Wants to be Left Alone

ma1038a

My 75-year-old mom was diagnosed with mild cognitive impairment consistent with Alzheimer's about two years ago. I live six hours away and have two young kids (1 and 4), so I can't be there to keep an eye on her aside from brief visits once or twice a year surrounding doctor's appointments. My sister is estranged and my Aunt helps me but follows my lead. We have largely normal phone conversations, but her memory is gradually getting worse -- for example, I told her it would be too difficult to drive down with the whole family, and the next time we spoke she was expecting my whole family to come that week. She sometimes avoids saying my kids' names and forgot about the younger one's first birthday.

Some context: My mom lives alone in the three-story house I grew up in. She has no family nearby. She hasn't worked since 1988, divorced in the mid-90s, and never remarried. She has lived alone since I moved out (2005). She used to fill some of her time with volunteer work and visiting friends. Now, she does neither, and the only friend she kept in touch with recently moved across the country. She has no family nearby. She seems to fill her time by reading the newspaper, watching TV, and running errands (probably more than she needs to). She doesn't use a computer or smartphone and doesn't like to use the flip phone I got her for emergencies. The only person who sees her regularly is her housekeeper, who has agreed to notify me if there are any major concerns. But she is HAPPY with that routine.

She seems perfectly capable of dressing herself, cooking, and driving to run errands in her immediate neighborhood, so I don't think she needs an immediate change. But I have several concerns, including (1) she doesn't take care of the house, like fixing plumbing problems or letting me replace her broken clothes dryer, (2) she hardly gets any social interaction or exercise, which is bad for her mental health, (3) she can't keep up with things like servicing her car and renewing her driver's license, (4) she has bad osteoporosis and would be helpless in the event of a fall, and (5) she can't find her will or remember who drafted it. Her PCP keeps urging her to move closer to family, and a dementia specialist said she at least needs to hire someone to spend a couple hours twice a week. I made a plan and she refused. I did get power of attorney at least.

When I when I bring up topics like remembering her doctor's appointments and following their recommendations she gets annoyed and pushes me off the phone. We've talked about moving either to a smaller place closer to me or to an independent living facility. She says she's open to it but it's not a good time to start planning. I doubt she'll ever be willing to move.

My dilemma: Her desire to be left alone predated her cognitive impairment, so I want to respect it. I feel like I can't do much more given my family situation. It seems inevitable that there will come a time when I'll need to escalate and move her out of the house, but how long do I let this go on? Do I wait for a sign that she's in immediate physical danger? An injury? Car accident? And then do I literally drag her out kicking and screaming?

If anyone has dealt with a similar situation, I'd appreciate any advice.

M1

Welcome to the forum Michael, though sorry for your need for it.

Sounds like you are right to be concerned. She is a safety risk in a number of areas, including the driving and living alone, period. If she has a dementia diagnosis on the books, a traffic accident could cost her--and you, potentially, since you hold POA--everything you have. If you are asking the question of when do you need to act, you are probably answering your own question--you need to do it now.

I said on an earlier thread this week that when you hold POA, you really have an obligation to act in her best interest, and to not use it when you have it is a failure of duty. I don't mean that critically, but it is a hard thing to get your head around. You cannot expect her buy-in, ever, and you just have to accept that she is going to be angry with you. You expect this from your toddlers, but it is very hard to reverse the roles when she is the parent and you are used to deferring to her. But really, the choices need to be yours, not hers at this point.

We all get adept at telling "fiblets" or "white lies" or whatever you want to call them to work around our loved ones' inabilty to perceive their deficits (there's a name for that btw, it's called anosognosia. They think they are fine). You may need to tell her you've discovered the house needs major repairs, radon leak, etc. etc. and tell her she's coming for a visit near you while the work is done and you've found a great place for her to stay. Whatever it takes. But no, you should not wait for a crisis. I'm sorry you're facing this, it's never easy. I had to hospitalize my partner and put her in memory care last year when our doctor told me I simply could not care for her at home any more, so I know how hard this is. But safety has to drive the decision-making.

jfkoc

I remember several posters who had success moving a parent by telling them that they were missed and that their help with the grandchildren would be very welcome.

ma1038a

Thanks. To both. Believe me, I’ve tried the grandkid angle. Even picked out a nice condo for her around the corner from me. Not interested.

