Short question, is preemptive place wrong? MIL has early onset, am I in the wrong for trying to convince her family that they would be better off while she still can pick a community that progresses into different stages of care?
She is going to get worse, not going to get better. Is it wise to just get ahead of it before emotions take over and cloud the family's judgement?
Feel a little guilty in speeding up the process. I just do not want to end up down the line having my MIL live with us either. Out of her siblings we are the ones most put together so it will fall on us,
A person isn't 'wrong' to consider the future of their elderly loved ones, using a realistic lens instead of a rose colored lens. As disease progresses along with age, limitations begin to set in. More help is needed and warranted; mobility gets affected; cooking and driving has to cease b/c fine motor skills are affected along with memory which makes the elder forget she left a pot on a red hot burner. Or how to get to the grocery store in the car, in spite of the fact she's driven there for the past 20 years. That's the nature of progressive dementia. So placement in Assisted Living to start is never 'wrong' or a 'bad' idea b/c AL is specifically designed to make a senior's life easier. Care is available when & if it's needed. Meals are served 3x a day in the dining room; activities abound, a mini bus is available to take them shopping so a car is not required, medical doctors come into the facility to see the elders, medication is doled out and comes TO the facility directly, and about 100 other services too numerous to mention. What's the downside, really? There isn't one except for cost and the emotional feeling for some that they 'should be' cared for by family. Which is all fine & well IF all the family living in the home is in agreement. It has to work for ALL or it works for NONE. We read here all the time that one or the other spouse isn't on board and the other one gets stuck doing all the care, then divorce is brought up, etc. That means the elder living in the home is NOT working for everyone.
The other upside to AL is that Memory Care is attached to the place you pick and the elder can segue into it if/when the time comes that wandering becomes an issue and/or the dementia advances to the point where it's required. Not everyone is equipped to clean up incontinence issues at home, or install locks on their doors way up high so the elder doesn't run into the street at 3 am. Nor are they interested in staying up all night with the elder who sleeps all day & is wide awake all night. Dementia is a very difficult issue to deal with at home.
Here is a very well written & easy to read booklet on the subject called Understanding the Dementia Experience. I highly suggest you read it & have the rest of the family read it too; it's a free download here:
https://www.smashwords.com/books/view/210580
Knowledge is power; don't go into anything blindly. Learn all you can about dementia and what lies in store for ANYONE who takes on the caregiving role at home.
Wishing you the best of luck.
My logic is if my MIL finds a place she likes that has a transition process it makes the end stages far easier for everyone.
Anyone have tips on how I can better convey this notion to her family?
I'd say it's better if you feed the lines to your spouse, and include the fact that moving someone with Alzheimer's to an unfamiliar place is far harder on them when they are deep into the disease than it would be earlier on when they'll still be able to learn their way around the property.
I remember when a particular resident was moved to my mother's memory care facility. She was a former nurse, her daughter and son-in-law were doctors, and she knew good and well that she was in a lockdown facility for memory care and was absolutely devastated. She cried for days, and when I'd come to visit my mother, I'd talk to her and try to make her feel welcome. Within a week she was completely settled, happy as a clam, and had multiple friends among the higher-functioning residents.
It seemed a real shame that she was put there so early on, as she seemed to be only mildly dithery, but otherwise perfectly fine in the head. However, Covid hit, and I didn't see her for a year when the MC was locked down. When I was finally able to get back in again to see my mother, the other lady was a shell of her former self, and I don't entirely blame the lockdown for that. The Alzheimer's had progressed that quickly, and there was no question she belonged there. Fortunately, she was already in and settled, and I'm sure moving her in her current state would have been terribly traumatic for her.
I think you're on the right track, but the message needs to come from your spouse.
No one can morally or ethically assumed into the caregiver role against their wishes. You are not responsible for MIL's happiness. Find the boundaries and defend them with your spouse.
BurntCaregiver made good points about eventual facility care: "Many senior communities are very nice places and they do provide higher levels of care as they become necessary. Many elders even ones with dementia are actually a lot happier when they move from their homes and into an AL because they get socialization. " This is true for my MIL currently in a LTC facility -- shouldn't be visiting Lllama farms or fishing from a pontoon in her wheelchair if she were in my home. Not sure how recent your MIL's diagnosis is, but maybe they just need time to accept it.
