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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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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 15, 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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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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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 14, 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 14, 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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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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Kudos to the aunt for having taken on this task for almost a year!
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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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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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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 15, 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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