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We, as a society, need and easier way to check out when the time comes == rather than prolonging the suffering and dying.
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Could your brother rent out rooms to get some income?
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Well.... we all felt we were being told to get stuffed by my mum went she went to that home when there was no need.
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mom suffers from many physical problems and also self-neglect. when she is in dire pain she won't call the dr; won't take medicine; what can I do. i live in NJ
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i would appreciate all assistance
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Hi, i'm a 12 year old kid and my great-grandma has Alzheimer (sorry if I spelled it wrong) I suggest you send her to a nursing home even if she doesn't want to go. She needs help that you are not able to provide so just send her to a place that can provide help.
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we are in a very similar situation and just waiting for the next fall or accident to occur and hope it doesn't involve anyone else (right now mother is not driving herself anywhere as she is recovering from the last fall --nothing broken, just bruises).
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My father is 81 years and is very frail in hospital. He will need help and assistance because he has had 3 near death experience one after another. My mother is obviously stressed out, and is recovering from a complete hip replacement and is suffering from delerium. Each time my dad has been in hospital she has fallen out with everyone over nothing really and made everyone feel so bad and guilty as if we have done something to her. I do not know what is going to happen when my dad gets home from hospital because my mum has shut us all out of her life. My daughter and I went to visit her to see if she was okay, she said I have not fallen out with anyone I just do not want to know you anymore as you have all let me down. It is so difficult because my dad needs a harmonious atmosphere to regain his strength and recover and mum will not let anyone in to hep family, professionals. I am at my wit's end and do not know what to do, who to speak to or anything. Please help me, it is most appreciated. Thank you.
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could you send me this blog? i have a gf who is going through his and i can foward it to her.......i went through it......my alz mom was a dream---and my dad went willingly.......they both only lasted 2 years in the nursing home......no broken bones......nothing of consequence......as an only child i was so lucky--my father was so smart...he knew the day he was going to die.....told them to call the morgue.......what a character!
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Anne. Do your best not to let Mum push you out. She says nasty things, but she was just recently in delirium and has been stressed beyond her emotional coping abilities as well as her physical limits. She may be one who needs to save face and not admit to being in the wrong nonetheless....so....you could just go visit and do what needs done unless Mom threatens to call the police and throw you out. The "as if nothing happened" approach. If that does not seem to be working, you could even try apologizing profoundly for having let her down even though you know you didn't. Yes, you are her terrible children who let her down and now you will try to do better and make it up to her. You know it makes no sense, but it is possible mom is in a state where she is not going to make sense because she just can't. I know you can't quite keep it from making you feel bad, but know in your own heart it is just irrational and maybe could not be helped at the time. When our loved ones can't make sense any more, we have to try to do what does make sense even if we have to go to ridiculous lengths to get away with it. :-) Some day when you might feel more like laughing than crying I could tell you the tales of the magic tea pot and the missing tea towels...
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My mom and your mom are clones! We forced mom out of her house - we simply could not keep up the maintenance - we're not getting any younger ourselves. She is in independent living for 7 years but needs assisted living desperately now. She is just like your mother - refuses any help from outsiders, won't use a walker, won't use the elevator, won't eat, won't bathe, abuses laxatives, incontinent, dementia getting worse every day but lucid enough to take care of herself (minimally) Of course she won't use a walker, refuses to move to assisted living, refuses to accept her limitations so my sister and I do it all. I wish I had an answer, but the only answer is - you will have to wait for a crisis and then move her from the hospital directly to assisted living.
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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.
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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!
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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.
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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.
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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
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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.
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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
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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
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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?
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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.
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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.
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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
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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
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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
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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.
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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..
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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.
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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.
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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.
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