My mother's living will is being ignored. What can I do? - AgingCare.com

My mother's living will is being ignored. What can I do?

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My Mom is 99 years old. She suffers from mild dementia. She is very aware of her surroundings and is still able to carry on a conversation. When you ask her questions about things, she can usually answer in a clear concise fashion, however, her short term memory is very sketchy. She will often not be able to remember events that she witnessed that day, or earlier that week, but she is still able to remember most everything about her life and her family. Many many years ago, when my Mom was of a sound mind and body, she established a living will which includes clear directions that she is to stay in her home as long as possible, and that it is her wish to die in her home. She has lived in the same home for over sixty years. I was granted power of attorney and guardianship in her living will. My sister did not approve of her living in her home and took the matter to court, attempting to have Mom's guardianship transferred from me to her. The courts chose to grant the power to make decisions for her care to a neutral third party. My mom's living will was honored and she was allowed to stay living in her home. About six months ago, Mom fell and broke her hip. She has been in a nursing home ever since. If my sister and I agree, then she and I can make decisions for Mom, however, if we do not agree, the decision is in the hands of the court appointed third party. My sister wants her to stay there. I want to see Mom at home, as is clearly stated as her wishes in her living will. Mom still has the financial resources to pay for full-time in-home care. I am firmly convinced that she would receive better attention, better care, if she was at home with a one on one care giver, rather than in a community of people who all need a great deal of assistance, far more assistance that what Mom requires. I am exploring what legal options are available. I am fighting to see that my Mom's wishes be honored so that she can live the rest of her days with dignity. She is very unhappy in the nursing home. Every time I visit, she tells me that she wants to go home. The food they feed her is just awful! She tells me she is hungry, but she will eat very little of the mush they serve. She can hold the spoon and feed herself, but will only eat if you spoon the slop they call food into her mouth. The staff does not spoon feed her, so she just sits in front of her meals and eats almost nothing. She is virtually starving to death. She was tiny before she fell and now she is just skin and bones. Before the fall, she was able to walk quite well on her own. Now she is wasting away, left to sit all day long. I have observed that when I tell a nurse that my Mom has expressed a need to use the restroom, it is usually close to ten minutes before anyone is able to help her because the nursing staff is always busy caring for the other patients in her wing that need far more care than she does. Please, do you have any advice for me about how to handle this situation? With the help of my attorney, I am preparing a petition to the third party demanding that the wishes my Mom stated in her living will be honored. I know that caring for her in her home is a daunting task, and it will be very expensive. The care she receives now is costing over $100,000 a year and the money is coming straight out of her trust account. Her health coverage only paid for the first few weeks after the fall. If she did not have the means to pay for the home, she would be out on the street. For the kind of money she is paying out now, she could surely get better care at home. If we do not help her get home, she will die of starvation in that home and the doctors will just call it "natural causes." She deserves so much better than this. She deserves to have her wishes honored. Many thanks!!

