Mom is 275 miles away

DeeinVT

Hi everyone,
I am the eldest daughter of four, I share POA and Advanced Healthcare with my brother, the youngest, who lives about an hour and a half from mom. Two sisters in between, one is in FL, lives within an hour but had a brain tumor and is dealing with her own health issues. I live about 275 miles, about a 7 hr drive. Mom is 91, walks every day, goes dancing once or twice a week, still drives and does her own errands, lives alone. She was diagnosed with early stages of dementia / Alzheimer's about a year ago. So far she seems capable of taking care of herself, the way I'm going over next week for her to have a driving test. As POA I have the right to take away her keys and sell her car but I don't want to do that. I don't want to have to be the strong arm in her care. My mother is very independent and stubborn. Most of her issues so far have been not knowing who people are when we see them but she won't admit it until we're alone. She knows that she has grandchildren and can tell you how many each of her children has but cannot remember their names. She is also hard of hearing and refused a hearing aid year ago so I am going over for another appointment for her for that next month. She has always been a talker, he used to spend a lot of her time on the telephone talking to different family members, some of whom have passed, and others who don't answer when they see her calling because they know that she is just going to Ramble On and On for an hour about old stories, which now she has changed so that she always comes out as the heroin of victim and the other people come out as the bad guys. Did I mention she's also pretty narcissistic? I'm in the process of filling out paperwork for long term care insurance, which will include an evaluation by someone who will determine whether she is ready for nursing home care or if a companion could come in a couple times a week. She's very stubborn as I said so I doubt she'll let anyone do any cooking or cleaning for her, so it would just be someone to sit there and let her tell her stories. Her one sister and a few other family members are harassing me about moving to live closer to her, but I have a home and a job and my son's live here. I am on Social Security myself and can't afford to pay my mortgage here and rent someplace else and don't really want to do that. I have my own health issues and need to stay close to my own Physicians. My brother Works full-time and his wife isn't very good about allowing him to go and do things for my mom so that's not a big option. Besides there's very little that needs to be done for her that he could deal with. I've spent the last month faxing paperwork to all of the companies that she has accounts with, whether that's a life insurance, her cable company, etc. I'm already on her bank accounts and I've made all her payments auto payments now so that she doesn't have to think about writing checks, which she had missed some payments in the past couple months. Currently she is saying that her Life Alert button doesn't work even though I tested it three times while I was there and it worked fine, so I think I'm going to contact the company and see if they will send her a new one. She's starting to say she doesn't think she needs to wear it which of course she does if she's going to be out walking by herself and traveling around by herself. Or if she should fall in her apartment. But she's stubborn enough that she won't admit that she has any infirmities at all. I'm trying to stay patient with her and I guess that's what I need the most help with right now, how do you maintain your patience when it's the 4th, 5th, 6th time that they've called you about the same thing which you've already resolved? How do you deal with the stubbornness and refusal to accept their situation? Thanks in advance for any help you can give me.

concerned_sister

Hello DeeinVT,

It sounds like you're dealing with a lot, and the distance doesn't help. I help with my DB who has early on set dementia (all his tests are suggestive of Alzheimers). One of my early "battles" was to convince him he should not be driving. I basically let the doctor be the bad guy. In my observations of him, he was having trouble completing sentences etc. One way I explained the situation to him was that I wasn't as concerned about him on an open road, but he had other drivers and circumstances he needed to react to, and any delay in reaction time could cause a serious accident. With his diagnosis, he could get sued for everything he and his wife had built up. He relented when the doctor confirmed he was contacting DMV.

It seems to me likely that your mom is impaired and not likely to react quickly. Not remembering she just called someone, can manifest in her not remembering there's a car in her blindspot. As others here had advised me, as her POA you are potentially liable if you don't exercise your authority over her well being to take her off the road.

That off my mind, you ask, how do you cope. In my case it has been learning as much as I can about the disease. I like the videos put out by this organization.

https://youtu.be/BAYSiZEM0fY?si=c1M7A7h_DWSwiMCy

The presenter often reminds "they are not giving you a hard time, they are having a hard time."

