Remote caregiving ... don't know what to do

TheCatWantsOut

Hi all. I did not see a separate forum for Remote Caregivers so I hope it is OK to post here. I'm sure every conceivable topic has already been asked and answered on this forum but I'm just too worn out to read through thousands of posts. So forgive me if I am asking the same old things.

My current conundrum is: Should I do anything at all? 

My mother is in her seventies, which everyone tells me is "not old", but she is in very poor health. She does not have an official diagnosis of dementia but that is because she does not receive medical care. She routinely calls the police because people are stealing from her, or more often because people are coming into her house and leaving empty bottles on the counter or clothes in her closet. Mom can no longer read, pay her bills, or use her computer. She is homebound and is in bed about 20 hours per day. She can walk with a walker. She is quite frail and her weight is down to 77 pounds. She does not bathe or perform any significant personal hygiene as far as I know.

For care, she has a friend who visits every three weeks to buy food and medications and to clean the house. Mom is a heavy smoker and increasingly heavy drinker. She supposedly has a service called Visiting Physicians that comes to the house; as far as I can tell they come once every six months to take her blood pressure and renew her prescriptions.  

I am her only "close" relative and I live 300 miles away. As her situation has deteriorated I have increased my visits to one weekend per month. Of course I have work and my own kid to care for at home, so more than that isn't viable.

I have tried endlessly to get Mom to accept a Home Health Aide, or a therapist, or someone to visit. She has completely refused, and has "fired" several services I have tried to arrange on her behalf. I contacted Adult Protective Services, and they visited a couple times. But in the end, in the absence of elder abuse, all they can do is recommend she get a home health aide. 

Mom wants to stay in her home, obviously. From an outside perspective, her life is absolutely miserable and isolated. For years, mental illness, depression, and just extreme stubbornness have made it impossible to bring her any kind of useful medical care or socialization opportunities. Now adding in some form of dementia, convincing Mom to accept in-home care clearly is never going to happen.

Sorry about the long history. Circling back to my question: Should I do anything? Unconsciously or consciously, at some point she decided her plan was to stay in her home, maintaining her "independence", until she dies. Maybe the right thing to do is to respect that and just let things play out. The only realistic alternative I can think of is to petition a court to obtain legal guardianship and have her forcibly placed somewhere. I'm not sure that is the right answer.

M1

Welcome to the forum, it is perfectly okay to post wherever you need to (website is due for an update in just a few days).

  Sounds like if you do nothing, one of two things is going to happen:  she is going to be "found down" on the floor, either dead or alive; or someone living close to her is going to call adult protective services.  You can call adult protective services yourself, for that matter, but it's worth thinking through what the implications of that will be for you.  

All of these situations are very difficult.  There is a 24/7 Help line--1-800-272-3900--that might help you sort through alternatives, or you could try calling the Council on Aging where you live or where she lives (likely the latter).  If she is in fact too far gone to give you power of attorney, you probably will in fact have to pursue guardianship.  You don't have to necessarily be the guardian, you can ask that the state appoint a professional guardian.  I don't know what the cost implicatins would be.  

Hard to realize that she can no longer fend for herself or make rational decisions, so what she "wants" has to be taken with a huge grain of salt.  Hope you will find this forum helpful, I'm sure others will chime in.  

SusanB-dil

Hi TheCatWantsOut - welcome to 'here' but sorry for the reason.

It does not sound like she should be on her own at all. However, do you have DPOA and medical HIPAA accesses? I agree with M1 that there may not be much else you could do. Do call the helpline suggested, and perhaps consult with an elder-care attorney. You could go for guardianship, and I understand that could be lengthy and costly. If you do have DPOA, you could maybe find a facility much closer to you for her.  also - Reasoning with her won't work. 

towhee

If you do not have DPOA or Healthcare POA than other than contacting Adult Protective Services periodically with an update (weight loss etc. ) or going for guardianship you might have to wait for her to be "found down". When that happens you need to tell them she cannot go home, APS might be able to help at that point. You could try contacting this visiting physician service and asking them to get palliative care/hospice to evaluate her. If you had HPOA you could do this directly without involving the physician service. This would get you more eyes on her and since they are paid by Medicare she might accept them. Alternatively, you could try to set up someone to check on her by phone a couple times a day, or some sort of remote monitoring, so that she would not be down for days without being found. I would say get her a fall detector watch, but she might not wear it and they have to be charged. How is she getting the alcohol? Sorry for your situation.

