My mom is 75, moderate staged ALZ, lives alone since May, does not want to leave her home. What to do?

Well, my mother lives in MC, she is very active, attends activities, goes on bus trips and has made new friends. She is 98, been there for almost 4 years and loves it, she is no longer isolated, she is independent.

My stepmother is in MC, declining at a rapid pace, yes, she has no independence as she does not have the mental capacity to care for herself. She is well cared for and independence means nothing to her.

I look at both situations the same way, it is no longer what they want, it is what they need.

Not making an informed decision is not the answer, that is why you are all anxious and stressed. Why not tour some facilities and see what actually goes on.

Don't super impose your analysis of what she is missing on her and if she has dementia her thoughts are not rational in the first place.

Good Luck!

You don't have to send your mother to a facility, of course. But the only other option is that one of you has to live with her. It sounds like you're considering the third option, just let her continue living on her own, but that's not going to be a choice much longer. So that's the choice you're looking at: one of you takes her in or lives in her house, or you start looking for facilities.

I do feel for you. 75 is so young. Too young. I know what you're going through is hard. Just take it one decision at a time.

First of all, does your mother own a home outright? Does she have assets? If so, she can afford ALF where her level of Alzheimer's is OK.

Are you her POA? If not, you have not much right to make any decisions for her, but do have a right not to intervene if you can live with the consequences of that.

Quite honestly, I can sympathize with your feelings, but at some point your mother is going to wander from her home and be lost. I mean completely lost. Wandering and alone. Is this the death you want for her, or are willing to risk for her? Or that she may set her home on fire and perish in the flames?

I couldn't agree with you more about the abysmal end those in MC suffer. And if you are willing to risk your mother's death in some other gruesome way I guess you are willing to risk it after weighing the alternatives. As dear Dr Laura says, not everything can be fixed and the fact that some of us suffer this end with loss upon loss and finally our own minds is a tragedy indeed. I understand your helplessness and distress.

I wonder, given your entire family's reticence to place your Mom, if all of you together have decided whether there is a way to move her into a family dwelling closeby. She would at least have a bit more oversite. I surely do wish you the best, and truly I sympathize with your feelings.

Here's the thing no one tells you about getting old, unless you are lucky most of us will lose everything as we age. It is not something most people talk about or even think about. But it is a reality for so many people.

It's heartbreaking because when you get to that point if your mind is still in tact you may wonder what the hell was the point in life at all just to end up like this at the end?

"Are we wrong for trying to respect her unequivocal desire to stay home?"

Yes you are wrong. This isn't about what a normal and competent person wants. Your mother has ALZ and what she wants and what she needs are two different things.

You need to find a facility for mom to go to. Your mother has an incurable disease and she is going to decline regardless of where she is living.

The only question is are you willing to wait another year or more and live with the anxiety, fear, and stress before having to be forced to place her in a facility?

And by then you will be so burnt out from it all that the love you have for your mother will be replaced by resentment because you didn't move her to a facility sooner. Get your sisters on board with moving mom into a facility sooner rather than later.

You have 2 choices - someone moves In with her or you Place her in a facility .

"I want to stay in my home" is not always the best option. For your Mom it isn't unless one of you lives with her. Or you get her 24/7 care on her dime.

Your Mom is going to get worse. Even with moderate ALZ she cannot be left alone. My nephew came home from work one day and Mom had put a pan of water on the stove and forgot about it. The pan burnt up. One of her favorites and it got trashed. Dementia patients wander and usually at night. Its against the law to lock Mom in her house, fire hazard. My Uncle was found walking down a nearby street at 1pm in the morning. My cousin had his own area at the back of the house and did not even hear my Uncle go out. Next day, he put safety measures in. He had already hired an aide for when he was working.

So no problem in allowing Mom to stay in her home if you are willing to sacrifice your life and time. My Aunt used to take my grandmom back to her house for dinner and to stay the night. Then, on the way to work, she dropped her back to her house for the day. With the three of you, you need to work something out if u want to keep Mom in her home. Because, ALZ is too unpredictable. You never know what they will do next.

No one wants to go into care and no one wants to put someone they love into a facility.

A person with dementia cannot live on their own anymore and that's it. The same as a child cannot live in their own. There can be arrangements made to possibly keep a person in their home, but they cannot safely stay alone.

Is a live-in caregiver/companion a possibility? Granted, your mother will probably refuse that as well, but the choices are limited to live-in help, a care facility, or she moves in with you or one of your siblings. I sure won't judge you if you say no to moving her in. I won't encourage that.