You will also learn about anosognosia. Basically, it's a feature of the disease that your deficits get to the point where you can no longer recognize your own deficits. As some around here are fond of saying you'd like your love'd one to be safe and happy, when that's not possible, safe takes priority.

Another concept you'll learn is confabulation. As your mother's brain deteriorates, she's often left with fragments of memories. So she will put them together the best she can to tell a story. The characters may change, her role in the story may change. This isn't intentional to make herself look better, this is just her making the best of what her brain has left her with.

None of this is easy, but the more you learn, the easier it will be to find empathy for your loved one.

Please continue reading here. There's a support group here that brings vast amounts of experience, wisdom, and empathy for the path you and your family are on.

towhee

Hello DeeinVT, welcome to the forums. This particular forum does not get many visits, you might also want to post in either the General Caregiver or the Caring for a Parent forum.

Concerned_sister had some good information for you. You might also check out information resources in the "New Caregiver Help" group (under Groups, usually top right of the page). Usually, it is advised that spending at least 3 or 4 days living with the PWD is necessary to get a true picture of their current capabilities, and most long term care policies require that a person need help with ADLs such as bathing, toileting, or medication before they will start to pay. Congratulations on her having a long term care policy! It is going to be a lifesaver.

As to the relatives thinking you should be a 24 hour caregiver for your mom- Bless their sweet little hearts! They do not get a vote. Your mom chose you and your brother as POA. You two, with maybe some input from the successor POAs are making the decisions. Your mom either planned well or at least agreed with good suggestions. She downsized while she still could. She got long term care insurance. She put POAs in place. You have the tools necessary to care for her. You have already made a good start on the financial side and your brother lives close enough for those trips to the hospital (which unfortunately will come) and to supervise transportation and care. Right now you need to put into place a method to keep better tabs on her, which might include something like apple tags on her purse in case she gets lost, and a camera system in home to check on her, especially since you say she is starting to not want to wear the Life Alert. You also probably want a companion who will provide transportation a couple of days a week even if the long term care policy will not pay for it yet, it might make it easier for her to stop driving. She will probably be at the Assisted Living level soon, if she is not already, at which point you might think about moving her to a facility near you. In home care 24/7 requires a fair amount of supervision which neither you or your brother could probably handle, not to mention it is expensive.

As to the patience, build in some relaxation time for you, and make it a priority.

harshedbuzz

@DeeinVT said:

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

I would urge you to read about dementia. If you click on the "Groups" link (on a laptop this is in the purple banner at the top of the page/on a smartphone you can access the link using the site menu icon at the top left— 3 horizontal lines) Under "New Caregivers" there are a couple of quick informative reads linked in the post. I would suggest Understanding the Dementia Experience and Tam Cummings handout and DBAT to start.

Mom is 91, walks every day, goes dancing once or twice a week, still drives and does her own errands, lives alone.

Does she really? PWD are typically poor reporters. They very often describe activities in which they participate that they haven't done in months/years. My dad used to tell me he golfed a couple days a week, went to the pool daily and socialized with his neighbors nightly in Florida after I moved him north. When I went to FL to prepare his house for sale, his neighbors all told me that he hadn't done any of those things in 3-4 years except for hosting happy hour when it was my parents' turn.

She was diagnosed with early stages of dementia / Alzheimer's about a year ago.

If she's forgetting names, she may be further along than you think. Alzheimer's is progressive and terminal.

As POA I have the right to take away her keys and sell her car but I don't want to do that. I don't want to have to be the strong arm in her care.

Nobody wants to, but you may need to whether it suits your personality or not. As POA, you not only have a legal right to act prudently on her behalf, you have a legal obligation to. The driving is a huge issue and one that upsets many new members who feel attacked by old-timer for being told they need to stop their LO driving. But it is nevertheless your reality. You've taken some important steps to protect her financial well-being, but you are leaving a gaping hole allowing her to drive. Aside from the moral and ethical piece of allowing a PWD to drive and potential kill or maim someone to avoid confrontation, there's a real possibility that her insurance won't cover an accident given the diagnosis in her medical record. This is a call you will need to make. She could be sued and lose everything. As POA, you could face charges or be held liable as well.