You and your spouse should start educating yourselves on the condition so you can interact with MIL better and know what to expect as she progresses. After you do some of that you will be able to recommend it to your other in-laws.
Hopefully your MIL has her PoA in place, as well as Advance Healthcare Directive and Last Will. Hopefully her PoA will seek the advice of a Medicaid Planner to see that she can qualify if/when she needs to. If she does accept eventual facility care it needs to be one that accepts Medicaid. Your in-laws should know that eventually MIL will need 24/7 care and if at that point they choose to privately hire, this can cost as much as a facility plus they'll be doing all the coordinating, finding subs, paying withholding taxes, etc.
Mostly do not allow them to bamboozle your spouse into taking her in with talk of "we'll help you". A casual search of this forum will tell you just how far this deluded and uninformed promise goes. Wishing you much wisdom and clarity!
Another reason to place an individual earlier rather than later is that the person who still has the capacity to understand the need of a placement will normally be more cooperative. In our case we waited too long. When Mom was 85 through 90 she agreed that when she was no longer able to care for herself, AL would be the next step. We even had some conversations about which items would mean the most to her to have in her room. Mom was never diagnosed with dementia, but her mind did slow and she did lose some of her ability to make good decisions. When it was clear to her daughters that she was NOT caring for herself properly and was not capable she had lost the objectivity needed. In her late 80's Mom had chosen the facility where she would have liked to live (she visited a friend there and liked the staff, the kitchens, and the rooms). By the time she was in her early 90's she refused to consider it. Her last years were spent in a home that was literally falling apart (60 year old mobile home) and increasingly filthy because she was no longer able to clean, unwilling to hire help, and unwilling to take the next step she had agreed would be necessary. If I had it to do over I would be a very strong advocate in taking the next step while it was still an easy step to take. She would have enjoyed the more social setting in the AL facility, she would have loved having someone else responsible for keeping things clean, and she would have loved not having to prepare meals. We sisters would have spent just as much time with her but the time would have been spent in joyful and contented companionship rather than struggling with basic issues of cleanliness and attempting to monitor diet, meds, and other issues like leaking roof, plumbing failures, electric outages, rodents, ants and other pests.
Having a family meeting with them first without your MIL present and bring it up. Make it very clear and on no uncertain terms that your MIL will not be coming to live at your house and that you and your spouse will not become caregivers to her when the dementia advances to the point where they become needed. This will make all the difference. Families usually think "someone" will step up and take the elder to live with them. They don't want to be the one, but "someone" will. Make sure they know you won't be the "someone".
After this meeting, the family should meet with your MIL about it. Get her input as well. Then start looking at places.
What does your MIL understand of her own diagnosis. If she is with it enough to understand where she is going it is time for you and hubby, being as you say the most "put together" to discuss all this with HER. She needs to make certain everything is now in order, all forms for POA, for her accounts, for management of her finances is put together. She needs to be certain will is done, and yes, she needs to make plans to make herself safe in ALF.
My brother was faced with this when he was in an accident, then diagnosed with probable early Lewy's dementia. He was in rehab, then had to decide if he could remain in his small place on his own without me or any other real support system in his own area of the state. He was able to see that he could not. He was able to sell, to choose his own ALF, and to adjust. He was able to discuss his diagnosis, said he wasn't happy to know where it was going but was happy to be considered on decisions, and to know he had support, and to know that the way he was seeing the world was happening for a real reason.
You, husband and other siblings need to sit and talk. Your MIL then should be brought into the conversations and planned should be made.
You are absolutely RIGHT. That doesn't mean anyone will listen to you. And I caution you, read other OPs posting today and sit with your husband and decide now that you will not bring your MIL into your home under any circumstances whatsoever. Make that an option that is never on the table would be my advice. But you must in the end make your own decision.
At the second meeting, you will have arranged for a virtual tour of your top two pics for Assisted Living. This AL has a Memory Care attached. All of the siblings will be at this meeting.
Between first and second meetings, you will have toured various ALs, and made your choice for the virtual tours, to share with your family. You will have let them know that this is what was going to happen when you met at meeting #1. 😀
See All Answers