What do you do when elderly parent refuses needed care or legal considerations?

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I am in a real pickle. My mom has been told by her doctor, and most recently by an emergency room doctor, that she needs to be living in a facility that provides some level of care or in a living situation that does not involve having to climb 2 flights of stairs. Since her hospitalization in June, Visiting Nurses has provided care in her home, and she has been considered homebound. In any case, my mom will NOT agree to do anything (set up care with someone else for when they leave) or make arrangements to have various things done (groceries, laundry, taking out trash, etc. Her nurse, her social worker, me ... we're all broken records and she won't listen. She hung up on me Monday because I was telling her something she didn't want to hear re: hiring help to get to one of her doctor's appointments or risk a fall (which could negatively impact her independence and land her in a nursing home--which she doesn't want).


The nurse told me today that they have never run into a situation like this where someone just absolutely refuses help or is this stubborn. My mom is of sound mind, but is making decisions (as I've pointed out to her) that don't support the independence she still wants. She keeps saying she won't go into a nursing home. I am an only child, not married, and there is no other family on her side to help. I'm it. And it is not an option for her to move in with me or near me. Her needs exceed my ability to meet them, and I know what my limits are. I am willing to help, provide information, facilitate care, etc. but I am unable and unwilling to take on full-time caregiving in this situation.


So my question is twofold:


1) How would you handle this situation? And if you have had to deal with it, did you have to do to get your stubborn parent to take the right action?


2) At what point would a situation be considered neglect (by an adult child) under the law if they are aware of the unsafe situation, but the senior refuses to do anything on their own behalf or spend their money to make needed changes.


I'm at my wit's end and at the end of my rope. I don't know what to do!!!!

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When I read your experiences, support and love for other caregivers I just think what an honor it is for me to be part of this group. You are so experienced and wise.

I needed to wait until my mom had a fall more frightening to her than many others before I could get her into the care she needed. When it happened, since I was with her daily, I was ready to pounce and "she" made the decision to join my dad at the nursing home where he lived just blocks from me. I hated waiting but knew Mom would resist even though she was unsafe at home. She had a personal alarm, I did her shopping, light cleaning, took her to appointments, helped make special lunches for her friends and anything else I could. However, I had young children at home and other elders needing me. I couldn't be with her 24/7.

She wasn't in the fix than many of the stories on this page talk about, however the idea is similar. Sometimes, all we can do is wait until they scare themselves into cooperating at least for awhile - then make the move. It's agony waiting. The next step (setting up care and the adjustment) isn't exactly fun, either. But often no one - doctors, attorney's, social workers, family members, friends - can get cooperation. The advice you have for one another here is life sustaining for many.

Keep helping each other, caregivers. You are the best,
Carol
Thank you all for your responses!

Since I posted this original question, I had to move my mom into assisted living. She fell a week after I posted this question, and that was the wakeup call she needed.

A few months back, a retired nurse told me that if she was ever in the hospital to remember this fact: it is easier to get someone into a facility from a hospital. So when she ended up in the emergency room after the fall, it was determined that nothing was broken.

However, I pressed for more tests to determine the cause of the fall (e.g. stroke, etc). Fortunately, they ended up admitting her for further evaluation. And after that, I had access to a social worker and a discharge planner there at the hospital. I had some long, detailed conversations with the medical professionals handling her case as well. Long story short, they repeated the same thing to her that I had been telling her: she was no longer safe to return home without assistance. My understanding is that discharge planners/the hospital cannot release a patient into what they understand as a dangerous situation. So her time ran out at the hospital and they had to place her somewhere. She dug in her heels up until the last minute, but we finally convinced her that she had no real choice other than to go to the facility where she now is staying.

She now has admitted that she is relieved not to be in her old apartment, but it having problems adjusting to the assisted living facility. She wants a more independent living situation, but I do not necessarily agree with her assessment of her abilities. Even with her in assisted living, I still am overwhelmed with her needs. While I'm not doing laundry, grocery shopping, I am still having to go to the store for her quite often. And I am in the middle of moving/packing her apartment. She was a packrat and a collector, and the job seems never ending. A whole new set of issues as she doesn't want to get rid of anything and can't have all her belongings with her.

But at least she is now out of the dangerous situation she was in. My advice is to remember that fact about hospitalization: that it is easier to someone into a facility if they are already in the hospital. And it allows you to draw on the resources that exist there--discharge planners and social workers who can help convince an elderly person that they are no longer as independent as they think they are, and that they need to be in a facility.
Dear Jenny, good questions! What do you mean, "unsafe"? Is she a danger to herself or others?