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MN Chickadee

What a conundrum. I can see why it's hard to do anything. I would start with consulting an elder law attorney about options and legal exposure and go from there.

TheCatWantsOut

Thanks for the helpful comments. To answer some of the questions folks posed:

1. Do I have HIPAA access and/or financial POA?

No. I have tried to get Mom to sign those forms in the past but she never "got around to it". I think it is time to consult with an Elder Care Attorney to understand what are the options to force that issue.

2. Who buys her beer (and cigarettes)?

The friend who visits every few weeks to bring food and clean the house. I don't like it, but it is not my place to deny someone access to things they are legally entitled to. I don't think there is much I can do about it anyway from 300 miles away.

3. Have you considered filial laws?

No. I have never heard of filial laws before. It appears she does live in a filial law state. I can certainly understand the intent of such laws, traditions of caring for and honoring parents must go back through every culture all the way to prehistoric times. At the same time, in modern America there must be countless elders who are essentially abandoned and I am pretty sure there is not a tsunami of adult children being prosecuted under filial laws. I'm having trouble reconciling that. This could be another good topic to discuss with an Elder Care Attorney. 

TheCatWantsOut

Well, I just spoke to an Elder Law Attorney. The options seem to be Durable Power of Attorney or Guardianship. But it appears that I am still stuck. Because I think she has dementia, at least in the early stages, even if she signs a Durable Power of Attorney it may not be valid. But because Mom has not been diagnosed with dementia, and I think she possibly could "pass" a psychiatric exam on a good day, an application for Guardianship isn't yet a strong case. 

Not sure what to do next. I have no confidence in her Visiting Physicians service to provide assistance. Maybe I could have her evaluated by another doctor, but how am I going to get her to agree to that?

CanyonGal

I think you would be surprised that she can sign legally documents in the early stages, and make changes to them. Someone with the medical or legal authority would be able to tell you if they found her incompetent. Guardianship involves lawyers and court time and can be costly. My cousin went that route for her mother. Guardianship has more power over a DPOA.

My mother refused to move to assisted living at first but agreed to have a caregiver visit twice a week to help with bathing and as a companion. Six weeks later, she had a nasty fall. We kept her in the hospital  (Medicare covers rehabilitation after an 3 night stay) and said she needed to be placed in rehab as it wasn’t safe to release her to be alone in the house. At rehab, they did cognitive testing. She was so frightened of the ramifications of another fall she agreed to go to assisted living (but didn’t like it). She drank every evening and that had to stop as well.

You’re at least trying to help her, as we tried to help my mom. No one lived nearby in our case either. It is difficult.

CaliforniaGirl-1

For many people, there are LOs who refuse to leave and refuse care. You are not alone in that. And in spite of diminishing capacity, the family's options are limited because people don't easily lose agency over themselves. I remember a social worker telling me how hard it was and that the fact that someone is making bad decisions doesn't take away their control. 

For lots of us there was some precipitating event, a fall, a hospitalization, something that required rehab, or something like that, that enabled us to get our LOs out of the house and into a safe situation.

I remember feeling like the only one as everyone around me said, "just do this" and "just do that" and it was because they had more cooperative LOs. But the reverse is much more common than you think.

While you are following all the other good advice here, call a local support group. It is good to have people to talk to about this who are going through the same thing.

Even if your mother has diminished capacity a good elder attorney may be able to help you. Be aware that the elder attorney will be your mother's lawyer and not yours. But they will talk to your mother and see if your mother understands what she is signing and that it represents what she wants to have happen. If your mother is not able to sign these documents  because of lack of capacity you may have to pursue custodianship or guardianship which is a different process.

Good luck, There are lots of folks going through the same thing or similar things.

One last thing: consult the elder attorney and social workers in the state your mother lives in as all state laws are a little different.

GemsWinner12

Hello and welcome; I'm so sorry that you're stuck in this conundrum.  My situation is similar; My Dad lives over 600 miles away from me in a very remote location.  My Dad has had Multiple falls, calls 911 on himself (hallucinating and thinking people are in his house)  gets admitted to the hospital, then he goes to rehab and gets healthier/off the bottle. Then they send him home because he has the right to refuse a nursing home and he has refused to consider moving closer to me on multiple previous occassions when he was of more sound mind and body.  Since he still refuses to sign POA paperwork over to anyone (including me his only child).  I have already spent thousands out of pocket and he has worried me to death over all his falls and hospitalizations.

