Hi there,

I'm new to the forum and would appreciate any advice on how to best help my mom. She is 82, a widow, and living alone in a two-story older home. She's still driving and has a circle of friends she sees regularly, but she's also very lonely and spends a lot of her day alone at home. My brother lives in the same city and helps as much as she will allow; I live in another province but call home almost every day and fly back a few times a year.

The problem is, although mom is now experiencing some mild cognitive decline and hearing loss (also mild), she doesn't want any help, or believe she needs any help. She also refuses to plan for the future and doesn't want to discuss it. For example, the main bathroom is badly in need of a renovations and she's taking sponge baths because she can't easily navigate the tub/shower. She also can't manage cleaning such a large house, and as a result when I visited over the recent holidays, there were layers of dust everywhere, expired food in the fridge, and the floors haven't been washed in some time. She's very independent and wants to stay in own home, so conversations about moving to a seniors complex or assisted living are always rejected. She has the money to renovate and hire people to come in and help with cleaning, cooking and eventually with nursing care if needed, but she won't do that. Yesterday over the phone, I suggested a company that specializes in in-home care for seniors, that can provide housekeeping services. She was open to the idea until I offered to call and set up the initial consultation, then she got angry and shut the conversation down. She gets equally angry/offended when I bring up her hearing loss, or her driving - which has deteriorated markedly in the past year or so. She seems to equate aging with failure, so any attempts to talk with her about changes in her health are taken as criticism.

My dad died of dementia in March of 2021 after a long illness, and I was hopeful that she would eventually be able to bounce back and be able to enjoy life again. She was a wonderful and caring mom, who gave so much (maybe too much) to everyone else in her family - now we'd like to be able to help her and give back, but she just refuses to see/accept that she needs any help. I've been trying for a few years to gently and considerately suggest some practical changes that would help, as well as encouraging her to get back into a hobby, or other ways to get more social/emotional support. But she is becoming increasingly resistant to change of any kind.

The burden on me has been intense for a long time - I helped her navigate through both my dad's illness and then his death, and she expects/looks forward to a phone call almost daily from me. At the same time, I have a husband and two children, one teen and one in university, plus a career (oh yeah, and two dogs and a cat). My husband's mom died of cancer a few years ago and recently his dad had surgery to remove cancer that had recurred. Managing/balancing all of this has become overwhelming at times - and while perhaps my mom thinks her independence is helpful, it's adding so much stress to my life as well as hers.

Sorry for the long rant, but if anyone has been in a similar situation and has advice, I'd really appreciate it! I can't force her to accept help, but I'm also becoming more worried about her safety, and potentially (if her driving gets worse) the safety of others. Not sure at this point what to do next!

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I feel your pain. I have grappled with how to care for my father (almost 82) as he travels through dementia and won’t accept any help. He likes it when his girlfriend is there a couple days a week, and he has friends who check on him. He gets mad when people leave him alone, but also won’t admit/accept that he NEEDS someone there. This says to me he knows that he is sick (what he calls his current state), but it’s not his personality to give in and work with us to arrange in home care. He will never accept it. I live far away so manage what I can from the opposite coast. He won’t entertain the idea of leaving his home to go into care or allowing a caregiver in and I can’t deal with how upset and angry he gets (he’s a screamer) when confronted with his limitations. It crosses over into abusive and I’m just not going to live like that. So….like so many here I wait for the other shoe to drop. And it will eventually drop. An event that will trigger placement. Either he gets picked up for driving without a license (we can’t keep him out of his car and the DMV pulled his license because of his dx), or someone calls APS on him for the screaming which you can hear down the block, or he has some medical event which lands him in the hospital. Then I can work with them to get him placed because he can’t go home as he lives alone. I have toured MC facilities and picked out one so far that I really like if the time comes.

I read a lot on this forum people saying that safety supersedes freedom and that it’s our duty to place them so they are safe. I think about this a lot. Is it? Is dying in your own home from a fall or stroke or infection or anything really, REALLY worse than dying slowly over years without your marbles or physical abilities in a facility? Only you can answer that question for yourself.

