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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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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.
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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!
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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.
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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.
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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.
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Bless you, Jenny. Praying all works out well for you and your mom. She is blessed to have you caring for her and looking out for her best interests. Hope the packing goes smoothly. Will you be selling her house? Hoping you can rest easier knowing she has assistance when needed in a safer environment. Praying she has a good transition there, and enjoys the camaraderie of others in her new facility. Best wishes to your efforts, as well.
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Thank you SecretSister! I am resting easier on one level. On another, the finances are a real concern. These assisted living facilities are not cheap at all.
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We are dealing with many similar problems, my elderly MIL ahs dementia and needs to move to assisted living, but it stubborn and thinks she is fine where she is. Reading everyone's answers here, it sounds like we have no position to force a move if she refuses to go. She is living with us and we have reached the crisis point. Do we have any rights?
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my Grandmother lives in Puerto rico and is incapable of taking care of herself. She is in her eighties and is mentally not right. She is forgetful and also has delusions of very horrible things. She can not live on her own but refuses to let anyone in to help her because they might rob her and wont come to NJ . Don't know what to do. She can not be home alone anymore.......
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What a difficult situation for you, chiomega1. I take it that you live in New Jersey and Grandmother is in Puerto Rico? Does she have any relatives nearer to her geographically?

It sounds like poor Grandmother is dealing with some paranoia. The idea of having strangers in her home is frightening to her. Would it help, do you think, if someone she knows and trusts were to introduce her to a helper? For example, is she goes to church, could her minister accompany the cleaning person on their first few visits, to help GM accept them? Would GM listen to her hairdresser about what a wonderful program meals on wheels is, and how carefully screened the delivery people are? I'm sure you get the idea, but orchestrating this kind of thing from a distance would be tricky! And if GM is severely paranoid she might not even trust people she has considered friends in the past.

Can you get in touch with the social services agency where she lives, explain the situation, and see what your options are?

Is is very good of you to be concerned about Grandmother. I hope you can find practical ways to help her.
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My mother has fallen @ least 7 xs within the last yr. She has many health problems but refuses to accept outside help. She insists on driving even though she is a risk to others as well as herself. My brother stays with her but has mental problems & cannot drive because he has seizures. She can still pay her bills to my knowledge but I can't help but think of what would happen if she were to become incapable of continuing to do so since her health seems to be going downhill. Is there anything I can do to protect her from herself?
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You need to understand that your lack of experience in this situation means that you might inadvertently do the wrong thing for the right reasons. When you could be doing the right thing for the right reasons. Put yourself in your mother's place. Try volunteering at the place where you want mum to go and see what it is like for you from your point of view. Would you put yourself in one? Would you give up all that you have to live in a bare little room with barely enough food to give you strength to get out of bed in the morning? Where your freedom to go for a walk in the great outdoors is under lock and key? And someone else holds that key? What is it you want from changing your mother's life situation? Probably peace of mind? Ask yourself - how secure are you? How safe do you feel? Watch your back - think about yourself for a change? What are you looking for in your life which isn't there at present? Try changing your own life... You might see your mother's situation from a completely different viewpoint. Try consulting other people who have already been through what you are going through. Ask them - were they happy with the solution? 9 times out of ten they will say NO they were not happy going about the same solutions you are seeking with your mother. Think about what you need in your life. Is that why you trust these inexperienced doctors and nurses who obviously have not seen how the other half of the population live. Or they would not be surprised by your mother's current condition. What surprises me is your attitude. Think about your solutions applied to you in your life. Do you like any of your ideas if your mother is doing them to you?
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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.
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@ 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.
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iamme, were you really responding to jennygc's post? Or maybe a more recent one. I can't match up your comments. One of the things she wanted for her mom was to accept in-home care. How does that equate with "volunteer at the place"? NH placement comes up because Mom isn't accepting the help she needs to stay at home safely.

You've really seen a survey of caregivers who have placed their loved ones in long term care (or maybe specifically NH) and 90% say they are not happy with the solution? I just flat out don't believe that. That 100% were not happy having to face just decisions I'd believe. But 9 out of 10 not happy with the solution? Please tell me where you found that.

Jennygc's "attitude" was to want her mother safe. Is that the attitude you think she should change?