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I've heard of "sitters" who are hired to be with seniors in hospitals after surgery & the like...Maybe an eagle eyed/seasoned personal care attendant can be hired to help your mom at the facility to the extent she gets the care she needs and staff failure to meet her needs is adequately documented to support her being better off at home. If there are funds to cover this - then there is no reason she should be forced to live out her days in a facility she is miserable in. Vin said there's enough $$ in a trust to cover 24-hour home care, so why not? Maybe a hospice eval would be useful as well just to establish a baseline?
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Even if you can't get everyone on board to move your Mom back home, perhaps you can move her to a facility where the food and/or care is better
Blessings,
Jamie
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VenGetty19: "Staying at home as long as possible" means the "as possible" has now come to an end.
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Bless your heart, Darling. I am sorry I cannot be more constructive than that. I have a similar situation, but not like yours, and I am just about exhausted. You are an absolutely lovely daughter, and I am positive that your "younger Mum" would be SO proud of you, I am. I think you have yourself a first-class ticket to Heaven. God bless you and your Mum. I will be praying my socks off for both of you, starting right now. Love, Felicia.
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The OP seems to have left the site.
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Is it possible that a small residential care home might work for her? Do have a pharmacist take a look at her meds--a lot of older folks are overmedicated. There may be things she is taking that have side effects worse than any possible benefit at her age. In her last days, my MIL was at her son's house, with a stay-at-home DIL, a hospice nurse several days a week, and other family close by. Food can be an issue; if her long-time food preferences are nothing like the NH provides, this is not going to work well. In any case, there needs to be a responsible person overseeing the situation. It might even be worth getting a geriatric care manager to help sort it out.
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Hi VenGetty19: I find myself in disagreement with some of the answers on here, so you may want to take this with a grain of salt.
I think you should gather all the statistical data you can on costs and outcome, including studies that show that the elderly who are sent to nursing care facilities all too often decline mentally and physically, at a rapid pace, and present these to the court.
I think you should gather these studies from reputable academic sources so that the court will be more inclined to give them some weight. If I were in your shoes, I would also take the time to write and include a personal statement explaining why I was so determined to honor my Mother’s earlier expressed wishes to remain at home, and what I was willing to do to make her wishes a reality. I would also include a statement refuting the reasons my sibling had given for keeping our Mother, against her wishes, in a nursing care facility. I would include at least one statement from an aging-in-place at-home nursing facility detailing the care offered and the costs.
And then I would pray.
My own mother died last year at 100 years, 7 months and 8 days, despite being diagnosed with Atrial Fibrillation, Chronic Heart Failure, COPD and asthma, as well as breaking her hip back when she was 94. Even her doctors admitted that she had managed to live so long because she stayed AWAY from standard medical care as much as possible, except in emergencies.
She had stated verbally her opposition to going to a care facility and my brother and I honored that.
Her experience with an excellent nursing care facility after breaking her hip showed us and her that she would not thrive in such an environment. She was down to 85 lbs when she was released from the facility -- she wouldn't eat their food -- and in 12 weeks she was back to a healthy 108-110 lbs and walking around with a cane. Her remarks on her experience are summed up with what she said to my brother and me: "NEVER, do you understand?! - NEVER take me there again!!"
She died in her own home in 2016 in accordance with her wishes, at 100 years old.
As an afterthought, whatever you decide, please know that I will be keeping you and your Mom in my prayers. And, as someone else suggested, you may also want to get Hospice involved as I understand they can sometimes work with patients in the patient's own home.
PS: I wasn't clear on whether or not your parent had been given a formal diagnosis of dementia, but for my Mom, it turned out that the morphine and morphine-derived pain meds she was being given were a problem, causing her seeming dementia. She perked up considerably when she was taken off those meds and given Tylenol instead. She stopped hallucinating, was less groggy and confused, and her short-term and long-term memories returned.
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I am the POA of a friend (91) who has dementia and disphagia ( swallowing issues). On puréed food he would not eat. I had his dr write an order to put him on regular foods. Quality of life is more important than quantity at this age. Why make them unhappy just to give them a few more months. He now eats well and it's just a chance we take if he gets aspirating pneumonia, which he had 6 months ago and responded extremely well to the antibiotic. But now he is happy and that's more important.
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I almost forgot....once she became impacted and instead of a trip to the hospital I called this place called that is a mobile urgent care unit and they came and de-impacter her. Their emphasis was on accessibility and their charge (I forget exactly) was under $100 - I forget whether insurance picked it up or not (MY mind is mush at this point!). Also, one time I needed a nurse to check something on mom (this was before we got the Concierge doc) so I called the agency that supplies our aides and they sent this really great RN over to check her (here again I forget exactly but it was between $75-100 for that house call). There are services available, if you hunt for them. Oh yeah, and when mom has a s**t-splosion, I call the agency and THEY'LL send an aid over to clean her up (I have trouble getting her in to the tub) (although I DO clean up the bedding, floor, bedside table....) Again, good luck!
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Sorry to hear about your situation. My mother lives with me and I am her full time caregiver. She has dementia - is 'pleasantly demented' as in has a good attitude, can't speak well because of strokes, confined to a wheelchair. Can still feed herself but starting to have some problems with using the wrong end of the utensil. It has NOT so far (knock on wood) been that much of an expense. She has medicare supplement insurance, BUT we pay out of pocket for a Concierge Doctor who makes house calls, draws blood, performs other tests when necessary, etc. AND is available 24/7 by phone, IM, etc. He even drops off prescriptions at the pharmacy. It's been a God send. We pay him for 12 months up front $1500. She has medicare supplement insurance which pays for the tests, her meds., etc. I have an aid come in 2x week to shower her and change her bed, etc., (again, out of pocket and it comes to about $320/mo), sometimes I have the aid food shop when I'm too exhausted. A young, local hairdresser comes here IN HOME to do her nails, and cut hair and we pay her like $25. a visit (plus tip). I found a Podiatrist who makes house calls/accepts medicare who cares for her bunions and trims her tow nails. If/When she becomes more disabled, we will up any services needed. My point is there are in home services that are WAY LESS costly than nursing homes, etc., if you don't need 24/round the clock nursing in home care. Check around. Good luck!!
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