The only legal advice I can give is what I've done: obtain Guardianship through Probate Court. Then you have the authority to make decisions for them. The only problem with this is, it does nothing to facilitate compliance. Our loved one can still refuse care. But I cannot answer your question regarding neglect. It would be a good one to ask your County's Commission on Aging (Area on Aging in some counties). There are also free Senior Legal services available in some counties. And Senior Centers often have a Social Worker on staff, or an attorney who does free counsultations.

My mother is stubborn, and argumentative. Together, we have seen attorneys, Social Workers, Physicians, Specialists, Pharmacists, etc. She does not follow doctor's orders or recommendations. Her Primary Care Physician and Psychiatrist have both told me to "remind her you are her Guardian," when trying to get compliance. I am at a loss myself, because they should know that holds no weight with mom. Ha! If only it were that easy. Sometimes mom does what is necessary, else she'd really be in dire straights (or straits). But sometimes she doesn't. She takes her meds, but craves narcotics. And she finished her Chemotherapy treatments. She refuses to see certain Physicians at some times, though. I have called them for advice. They say, "try to be persuasive, and work with her." I don't know whether to laugh or cry, and want to ask, "Have you met my mother?" (when I know they have). But they see her for short office visits, and don't know what it's like to deal with her day in and day out. WOW! To whom can we go for help?

So I go to Support Groups, talk with Social Workers, Lawyers, State and Local Police and Sheriffs, etc. All acknowledge how tough it is to deal with someone like this. But none have magic answers.

Just today, I met with my county's Day Care & Respite expert, again. We touch base whenever possible. I've been talking with her for over a year. She told me that mom will just have to fall, or break something, and be hospitalized for three days, in order for Medicare to place her somewhere. At the rate my mom is going, she will do this to herself, or her health conditions will force her there. I just make sure she has the basics: food, shelter, clothing, medical care, a little spending money, and a social outlet. My mom's not lacking for any of these. In fact, I go way beyond...and actually pamper her, often. I know her likes and dislikes, and try to please her. But I can't make her do things against her will, even if they are in her best interest. Fortunately, she has lots of freedom, and can still get out and about and enjoy some limited activities with friends.

I don't know what more to tell you, other than make sure your mom is safe. Clear her home of tripping and fire hazards. Make sure she and her home are "clean" and dry, and reasonable maintained. If not, you could ask the Department of Human Services to do a "well being check" on her (evaluation of her situation). But things usually have to be really bad before they will step in. Call around, and ask your questions to different entities. And don't worry. You're probably doing a very good job of looking after your mom. The most important thing is to see that her basic needs are met. Take care of you, as well.
My situation involves both my grandparents. Gramps is 86 and has always been active; Granny not so much. Gramps’ bladder ruptured in early October and almost bled to death. It has left him weak and incapable of managing by himself. He gets frustrated, but is eager to do his physical therapy and insists on doing small things that he is capable to doing. He is willing to accept assistance. Our problem is Granny. She refuses to allow home care for Gramps “I’m his wife; I will make that decision for him!” The problem is her decisions or indecisions are going to kill Gramps. She does not want the chair transfer for the bathtub, because she believes Gramps needs to take showers. Their shower is too small to fit two people in and Gramps cannot stand for long periods of time by himself. We pick up the rugs, she puts them back down. (She uses a walker to maneuver through the house, though she does not need it.) She refuses to exercise and has made herself unstable. She demands that the doctors come to the house Monday and remove Gramps’ catheter because she believes it is slowing him down. She does not want the rails that were installed next to the commode. She does not want any equipment in “her” home, including his wheelchair. Personally, I believe there are two reasons for this. 1) she does not want to admit that there is a need for the added assistance because of pride. 2) Granny has always hated any change. Everything has to sit in the exact same place, facing the exact same direction.

She keeps saying she has always taken care of Gramps, which is not true. He has always taken care of her. Granny gets mad and refuses when any family member tries to talk with her. “Oh you don’t know what I go through with Him.” is her standard comment. We love her dearly, but know she is a “Drama Queen”. She makes herself the center of attention. She hates it that Gramps has taken the priority with the family and that she is not in the lime light. She refuses to do what her doctors recommend.

Gramps wanted to go home from HealthSouth Rehabilitation. The family and the doctor’s agreed his mental health would improve, and in turn he would regain his strength. A physical therapist would continue to come to his home and he would need a visiting nurse. We all felt a live in care taker would be best. Granny refuses to allow a care taker, even though Granny is incapable of getting him out of bed and wheelchair. In fact she told HealthSouth and the family she had called and arranged for a visiting nurse, which turned out to be not true.