You are doing what you can, and sometimes you have to accept that is all you can do and cut yourself some slack. This is a horrible disease that nobody is prepared to deal with. Find your way day by day and just do what you can. That’s all anybody can ask for and we should all be lucky as we age that we have someone willing to look after us in any capacity.
Helpful Answer (9)
Reply to Caregiverstress
97yroldmom Jan 25, 2023
You might enjoy reading “Being Mortal, Medicine and What Matters in the End” by Atul Gawande. Here is one of my favorite quotes from him.

“We want autonomy for ourselves and safety for those we love. That remains the main problem and paradox for the frail. Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self.”
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What bothers me is that your mom is still driving, with dementia, which is a hazardous thing to others besides herself. And the expired food in the fridge which indicates she's further along with the dementia than you realize and unable to properly care for herself. The bathroom being in disrepair and her rigid refusal to get help or do in home repairs/get help is the typical response for elders with dementia, unfortunately.

Can your brother get involved to try to convince mom to get the house in better repair, to stop driving, to move into managed care or senior living of some kind? If not, you'll have to likely wait for a crisis to occur which FORCES her out of her home and into managed care by the doctors at the hospital. This often happens with cases such as your mom's. It really is unfortunate that elders are so stubborn they wind up having their choices taken away from them, ultimately! Had they made a wise choice to begin with, such things wouldn't happen where they're forced into managed care one day after a crisis. But that's the way it often goes, unfortunately.

Perhaps you and your brother can put your heads together and come up with a plan of action to get mom's house fixed up/cleaned up, and her car disabled so she can't drive. Maybe then she'd be more agreeable to moving into Assisted Living if she has no reliable transportation. I'm all for using whatever means are required to disable elder's cars who are driving with dementia at play.

Wishing you the best of luck with a very difficult situation.
Helpful Answer (7)
Reply to lealonnie1
Chessie6620715 Jan 12, 2023
Thanks and yes, the driving bothers me too and that's something we need to address quickly. I feel her driving is borderline right now, but I the reality is it's unlikely to get better.

We are working on a plan to renovate and bring in care as needed, the tricky part is getting her to accept it before there's a crisis. Having been through dementia with my dad, I am very aware of how this could progress, but I want her to be able to stay in her own home for as long as possible. I also don't want to force her unless it's absolutely necessary.
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My uncle was exactly your mom. He lived alone. He owned a large two story home on the East coast.

He could no longer go up and down the stairs, so he was living in his basement, also taking sponge baths like your mom is doing, and got a UTI and sepsis. He nearly died.

That is when my cousins forced him to go into a facility. My cousins refused to continue to care for him. It was too difficult for them to take off of work and tend to all of his needs.

My uncle adjusted to being in a facility and his children visited him without the responsibility and stress of being his hands on caregivers.

Your mom really should make plans for her future. She has more years behind her than ahead of her. How much time does she think she has left to plan? She should start looking now because some places have wait lists.

Wishing you and your family all the best.
Helpful Answer (7)
Reply to NeedHelpWithMom

Sometimes “wants to stay in her own home” is superseded by “mom’s safety and welfare are now more important than what she wants”.

At some point, whether soon or farther into the future, whoever is the responsible party will be obligated to “force her”.

Most of us here have experienced being in that painful but necessary situation. I certainly was. Ultimately my feisty LO began to experience falls and grew frightened living in her old, difficult to navigate home.

It was as painful to those of us who loved her as it was for her, but we had to take charge.

She entered a very pleasant AL, but after a rocky and unsatisfactory adjustment period we were all convinced that she really needed to be in the step up memory care unit, and she did well there until her first COVID infection.

This process is not easy for anyone involved, ever. It is overwhelming at best.

