything in advance it would be to look at an apartment, which is not far from the truth. Maybe even as driving by and saying let's take a look at this place. Or under the guise of a new restaurant that has excellent food. I assume you will be having lunch there which should be offered to you by the facility at no charge.

Read up on therapeutic white lies. Honesty with those with dementia does not often work out well.
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Hi PeterS!

First let me commend you for seeking the best options for your mom, and from afar no less! She, and the rest of your family, are very lucky to have you.

I think you may find this link helpful, since you have already made a decision for placement: https://www.agingcare.com/articles/checklist-for-caregivers-finding-assisted-living-427464.htm

Again, I commend you for doing the hard work.

Good luck on this journey!
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