How to handle long distance Mother

Gorillas4

First time poster here. My Mom lives in NV I live in MO. For the last 3 years it seems my Mom has signs and symptoms of dementia. No diagnosis and my Mom will not go to a doctor for anything. She is fit, healthy, active but it is clear her cognitive abilities are intermittently affected by “dementia?” She takes no medications and no health alignments. I am an RN for 40 years. I have worked and run dementia and long term care units but first time being in the role of a daughter with a Mom having dementia. I see the symptoms getting worse ( aphasia expressive and receptive getting worse), constant repeating, short term memory getting bad, increased trouble with numbers, writing, handing thermostat settings, losing car keys, totally has forgotten many things from the past, can’t remember dates and even forgetting streets not far from the house, obsessive and compulsive rituals she goes thru with leaving the house, locking the doors, putting out garage, has stopped cooking and eats easy to make foods from the freezer or waffles, obsessed with paperwork and clutter, has weight loss, doesn’t remember any instructions on how to handle constipation etc. obsessed with dressing up and going dance on Thursday nites with friends, and the list goes on and on. It all seems to be getting worse. I see her blank stares at times. She doesn’t remember what you tell her either about many things. Here is the thing: she denies she has an issues. She will get raging mad if you mention anything or suggest any helps for her. She won’t move out of her 4 bedroom house, she is a widow, she lives alone, very private too. Her daughters, there are 4 of us, all live out of state. She threatens to stop talking to us if we bring us anything related to her symptoms. She must be aware of declining memory as I see post it notes everywhere. I now visit every 20 days. I try to get in front of things before they are an issue. I have a list of when annual bills are due for her ( like car registration, property taxes, etc ). I try to be discrete as I help her. We talk like 3 times a day on the phone. I am her HPOA. My sister is her POA. I don’t want a crisis to happen. I want to be in front and proactive not reactive but my Mom will totally not allow any discussion of any change in her abilities or mental status. I joined this message board yesterday for help and support. I feel sadness and I want to be there for my Mom and but her lifetime desire for independence and people “not telling her what to do” is so important to her. My Mom is very welcome to live with me or live near us if she wants her own place but she refuses to make any change.

Victoriaredux

Hi Gorillas4 —

From your post about your Mom two sentences stood out : " Here is the thing: she denies she has an issues. She will get raging mad if you mention anything or suggest any helps for her. " and "I feel sadness and I want to be there for my Mom and but her lifetime desire for independence and people “not telling her what to do” is so important to her. My Mom is very welcome to live with me or live near us if she wants her own place but she refuses to make any change. "

Being unaware of their condition is very common for PWD —look up Anosognosia
https://www.agingcare.com/topics/295/anosognosia. It's not denial , it is an inability to look at and understand her abilities .

Trying to get her to understand the situation usually results in just what you have encountered- anger and resistance.

With her memory and judgement issues it doesn't sound safe for her to be living alone , and especially not having access to her funds.

I suggest you and your sisters decide which one of you would be the logical one to have Mom live with them , or near them in an AL or MC. Having the HPOA and POA split between two people makes it more difficult - suggest that once you've decided who would be the logical hands on [even if she ends up in a MC] sister that you talk with an elder law attorney to discuss what actions your existing documents allow you to take or if you'll need to get guardianship and in which state.

It sounds like your Mother is still driving and that doesn't sound safe —her judgement and memory are impaired—even if her muscles are still strong driving requires the brain to notice and respond at a fraction of a seconds notice. Vision can also be impaired with dementia . Have you walked around her car— are there dents, marks where she hit things - and a grocery or dance hall parking lot are very dangerous .

While you are monitoring her bills [why isn't the POA sister handling that?] she could be still be scammed or make gifts that cause a problem for her getting long term medicaid assistance .

I get you want to respect the strong independent woman she was all your life but she needs oversight now. It make not make her happy— but safety has to come first since the disease is progressive. Phone calls are unreliable at this point in the disease- they can't report accurately- because they just can't for organic reasons , but the PWD sounds just like the person we love and we believe them. At some point we have to accept the reality we see in a home visit and work around them to get them safe.

