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

I've read with interest everyone's comments here to the first question 40 questions ago. But does anyone have any suggestions of what to do with an elderly parent who's been the victim of medical malpractice and can't make sound decisions? My mom went in for "routine" surgery last October 2011 and hasn't been out of the hospital since then. She used to golf 3x week and go for walks, even golfed the week of her surgery. The doctor screwed up and almost killed her. We know we have a medical malpractice lawsuit but the question is, now my mom is in a nursing facility but is so medicated that she no longer talks, has a feeding tube, refuses to communicate, eat and fights nurses when she's not medicated. She's under the delusion that she is at home and eating when we've told her many times she's not. She's completely immobile because of a stage 4 bedsore which she has to be turned every 2 hours (although I've been told it should have been every 15-30 min). All she does is hollers when someone touches and I think the prior hospitals just medicated her because when she wasn't, she screamed all night long. She would say we were trying to kill her and that she wanted her life back. So I don't know how to address this situation. She just moved to a nursing facilty this past Friday 3/16, so she hasn't been evaluated yet. My other sister is content to not call or have anything to do with mom even though she's mom's favorite. Her bell choir is more important. She even wanted to put mom in hospice and let her die so she didn't have to be inconvenienced. So I'm on my own with this. Guardianship isn't going to relieve the issue of getting my mom lucid enough to try talking again. Any suggestions? I'm quite disheartened as to what to do next.

In what way is he "claiming" to be her grandson? How might this claim be harmful to your grandmother?

Would "foster grandson" be more accurate? Does it matter?

I can see why she might want him considered a "relative." If there is some event that residents can invite family to, she might want to include him. I can see why he might want to honor her by proudly calling her Gramma and saying he is her grandson. I"m having a harder time seeing why this bothers you. It doesn't have anything to do with inheritance or POA rights or anything else legal, as far as I can see. So, the problem is ... ? Maybe there is some aspect of this you haven't mentioned.

Neither of my biological children have children. All of my step children have children. When asked, I say I have 12 grandchildren. When they greet me or introduce me they call m Grandma. Techincally, this is not true. But what would the benefit be of me saying I have 12 step-grandchildren, or of them introducing me as their step-grandmother? The nature of our relationship is definitely grandparent/grandchild. I would certainly list all 12 of them as my relatives if filling out a form for a nursing home. There is more than one kind of truth.

What am I missing in this picture?

legally she would need a legal document 2 name him a grandson

I have visited my grandmother in her nursing home and noted that a person who she brought up like a grandson is listed as a relative we would like this person removed as he is claiming to be her grandson . What are my rights

It sounds like so many of us are going through some form of this in one way or the other, and the advice that has been given has been extremely helpful although my heart breaks for everyone's struggles.My mother is very stubborn and has created a nightmare in her house due to hoarding. There is nothing I can do unless she hurts herself or becomes ill. I have asked for help from agencies,but she refuses to accept it. I have started helping with whatever she allows, and I do not argue with Mom because I cannot win. I am arranging things for my husband and myself so that my son does not have to do this for us. It is the only positive thing I can find to do while dealing with Mother's issues. Best wishes to everyone.

tough situation hang in there

I don't have an answer for you but your story is nearly the same as mine so wanted to let you know you are not alone. I have your same two questions and would welcome the answers as well.
My mom lives alone and my brother has given up and won't even call the last two months; so falling on me. I call to check on her and she "can be coherent" but mostly is living in a "dream state". I worry and want to give her help but she refuses any outside help whatsoever. She hasn't left the house in 8 months (other than my brief visits) and I worry she is not getting groceries, eating, etc. No friends are calling or visiting her anymore. I fear the isolation (self induced as she can drive) is increasing her paranoia and craziness -- and therefore inability to care for herself and live independently. I have called outside services - ElderCare ombudsman type persons but they warned they can't help if she isn't receptive to allowing them to come in and provide services. She too won't consider moving to senior living or assisted facility near me or in her hometown.
I just want you to know, I empathize with you and I'm coping by knowing I've communicated options and she freely refuses. (When do you know if they are still cognizant to make their own decisions and when you can successfully step in and do what is in their best interest?)