For your sake, I hope she fails the test. Have you driven with her to assess her driving yourself? Why was she called in for a test? Dis someone report her or is this standard practice in your state.

One of the aspects of dementia for many is that traits of their personality often become more extreme with the loss of empathy and social filter. But she's not independent if she's not able to manage her IADLs— you're already looking after her financial wellbeing.

She … is just going to Ramble On and On for an hour about old stories, which now she has changed so that she always comes out as the heroin of victim and the other people come out as the bad guys. Did I mention she's also pretty narcissistic?

Again, with dementia her narcissism will be on steroids. This is behavior I observed in my dad as he transitioned into the middle stages of dementia. He had a difficult personality— everything you describe as your mom plus a hefty side-serving of misogyny for good measure. I get it.

Most PWD are repetitive in their conversation. My dad's stories were often highly conflated in that the story happened but the details— who, what, when, where— were wrong. Like your mom, he was often the hero coming to the rescue in these warped stories.

I'm in the process of filling out paperwork for long term care insurance, which will include an evaluation by someone who will determine whether she is ready for nursing home care or if a companion could come in a couple times a week.

Dad was very resistant to caregivers in the home. He didn't want a "babysitter". My situation was that he lived with mom who mostly kept him safe, but she needed considerable respite time for her own health both mental and physical as he was not an easy going PWD. Your mom could need direct supervision soon. She doesn't sound as if she's qualify for a nursing home. Her LTC insurance likely has limits, so you'll need to investigate that and plan accordingly. She sounds like she might be OK in an assisted living set up for a bit longer before she needs to transition to a secure MCF.

If anyone is to move, it should be her coming to live closer to you. Ignore the aunties; they have no say in this and their opinions are skewed by what's happening with their sister being their own worst nightmare. You'll likely need to create a therapeutic lie to shift her. Some folks have created fiblets about a home having the sewer line repaired or tented for termites. Others had luck with inviting a parent to visit them to help out and moving into a "senior hotel" for the stay.

You aren't going to talk her into this, you just have to make it so. You're in charge now.

I've spent the last month faxing paperwork to all of the companies that she has accounts with, whether that's a life insurance, her cable company, etc. I'm already on her bank accounts and I've made all her payments auto payments now so that she doesn't have to think about writing checks, which she had missed some payments in the past couple months.

It's great you've been so proactive around this.

Currently she is saying that her Life Alert button doesn't work even though I tested it three times while I was there and it worked fine, so I think I'm going to contact the company and see if they will send her a new one. She's starting to say she doesn't think she needs to wear it which of course she does if she's going to be out walking by herself and traveling around by herself. Or if she should fall in her apartment. But she's stubborn enough that she won't admit that she has any infirmities at all.

That's anosognosia at work. You won't convince her and you likely won't gain compliance on the Life Alert. My mom, non-dementia parent, got herself one after sharing a hospital room with a woman who fell through her porch floor and was trapped for 3 days. I never once saw mom wear it. I have an Apple Watch which she thinks is something cool-girls wear and I have way better compliance with it. Your mom probably couldn't learn to use the phone, but you'd get fall alerts and be able to track her fairly well.

I'm trying to stay patient with her and I guess that's what I need the most help with right now, how do you maintain your patience when it's the 4th, 5th, 6th time that they've called you about the same thing which you've already resolved?

You just do. You accept that their brain is broken and they're doing the best they can with the disease and their in-born personality. If they're in a secure facility, you can disappear their phone. If she's at home or in an AL, you get yourself a cheapie burner phone and program that number into her phone. Leave a reassuring outgoing message for her and return the calls once daily at your convenience.

How do you deal with the stubbornness and refusal to accept their situation?

You accept that she can't recognize all of the ways in which she is impaired or that she doesn't realize that she can no longer be independent and do what you need to keep her safe.

HB