Jennygc, I am truly glad you've come up with something that is working. Now, can you answer your own posted question, and tell us HOW the solution was ultimately acceptable to both of you? Many, many caregivers are at their wits' end over this kind of question, and your experience could be very useful!
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I have just placed both of my parents in assisted living. They both have dementia. My mom is unable to walk and had fallen in the house 20 times since Feb of this year. Many ER visits and home care nurses later her home was deemed unsafe by the county fire department, adult protective services, a social worker, and her primary care physician. My dad has his own room, yet spends all of his time in her room listening to her ask to return to the house. I get a call every night from them wanting to go home. I did learn to turn my phone off at 4:00pm. Anyone else with a similiar issue?
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I just place both of my parents in assisted living. They both have dementia. After falling in the home 20 times since February of this year, and many ER visits her primary care physician, social worker, adult protective services, fire department, and her home care case workers deemed the house unsafe. Everyday I get a call from my parents asking to go back home. Anyone else with similar issues?
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Birdfan, I am so sorry to hear about your challenges. Placing parents in assisted living is such a difficult decision, but it really is about trying to maintain their safety and quality of life. It also is about maintaining your sanity. I do not have the calling issue, but I know that my mom had a lot of *emergencies* after she moved to assisted living. She was anxious about the move, I think, and it translated into an unending number of requests. As I am the only person in the family, this became exhausting after awhile. I also run a small business and do not have another income coming into the house. So I essentially have had to build a team of experts and helpers there at the facility. As caregiving does not stop when you put a loved one in assisted living, I ultimately had to hire home healthcare to come in and assist her with all the requests once a week. You have to set boundaries and know your limits. Caregivers burn out if they don't, and the person receiving the care can't set the boundaries for you. It may be helpful to you and to your parents to hire someone to come sit with them or do light housekeeping while they both adjust to their new surroundings. You also might want to talk to the staff there about various activities that they might get involved in there. The more comfortable they are made to feel in their surroundings, the more likely it is that they will adjust to their new living situation. It takes time. My mother does not have dementia, so that is another challenge to deal with ... Think also about joining a caregiver support group and talking to others about their experiences. Getting a social worker involved might also be helpful.
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Also if it helps, I wrote a CareNote for Abbey Press called Finding Joy in Caregiving ..
It includes some of what I've learned over the past couple of years, and offers some practical as well as spiritual solutions.
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My sons are having an impossible situation with their Father with whom there is no love lost. He was missing for about 20 yrs. Married 3 times etc. He is bi-polar, has not been on medication for a long time. Has probably lost 70 lbs in a yr. Is living in a dirty place which he rents, Will not even let them take out the rubbish which is just piled up. Sits in a broken lounge chair all day, and will not let them take the chair and bring him another one.
He is disagreeable and will not go to a doctor. They do not know what kind of income he has. May even have had the water shut off.
One son traveled from another state with a truck and cleaning products, but he will not let them do anything.
yea gads! what can they do?
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If I were them, outoftouch, I'd call the Adult Protective Services in the father's county and explain the situation. They may not be able to do anything, either, if he is deemed mentally competent to make his own decisions. If he is considered a vulnerable adult they may be able to do something.

I have read that many homeless people are mentally ill. You can see how that could happen. And it doesn't always mean they don't have family that cares about them. Very sad.
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outoftouch ... If I were in their shoes, I would contact a social worker to come out and do an assessment of his various needs. It sounds like he is refusing help like my mother did at first. Is he on Medicaid or Medicare? Some services are covered. Have them call around to area home healthcare agencies who can come out an do an assessment. Or call the Area Council on Aging. They also may be able to send someone out to assess his needs and to try to get him some help. If he absolutely refuses and they feel he is not living in a safe environment, Adult Protective Services would probably be the next call I'd make. He sounds like he needs help, and sometimes as family or children, we're not always the most qualified to provide what they need. That was the case in my situation. People who work as social workers and who work with the elderly are used to these sorts of situations. Your sons shouldn't feel like they should go it alone. I found that I needed a team of people to help me in my situation. My mom has that now.
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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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My suggestions would be to check into a community for assisted living. If your Gramps were in the service for at least 90 days and one of those days was during a time of war he could be eligible for aid and attendance. This could help to pay for an assisted living community for him or your Granny to get the care needed. I know it is a daunting task to think of even seperating them but it sounds like it is too much for your Granny to handle, her pride will not let her admit that so she tells him he needs a hospital. In her mind this would be an acceptable situation because then the doctor is making the decision not you, your family or her. Call your local va office if he or your Granny were in service they could be eligible for approximately $ 2500.00 a month. Good luck
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Hi, I can't even get my 90-year-old father to the doctor and he is in pain. He refuses to go. He obviously has a prostate problem as he goes to the bathroom dozens of times a day.He has always been very independent, but he is making life miserable for my mother, who is 95 but in pretty good health. And he is suddenly in a bad mood, which is probably due to all the pain. It took him 15 minutes to walk to the car in the driveway, which, one month ago, took him about 10 seconds.