If your mother is resistent to homecare or moving then you will have to involve APS (Adult Protective Services). These people aren't monsters. You call them and explain what's going on. That she is resists care and moving in with you is not an option. After you speak with them, ask the police to make wellness checks on her and explain the situation to them. They will get her placed.

Whatever choice you and your family make will be a hard one. Your mother will be resistent to it.

I was an in-home caregibver for 25 years mostly to the elderly with some form of dementia or other. It's much easier on a family and the elder when they are placed before their dementia regresses them to an invalid state. When the person still has some of their facilties they can acclimate to life in a care home and even make some friends.

I agree with everyone in regards to the facility. My family had it all planned out behind my back not to place my mom in one, but that I would be the one to go and live with her. I do not, absolutely do not advocate doing this.
Presently, my aunt has someone coming in twice a week for one hour. She needs way more care than that. Cousins do not want to place her. I am all for it, but couldn't do it under my former POA docs.
Agree that if you all come together and say enough, you're going in, you can't be alone, then maybe she will come to terms with it.
It's not easy, but being left alone at home with little to no help is not the answer, and again, I do not recommend anyone go and live with her. Your lives will be ruined, and she may end up out living you all, if you do.

I’m sorry for your pain in this, it’s truly a heartbreaking experience. My only admonition is to consider memory care places one at a time and not lump them all into one negative category. Like anything else in life there are both the good and not good. Family involvement and advocacy often make a huge impact as well

If you are worried already about your only child having to care for you in your old age, plan now not to be a burden. Arrange your Will, POA, MPOA and funeral plans. It's never too early. Save money so that you'll be able to go to the assisted living place of your choice. You will have friends there, meals provided, transportation to doctors and activities, such as the ice cream shop with other residents, the Christmas parade downtown, shopping jaunts, movie trips, and so on. That's what assisted living and/or memory care is like. I have friends who live there. My mom lived in one for five years, and it was great.

Okay, so you want your mom to live at home. You don't want her to have any of the above. Instead she lives in her home, unsupervised sometimes, can't take care of herself and has little social contact. Alzheimers gets worse and it doesn't give you fair warning when she's about to wander, as my neighbor did in the middle of a cold fall night. She walked down the middle of her street naked. My friend's mom came out of her room stark naked and wearing her Depends on her head because she thought it was a hat. There were visitors present. My dad walked out of his house in the middle of the night, car keys in hand because he had to go to the office and work, he said. Another friend's husband put an egg on the stove to boil and left the house. Friend came home to a smelly mess and made sure he wasn't alone in the house again. One of my LOs got up and got dressed at 3:30 a.m. because he thought it was morning. Fortunately he was caught and told to put pajamas back on, it was still night. I once knew a lady who ate the potpourri. It was in a dish on the living room table, so it must have been food.

Most people don't get killed in memory care. Your stepfather might have declined at exactly the same rate if he hadn't been in a facility.

You and your sisters are the ones whose brains still function. Your mom's brain doesn't. Someone with dementia shouldn't dictate to you (plural). You are bound to keep her safe. She's lost everything? Well, not her life. She still has that. But if she sets her house on fire, or if she falls, breaks bones and dies alone, her death will be horrendously painful. In memory care, she probably dies peacefully in a bed with her three daughters gathered around. I'm very sorry, but this is how it is.

You choose.

Of course no one wants to leave their home. But if you can no longer maintain your home or care for yourself you really don't have a choice. It is not fair to expect others to tie themselves in knots to allow you to age in place. If you want to age in place then it is up to you to set up what is needed when the time comes and not expect others to just make it happen for you.

I worked for an elderly couple 3 evenings a week and the man suffered from Alzheimer's. His daughter was just like you.....full of reasons why her parents should live at home "aging in place" and control what they still could. Except they really couldn't. Why "waste" all their Hard Earned Money in Memory Care Assisted Living? I told her it was a big mistake to leave them alone for the majority of the time, especially overnight. She disagreed and wanted to respect their "unequivocal desire to stay home" in spite of the dangers of doing so.

One night Jim left the home at 2am or thereabouts bc he always insisted he lived down the block. He proceeded to fall in the street and hit his head on the pavement. He wasn't found for several hours when 911 was called. He'd suffered a subdural hematoma and died the next day in the hospital.

