Is preemptive place wrong?

I’ve found that many families have a hard time processing the dementia diagnosis of their loved one. The LO has an especially hard time digesting the diagnosis. Heck, they’ve just been told they’re terminally ill and that they’re going to lose all their faculties! With this diagnosis comes denial and inaction. You are planning strategically, which is already difficult for many people to do. You can help your in-laws by finding resources and having them available for when they are ready to discuss this new diagnosis.

Before you look into these resources, which I’ll discuss in more depth below, make sure you have a clear diagnosis of your in-law. There are over 90 known causes of dementia, and some of these are permanent and some can be fixed. It is imperative that the diagnoses come from a neurologists. Blood tests, MRI of the brain and even spinal fluid evaluation can determine the type of dementia. It is important to know the type of dementia because that will determine the course of treatment and give you a better understanding of your in-law’s outlook.

The most important resources to find right now are an elder law attorney (more on this below), setting up medical power of attorney, establishing Social Security and IRS authorization, and contacting your local Alzheimer’s Association or area agency on aging to find out what resources are available in your community. You can also personally start touring the caregiving opportunities in your community. It can be home health, adult foster care (five-six or less people living in a care home), assisted-living and memory care residences. While you want to plan in advance, the type of dementia your in-law has will make a difference on when 24-hour care is needed. Sometimes it takes just a few years and sometimes it’s a decade before they need the 24-hour care.

Regarding the elder law attorney, this is vital to protect your in-laws assets. The family needs to determine who will become responsible for your In-law both legally and financially. Caregiving is extremely expensive and drains people’s finances very quickly. There are also clear guidelines from Medicaid on what you can and cannot do with the dementia patient’s assets, if you want your LO to qualify for Medicaid. Noncompliance with Medicaid guidelines can mean
denial of Medicaid funding. This means five years of compliance PRIOR to applying for Medicaid. When speaking with the elder law attorney you want to make sure that you’re also protecting the person who’s given the power of attorney. The elder law attorney is representing the patient only—the legal relationship is between the patient and the attorney and the person with the power of attorney is a separate entity with their own legal representation. I am clarifying this in case there are any disputes down the line. The other thing the family needs to discuss is if there will be any compensation for the caregiver. Many caregivers are forced to give up their careers and income to care for the LO. Caregiving is an extremely tough job and completely takes over the caregiver’s life. Compensation needs to be established upfront or there will be nothing for the caregiver in the end. Family has to understand that they are asking a lot of the caregiver.

One thing you’ll notice in reading through this forum, is that many families face untenable situations in the scope of caring for their loved one. Unfortunately, families often have a hard time coming together and recognizing that they need to work together as a team and support one another. As an In-law, I recommend that you offer support and resources, but only be involved in the actual decisions if you are invited.

Best of luck to you.

Philly52: Do not feel guilty to place her. You are making the right decision now. You should not pay for her care out of your own financials. While that's all well and good to get a second opinion AND quite possibly a third, at some point the elder's family has to face the facts.

Don’t feel guilty. Being a caregiver means you do a lot of crisis management and prevention. Finding a nice assisted living facility now will save you a heap of trouble once the dementia goes into high gear. Family members often are in denial—“she doesn’t need to go to one of those places. How can you do this?”

You are the one living it, observing problems and seeing the road ahead. I would scope out facilities without her. Is she even able to make a good choice at this point? Sometimes choices can be confusing. Find an assisted living facility that has nice one bedroom apartments where she can have her own furnishings. There are different levels of care depending on how much assistance the resident needs. There will be others in her generation and make sure there are activities that can participate in. Where is your husband in all of this? I’m assuming she’s close by—visit with her often. I bet the other family members won’t. Do not move her into your home!!!

There's no need for you to feel guilty. Why should you feel guilty about hastening MIL into care when it's clear you have no say in the matter anyway and nobody is listening to you?

You say your MIL's youngest is likely to be given POA because they are better aligned. You (you individually) have been asked by the family to butt out of a conversation about MIL's welfare and care plan. What is your husband's view of all this? - because I think you're right, what you have to be concerned about is the possibility of being expected to rescue the situation further down the line. You need to be sure he will be as firm as you are in saying no.