He has had at least a handful of APS case managers, and every one of them has done Nothing except try to get me to spend more money, drama, and time on him.  They are trying to push me to go to court for guardianship; I googled it and said No Thanks!!  He had free caregivers in his house provided by the VA and he managed to push them all away with his angry/nasty behaviors.  No one else in his entire town will go into his house any longer.  

My Dad walked out on me and my Mom when I was four and honestly he was not even close to being a father or a Dad to me.  The only time I ever heard or hear from him is when he wants something from me.  At this point in time, he will probably be going back to his house upon release from his current facility. That's too bad because when I was paying a cleaning lady to go into his filthy house, she let me know the water had been turned off (he hasn't been paying bills).  I also paid three different cat lovers to rehome his three cats that were thirsty, hungry, and living in filth.  

I have told case managers, the VA, and APS people that I am sorry, but I do not have the financial resources, the energy, nor the need for more angst in my life.  They are going to need to figure it out for him; I can't.  He has no will, no POA, NOTHING....except I am his medical decision maker, so they wind up calling me to let me know about every catastrophe (or mini-problem as well).  

I have chosen to disengage for my own emotional/mental/financial well-being.  I am letting you know that from my experience, you may find yourself in the same position / or similar.  Since my Dad lives two states away, I would need to drop my entire life for quite a while to go to court, attend meetings, speak with case managers, then pay all my Dad's bills and not get reimbursed.  Please update us on what you are thinking you will do.  Thank you and Take Care!!  

TheCatWantsOut

Well, I went to visit Mom today and found her unable to get out of bed. She said she hasn’t eaten or taken her medications in a few days. I called 911 and they brought her to the hospital. They took her vitals, did blood work, and found everything to be “normal”. So the intent is to send her back home. Basically the same as last time a few weeks ago. I guess we just repeat the game until she doesn’t wake up one time.

M1

I would do everything possible to tell them that she can't be sent home alone. I would ask to talk to the ER social worker--there is one I promise you--and go from there. I"m so sorry.

TheCatWantsOut

Thanks. Social worker isn’t here today but I talked to a “counselor”. Got them to keep her overnight for observation because she is so thin. Anyone know if the emergency room can have her evaluated for dementia?

CanyonGal

I don't know if you can ask for a hospice evaluation but they did the dementia evaluation on my mom, at the hospital.

M1

I would just keep saying, over and over, that it's not safe to discharge her home alone and that you are not able to provide care at home. She will need to stay in the hopstial three nights to qualify for rehab or a skilled nursing facility, which is likley what she needs. Disappear if you have to or don't answer your phone. Harsh, but necessary. There will be social workers available on Monday.

TheCatWantsOut

Thanks. The advice here has been invaluable. The hospital, with reasonably good intentions I believe, has been very much pushing that I take Mom to her home and become her default caregiver. Her vital signs are OK so she doesn’t need to be in the hospital, if that makes sense. But I have held fast that I am returning home to Massachusetts to take care of my daughter, so their plan can’t happen. I think it is having some effect. They are saying a case manager will call me.

At the same time, it seems the only way to really get information is to be physically present at the hospital so I will hang around for a bit.

M1

Nothing will happen on a Sunday. Double-edged sword to be physically present, truly. I know it seems manipulative and perhaps passive/aggressive to not be present and make them call you, but that's what I would do. I would stress to them that although you may be next of kin, you do not have power of attorney and were unable to convince her to give it to you. If it is obvious that she is not competent and not able to take care of herself, they cannot discharge her to an unsafe situation and they know it, they would be legally liable. The social worker will know how to apply for emergency guardianship and they can do that.

I'm sure this is quite stressful. Hang in there.

TheCatWantsOut

Well, I got a call from the hospital to let me know they arranged transportation and released my Mom to go home. Maybe I can just make a reservation for her to return in a few weeks?

GHJ

Hi Sweetie,

I've made it to 75 after an entire life of Caring. I am just now seeing your dilemma and want to join with all these dear souls who have offered good counsel and warm hugs. There is little else to add except take care of yourself above all else. You have engaged every help available, pleaded and reasoned and insisted to no avail. If the elder law attorney can offer anything, excellent..it's so complex in every imaginable way and my heart aches for you and your mother. Do not carry guilt or allow any person to make you feel bad..it is not your doing. It sounds like your mother has long before dementia been a lost and angry soul. Be very gentle and kind to yourself on this impossible journey, Sweetheart. Sending big hugs and prayers.