His funeral was very sad and I shed quite a few tears for him myself.

I had my mother placed in Memory Care Assisted Living for nearly 3 years and nobody killed her. Dementia did, ultimately, but she was beautifully cared for by "her girls" in the meantime.

As an only child with parents who made no plans for their old age, I got to manage their entire lives FOR THEM, which was nearly a full time and thankless job for me, let me tell you. I had total say over what happened to them in managed care, as their POA, and made all their decisions for them. As much as I had to do for them, at least I didn't live "in a constant state of stress and anxiety and heartbreak and sorrow and irritation and fear and uncertainty" because I knew they were well cared for, I saw to it myself firsthand. If there was something I didn't like, I spoke to the director about changing it. My folks were safe and I did my job.

One of my grandmothers had dementia in her late 70s back in the 1980s. Her oldest son had POA and his wife immediately decided to put her in a NH (the closest one). It was an old repurposed 1940s hospital. Just 2 hospital beds per room and a hard chair. No common areas, no couches, no activities. I don't even think they had a dining hall, they brought trays to the residents rooms. It was clearly not an appropriate placement. It broke my heart, and she lived into her 90s.

Fast forward to the late 1990s when my other grandmother got dementia. We felt like the OP. Living home was at best isolating and at worst dangerous, but we felt a NH would be worse (not knowing that memory care was an evolving concept). I was about 30 at the time and was making decisions that my mother should have been making.

Grandma neither wandered off nor burned up the stove. She was eating canned goods right out of the can. It was very sad. The deal breaker (which I’m learning here is the deal breaker in almost every situation) was toileting. She got sick and couldn’t get to the bathroom and started peeing into old bath towels and worse.

We (my husband and I) ended up calling 911, and then having her released from the hospital into a NH, which had a dementia unit. It was almost as bad as the old hospital. Much more nicely furnished, but they drugged her to the hilt, to where she couldn’t even speak a coherent sentence. She ended up having a stroke, and there was a class action lawsuit that found the new antipsychotic grandma was on caused strokes. (My mother didn’t participate in the lawsuit, which would have only required minimal information).

I know this isn’t helpful and I’m just getting it off my chest. I’m coming to realize that I have felt responsible for my elders since I was a kid. Many here have questioned my decision to care for mom in her home, and keep warning me that it will end badly. But my NH experiences have been pretty bad.

As far as “ice cream shop with other residents, the Christmas parade downtown, shopping jaunts, movie trips, and so on. That's what assisted living and/or memory care is like” I’ve never seen anything like that near me. I HAVE seen nicer facilities than my grandmothers experienced, but unfortunately my mom would probably end up in the same facility as my 2nd grandmother, because it’s close enough to visit often. But now that I’m much older, I would have a lot more say on how my mother is treated.

The most important thing is that you decide what is best for both of you. No one gets everything they want in life regardless of the circumstances. So, don’t lay a guilt trip on yourself.

Whenever others try to make me feel guilty about something. I tell them that I am comfortable with my decisions. No one else has the right to judge how you handle these matters.

Wishing you peace during this stressful period in your life.

You have already made the decision to keep her home “ until we absolutely have to “. It is up to you, your family and finances how to make sure your mom gets the care she needs whether you provide the care , hire caregivers to come to the home , or a facility.
Each of these choices have pros and cons .
(((Hugs)))

Your mother’s brain is broken. She cannot make decisions. You need to accept that.

It appears that for the immediate now, you have decided to keep her in her own home. That is perfectly okay. I hope someone is watching her to make sure she doesn't accidentally leave the stove on and burn down the house, or that she falls and no one is there to help her in a timely manner.

There is NOTHING that says that a dementia patient can not stay in their own home. As long as someone can safely stay in their own home and the POA agrees, great, let them do it.

In my case, I moved my mother because 1) I was getting burned out, short tempered and all around just being a mean, nasty human and 2) It was a sanitation issue (however, probably not as bad as it could be) 3) it was more cost effective for her to move into a managed care facility.

However, everyone is different.

If your Mom, and her POA are okay with keeping her in her home, GREAT, let her stay there.

As long as your mom can have 24/7/365 care from a person in her home - ALL THE TIME - she can live at home. Most families do not enlist enough help to cover the time and tasks needed. If you can get volunteers for most of the tasks and time, then you won't need to spend all her money - or yours - with paid sitters/help. This is why so many people go the skilled nursing facility/memory care facility route.

