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.
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.
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.
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.
child to your mother.
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.
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.
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.
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.
It will smooth out after a couple of weeks. Bless your heart.
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!!!
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.
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.
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.