I agree that driving is the biggest concern, but the problem is that I don’t have any evidence that she’s a bad driver. Just suspicions/assumptions. I’d find out if she was in an accident because she probably wouldn’t get the car fixed.

Driving aside, I think she’s the kind of person who would rather live one more year independently than ten more years in a facility. That’s not the disease, that’s just her.

[Deleted User]

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M1

I don't know where I got Michael out of your screenname, sorry---just wanted to add that my partner is the same way as your mother, hates being in an institutional setting and used to beg me to just take her out and shoot her. But that still didn't make it okay to leave things like they were.

Another option, hard as it is, would be to go stay with her for a few days to a week so you can really see how she's functioning. Look in the fridge, look at the bills, see what the housekeeper says face to face. How is she cleaning clothes if the dryer is broken? Is she bathing? Could she get scammed on the telephone? my Landline is notoriously bad for that. Talk to the neighbors. You don't want someone to call adult protective services.

Quilting brings calm

If the people there - the PCP and the dementia specialist are advising you that she should not live alone…. Then she should not live alone.

My journey into this nightmare started with my parents being 12 hours away from me. So, like you, I was relying on ‘normal’ phone conversations. I noticed some minor confusion - had to have the bank balance her checkbook- etc. I made a trip down there because she was confused and couldn’t follow conversations. Her doctor blamed it on going off her pain meds cold turkey ( actually it turned out she had had a mini-stroke )

I continued thinking she was ok, just having senior moments, right up until a disaster struck and she seemingly fell off a cliff cognitively. The doctors there just shrugged their shoulders and were no help. We moved my parents on an emergency basis back to my state. I and everyone else thought she needed to go straight to an actual nursing home, bypassing the lesser forms of care. That’s how bad she was. Treatment for a UTI that had turned septic brought her back enough to go to assisted living.

My point is that you cannot determine her fitness from a distance. At the very least, you need a geriatric care manager to stand in your absence. Otherwise - you are going to be where I was. Trying to get her halfway across the country with a weeks notice, when she is totally out of her head, can barely walk or go to the bathroom on her own like I had too.

mommyandme (m&m)

When my brother and I, long distance caregiving at the time, got the doctor’s notice that she needed 24/7 care moving forward, we weren’t ready. We had caregivers with her daily for 8 hours, two 4 hour shifts at the time. The neurologist saw my distraught look and told me that while we got things set up, cameras could be installed as 24 hour supervision to start. I was the one in town visiting then and I didn’t hesitate getting those cameras in. They were fantastic. Used them for 4+ years, until she died, even when I was her primary 24/7 caregiver.

Long story short, cameras could be helpful to you and yours as you get things organized and beyond.

harshedbuzz

Hi and welcome.

I am sorry for your reason to be here but happy you found this place.

This is a difficult situation. You've gotten some excellent advice from some people who have BTDT.

There are a lot of moving pieces here. You need to balance respecting that woman she was with the situation in which she finds herself and the obligations you accepted as her POA which expose you to risks if she were to have an accident (even if not her fault) or if APS were called in by a concerned neighbor or physician.

One of hard parts to this is that she could be OK where she is until she isn't. You might not get a warning from her, the housekeeper (if mom's an easy gig and the one paying her salary, dropping a dime might not be in her best interests) or aunt before something catastrophic occurs. PWD can wander, get lost driving sometimes being found having run out of gas in another state, start fires by leaving things on the stove, etc.

A pair of sisters local to me wished to honor mom's wish to stay in her own home. They thought they had things covered. The RN DD got mom ready for the day-- did meds, breakfast, left a plated lunch in the fridge, and made sure mom was dressed before she went to her 11-7 shift. The teacher DD picked mom up around 3pm and took her home for dinner and TV before dropping mom off just before evening pills and bedtime. They split weekends and appointments. And it worked really well. Until one night it didn't. Sometime after the teacher left, mom started the shower and then headed outside for some reason. Her naked body was found dusted in snow the next morning by a neighbor walking his dog.

I would find a way to either get her into a MCF ideally near you.