If you or your sisters haven't already, start with spending time and getting to know her immediate needs without pushing for control. Observe and do your research. After a considerable amount of "one on one time" to gain trust, open the conversation about long term plans. Negotiate after you have the trust. At least you will have your research for the next level.

It depends also on the ADL activities of daily living and what she can safely do for herself.

I started out with daily private caregivers until bedtime for mom & aunt. We used a combination of agency sitters & private ones. Then we moved to include more time with sitters when aunt needed an overnight person. Mom eventually had to move to a nursing home but passed within the week.

There is no perfect solution but customize to mom's needs. Maybe between you 3 sisters some time could be filled in. My one sister and I had one half day each & if a sitter called out often we had to cover.

In both homes we did install camera monitors for the night. We also used a lock box with a code for the doors. Sitters could then come and go.

Its a very hard journey to jeep them safe and well cared for. Do not beat yourself up and remember you are doing the best you can. You need to care for yourself.

This is another of what one might call a " both/ and" situation. Both wanting safety for your mother and, wanting to honor her dignity and desire to be in her home".
Both, recognizing the tragedy of her disease / and, simultaneously recognizing that there is no 100 percent perfect decision for her care.
I hope that one of you have officially been assigned as POA to make decisions for her when the family is ready. I hope that what decisions you make, that you will affirm one another as siblings so that if, God forbid, something unforseen happens to her in whatever care setting you choose, you will all be able to be at peace and not second guess yourself.
Ask yourselves quality of life questions both for your mother and the family ? Ask yourselves if you, as a family, have the ability and fortitude to get a schedule among the family to rotate being in the home with her 24/7; because if you decide to keep her in her home, this WILL BE NEEDED, along with the clinical services help you can have with hospice care in the home. You may want to have her assessed now by hospice for hospice admit appropriatness; then you can decide if you want to go ahead and start that. Hospice care in the home, with family or someone else also in the house 24/7 with her may allow you to keep her in her home if that is your goal. Hospice being on board with her care can also provide great resources help to the family on this gruelling path and, hospice can provide you with " respite" care for her so that the family can have a break. Hospice can also guide you re placement if you reach that point. Talk with a hospice of your choice , speak with the Clinical Supervisor and go from there.
You may glean support also from a " Geriatric Case Manager" and/ or from an Elder Law Attorney.
Practice good self care! You'll need it !

"Against her will" and "unable to make healthy decisions" are really very ambiguous. I am the legal guardian for my stepmother. As she began to decline, we hired in-home care for her. This worked for several months, however, the aide had to resign for personal reasons. We picked up the slack for 6 weeks while trying to find a replacement- in 4 weeks, she fired 3 more aides. Was that a good decision? No. Could I stop her? No. It is still her house and she doesn't need to let people in- legally. As we watched her decline, we made arrangements for her to go to a very nice memory care unit "while we made some renovations to the home to accommodate her possible future needs". She agreed to this, made a wish list and met with the architect. Yet the day we "attempted" to move her to her apartment, she refused to stay, threatened to call 911 and report she was being held captive and threatened to walk out. We couldn't stop her from that (it was not a lock down facility). Even tough I had the "power" to make her stay, that really meant nothing.

Everyone wants to stay in their home but sometimes it’s just not safe to do so.

My mom with dementia fell 7 times in a matter of 8 months & that was with a live in caregiver. She fractured many bones during that time.

She suffered more at home than she would have in a memory care unit.

You are absolutely CORRECT to respect her wishes! You are also right about what happens in these homes. They killed my sister during the lockdowns. They removed all food and water without telling us until she died several days later of dehydration (a horrible way to die).

Please look into home care for her. We have a program here called IRIS. There are programs in every state to help. This one does require that the they be on medicaid, but they do pay for caregivers (including family). They also will help with any modifications to the home and any activities not covered by insurance.

I'm so glad you realize the dangers in these facilities that neglect and abuse people. You are doing what is right! God Bless You!

Dear Friend,

So much of our post and question(s) resonate with me. 

Let me start out by saying that my Mom and I lived together for 15 years and I was her full time caregiver for the last 4 years of her life. 

Several years ago when I was out for the evening leaving her alone (and my mom had already started to decline), she wanted to make a cup of coffee. So, she took the electric coffee pot and put it on the stove to boil water. When the plastic started burning and was smoking, thank god she turned the stove off. When I came home hours later and walked in to the intense smell of burnt plastic, I thanked god that nothing worse had happened. After that experience, I never left her out of my site. 