i'm sorry this is happening. i deal w/ a father-like figure who has no other family. i'm not his, but he's like a dad 2 me. he's secretive, & easily offended. he refuses 2 listen 2 helpful tips, & refuses help. he lives in a run-down nearly-condemned rental house w/ a very lousy landlord. i've had 2 anonymously report the landlord 2x when he neglected 2 pay the gas which is included in the elderly tenant's rent. the lease even says the landlord shall provide heat. i'm the closest 2 family the elder has, & i'm @ a loss of what 2 do about this elder's problems. he's verbally abusive, & again, easily offended when faced w/ the truth. i think he needs a certain type of help i just can't provide, & i don't have the expertise 2 deal w/ this type of person.

I can understand what you are going thru. This is how it started with my parents two years ago. They too were mid 80s, very stubborn; very secretive and wouldn't discuss their plans/affairs with my brother and I. My father ended up passing away but informed us "your mother is in charge" then proceeded to tell her she had money, etc. and should stay in the house as long as she wanted. Problem is; he died and she was left very lonely as they didn't have close friends, neighbors, or children nearby. At first she rallied and "had a life" and was managing but the last 6 months have been down hill --not health wise, but isolating herself from the few activities and friends she was doing. Now she refuses all help and only wants to do things with me (in other words she is only social and goes out when I come home for visit except for grocery necessities -- no church, no meals with friends, no clubs, cards, no nothing) -- a big burden as I can't meet her needs. I'm coming to grips with this. My brother has visited once in two years and doesn't really want to come back for a visit as she refuses any suggestions for "living life". I just got off the phone with her and she says she's in a bad mood. I rambled long enough. Bottom line from talking with many of my friends in similar boats -- we have to let go. Unless the parent is in imminent danger or living in squalor -- there is nothing you can do to force them anywhere. I have to remind myself its not my life and I can't force my mother to live how I want her to. If she wants to remain sad and depressed; I have to honor that as long as I know I've done everything possible to help her...and I have taken her to doctor's -but they only want to prescribe drugs and get rid of the patient. Unless that patient has someone close by to monitor them and continue to give feedback to doctor and willing to change prescriptions, haul them to therapy, etc. etc. its futile. WHen you are far away, you can't possibly do this and leaving them on drugs is almost worse if you can't monitor and they aren't healthy enough or willing to question the doctor about how they are feeling.
POA -- my mom finally admitted she had one and showed me; but you can't do anything with that unless they are incapacitated and can't make their own decisions -- that is decided by doctors, judge, psychologists, etc -- NOT YOU so you are still at their mercy. It took several years of discussion and then several months once my father passed to get my mother to get a POA and also go to the banks and get a POD (payable on death) so you can access their bank accounts when the last parent dies and take care of bills, funeral expenses, etc. while the estate is settled.
My mother wouldn't even tell me the attorney where she had the will. We had to get tough and I told her if she wouldn't reveal; I wasn't wasting time trying to call every attorney in her town to figure out who had the will and if she wanted it this way, then I would walk away and let everything go to the state and her wishes would not be carried out. That got her attention and at least now I have the name and number for the attorney.
Our parents are mean, they just don't want to relinquish their independence or think about death -- but we can all learn from this, not to do this to our own children and stress them out.
My in-laws are completely opposite -- they have everything in order for several years now and have given us copies of everything. They also have long term care.

Please forgive my spelling, my fingers go too fast for my brain.

My Dad has been sick for the let year, in and out of facilities. My Mom is pretty sharp, but a nervous wreck. They are 82 and 81, they have a large home and now that Dad is going down hill quickly, he can hardly wok, I don't know what to do. they do not have a POA or any thing.......my brother and i do not get along and i am pretty ignorant on this eldercare stuff, since I figured my folks had taken care of it. My Mom is stubborn and my Dad absolutely refuses to do anything for himself. Mom is getting very tired. If she gets sick, it will be me that has to do something, and I am about out of leave at work. Don't now where to start! HALP!

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.

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

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?

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.

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.

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

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

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.

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.

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.

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?

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.

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.

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?

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?

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!

@ 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.

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.

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?