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.
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!
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.
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.
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.
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.
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.
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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