I think you have a good idea. Finding a good placement with your MIL's cooperation is a good idea, assuming that she will cooperate. First, it is difficult to really put yourself in another person's place. Small things in facilities that can seem small to some may be nearly unbearable to others. In some ways no placement will ever be as good as the home that a person ruled for themselves for decades. When that choice is no longer an option, the best fit is going to be as unique as the individual.

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.

You are extremely intelligent and wise in what you are doing. It is an excellent way to handle these issues. And under no circumstances should you, or anyone, have someone in your home with mental issues - it causes hell for everyone taking care of them. Congratulations.

Moves to assisted living go better when the person who has to go there has some say in where they go. You will have to help her find a place. Try to find a place close enough to you that you can visit often, to make sure that her care is good and appropriate. I wanted to find a continuous care place for my mother so that she wouldn't have to move if her health declined. It turned out to be a good decision. She started in independent living and then went to memory care, and I just got a call today that she needs to go to skilled nursing where they have more equipment (lifts). Of course, my mother was happiest in independent living. It's not easy when health declines, nor is it easy to watch it happen to someone else. I went first to check out the place and asked them to show me each of the areas. I chose a town that had good public transportation and shops and activities, which she enjoyed while she was still in independent living. I also looked for staff and residents that were friendly, and a place that seemed well run, and residents who I thought my mother would like and find interesting. My mother's place allowed us to have dinner with some of the residents before deciding. After I found a place, I then took my mother there to see it. She was OK with it. She wanted to move to a place where she'd be able to have activities and meet people, and have help with meals and cleaning. Ideally we would have given her a choice of a couple of places, but we didn't have the time to look at more. Also look at the rating, if they have them in your state. I think it is best to encourage her to move while she can enjoy the independent living unit. The only down side is that she has to abide by their schedules for meals, etc. Good luck. And all the best.

It sounds like this question revolves around family expectations and communication. But I want to throw out something to consider from the point of view of the person with dementia. My husband was in the early/middle stage of dementia but with high cognitive functioning. He could hold a conversation with the best of us but would try to re-wire the house if a light bulb needed changing. I was the only caretaker, we had no family, friends or church members to help out. During Covid I realized that this was not safe. If anything happened to me, he would be in serious trouble. So..... one thing led to another, and he was placed in memory care 15 mins away. It's a wonderful facility and he gets excellent care. We talk every day and I visit often. The problem is that he's very self-aware and looks around at the other residents who are staring into space. It's depressing to him, and he insists that he does not belong in that "prison" with them. That's the downside of placing someone who is still highly functioning. I'm not saying it shouldn't be done and I still think it's what I needed to do because I could not deal safely with hubby on my own anymore. But it is something to consider. Will your MIL fit in if she's placed in memory care too early? This might not be such an issue in AL vs MC, but just thought it worth mentioning. If you do decide to place her, be sure there are other highly functioning residents she can talk to. Best of luck to you. This is tough.

Placing her when she is functional is a little premature.

Having discussions about what mom's resources will cover down the road...
The kinds of care she will need down the road...
What signs and symptoms that she needs placement...
Wise of you to think about those now.

Do it! Please do it for MIL’s sake.
Long story ahead. My late husband had dementia from a stroke so I knew some signs. I saw these signs with my Mum, (I was with her almost every day). My brother who rarely visited denied it, said his wife was a nurse and she said Mum was just doing little old lady forgetfulness.
I discovered Mum was being financially conned and my brother placed her in independent living (brother still in denial) even though I was asking for Assisted Living, after a while I see her meds piling up, so we get a nurse to swing by and make sure she takes them. It took me much too long to realize she no longer knew how to operate stove, microwave, kettle etc. She had been living on sandwiches, we set her up with lunch delivery and I started coming by every two nights to fix her supper or bring her some since she refused to go eat in the dining room. She did start to gain weight back. At this point brother appears sees lost weight and insists she goes to visit him for a month rather than insisting she go to the dining room. I begged him not to take her, that moves are very disruptive to old people. He still denied she had dementia so I was not able to tell him that.
Well I imagine I only heard the 1/2 of what went down at their home. She went crazy. Within two weeks they were arranging for her to move to Assisted living. It was too late, a month later she was in Memory Care.
All this to say, if she had gone to Assisted Living she would have been fed and cared for, and not allowed to lock herself away. She would have had the capability to make friends and get used to the activities while she could and probably would not have diminished so quickly.