Is it possible for you and your sisters to coordinate a schedule in which each of you will take turns and stay with your mom for a couple of days per week. I’m sure you have families and jobs, but perhaps this is one option. 

Is it possible for you to hire full time care so that your mom can stay in her home? Maybe in the beginning, you and your sisters could help to ease in a full time caregiver so that your mom becomes used to the situation. 

Finally, I’d like to know if you and/or your sisters have or share the health (and perhaps the financial) Power of Attorney. At some point, whatever you decide, you will need to demonstrate that you have the authority to make medical decisions for your mother. 

I know there are many complex dynamics involved here and so my suggestions are only simple ideas .

kstay10: If you do not amend your mother's living situation, you and each of your two sisters' health could be in peril from "living in a constant state of stress ......" An individual with Alzheimer's should NEVER live alone. They have lost the ability to decide that. Her control has left the building and quite likely, she literally could also if she starts wandering, a bad habit of individuals with Alzheimer's.

Every time I read an account like this I remember a family whose elderly (late-80s) mother lived alone "in her own home" (one of the apartments in a building we owned). One morning I got a call that there had been a fire in that apartment and the tenant had died. I immediately drove the hour or so to the building where I met the son (in his mid-60s) who was beyond distraught, telling me that she was making breakfast using the stove and caught her nightgown on fire which then spread to the apartment itself. The family knew she hadn't really been safe alone but also wanted to respect her wishes. They had begun looking for care facilities but weren't able to agree among themselves on any. So they'd put off and put off any kind of move. And now they'd lost their mom in a horrible way and were blaming themselves and each other for procrastinating. I hope you and your sisters can make the hard decision(s) for the sake of her safety and your own mental health.

With my BIL we did this for him because he wanted to remain in his apartment. We put RING cameras in the kitchen/dining room and one in his bedroom. We could talk to him and watch him. We had to unplug the electric stove because he burnt something and left it on for 24 hours. We made the microwave his best friend. I would buy dinners that he could put in the microwave. We also brought food in for him. He has dementia and in the end we had to call him for meals and for taking his medications.

That all ended when he fell outside of his apartment and laid on the ground for 30 minutes his neighbor found him that is when all of us decided that he needed to be in memory care at a NH which he is still there. We made his room just like his living room at the apartment it has his recliner, hats on the closet doors, his tv and his bedding on the bed there. At first he wanted to go home but with his short term memory gone he is in the best place for him and its safe.

Not all NH's are what you watched ours where he is take very good care of him.

You will have to decide when and when you do take tours of the places around you that is what we did.

Best of luck with your mother and prayers

Each LO’s situation has to be looked at individually . There will always be horror stories no matter whether someone stays in the home or they are placed. You have to decide what the better solution is at any given time .

When my mother was confused , not bathing , throwing out the meals I gave her and living on cookies, and put the wrong lightbulb in a fixture causing a small fire, and refused any help from me and refused any strangers in the house , I knew she could not stay at home any longer . She had refused to tour assisted living places .

I picked out an assisted living facility and had the County area Agency of Aging come out to facilitate placement to the place I had chosen .

Once in AL she did better , she ate better , took her meds , made some friends . She didn’t love it but finally admitted she had to be there . And yes Mom did have a few falls in AL . It can not be prevented . Old people fall no matter where they are .

And yes, there is no magic bullet . And perhaps your stepfather was going to decline no matter where he was .
Hopefully one of your Mom’s children is POA. I can appreciate the stress you are all feeling having been there with more than one LO.

Please remember that your mother can no longer make sound rational decisions no matter what her desires are . Now decisions are made due to what she needs , not what she wants .

I also have the same hard decision that you have before you. I am the only child left and live 600 miles away. I know my mom wants to stay in her home but she just can't. The Dr said she need 24 hour supervision. She thinks she is fine. I am looking at ALF near me so I can be there for her. I can't think of moving my mom against her wishes and hoped that she would say OK. She doesn't bath but said she washed up . When I come there are no towels dirty and the dryer hasn't been used for 4 months. It still has the sheets and towels that I washed in July. The food in the fridge is from the last time we were there. She does get MOW but doesn't eat most of them
I just have to make changes because it is affection my health and I can't sleep. She also had ALZ and is 88 .She can't make decisions for her self. It is very hard to be put in that decision . I know it will be hard but be the adult and make sure she is safe.