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

Our situation is two-fold. Mom is elderly and has my 50 year old Downs Syndrome Brother living with her. Since Dad passed away, it has been just the two of them. She has resisted all of our efforts to convince her to even look at an assisted living situation as well as to consider moving my brother to a group home. She has stated repeatedly that she wants him with her saying that it would be traumatic for him to move out. She won't even consider how traumatic it would be to him to find her injured or worse and THEN have to move out.

She'll ask him leading questions to make sure that he answers the way she wants him to.

When she had a fall and was hospitalized for over a week, our sons and nephews helped us taking turns staying with him and getting him to do various activities, go to bed and get up at a reasonable hour - all of which Mom has repealed and gone back to allowing him to go to bed and get up when he wants and watch TV literally all day except when he's eating.

Sorry I posted my reply thinking I was answering a different person's question.

I see how troubling this situation has been for you, the frustration and the worry. You probably know by now, it is important to have these discussions with your parents while they are still healthy, sooner rather than later. I think you realized this when you started having problems but it was too late by then. So anyone reading this post can now know they should talk to their parents ahead of time.

Unfortunately many elders are of the generation where mental illness meant "crazy people" in "rubber rooms" muttering to themselves or screaming like lunatics. They don't understand personality disorders and certainly don't believe they may have one. As I see it you have two choices. One, you give your mother an ultimatum that she cooperates or you cannot help. Two, you continue to let her drive you crazy. When we were dealing with my stubborn inlaws we "children" talked at length about what support services they needed, researched options, and then came together behind a decision. We "children" put up a unified front. The solution we decided upon is an independent living building. And it took nearly a year to get them to acquiesce. We made it clear that we could no longer go on being stressed, sleep deprived, etc. simply because they wanted to remain in familiar yet wholly inadequate and unsafe surroundings. Our marriages were suffering and their children would choose their spouses over them, which would limit the amount of time they would spend with us. Was it harsh? Yes, but no less harsh than what their stubbornness was doing to us. My FIL has a mental illness about which he is in complete denial. My MIL is severely ill and starting to make bizarre statements. But they live in a safe, clean, beautifully supportive environment where every staff member knows them, they socialize with other people their age daily, and receive regular visits from family and friends. They actually get more visitors now than they ever did in their old home. It was many months of hard work and they were passive-aggressive throughout most of it. We had enabled them to remain in their home for years. There comes a time when finding ways around problems no longer works. In my experience my inlaws would just come up with more problems for us to solve! It was a pathetic, desperate attempt by them to control us and avoid dealing with their problems directly. They knew they were miserable. Everybody knew they were miserable. Dinners were miserable. Weekend visits were miserable. Vacations were miserable. They started lying to each other and to us. It was maddening so self-preservation kicked in and we gave them the ultimatum: move to independent living or live alone together until one or both ends up in a nursing home or dies. You can't force people to want to live or be happy. You can only control yourself. If your mom drives you mad you won't be any good to her either so you might as well do what's best for you. I wish you lots of luck and strength.

Wow I feel for you and do NOT do what I did , move her in! Now I can't do a darn thing with her! Her mind is sound but her body is weak. She hasn't bathed in years and has gotten worse. Her doctors even try to help me and they can't do anything but suggest I tell her to leave! I can't do that! I am disabled and can't care for her like she needs and she refuses help. A friend told me about the local social services have you tried them and if so did it help?

EastEagle, sounds like my mom - doted on her son and took her daughters for granted. Fortunately, we girls understood that there was nothing to be done to change that, so we left them to their own devices. If they wanted help, they should pay for it (money was not an issue). Glad we took this tack, saved us a lot of hurt. And why should we be used just because we were female? There still is a lot of that nonsense around.

The only thing I can think off is to bring in a home health aid. Have the health aid be aware of the problem and screen her first if she can handle the situation and then watch her do her job. Make sure the home health aid has the experience and moral attitude necessary to understand and deal with this type of situation. Screening is the most important thing. All I can think of.

My mother is 84 and has dementia,COPD. She can only walk a short distance and uses oxygen. Family has moved as she can not manage by herself. Things are better but she is not taking a bath . She says that she is and won't let anyone help her . Any advice. She is stubborn and defensive

I have written about this situation before, concerning my 90 year old Mother. She still lives alone in a 3 family house - she owns it (My Dad passed away in 2009), she has one tenant who always pays his rent late. I have just one younger brother who has POA and he lives 1/2 mile away, less than 5 minutes to her house. He is in very good health with an excellent job. I am 62 years old, with a heart problem, my husband is 66 years old and is partially disabled with bad back. He was forced to retire early. He was a Firefighter and injured his back on the job, he can do light chores around our house, but can't overdo it. We live 30 miles away from my Mother, about an hours drive. My Mother has been partially blind for awhile from Glaucoma, and is hard of hearing (she went for testing, but refused to get the hearing aid). Aid to the Blind in Massachusetts sent their volunteers to her home, and she was given visual aids, such as a magnifier, etc, but refuses to use them too. My brother is very disconnected emotionally from my Mother, he does not worry about her health, or safety, he is waiting for her to die so he can get her house, work on it, and take in more rent. He has been very spoiled by my Mother, in fact on Thanksgiving we went to my Mom's (with my 3 kids and 3 grandkids) my husband and I cooked all the food. But my Mom ordered $300 worth of Italian food and pastry to please my brother - because he hates turkey. I am very attached to my Mother, and worry about her 24/7. I try to do things that will please her and give her happiness. Her Doctor told her to get an alert system. In fact, the Doctor would set the whole thing up for her. My Mother refused. My brother had promised to check in Mom during the week, after work. But he has not done that. My husband and I are expected by my Mother, brother, and other relatives to drive from our house to her house in Chelsea to attend to all her needs. I have gone to all of her Doctor appointments with her. In fact, I was told by 2 relatives that we should sell our house and move back to the city to be near my Mother. This was starting to take a toll on me, since my heart problem had started to act up and I had to wear a Heart Monitor. Then into the picture came a cousin who lost her Mother and her job, and was depressed. She was not around before, but recently attached herself to my Mom. She started to take her shopping and to some Doc appointments, since she only lives about 1 mile from my Mother. So, I thought, that's nice - it will give a little break. Over the last year, my Mom has given this cousin around $20,000 of her savings to help my cousin out. This cousin was raving to me how much she is like her own Mother, etc. To make a long story short - I finally realized - our older daughter is very cold and distant, and I also have another cousin who loves my Mother but is always too busy to see her. If I and my husband were dead, and those 2 were the only living relatives, they would be business like, and they would hire help for my Mother. They would NEVER spend any of their time during the week or even on weekends to take care of my Mother. That put so much into perspective for me. They would not waste any time worrying about her, they don't have the time, so they would allow my Mom to dictate to them in any way. As it is now, my Mother will not accept any out side help, but complains to me all the time (2 hours everyday on the phone) that she has to take a taxi and it costs $20.00. Remember, she won't call my brother, because she will not impose on his time. Only Me. But I have this new outlook and feel better. If I was not alive, my Mother would have to rely on my daughter and cousin. They are efficient, not emotionally involved, and would get others to take care of Mom. Now, I have to relay all of this to Mom. Wish me luck !!

Futurehelp, please be aware that your friend moving in and establishing a residence means that you are bound by the laws of your state in terms of renters. If you want her out later and she does not want to leave, you will have to follow eviction proceedings. Please consider a written lease agreement that spells out what your responsibilities are and what consequences of her becoming unable to care for herself are. The time to find out is not after something happens and you become a "judge judy" situation. Even if she is not paying rent, she becomes a tenant by terms of her residence (usually past 30 days or unless you have in writing the terms of her staying). Take it from someone who found out the hard way with a person we were trying to help with her 1 year old "til she got on her feet".

My wife and I have a friend who is 67. While she is healthy now the three of us
will be moving to a new house soon. I do not plan to care for her if something should happen to her. She has no family. If she refuses care if something does happen and wishes to stay in the household, what can be done to have her leave and seek care somewhere else? Or if she does become ill and want her to leave, and she doesnt want too, how do we handle this type of situation?

My mom had vascular dementia which we called Alzheimers. I only had POA for finances, not medical. No guardianship either. I did make medical decisions but she didn't need Guardianship. We made decisions as nature took its course. She was being cared for and there were no health or safety issues in the home - my home.

My aunt broke her hip at 91. She needed help before then but wouldn't let anyone in the home. After her break and 91 day NH rehab stay, it was stay in the NH or come home with caregivers. She didn't want to stay so she has caregivers 21 hrs/wk, and several over the last 5 yrs. She agrees that breaking her hip, as bad as that was, was really the best thing that could have happened, because she has help, and now a ramp.

She falls occasionally because she tries to bend, stoop, or reach and can't. One of her caregivers asked, after a fall, when was I goibg to put her in the nursing home? I said she'll put herself in one. I don't have the power. Hopefully it won't come to that. I do have the power to make medical decisions if she is unable. But she is very good. If I say she needs to go to the doctor, she goes or he comes to the house if weather is bad.

For the last five years my husband has been acting strangely, and now his behaviour is getting progressively worse. When I first noticed the changes I begged him to mention it to his doctor, but he said that nothing is wrong with him
and that I'm trying to make him crazy.I contacted his GP in 2010 (after I'd returned from visiting my Mom in the Caribbean) and asked for him to arrange an assessment for my husband, as he was making accusations and seeing and hearing things that did not exist. He promised to check him out on his next visit,
when my husband returned from his visit, his words were Dr so and so gave me a good checkup and there's absolutely nothing wrong with me, and if I can get to his office and not get lost I am fine.He has since change doctors, 2 years ago he started seenig people coming into our home and stealing his records,
clothes, tools and messing with his stereo equiptments, mind you these things are ancient. I went with him to one of his appointments with his new GP to voice my concerns, he told me that because they had found a menengioma
on my husband's last MRI he wanted to get to the root cause of his headaches, then he'll arrange for him to have an assessment. I'm at my wits end as nothing has been done and my husband is getting worse, telling people that I'm trying to poison him,and there's nothing wrong with him My husband is 85 and I'm 60
Any suggestion would be helpful.

I appreciate the feedback. However, we have had council on aging give her a visit. She was very guarded on that visit. Bought taxi vouchers, but,doesn't use,them. She has stopped calling Renee at the office, but calls numerous times after 4:30 now. Renee is starting to limit answering the calls. I have put the offer to her if she needed help. I have talked with the priest in her parish whom she is very close with. I am trying.

If you really want to save your daughter from her aunt, have your daughter change the phone number so the calls go through you first while she is at work. "Sis, I'm so sorry, but we've found out Renee will lose her job if she keeps getting so many personal calls at work. She can call you on her lunch break and when she gets home to see if you are OK - I'll take the calls and handle emergencies when she is at work and can get her if it really, really can't wait." And, ideally, make attention non-contigent on her calling either of you - you call her maybe once or twice at a regular time no matter what.

Admit to her that the part about her falling making her a ward of the state was a bit of an exaggeration, that you are just worried about her and want her to be careful. She KNOWS you want to take her independence away from her, and she wants it to last as long as it can. It sounds like she stopped driving which is good. Encouarge Renee to say no to being the taxi driver when she really can't do it, though it is an advantage to having someone in the doctor's office with her so more of the truth might be told. There are ways to modify things and prevent falls that could be done at home if someone will permit them. Maybe if she feels less threatened she would let an occupational therapist in the place and see what could be done..

My sister in law is 65. It has many medical issues. She is t1 diabetic but seems to take care of that ok. She also has spinal stenosis bad and has fallen a few times. Has a broken disk from falling. She barely weighs 105 pounds. About a month ago her doctor it was not safe for her to drive. She's already had one minor accident. She calls my daughter at least 15 times per day at work due to anxiety. She never married and will only call Renee. We had council on aging give her a visit, but she was very guarded during that visit and refuses assistance. She bought taxi vouchers but doesn't use them. She think Renee can keep taking time off of work to take her to appointments, which there are many. I told her if she keeps falling in the house the state would take her decision making Away from her, so now when she falls, she doesn't tell anyone. Three people has told her she shouldn't be living alone and she refuses to listen. She had an infusion a couple of weeks ago for her spine and told me since she felt better (one day later) she decided to get on her hands and knees and wash the floor.
She's a heavy smoker In her house and spills everyone she puts her hands on. How do we get her help or move her into assisted living she she says "no" to everything reasonable??? Please help my daughter before she has a breakdown.

Many times that's all we can do. Wait until they make up their minds that they need to do something different. Often, when no one is trying to make them change, they will (I'm not talking about dementia - just older people who value their independence - they have a point).

It's about rights and sometimes that means a right to make the wrong decision. We can hope that the event that changes things won't be too horrible. But if we say that we'll help when they want it and they won't do anything different, sometimes we have to live with their decision.

Take care, all of you. You're doing great!
Carol

The guardianship thing is tricky I think ... that & power of attorney etc.. is different in every State... at least I know in every province in Canada. I have power of attorney for mom -- there are 2 kinds , I have the one that takes effect if she should ever NOT be of sound mind, so bills could be paid, her house could be sold etc... I would NOT get in a 'pissing' match with her over SOUND MIND - she would become like the 'exorcist' , unless it was totally noticeable & her Drs. etc... agreed. (she CAN be loving & nice when she wants) I know it won't get better, I also know I am doing all I can that I know of for now

WoW, I read with interest & compassion the posts above .. I can relate! My mom is 82, dad died 2 yrs ago, I am an only child living in another city (my husband has his own biz and relocating is not an option) Mom is and has always been controlling, a perfectionist (2 go hand in hand I find), scared to travel (lack of perceived control) Her world has become VERY small, which happens to seniors often but with NO one there to check on her, she has a 1900 Sq ft Town house ( 2 stories) that she won't move out of.... she says it's too much, she complains all the time that the bus is full, it's raining or its too hot and I have compassion for her but she wont listen to me or anyone at all when it comes to talking about moving - she believes there is nothing (I say 'If you believe there is nothing, then there is nothing... how about looking at MAYBE, there is ... what would that look like? What kind of a place would you like, what are the must haves?? She will have none of it. She loves me, but she [pushes me away because she doesn't want the sadness f when I come and then have to go ... actually I know it would be the same even if I was there living in the same city. She pushes away ANT help that is offered to her , in any way .. I get out every 2 mos. (all she'll allow me to stay with her and see her ... control again remember .. ! I have ways to talk around it but basically 2 mos is the most, we talk on the phone weekly - if I call more, she'll ask why I'm calling so often and say she has nothing to say ...
She has not been a part of my life for over 20 yrs. now and she thinks she was the most hard done by -- "I should KNOW she can't travel" (can't... won't - there is help for fear of planes etc..) We get along well, because I have learned how to de-escalate confrontation and she has learned, over the yrs.. that I won't get sucked in to the anger & drama.
She is of sound mind, sharp as a tack - she is depressive and always HIGH anxiety .. from a highly dysfunctional family upbringing.... I have learned through personal development to move to the positive and change my attitude. She hates hearing that she has choices ... Lordy, if you want to get a MOUTHFUL tell her she has choices ... (I say, you might not like them all, but you have them !) Anyway... she still stays in her huge townhouse, getting worn down, taking the bus (2 buses) to the mall for groceries, dentist, Dr. etc... At least she continues to see the Dr.... I have me them and they know how she is... it's challenging, I know unfortunately something will happen to her before & she'll HAVE to make a move, like another person said and I have said to my mom & her Dr. -- 'what you value the most is your independence, you'll have it unexpectedly taken from you UNLESS you are proactive instead of reactive ! (she won't even allow any help in the house that she doesn't know - like me or a neighbour - but they can't do something nice for her ... oh no!) Signed, VERY frustrated in B.C. , Canada

There is a line between letting people accept reasonable risks and refuse what is "best" for them from someone else's perspective, and not letting them harm themselves or others out of sheer inability to judge what is going on and how to deal with it. Someone who is not managing as well as they used to at home, but OK with the help they have available, maybe lonely and "could be happier" in a facility with others and with activities is the former; the formerly fastidious housekeeper now living in a pile of unpaid bills and hoarded trash with the oven or the range left on more often than not, no food fit for human consumption, mismanaging their meds, and no idea what to do and what not to do if the phone or doorbell rings is the latter.

When you get guardianship for the loved one in the latter situation, you can still respect any and all choices they are capable of making - like what to eat, what to wear, what activities to participate in, and respect their wishes on any limitations of medical care. And so many of our loved ones are somewhere between those extremes, so it is very hard to decide what help to provide whether they want it or not, and what to hold back on until the necessity is a greater force.

Thank God for this blog. I am taking care of my mom. Dad passed away in Sept. 2011. She refuses care all the time. You have great ideas I never knew existed.
I will take these into consideration. My mom is able to get along at home but there are stairs, and I know she will have a fall. I have been trying to get her to let me make some arrangements about healthcare and a Durable POA for her. No luck.
She now has a pacemaker, (along with a moniter to take readings) and she has been abusing her medication for pain.
I think she has panic attacks, she claims they help settle her. However they make her dizzy. Last night there was a false call to 911 because her heart moniter was taking a reading. The EMT had never seen one of these and took an ekg with all her vitals. She was fine. She signed the release for care and it was all over. I set my numbers with the information along with the Doctor's number on the information for the moniter. I ask her why she did not give them the Medical Device ID card she had. O, I forgot, was all she said.
My question is how many times can this happen before they suggest she needs assisted living or skilled care. My dad was a veteran, so this idea does help.
She has no life insurance, but has medicare, and will be 80 this November.

Darned if I know. Is the patient insisting on walking when they are too likely to fall, or supposed to be non-weightbearing due to a fracture? Can they mobilize themselves in the chair and is it comfortable? If they can't push with the wheels, what about it being low enough to foot propel? Could they be helped to walk until they are tired and actually want to sit down?

How do you handle a patient who has to be in a wheelchair, refuses and kicks the caregiver when she tries to put her in

How do you handle a patient who has to be in a wheelchair, refuses and kicks the caregiver when she tries to put her in

Hi all, I have read all your posts and feel for you all. I guess my position is different in that I am 62 years old and this comment is coming from my perspective. I presently live with my daughter (in reality she lives with me in my home) and she is 24 years old studying for her Masters. I am still working and very mobile however I know there will come a time when I am not so mobile. I am an insulin dependent diabetic and have suffered two mild cardiac events.
My daughter has a Power of Attorney that can be activated when I am infirm and cannot make financial (or other) decisions for myself. I have a Living Will that determines the type of management (and where!) I want.
After seeing my grandmother, and mother in law (as well as older relations) in Aged Care Facilities (some bad some reasonable) I have clearly made known my attitude to being placed in a Nursing Home.
Regardless of my health needs, I have placed my dignity and my choice above these considerations and yes I do know that it may have a negative impact on me. However, no one lives forever and when I do die, I plan to die at home with all my photos and cherised memories around me in comfort and in my own clothes at my own pace.
My daughter understands this position and exactly why I hold it and she will uphold my wishes, even without the Living Will (Enduring Power of Authority) in place.
There is no guilt on those parties that respect your wishes to stay at home and not be placed against your will in nursing homes. By all means make suggestions and assist where possible but allow your elderly or frail relatives to have their dignity and final choices about their life.

Hi Seattleite,

I've been thinking a lot lately about the rights of elders vs. worried adult children.
The dignity of the elder should be considered no matter where he or she lives, and cognitively sound elders should be able to make decisions.

While we have wonderful facility care in my community and many people choose the safety and social environment of a quality assisted living facility or even nursing home, that isn't the right place for everyone.

As you mentioned, sometimes adult children would far rather have their parent "well cared for" and in a situation where they didn't have to worry so much. That's understandable. However, that may not be what the elder wants.

We all die. Your mother knew what she wanted and how she wanted that to play out. Bless her heart and her spirit. I'd have liked to have met her.
Carol

This is not to say that there are NOT cases of dementia in which some kind of institutionalization becomes necessary-- to try out different living arrangements than the one the dementia-victim seems to prefer. Of course they mustn't be in a condition to endanger others or burn down the house. We need to be skeptical too about our own wish that IT ALL WERE JUST EASIER. In a sense, prisons are easier than addressing the complexities of individual cases... But in all cases their ORDINARY DAILY HAPPINESS has to weigh in as much as the feared final event---ordinary daily self-determination and tiny comforts every bit as important as how long some machine will keep them cranking out breath in a clinical environment. A nourishing daily life--(for my mother that meant no egregious canned music piped along the hallways, no refusal to let her take a bath when she wanted one, nobody forcing her to eat things she hated, nobody ELSE's idea of art on the walls, or the sight of a blank mown lawn instead of the exquisitely cultivated garden she so loved and made sure was cared for after, at 90, she couldn't do it herself any more-- such things (what they see, eat, hear and do) make up the very climate of their last months and weeks on earth. It's hard to develop a new life-- it takes energy they don't have. In the end, the hours of extremity are all difficult, no matter where-- but LIFE LIVED up to that point needs most of all a peaceful kindly setting--- and consolations not so much from things as from responsive and respectful surroundings and people interested in their life-stories and life-knowledges. As a nation we need to develop a system of intergenerational community-living/hospice settings where the clinical mechanisms aren't so obtrusive or blindly-automated.

My mom died on Xmas day 2012. For the last ten years of her life she was extremely firm and unwavering in her wish to stay at her home. From age 75 for the next 20 years she expressly wanted to stay in her own place-- mentally she was very clear until the last, and got her routines and consultants into place--though physically very hobbled by age and increasingly one suspected the return of cancer, this time to her liver-- but she was preparing herself to go in the environment she preferred and she was realistic, I think, about how things would happen. My brother who lived 3 hours a way and whose conscience imposed on his own family a lot of grueling commutes to make regular visits wanted her to move to a retirement/aging facility near him-- one with nursing care wings. She was adamant in refusing such a move to the end. (though it would have assuaged the worries and sense of guilt in her children). But she had spent her most active and able years sacrificing everything for her children-- the first died soon after birth-- her husband was always gone, and then dumped her in middle age. Only after we all left did she pull herself back up into a good last 30 years of freedom, and pride in her own agency-- she created the conditions she had yearned for all her life. I think the single thing that made her want to keep living was her pleasurable sense of independence and self-sufficiency-- and as I age (I'm now 66) I feel it too. There's nothing my mother would have hated more than to be moved to a nursing home-- I think to be forced into the nursing-home level of institutional life-- its schedules and authority over small matters of daily life-- would have killed her much sooner. As it was she had only a difficult last two days, once the jaundice set in and worsened. The hospice worker with whom she had developed a respectful and affectionate relationship (and had her heart set on, as last companion at the very end) happened to be out of town on Christmas Eve to be with her own family-- and my mother's sudden slippage out of coherence made the substitute caregivers insist on dragging her to the hospice (kicking and screaming) where she was sedated and where-- though it's one of the best hospices in the nation-- everybody was very busy and distracted-- so that despite the number of strangers that streamed by her bed, nobody seemed to notice she was having a shudderingly bad reaction to the morphine. (Once I arrived and pointed it out to a doctor he was able to change the med to dilaudid which, as he sympathetically put it, "does the job better for some"-- certainly it seemed to be better for her-- but what do we know, from the outside? The dying one just gets less able to thrash or scowl. As Milton puts it, h*ll is one's own mind.) I sat beside her through the long afternoon and night and morning of Xmas Day. As her breathing seemed to ease and get quieter and more regular I recorded some of it on my cellphone just to remind myself that dying can sound peaceful.... and then it stopped. I don't regret our conceding to her the right to make her choices about where, in the end, she'd want her final days to be-- familiar surroundings, not the sleepless bustle and stream of strangers (however well-intentioned) that invade life once you're in a hospital or nursing home or hospice. Our parents were called on most of their lives (as parents!) to put forth all-but-superhuman efforts and learning from the half-century of challenges in adult life-- these are people with long experience doing jobs, families, judging the temperaments and need of others, and finally free to direct their own fates-- able to have a good sense by then of the likelihoods of happiness in various settings. They aren't dreamers any more (as we are trained to be by culture and comfort, in youth and middle life). They get pretty realistic. I'm so grateful we were able to avoid institutionalizing her until the very end-- and then only because of the quirk of the date. She came in to the hospice on Xmas Eve, was very distressed and agitated, increasingly inarticulate-- I arrived about 8 hours later from a continent away -- she recognized me when I leaned close enough to her one open eye, whereupon she laboriously dragged her head to my hand with an iron grip-- I know she knew I was there. I stayed with her to the end-- she died on Xmas Day. By noon she had probably sunk beyond all possibility of sensation, and around 2:30 or 3 PM the breathing ticked away to silence. Despite the awful, and awe-inspiring, sorrows of these passages, in whatever circumstances, I'm still so grateful we were able to oblige her and not force her out of her home earlier than she wanted to go. People call such elders (who insist on NOT going to any institution) stubborn-- but the freedom they worked all their lives to achieve was the freedom to make their own decisions as long as humanly possible-- despite what other people think. In the cases of women who give up so much of their lives to care for others, their few decades of freedom after the children leave home means a lot-- the peace and self-direction they finally achieve means more to them than we imagine. I want to raise a voice for their right to define their ends, insofar as possible-- to choose their own consequences (none of the consequences is easy, and they're the ones who will face those consequences most directly). Our own sense of guilt and worry about them should not trump our understanding that their peace of mind will be greater if THEY CAN CHOOSE for themselves. She knew that by insisting on staying at home she might have a stroke and fall and die alone-- but preferred to choose that kind of death at home, rather than change her life so radically to live among strangers and then still die (there's no escaping that) in a place that would unsettle her. Death is no cakewalk, wherever it catches up with you-- but by 80 or 85 or 90, one could be credited with a decent insight into how one wants to meet it, and be granted the freedom to choose-- our worries and inconvenience have to become secondary, as hers did, during those 20 long years when she cared for us.

Wow, reading this was enlightening. Mom 83 dad 84 will not let a health care provider in the house, not eating healthy, no showers for mom he hand washes her, she is in the hospital now with blood clots in both legs because after she fell the last time she developed swelling in her legs and feet. I happened to go over to wash her hair with a wash cloth mind you and saw her legs I got her to go the Dr. She has had many tests and more to come. We will be back to square one again if they send her home. His mind is going he can not remember to give her, her pills, he can not remember her Dr. appointments. He did nothing about her legs swelling. The siblings out of state are glad they are not me. They are no help at all even though they understand how bad it is! My parents have used me, put me in the middle. She does not want to ride in a car with him. He will not force her to do anything cause if he does she whines! I have told my siblings they had better have a plan because I can no longer stand by and watch this train wreck. I have high pb am on med and thyroid problem. I watch my only grandchild who is 17 months old three days a week. I have been the sole child being there for my parents for ever. Now I can not continue it is going to have to be that they will not allow a visiting nurse in, she will not wear the compression stockings I bought. I told my siblings this situation is not normal, safe or healthy. Sounds hard but unless a Dr. sees them not fit they will just die being stubborn and mean. I am a facilitator for a Care Givers Support Group all the professional help is good when it can help out a loved one. For me like others it is a very hard place to be!

I come here for support and answers of both sides of the coin. I was in a catch 22 sense mother is very strong minded and aware. She doesn't understand completely about health insurances and what it supplies. I help with that. In the course of doing that, which takes my having mother call, and then she gives them permission to talk to me, the insurance worker asked if I wanted a ROI sent to the house. And ROI gives you the right to sign with the insured's permission when they can not sign for medical treatment. This includes the need for home health care and Nursing Home. It does not make you responsible for the bills. Talk to the insurance worker on all the treatments and providers that they use and pay for to save yourself needless phone calls hunting down answers.