I do understand that Medicaid will not cover much in her current stage, to my knowledge is one of the reasons many wait to pursue care correct? My MIL income in limited, and such a move would require her to sell her home, in which her family is hesitant to do. It is their family home.

I know this will be a massive point of contention, I have toyed around with the idea to offer to pay for her care only if she considers doing it now. This feels extremely manipulative on my part. I have also toyed around with the idea of downsizing our own home, I do not wish to go down that route if it can be avoided. I love our home and space it was one my wife and I designed together, I did the floor plan / landscaping and she handled the interior design from tile to furniture.

I am running into a wall, I have shown my wife stories of how families struggle. She is a half glass full type of person. That will not be us, we can make it work, my mother will not be as bad, my family will step up etc...

I will keep trying though and hopefully something budges, I am willing to pay my MIL care, we have done well enough for ourselves that we can do so without causing a massive financial burden. I not sure if we go down this route it would be unreasonable to name of POA since we will be handling the payment for her care. I know my MIL wants her youngest to be POA they are more align.

What is the best way to dispel the misconceptions around long term care and placement?

Your wife could spend some time reading on this forum the experiences of family caregivers who moved their parent into their home. There are a few happy stories that are vastly outweighed by trauma, burnout, strained or ruined relationships, resentment, and a feeling their lives are being sacrificed to the elder with dementia.

From the time my SIL married my husbands brother it was she handled her family, he handled his. You are an in-law. You already were asked to leave a conversation so they are not going to consider what you have to say. But, you will end up being effected by any decisions they make for Mom. Because of this, you and your wife need to be on the same page. If taking in MIL is not something you will be agreeable to, your wife needs to know this.

Those Communities that have IL, then AL and finally SN are expensive. The one near me years ago was 200k just to put down. The IL ands AL were still private pay. The 200k wasn't used until the person entered the NH part. AL and MCs are not covered by Medicaid in most States. So private pay.

Your wife needs to realize that Mom will decline as time goes on. To the point that she will no longer to be able to do for herself . Anyone taking her in will be responsible for her total care 24/7.

I agree, your wife's family should be planning ahead. Your MIL should not be living alone. Dementia has no ryhmn or reason to it.

So denial is a dangerous thing, really, b/c it serves no useful purpose. When a person is diagnosed with an illness/condition/disease, the best course of action is to absorb the information and plan a course of action rather than looking for second, third, fourth & fifth opinions on the matter, unless it's a cancer dx that brings a death sentence with it. A dementia dx is made after cognitive testing is undertaken by the elder; diagnostic testing doesn't lie, as a rule, the same way an MRI doesn't lie that a tumor is located on the left quadrant of a person's lung.

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.

Thank you for providing the extra information that MIL and family are in some denial. Knowing this, I would start having calm discussions with your spouse so that s/he understands that even if you have "room" in your home and are retired/available for all-day care, this is not an option for you and you don't need to sell your home or anything else. You stand your ground and keep making the case why it is not an option (loss of privacy, burnout, financially untenable, whatever). Technically "no" is sufficient of an answer for them but your spouse will be the issue, not the in-laws.

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!

At that first meeting, maybe schedule a second meeting.

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. 😀

Your spouse needs to be the one to convey to his or her family that MIL is not going to be living with you. You're the outsider, I'm afraid, so you don't get much of a say.

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.

My MIL and her family are in a bit of denial, they have gone to many doctors trying to get a second, third, and fourth opinion. Last time I brought this up I was kindly asked to leave conversation.

I get my what I am asking is jarring no one wants to think of what the end will look like. I am also afraid of what kind of fight me bringing up that I have no desire to have her live in our home when she gets worse. How exactly do you go about telling someone their family will not be able to stay with you? By no means are we rich, but we are well off, we have the means and space in our home. I know they will spin it as me being selfish, and will cause a massive fight.


My parents passed away when I was younger, so this is a fairly new experience for me.

See to it that it doesn't fall to you, unless your MIL places your husband as her sole POA.
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.

I think it's a great idea to start making plans now while your MIL can still be part of the decision-making process. 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. They have activities and things to do. You've got a great idea here and I see no good reason why the family would not be agreeable to it.
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.

It’s not a bad idea. If MIL is early in this she should have a voice in where she lives