H1235

Welcome and sorry you have to be here. This board does not get much traffic you may want to repost in caring for a parent. Im glad the DPOA is in place that is one big hurdle you don’t have to worry about. Anosognosia is the inability to recognize or understand their own limitations or symptoms. It’s very common and in my opinion one of the worst symptoms of dementia. Many here have suggested telling a lo that they must see a doctor as part of their insurance requirements. I would also recommend sending a note to the doctor with your detailed concerns prior to the appointment( bringing your concerns up in front of her will probably cause problems). I doubt there will ever come a time when she says I need help. You and your sisters are going to need to step in and do what needs to be done to keep her safe. That’s probably going to make her very angry. I would start thinking now about how she will be cared for moving forward. If you’re thinking assisted living, start looking into them, there can be a waiting list. I would strongly recommend moving her to a place near either you or your sister. Look into her finances to see if she has the money to cover AL and for how long. I know it seems wrong but you need to start doing what needs to be done behind the scenes. When possible give her the illusion she is in control. Are you concerned about her driving? If you don’t think she should be driving take the keys (let her think she lost them) or disable the car (is she with it enough to just call and get it repaired?), maybe tell her you are taking it in for repair and don’t bring it back. If you don’t think she should be living alone I wouldn’t let an official diagnosis stop you from getting her someplace safe. A diagnosis may take some time. A neurologist appointment may be 6 months or more away. I hope there was something useful in my rambling. Good luck.

Emily 123

Hi Gorillas,

My brother and I split HCPOA and POA. I'm the primary caregiver with mom in MC in my city—we moved her to be closer to me when the wheels fell off the bus. My brother handles the taxes and bills and will handle the estate when she passes. Mom has her savings in a trust which feeds into a bank account along with her SSI. That bank account is where we draw money to pay bills, and has a credit card attached to it so I can pay for supplies she needs. It works well because he absolutely doesn't want to weigh in on Mom's care decisions and I don't want to deal with the financial stuff.

From what you're saying, your mom needs oversight now. As an example: My mom was renewing her levothyroxine prescription online. Except she stopped being able to navigate the process and locked herself out of her computer. Her behaviors at that time sounded very similar to what you describe. Was my mom taking a pill every morning? Yes-but it was a multivitamin, not her levothyroxine. Did she tell me she was taking all her meds? Yup. And sure, we were aware there were memory issues because she would repeat questions during phone calls, but from 350 miles away she seemed like she was managing. Mom also thought she was eating, but wasn't, and so was losing weight—she couldn't remember, she had trouble identifying if she was hungry, and she was having trouble sequencing the steps of preparing a meal, so couldn't get started.

To get out ahead of her dementia you're going to need to soothe your mom by meeting her in her reality, which is that she's perfectly fine. (Fib whenever you need to.) You'll have to manage her affairs in the background without her. That means no more discussions with her about her finances or health, or the changes you see, since it stresses her.

She has no ability to hold onto multiple pieces of information at one time, and so lacks the capacity to compare & contrast and make informed decisions about her healthcare or living situation. That memory loss also means she'll have no way to sense the passage of time, with calendars, notes, and reminders losing their efficacy. In this stage (I'd guess stage 4 or so of the 7 stage model in the Tam Cumming's handout) there needs to be a pivot from allowing her autonomy to keeping her bubble-wrapped from making poor decisions & keeping her safe. And…know now that you can keep her safe, but because of the disease she may not be happy. You can't help that, and you aren't 'doing' anything to her-the disease is.

These helped me:

Tam-Cummings-LLC-Handouts-2.pdf

understanding-the-dementia-experience.pdf

Moderate stage changes: https://www.youtube.com/watch?v=6cZTgG6kDjs

5 other losses: https://www.youtube.com/watch?v=awBm4S9NwJ0

Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg