Looking for advice for a long-distance caregiver

graywolf28

Hello, I will be visiting my 80-year-old mother in Salt Lake City for the first time in 6 months, due to coronavirus. She just received her second dose of vaccine. I'm extremely anxious about seeing her, as her health has declined significantly over the past year, including her memory and cognition, but also physical symptoms like vision loss and chronic kidney disease, among others. She's very distrustful of the medical profession, due to her dementia and possibly past hospitalizations. She's been unwilling to have home health or residential care, and is no longer able to drive. At this point I hope to take her to see her PCP next week and possibly an eye doctor, but I expect pushback on that and any efforts to change her routine. I'm just exhausted from 10 years of these (mostly lost) "battles". I'm looking for some wisdom to help me help her as best I can, and to try to keep it together at the same time. Thank you.

Cynbar

It is very, very difficult to be a long distance caregiver for a person with advanced dementia. You will find multiple threads here about caregivers who are hesitant to make necessary changes for their loved ones who are not safe under their current plan, but refusing to make changes. It's a hurdle that most of us have had to get past, when we need to take over and make decisions that are best for the PWD. You have all my sympathy, it's very difficult, but the alternative of leaving things as is will be worse. Don't expect her to understand or make rational decisions, her brain isn't working right.  My first suggestion is to consider moving your mom close to you. She won't like it, but you will get advice here on how to accomplish it (one daughter got her parent in the car and just started driving to the destination). You will need to make sure her legal affairs are in order, ideally with you as her  durable power of attorney. That will give you authority to act in her best interest. And you will need to get a handle on her finances --- does she have funds for care or placement, or will she need to apply for Medicaid before too long? A certified elder law attorney will help you with all that. It really sounds like she is no longer safe living alone, especially with you so far away. You'll get a lot of good advice and support here every step of the way, so don't hesitate to come back. Good luck.

graywolf28

Thank you, Cynbar.

I have Durable POA for her along with the other estate documents. Her financial and legal affairs are in order. She has money for care of any degree but doesn't want to spend it on herself, despite my frequent urging. Spending my own money on her isn't any more convincing for her.

I've tried to get her to move closer to me for the past ten years, but she's resisted that, in part because she's got a lifetime of stuff at her house she doesn't want to part with. I'll bring it up moving again next week and will read other threads here to see what has and hasn't worked for long-distance caregivers.

I would describe her dementia as moderate, after being mild-to-moderate up until six months ago. She can be very articulate, thoughtful, and empathetic, but is increasingly confused and frustrated and forgetful. She's an avid gardener, except in winter. She will adamantly defend her right to stay at home and let the chips fall where they may, and to date I doubt any judge or social worker would declare her incompetent.

She's definitely on the cusp of not being able to care for herself, but for years I've not known where to draw that line. I think that line is becoming ever more clear. I definitely worry about her safety. The way forward doesn't seem clear at all to me, but I'll read on.

M1

Welcome graywolf. A temporary option (though expensive) might be to look into hiring a professional care manager who is local and who can supervise some things for you. You might want to look into that anyway as a backup plan, should something happen to you (God forbid).

The really hard thing is that it's unlikely she'll agree to any changes, and you probably shouldn't wait for that. If you have poa, check to see if it requires a declaration of incompetence-many do not. You may have to step in over her objections. Sad but not uncommon. Good luck-

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graywolf28

Thank you, M1. That's very useful advice, and obviously hard-won for you and many others here..

graywolf28

Thank you, Victoria2020. I wish I'd learned the lesson of not trying to convince her about things 10 years ago. Probably would have saved both of us a lot of misery. I'm making note of your other suggestions too. Good luck to you.

Cynbar

Scroll down to the thread "Home Care vs Memory Care --- the Endless Dilemma." It will give you some perspective on another caregiver in a similar, although more extreme, situation. 

Good luck, absolutely NO ONE has ever said this is easy. But Victoria's advice is good ----- stop discussing this with her, stop expecting her to understand the risks. As she gets further into dementia, she won't be able to, and it will only agitate both of you. It's a big step to take over the decision making for a parent, but often it has to be done for their best interest.  You will need to call the shots going forward.

graywolf28

Cynbar, thank you for the advice. I don't know how to follow it unfortunately. 

My mother is probably stage 4 out of 7 on the Alz scale. She is increasingly forgetful, but knows her own name and address and who and where she is, which I think means she's not yet at stage 5 (moderate). 

In that case, I don't know what practical options I have to impose my decisions on her when she is still legally competent enough, in the eyes of the law, to make her own decisions. If she were already in stage 5, I think I could possibly follow through on the advice given here. But I really have no idea how to get her to change any behaviors in her current condition. If trying to convince her to change is no longer a practical option, and she refuses to allow me to make decisions for her, what's left? Do I wait til she gets to stage 5? I am not trying to "be the child" in this relationship, I just don't see that I have many options to be the adult.

I got to her house today only to learn she had canceled the appointment I'd made with her PCP for the coming week. 

Quilting brings calm

Gray ... call the doctor in the morning.  Tell them who you are, how far you’ve traveled, and how long you will be in town.  Grovel if you have to... get an appointment.   If you can’t get one, find out which walk in clinic they recommend you go to and go. 

Canceling appointment is something people with dementia do because they don’t want to hear what the doctor has to say, or because leaving their house to go  is too stressful for them.  My LO did the same thing .... ask me to come halfway across the country because she wasn’t doing well and then cancel a neurologist appointment before I got there that would  have helped. 

Also not so sure that stage 4 is all that competent.  Depends on the day.  It’s pretty obvious to the doctor that there’s an issue.  Even if that doctor isn't familiar with them.  