He wasn’t home three hours and she had already lost patience with him, threatening him that she would have him placed in the hospital if he did not eat. He eats, he is just very slow. These types of comments upset him. She has the family at its wits end. Are there any suggestions to help us? We know it is Gramps’ house too, but he doesn’t have the strength to fight a battle of wills with her.
I have to echo the "Wow" from MickiMc & I have to echo jennygc's early suggestion to remember the hospital stay! My neighbor passed away 2 years ago this month leaving his wife, suffering with dementia, alone & about to turn 80. Their only plan was to "die at home". This is a great plan for whoever passes away first, but is miserable for the remaining spouse. They had no biological children together & the daughters from his first marriage expressed no interest in helping their step-mother ... though constantly assuring me of their great love & concern for her. Her closest living relative is her sister, suffering from Alzheimer's, who is cared for by their niece & my neighbor did not trust the niece ... so she asked for my help.

I would give anything to have known what I know now ... two years ago. Unfortunately, this is a "trial by fire" journey. As much as we can "join their journey" ... who joins our journey? I found this blog tonight as I was furiously trying to peel away another layer & my heart was breaking as I read EVERY post and at the same time I could relate to EVERY post (except for the one questioning motives).

While we were working to probate my neighbor's (the husband), I cannot tell you how many times she sat there & asked, "Why couldn't I have died first?" This was heart wrenching. This couple meant the world to each other & though his health was in decline, he did not have to pass away when he did. Unlike most of you, I am not the family member, so I feel like I am getting a trial run for when it is my turn to deal with this for my mother. I had no idea when she asked for my help that I would wind up here, but her mind went downhill so quickly, it all happened so fast ... here I am. I would not change a thing except to maybe have advocated for his children to step in earlier. It is tricky as a neighbor, on the one hand you hope to live in a community where people notice if something is "wrong" & at the same time you want to respect other people's business. Many times over the last 7 years ago a few of us have asked one another, "Where are his children?!?" But we never asked them, we would never have wanted to insult them.

I am not a medical professional, but it is my very strong suspicion, that if they had moved into an assisted living facility 10 years ago, despite his failing health, he would still be alive & she would have a social support system in place so that when he did pass, she would not be alone.

In the first year, my neighbor had 3 trips to the hospital, but she was still "fine" to be at home. I was beginning the research of assisted living merely from a financial standpoint, but could never get her to visit any place with me. Since changing doctors & improving her care, there have been no trips to the hospital in the last 9 months ... and here in lies my problem! If I had known last June what I know now, I would have scoured this town to find any room available & we would not have returned home from the hospital.

I began part-time home care help in November 2010 when I realized just how much I was doing on a daily basis & that I was going out of town for Thanksgiving and there was nobody to be "me" while I was gone. This was met with the same resistance that assisted living was & is being met with, but she immediately loved the company & they were getting her out of the house. After an incident where she accidentally drank bleach, the part-time care was upped to 7 days/week, but no overnights. After the last hospital stay it was suggested that I set up a baby monitor to hear her across the driveway in case she fell or had an "accident" in the middle of the night. I was driving home considering this "care option" and decided that that was not an option worth considering. So, 24/7 care was set up just while she convalesced from the hospital & the plan was to go back to 7 days/week when she got "better" ... well, we never left 24/7 care. It is not safe for her to be left alone. The total cost for care in 2011 was $105,000.

When the 24/7 care began I let the service know that this was not a level of care that could be sustained long-term, but that with some life insurance & a CD cashed in we could make ends meet until the end of the year. Ever since I informed them that the move to assisted living was imminent, they have tried to come up with alternative plans allowing her to stay in her home. I understand that this is a huge hit off their bottom line, $10,000/mo is nothing to sneeze at in this economy, but I was honest & upfront with them from the beginning.

What has me searching the internet tonight is help on potential personal liability. They informed me that they attended a conference today & learned "new things" and that my neighbor could make things difficult for me if she has not been officially declared incompetent. I have not had her officially declared incompetent because I have wanted to spare her that last indecency & it has not been necessary (I am both her Durable POA as well as the POA for Healthcare). She is scheduled to move on Wednesday & now I am going to get to spend my weekend researching yet another layer of this onion called "senior care". The thought of having to reduce her care & run the risk of her getting hurt just to achieve another level of care is ridiculous to me, yet that is how the system islet up to work. I would feel horrible if she fell & got hurt, or worse, just to save the cost of overnight care.

My advice to anyone & everyone reading this steam of posts is to talk to everyone you know & tell them to talk to their friends & relatives NOW while healthy & set the plans in motion. It is not a fun or easy discussion to have, but it is a lot more fun to have it while we can advocate for our own care. EVERYONE I know knows someone who has gone through what we are going through & NOBODY wants to go through that (or put anyone else through it) ... yet, somehow we all get there because we all get older. My family sat down a few years ago & put together a care plan for my mother for "when it was time" ... based on what I have lived through for the last two years, I am recommending we sit down & re-evaluate that plan with my mother.