He doesn't want me to come over to the apartment. He came to our place for Thanksgiving dinner and everyone in my family is concerned. They say that I should tell him that he needs to go to the doctor or else I will call an ambulance. He will turn down the ambulance though. I am extremely worried. My neighbor is a urologist but my father will not see him.

HELP... Thanks
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I agree with the gaurdianship. My father is the most stubborn man alive. If you have guardianship then you have already deemed that person incompetent and can do whatever you feel best for that person even if they don't like it. Stand your ground and eventually they give in. Keep up the fight. Just remember that banks and doctors offices don't care about guardianship and its up to you to make sure they do the right thing. Hope this helps.
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I imagine I would have to hire a NY State lawyer to petition for guardianship. The good thing is that both my parents served in the military during WWII. This is the first I heard about VA benefits for the elderly. My parents have never used any VA benefits, as far as I know..... I need to research this, but I also need to get my dad to a urologist yesterday.... Time is of the essence.
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We have an 84 year old Mom with congestive heart failure living alone in a large house not visible from the road, but in the city which she is very familiar with. Since Dad died several years ago, she has had a hard time making a decision. She knows her life is difficult but won't take our advice, and every time we offer a solution, she refuses our ideas. Some days she changes her mind 5 times about whether she should get a live in, or move into independent living, or move up to my sister's 45 min. away. We have found great homes, and great housekeepers, but she always finds a way to get rid of them, or change her mind again. When she is alone for long, she doesn't do well, and has days with trouble breathing etc. Some days she calls my sister 5-6 times. This has been happening for several years now. We think she needs to be assessed, but she is a very good actress too, and will seem fine when she wants to. Shall we have an intervention and inform her that we will be making these decisions from now on? or shall we wait until something bad happens that leaves us no other choice?
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My mother always refused to agree to assisted living communities and we fought about it nonstop. We tried having a live-in doctor for awhile but it became too costly. Her stubbornness almost made me take legal action however we decided on bringing a health monitoring system in her home, which allowed her to remain essentially independent, and safe at the same time. Thankfully this saved us from having to take legal steps that we didnt want to have to do. This article also gives some suggestions on what to do if your elderly parents refuse help
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I empathize with jenny...as I'm in this situ with my mother (89) and living in her house alone. Both my brother and I are out of state and work. We cannot visit often. 4 months ago she began having hip problems and had several tests. This is natural degeneration but she is still ambulatory. All the drs did was give her Vicodin which I objected to but they honor her wishes. They have even refilled twice! so she has been on vicodin for over 3 months. I begged for PT and they agreed to prescribe but she refuses to go and continues with her "pills". She has tried to get us to "come home" by lying that she is having surgery, has an inoperable tumor, etc. which is false (as I spoke with dr's office); dr. said that we must be present, etc. She has stopped going out or having contact with any friends. She only has been out a couple times when I visited over the last 4 months. She is also exhibiting paranoid behavior and delusions about myself, brother, dating, etc. stating recently that she was dating her Dr. She refuses to consider moving or getting help with the house, etc. We've cleaned, bought groceries but she has lost weight and do not believe she eats regularly. She can be coherent at times and seems better when I leave but then is definitely not engaging with outside world. She has money and means to move to senior living or get help but says she is happy being alone and doesn't want us or others in her business. I feel better reading this forum because it echos what my brother and spouses tell me and that it will take a catastrophic event to get her in care facility. It is sad and emotionally draining to watch her waste away when she is in good health overall and has the means to live a comfortable and fulfilling life.
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