HB

ma1038a

Thank you all for the good advice. I'm ready to get the ball rolling, but would love to hear from anyone who has successfully moved a parent against their will while they were still living independently / before there was an immediate need to do so. Since it's hard to pull off, and caregivers understandably might wait too long, it seems like there are more horror stories than success stories.

tbranchaw

My parents were living together independently when we moved them into memory care-together. They had definitely been in early stages of dementia, but were not in imminent danger, although there were more and more "potentially dangerous" situations that were arising. The retirement facility they were a part of intervened and actually required of us to get them extra personal help ($$$) or move them into memory care-it was in the contract for their safety and the safety of other residents. It ended up being a necessity that we move them in because they were calling my brother many times a day for assistance with things (like-more wine, a certain chicken salad, the tv isn't "working" again, etc) and he was juggling a family of 4 with 2 special needs kids and a demanding job. It was still a horrible experience -I'll spare the details for another time-but I know it was the only decision we could make for their safety and our sanity (I live 3 hours away and my brother is local to them). I live with guilt and the "what-ifs" all the time, but I know it was our only option. My dad passed away 9 months later from a stroke and now my mom is there alone. She complains constantly and asks how we could put her in a "place like this", even though it is a wonderful facility. But her dementia is far more advanced now and it would have been really difficult to move her there now. At the end of the day, there is no perfect answer and you have to weigh the pros and cons both of the present and the future. You probably won't feel good about either decision, but you are doing what is safest for her in the long run. There will be guilt whether you are near or far, but consider your future as well and what she would have wanted for you if she were in her best frame of mind.

ma1038a

An update to my situation, for anyone interested:

My mom’s PCP is more concerned than ever about her ability to live alone, largely due to a serious plumbing problem she refuses to get fixed (despite having called a plumber). She basically told me I should petition for a guardianship. I reached out to her other doctor - more of a dementia specialist - to make sure she was on board, but she was a little more hesitant and said she wanted to evaluate my mom again before she could support an “against her will” move. I imagine she will after I share my long list of specific concerns/incidents. Appointment is in two weeks.

So I think I’ll be able to basically threaten my mom with a guardianship petition if she doesn’t move willingly. It seems like there’s a decent chance that will work, but then again, the disease makes her irrational at times. I’ll let you know how it goes.

harshedbuzz

@ma1038a

Thanks for taking the time to update us.

Presumably her PCP knows her better, so I would be inclined to weigh that advice more than the specialist in your situation.

That said, assuming the specialist concurs, I would not threaten. It'll only poison your relationship and make settling her harder. She doesn't get a vote in this because she hasn't the cognition to weigh pros and cons. You decide where she's going to live and you make it happen. I would suggest a fiblet based on the plumbing issue- "there's no water/sewer so you need to stay at this senior hotel/apartment while repairs are made". Rinse and repeat until she settles into her new home.

HB

ma1038a

Thanks. My understanding is that I can’t kick her out of her house absent a guardianship, so if I trick her and get her through the doors of a CCRC, she could just leave. And we’d be on the hook for around $20,000 in rent and entrance fees, not to mention furniture. It’s also harder because she’s going to be moving near me - a six-hour drive away. She’s still “with it” enough to be able to find her way home. So I want to make sure she’s willing to stay put.

Would you have a problem with saying “Your doctors are telling me I have to be your guardian because you can’t take care of yourself. I’m going to do that, and then you’re going to move. If you want to follow the doctors’ advice and move now, we could do that instead.”

For what it’s worth, I trust the specialist’s opinion more than the PCP’s. Both are gerontologists, but the specialist is more experienced, and they do all the testing in-house.

harshedbuzz

@ma1038a said:

"My understanding is that I can’t kick her out of her house absent a guardianship,"

My mom placed my dad using a DPOA. He was likely more progressed than your mom is. The CELA who created the document knew the sorts of decisions and tasks we'd need to do, so she wrote it in such a way that we were able to do everything to. Mom drove the move, and while he protested he couldn't really put together a plan to undo it. I have a friend whose dad was very uncooperative and who actually contested the guardianship. He and his brother did prevail as dad was forced to undergo a cognitive assessment that demonstrated need despite his considerable cognitive reserve.

so if I trick her and get her through the doors of a CCRC, she could just leave. And we’d be on the hook for around $20,000 in rent and entrance fees, not to mention furniture.