I am concerned about the not being able to "force" anyone to go if they are opposed to moving ... has anyone successfully navigated these waters since this communication stream began?

PS - the VA benefits are amazing, though tricky to navigate, my neighbor is eligible because she is the spouse of a veteran & I knew nothing about them in the beginning.
@ lamme, you mention my attitude in your post. Each caregiving situation is very different, and it is impossible to know exactly what the other person is experiencing. Judgement in these forums seems counterproductive as people come here for support. Thanks to this forum, I was able to find a solution that ultimately was acceptable to both my mother and I. I do not know your caregiving situation, but I pray that you also find the solutions that you seek here. It is a very supportive community. God bless.
Annlidiot is correct, pardon me. If your Mom is of sound mind, then Guardianship is out of the question. Mine has been deemed incapacitated, but that is now being questioned. If she clearly wishes for things that are not in her best interest, and refuses to follow doctor's orders, then how can they say she is of sound mind? This is perplexing to me. More will be revealed, as we are working with Geriatric Specialists, Psychiatrists, Counselors, Clergy, Attorneys and the Courts. Wow. Even they cannot force compliance!

My Dad was a danger to himself and others, and unable to control himself, and could not be controlled. They literally hauled him away and locked him up. Still, he refused their recommended medications. So, a Judge imposed, by force, administration of said prescriptions to be given intermuscularly (by strong nurses and a needle-literally by force). Dad's Alzheimer's type illness has progressed to the point he sometimes takes his medications, and sometimes refuses them, but for the most part, his behavior is more controllable (on the meds). He is doing much better, and a much better facility, and only an occasional struggle ensues. Thankfully, the burden of responsibility is on them, and not me.

When Mom's Physician suggested I take Mom to the same facility, I resisted, because she "wasn't that bad." However, she is becoming an danger to herself, and we are looking at alternatives for her care. But the bottom line is this: they cannot be forced against their will to comply with anything, unless they threaten the rights of others, and are such a danger to themselves that a court must intervene. And even then, they can still resist control, to some extent. As we've been told by a Geriatric Specialist, Guardianship is no magic solution to get someone to comply. Unfortunately, we've had first had experience and understand the meaning of his caution. I understand the pickle situation, and not all pickles are sweet.
Dear Jenny,

if your mom is competant and of 'sound mind', then you will have no luck with the conservator or guardian route. it will be a dead end and probably damage your relationship with her. The problem you described is that she is digging her heels in and asking you to do,do,do and you can't do forever without help and understanding from your mom. It sounds as if you like her and need the least restrictive, most productive way of handling the problem. From what I hear nobody wants to go into a nursing home; and your mom probably would do ok if she had help other than you to keep her in her place.

Probably the best thing to do depending on whether or not she has resources is to hire a geriatric counselor who has a track record of being able to create a relationship and dialoge with her / his clients. That person can also be your sounding board on which way to go. If you have no money, ask the hospital social worker for a referral to the right agency in your area that handles social services and aging issues for seniors Value your relationship with her, work on finding the right person to open the lnes of communication and whatever you do don't feel bad if you have to ask for help. Remember, only you know your own feelings and situation - eveyone is different. When you have reached your limit, summon up the same strong "NO" as your mom & you will be ok.

Its important to realize though, that when you sit down with someone to discuss it they are focused on you, and your problems, it might be more helpful to get that one to one help first and then do the reality check on aging sites.

Good luck to you & we are all amateurs here except for dear Carol B......you need a pro!
It has been some time since I posted this original question. My mother has lived in an assisted living facility for two years. While she misses some of her freedom, she also is much safer. And all things considered, she has adjusted quite well to her new situation. Thank you for all of the support and suggestions here. I hope that others continue to find the answers they need to similar situations they are facing.
Here's another thing that I will add. The bipolar does not get better with age—particularly if left untreated. And while the behavior may be difficult to deal with from your sons' perspective, a lot of it may be due to the fact that their father is not receiving proper treatment. Elderly are vulnerable, and your sons' father sounds like he is especially vulnerable with his untreated condition. There may be no love lost between them, but if he is truly mentally ill, he cannot help it. And yes, I have personal experience with this. In some ways it is easier to understand and have compassion for someone with cancer or heart failure than it is for someone who is aging (and not so well) with a mental illness due to the behavioral challenges that caregivers have to deal with. But their father is just as sick as someone with a terminal illness if he is not receiving treatment for his bipolar and if he is unable to care for himself. Even more reason to call on professionals to step in and help.

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