I don’t think you are going to be able to manage this long distance.  My LO is in an ASL at stage 4 and I’m out there with groceries, misc  issues or transport to doctors at least a couple of times a week.  And that’s without actual indoor visits. How is she currently getting food and supplies etc if she doesn’t drive? 

star26

Hi Graywolf, 

Is the DPOA in effect now or is it the "springing" variety that requires a letter of incapacity from a doctor? Does she have a Trust? If so, are you the successor trustee? If so, read the document and get familiar with what is required for the successor to step in while the grantor/trustee is still alive. It may be a letter of incapacity from an MD.

You do not need a judge or social worker or anyone else to say she's incapacitated unless it says this in the POA. It likely says this in the healthcare POA, as that's standard (doctor's determination). However, many POAs are now written to be effective as of the date they are signed. Read the document. 

If you have an active POA right now, you can use it right now. It might even be said that you have a responsibility to use it now if it was signed with the understanding that you would step in if you ever determined it was necessary for your Mom's best interests. We're not talking about differing opinions and wishes. This is about actual need and safety concerns. 

My Dad had a springing POA that required one specific doctor to say he was incapacitated. At the time we got the letter of incapacity, my Dad still knew all of his orienting information and family and could still fool people that there was nothing wrong, and present fairly well. Yet at the same time, he was not safe to handle his own affairs and proved it in many scary ways. I had to do some detective work to compile all this undeniable information and evidence to get the letter of incapacity. This was around Stage 4-5. I was also an out-of-state caregiver.  

Does she still have the right to reverse your decisions? Yes. Will you be making her aware that you are making major changes against her wishes? No. Will you be having dramatic battles, you against her? No. Will she still think of you as her ally? Hopefully, yes. Will she be able to realize what you are doing? Probably not. If she does, will she know how to change it? Probably not. Will you help her do things you don't want her to do? No, you'll make it more difficult if you can. 

You may be thinking about this as too black & white. Instead of trying to get your Mom onboard with whatever you feel is necessary, and instead a creating a "I'm going to make you do this" situation, think about adopting new ways of interacting with her even if they feel unnatural or wrong. For instance, therapeutic fibbing; working behind the scenes; capitalizing on her forgetfulness, poor sense of time, and confusion; letting other people, entities, or outside forces play the bad guy instead of you; saying things are temporary even if they're permanent; picking your battles; and reminding yourself that you are doing this only when it's necessary to protect your Mom; etc.  The purpose of going about things this way is to enable you to make the most critical changes necessary to protect your Mom in the least stressful way for both of you, and to keep your Mom feeling as calm, safe, and happy as possible, however that is defined for her. It's not just the most effective way, but it's the most kind way of doing things for our LOs.  

Here's a couple simple examples: If she doesn't want to spend the money for in home caregivers you might tell her it's a free service offered to Seniors because of Covid, or it's a free service offered through Medicare because of her health conditions (not dementia - don't ever mention dementia). If she won't go to the doctor, come up with a fib that will motivate her. Maybe she can't get her prescriptions refilled if she doesn't go. Maybe there's a new policy that requires her to have a brief check-in visit after a Covid vaccine, or by March 1 of every new year, otherwise she may lose insurance coverage or be dropped from her doctor's office. You schedule the appointments, make sure they confirm the appointments with you and not her (change her phone number to yours), and don't tell her about it until the day of the appointment. "Mom, your doctor's office called me about an appointment. They said they couldn't reach you and they must have had my number because I'm your emergency contact..." 

Unless you already have a whole lot of information from neighbors/friends and/or from monitoring her affairs online, I would make part of your upcoming visit a fact-finding mission. When she's sleeping or otherwise occupied, go through everything. Then, create a list of the most critical things that need to be addressed right now. It might be nutrition and kitchen safety, bill paying, medication management, housekeeping and house safety, healthcare, or all of the above and more. While you are going through everything, remember to take or copy helpful documents you need such as financial statements, billing info, credit card info, names of her brokers/accountant etc. If you are not already monitoring all her accounts online and able to do online bill pay, get enough info to set those things up. Once you know what needs be done immediately or soon, people on this forum can help you with the specifics of what you might say to her and how to go about it. Maybe you can get some in home help set up before you leave or at least get the ball rolling. Many of us have already been down this road and we can tell you what worked for us, and you can tweak it to fit your situation. 

Has she already been formally diagnosed with dementia? 

I'm wondering how she is getting her groceries and how she managed to get both vaccines? Did you arrange it? Is someone local helping her? How much of this is she handling on her own? 

Remember this forum if you find yourself overwhelmed or needing support or practical advice during your visit. Try to make it a good visit for her, even if for you it's sad, scary, frustrating, depressing, or overwhelming.  One step at a time. 

star26

I missed your note about the PCP visit... What is the reason for the visit? Does she have a physical health complaint that needs to be addressed? Is she overdue for recommended visits? Or did you just want to talk to the doctor about her condition? How important is it?  

If it's essential, reschedule the appointment and on the day of the appointment, or possibly in the car after going out for lunch, say "Mom, Dr. PCP's office just called me. They must have had my number down as an emergency contact, (or they made a mistake), (or they couldn't reach you). They said you're scheduled for a quick check-in with them today. It's some kind of new requirement of your insurance company (or because of Covid). They said we can swing by now."  This might not be the exact fib for your Mom, but it's an example. If you've already had a conversation like "Mom, I want to take you to the doctor because of X,Y, and Z" then this plan probably won't work because you've got her defenses up. In the future, schedule the appointment, have it confirmed with you, and don't tell her in advance. And make sure you've got a HIPAA clearance at the MD's office (and preferably a general one that you can give everyone as needed.) 

I'm sorry your visit is starting out this way!