It's tough. I feel like your situation would be easier if she were more impaired. When you talk to the specialist, I would ask (not in front of mom) what level of care they envision being appropriate. If she's an elopement risk, a secure unit would be appropriate but most residents would be further along in the disease. My aunt's CCRC managed this for my aunt by including her in the AL's activities during the day and having her live in MC.

It’s also harder because she’s going to be moving near me - a six-hour drive away. She’s still “with it” enough to be able to find her way home. So I want to make sure she’s willing to stay put."

This is going to be hard. She may commit and then change her mind after she's there a while. Or she might agree to move, forget she agreed to move and then fight you on it.

Could you maybe pose the move as a temporary visit and just not return her home? I mean, if she doesn't have a car at her disposal, would she try to walk it? Call an Uber?

"Would you have a problem with saying “Your doctors are telling me I have to be your guardian because you can’t take care of yourself. I’m going to do that, and then you’re going to move. If you want to follow the doctors’ advice and move now, we could do that instead.”

You know your mom best. My mom did this with dad and it didn't go well. He got his hackles up and made her life misery by fighting her on every.single.thing. Dad was about where you mom was when they moved closer to me. Dad was in a rehab after a qualifying hospitalization, we set them up an apartment near me and we brought him there saying it was a temporary situation until doctors cleared him to go home. He'd driven from FL to MD (not entirely without incident) just a few weeks before. YMMV.

HB

jfkoc

You need to fully understand the POW and pray that it is a durable POW.

Guardianship, which Furman says is called conservatorship in California, comes into play when someone is unable to make decisions for themselves and there is no power of attorney in place. 

This is CA but gives you an idea. The answer really rests with the attorney

CarolynATL

I'm so sorry you're going through this. Sadly, this isn't her decision and you will likely never get her to agree. At times she will sound perfectly capable and fine - people with dementia can often put on a good show, especially to people who don't see her regularly. It's essential that you get comfortable with fiblets / lies. My dad's car was always 'in the shop and I'll bring it tomorrow'. His home 'had mold that was dangerous and needed fixing immediately'. I got him to the doctor because 'Medicare requires an annual check-up'. Wandering out of a facility is not as easy as she may think if she wants to go. But she's in just as much danger as wandering out of her home or getting lost while driving.

You've received wonderful advice from all of the others. Best wishes to you and your mom during a tough time.

Azinn

Your mother is never going to agree to the move on her own and even if she does one day, she'll probably forget and say something different the next. My mother needed work on the building she was living in so my sister and I told her she couldn't be there while they did the work and decided to move her into my sister6s house. Prior to this, we started the dialog about her moving in with my sister. We got her moved in but it took time for her to adjust, that was a really difficult period for us. She talked a lot about going home. There was a day when a friend of hers picked her up and she convinced him she needed to go back to the apartment and didn't want to come home (we let her sleep there overnight) there was a couch but no other furniture left in the apartment. Prior to us moving her out, we were visiting her daily and bringing food because she wasn't eating well, she'd buy food and wouldn't cook it (which was a good thing since we didn't have to worry about her leaving the stove on albeit a waste of money) she'd let multiple stray cats in (that was an entirely different disaster) and she wasn't cleaning her home. So many signs that pointed to she was not well to live alone, cut to almost a year later and she's still convinced she could take care of herself.

ma1038a

For anyone following along (thanks again for the great advice):

My mom's specialist said (1) it's not safe for her to live alone and isolated, (2) it's not safe for her to live in her deteriorating house, and (3) she needs to phase out driving soon. But: (1) she's not so impaired as to warrant a guardianship, and (2) she should be fine in the independent living section of a CCRC. She flunked short-term memory and executive functioning but was fine otherwise.

My mom was willing to discuss her housing/CCRC preferences and met with a senior moving consultant I'd found, but insisted that it wouldn't happen until she was ready. (She will never feel ready.)

My Aunt and I have tentatively decided we're going to just tell her we're coming to get her and move her on X date (about a month away), whether she likes it or not. It's either that or trick her into getting in the car and driving six hours away. But I can't set up an apartment in a CCRC until she gets evaluated, so she might end up in a hotel or on my couch for a week, which would be extra stressful if she didn't see it coming. Plus, the best CCRC option costs hundreds of thousands of dollars up front, so I'm reluctant to close the deal with her money behind her back.