No easy answers, but lots of us who understand.
Helpful Answer (6)
Reply to AnnReid
Chessie6620715 Jan 12, 2023
Thanks, it's nice just to talk with people who understand, even if there's no easy answers. Appreciate the support :)
I understand your brother lives nearest to Mom. Have you had a sit down with him to discuss how to best protect Mom in this in-between time? Are all the things in place for one of you to take on either POA or guardianship if Mom fails? The legal papers, whatever they are in Canada?
As far as "she looks on it as failure", in a very real sense that's exactly what it is. I am 80 and I know that. Failure of muscles, balance, mind, abilities that are inexhorably happening day by day; and having the history of your Dad she knows what that means. And using denial NOT to know it.
Clearly she is not downsizing and that means she has been a long time in denial. She has not moved, downsized, and made plans. This leaves it to you and your brother OR NOT.
We have had forum members who tried and tried and tried to get their elders to accept some kind of help, eventually some move, and because the senior was not diagnosed as not competent to manage their own affairs the kids were helpless. I remember one woman in particular who always updated us and whose Mom did, yes, eventually collapse and die on the floor at home. Without a diagnose you can suggest, and no more.
Eventually this will come to a head. There will be a fall, a collapse of some kind, and a hospitalization if your Mom doesn't die at home. That is the time to call in the troops for social services to force assessment and to get emergency guardianship if needed. Once you have that, you can do placement if Mom is no longer competent to make her own decisions. However, if you are not living where she is that would be impossible to manage. Would your brother do it? Is he willing. It is a massive undertaking and I would never do it for an unwilling uncooperative elder as I did it for one totally downsized, totally cooperative, totally willing (in fact ASKING ME to take over all finances), and it was still very hard work.
This is a dilemma. Some elders wish to die in their home and they force this to be the case no matter WHAT you and your Country attempt to do to intervene. If that is the case there is little you can do other than the sibling who DOES live there to check, and the one who does not to make daily calls with agreement with Mom that she will answer a daily call.
So sorry. Wish I had better ideas or news and hope that others do, and I welcome you to Forum.
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Reply to AlvaDeer
Chessie6620715 Jan 12, 2023
Thanks very much. Yes, my brother and I have have been talking about how to handle it. He is able to actually do many of the repairs himself and/or hire contractors, and my mom has agreed that the house needs some repairs, but she hasn't initiated having anything done.

I do have POA but not guardianship, and so far she stills seems to be able to manage her finances and still enjoys doing that. She definitely has been in denial for some time about her physical decline, and I also think the grief over losing my dad caused some depression. I do know her family doctor (he was my doctor when I lived there), so I'm thinking about calling him to see if he will have her come in for a check up. Perhaps a diagnosis from her physician will help her accept reality.

I agree that eventually things will come to a head, I'm just hoping and I can convince her to accept our help while the decline is still mild and before there is a fall or worse. I'm not expecting any magic solutions, but talking about it is definitely helpful.
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I also feel your pain, as bringing in home help for my Mom is what I had planned to do early this month. Well, she had a fall in their home & it took her out, day after Christmas. Our F & F tell me repeatedly to not blame myself, but it is hard to not feel some guilt.
BUT, my Mom was as yours: VERY resistant to accepting in help or her old Housekeeper (who stopped when Covid hit). She got used to my 2-3 visits per month (2 hrs drive each way) and my evening phone calls. She was VERYYY bored but even more resistant.
I had emailed her Doctor more than 5 times to check in/to ask if my approach was the right one. She continued to validate that I couldn't force her. And told me my Mom would be kicked out of any AL type of living situation.
I thought I might interview "with her" part time Caregivers/Companions after her supposed (she passed before this) Jan 4th appt. My Mom was sedentary & extremely negative.. Her body appears to have locked up & the fall ensued. You might tell this story to your Mom..
EVERY idea I ever had was met with a "NOOOOOO!" & criticisms/cussing...
I was in the same boat as you. I did trash-dishes-watering of plants & errands with her each visit, but she needed more help. No way in HELL was I going to move in or vice versa. She knew I had career & grown Kids that lived near to me...
She was terrified of accepting in strangers, as a result of not being a neighborly type & not having friendships..
Maybe your next visit up you can have a few people come around for a quick interview? Maybe their 1st time there for a few hours you can be there?
Sure is frustrating. I feel your pain...
I feel it was manipulative on my Mom's part. She figured if she kept resisting, ultimately she would get her way & I would move in with her. It would have destroyed me on all levels.. It didn't play out this way....
Now I spend every week up there purging: what to trash-donate-keep...
Helpful Answer (3)
Reply to eat-pray-love
Nancita Jan 25, 2023
Wow! I am living your experience. 93 year old mother who will not look at an independent living community near me, two adult grands, and 1 great granddaughter. The community will offer all the help she may need in the future and has fitness programs that will improve her balance and keep her from falling or worse. My husband and I live 3 hours away and were driving to her town every other week to take her to grocery store, appointments, etc. It was incredibly stressful as he still works full time. We told her to find someone to take her to errands and appointments. We now only visit once a month. It has reduced my stress but increased my guilt. I can imagine how you feel but after reading your story I clearly see that you should not feel guilty. I should not either. We have done all that our parents will/would allow. The rest is/was under their control. We can only let them know that we love them and care.
Might want to open all conversations with her this way, "I want to help you stay as independent as possible and in your own home for as long as possible..." Let her know that hearing aides - if recommended by a hearing specialist - will help her to continue driving longer. Same goes to vision tests and glasses. If she gets to the point that driving is not a good option, make sure to have several transportation options for her - include names and contact info - so that transitioning will be easier for her. Let her know that having a housekeeper come weekly is a great help to everybody who has a busy life - so she can continue to connect with her friends and make it nice so they can come visit her as well. Let her know that if she doesn't allow home repairs to be completed, the county/province might end up condemning the home. Then, she will lose her home and any potential income from a sale if she decides to downsize. Always try to get change to happen from the point of view of all she can gain from the change and how it improves to maintains her dignity.
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Reply to Taarna

As others have said, her abilities are probably much lower than you think, but she is able to present the appearance of basic competence as long she sticks to her routines. Ask her how old she was 20 years ago, and be prepared for the sad reality that she can't figure it out.
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Reply to Beekee

I don't have a full answer. Getting someone to wear hearing aids is very difficult because a) they don't know what they are not hearing b) the time and patience that it takes to adjust to them. I am wearing hearing aids because I want to wear hearing aids, however, I am still not happy with them as I cannot hear music or conversations as well as I expect to. So, I am not a good person to ask.

...and just because it has happened, make sure that her lack of hearing is not due to excessive ear wax.

About house cleaning: Is she one of those people who is very picky about who comes into their house? How often do you see her? How about if you give her a gift of 2 hours of house cleaning a month for a year. I would start with just dusting, and cleaning the floors and doing bathrooms. Unless your Mom is okay with the housekeeper doing the dishes, I would NOT have the housekeeper do anything in the kitchen except the floors. I think it is important at this first "toe-dip", for the housecleaner not to do too much. You are trying to gain trust to allow a stranger to come into the house, but not do so much that it seems invasive. If your Mom is unable to find things after the housekeeper is there, it will ALWAYS be blamed on the housekeeper. I would have you or your brother (or his wife, if your Mom likes his wife) be in the house with your Mom while the housekeeper is there. Your Mom is going to feel threatened and it is very helpful if you or your brother was there to act as a go-between.

After she gets used to it, then the house keeper can work on the kitchen, not the refrigerator, but just cleaning the sink, the microwave, the stove and the countertops (floors were done earlier). Small baby steps.

I personally have issues with someone else going through my refrigerator and throwing things out. Therefore, unless your Mom seems willing, I would not have the housekeeper do that, unless it is under your Mom's guidance and even then, that would be risky because your Mom may not remember that she told the housekeeper to toss something.

Laundry is also very personal. My Mom didn't want anyone touching her undergarments.

My Mom was convinced that her house was clean enough that she only needed the housekeeper once a month. In fact, she would pay for 2 hours and only allow the housekeeper to do a little over 1 hour of work, insisting that that was all that was needed. Slowly, my Mom would save the difficult stuff for the housekeeper (e.g. changing the sheets on the bed), but never the laundry. The housekeeper never stayed longer than 1.5 hours, but she was paid for 2 hours.

Even when my Mom became incontinent, my Mom couldn't understand why she needed a housekeeper every week. My sister struck up a deal where my Mom would pay for once a month and my sister would pay for the other weeks of the month.

If your Mom is like my Mom, she didn't want any in-home care. She was worried that they might steal from her and she would not be able to protect herself. Unless you see in-home care happening soon, I would just try to get a housekeeper in. Her friends probably already have a housekeeper so that idea would not be too foreign to her.

Baby toe at a time.

About the renovations: How about if you/your brother give her gift of renovation. For instance, the first step would be to install grab bars. The gift would be actually finding and hiring and scheduling someone to do these things. For your Mom, just the act of finding someone can be an overwhelming task, hence, it doesn't get done.
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Reply to ChoppedLiver

Tell her the smart way to remain independent is to hire a company who will provide a person to do the things she doesn’t like to do, or can’t do easily like changing her sheets (I hear this a lot from potential new clients). That will leave her time to do the things she likes best.
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Reply to BuffyRoberts

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