Does anyone see a problem with that plan? Has anyone had success telling someone who is relatively young and not technically incompetent that they don't have a choice, even if they can't back it up legally?

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ma1038a

I spoke to an elder law attorney before this last appointment. She said based on the situation I described, a guardianship might be 50/50 -- and that assumed the second doctor would back it up. She also said that, even if I get one, at the end of the day I just have a piece of paper and will still need to get her in the car and have her stay put, which is the hardest part. So, not worth pursuing a guardianship at this point, though I could let my mom know about the possibility if necessary.

Trust me -- she's still in the early stage and doesn't need memory care or assisted living yet. No risk of wandering, no assistance with ADLs. The risks to her safety are largely due to her living situation -- isolation and inability to keep up with maintenance. I do want her to stop driving as part of the move. But she can't survive without a car until then based on her location.

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ma1038a

To be clear, the lawyer said the prospects for a guardianship were iffy, based on an hour-long discussion of the situation, and that was before the second doctor (specialist) said she wouldn’t support a guardianship based on the testing she performed. It’s not going to happen. Hopefully it won’t matter, and she’ll just get in the car and move to a place we picked out when we tell her to. For what it’s worth, the salesperson at the CCRC said that strategy works about 90% of the time. Hope she’s right.

MN Chickadee

You might want a second opinion. The legal aspects for my mother with Alz were never complicated (I moved her against her will to a locked MC facility with just a DPOA without issue) but having sought legal advice for other matters I can tell you not all attorneys are the same. On one issue I had two law offices tell me wildly different things about my situation. Opposite advice. So you might find a consult with a different one worth your time. I would second the suggestion of staying with her for a while. The doctors see a 10 minute snapshot. I would stay with her for a week, observe how things are really going on a 24/7 basis and document that and go from there. It's extremely common for there to be things no one sees yet because she is alone most of the time. If you think after the visit she is doing ok then be pleasantly surprised, however it may really solidify your plans to force a change.

gretchenep

My dad (who currently has Alzheimer’s and why I joined this forum) moved my grandmother to a facility near us 9 years ago. She had been living in her own home 400 miles away but was 96 and blind. My aunt and uncle would come every few days to help her (we found out later they were stealing from her), then she fell and they didn’t tell us (later we saw they moved the bed over to cover the blood stained carpet). We couldn’t let that situation continue of course, so we moved her. She didn’t want to move of course. We told her we were just going to test out a care facility. My dad stayed with her the first night. It was terribly hard. She was angry when she realized it wasn’t temporary. She told everyone she was going to go back home and told employees to save boxes for her. She even called a moving truck! She never liked it there but she was safe.

Kathy21

I live with my mom and have since my dad died in 2015. The Dr. suggested that she not drive anymore. She was mad as a hornet when I took the plates off her car and took the keys. We just sold the car last year. I usually only hear about it when she's extremely bored (she gets bored easily). I toss her my car keys and say here use mine. She cant reach the peddles and doesn't know how to move the seat thank God. She had a little car and I have a big SUV, she's afraid to drive my car.

When we were first told she shouldn't drive anymore I kind of knew that losing her independence would be rough but then I thought of the 96 yr old woman that used to live across the street from me, very independent and still driving, and living alone. Her son waited a little too long to take away her license and she got into a pretty bad wreck. Ran a red light and got T-boned. She wasn't hurt as bad as she could have been but she went down hill pretty quickly after that. That woman continued to live on her own and drive until she pulled into her driveway and hit the house. They took her car away then and it wasn't until she almost burned the house down making toast that they sent her to a nursing home.

I've started looking at it like this, our roles have been reversed. When I was a child and she was the adult, she made the decisions for me. To protect me to keep me from making stupid decisions. We all got angry with our parents at some point for the rules or decisions they made for us. We thought Mom and Dad were wrong, got mad at them, threw a fit. They were just doing it for our own good, to raise us to be the kind of adults that would get along in the world. Now it's my turn to protect and care for her.

Thanks Mom and Dad!