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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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Mom has broken a hip. Very serious in the elderly. Being put under may have escalulated the Dementia. Your sister and you need a care meeting. There the facility will explain what they r doing. You can bring up your concerns. I actually voice mine all the time. You can also ask to speak to the doctor in charge. You can ask her primary to come and evaluate. Like said your Mom said "as long as possible". It may no longer be possible to keep her in her home. If you don't like the facility, find another. You should have a list of rights when Mom was admitted. Mom has gone thru a tramatic thing. A shock to a frail system. Her body may not come back from it by no fault of the facility. If you are addimate about bringing her home, maybe hospice would be something you could look into. They will evaluate your Mom. Medicare will not pay for the facility but will cover certain things you r paying for. Hopice can come to the facility or home.
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Ven, before you bring Mother home, spend 48 hours with her at the nursing home so you can see what all needs to be done. Sometimes during just a hour or two visit, some with Dementia can become quite normal but as soon as you leave, they go back to having memory issues. You may find this to be a real eye opener as to all the care she needs.

And for the around the clock care, as I had mentioned in my earlier post, I used a professional Agency that was licensed, bonded, insured, and had workman's comp in case a caregiver was injured on the job. And that had cost my Dad $20k per month. Unless you plan to take one shift yourself, which would help reduce the cost. If you work outside of the home that would mean the night shift, but don't be surprised if Mom needs your help many times through the night.

If Mother comes home, you would need to set up her home as a mini nursing home. She would need a hospital bed, thus a bed that can be lowered if Mom starts falling out of bed. Mom would need a wheelchair, probably a port-potty in her room, special diet of pureed food and someone who knows how to do this. Grab bars in the shower plus a shower seat.

My Mom had a serious fall at home, and on her 2nd fall she found herself living in long-term-care as she was just too much for me, or my Dad, or even a private caregiver to handle. Mom couldn't walk or even stand due to brain injury from the fall, but in her mind she thought she could. She was an escape artist no matter what the nurses/aides tried to do to keep her immobile, thus more falls.

There is a lot to think about.
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It does sound like your mom is capable of making her own decision to go home, she only needs the physical assistance to do it, that's possibly all you need to do is have mom tell everyone she's going home. Also in the end, in most families money talks, if it's more cost effective for mom to go home than to be at this facility, maybe that is a way to reach an agreement with your sister that it's best for mom to go home, and have hired help.
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Without knowing anything about legal matters, it does sound like your mom is, at least, safe and receiving proper health monitoring. Can't you take her out of the nursing home for day trips to restaurants and family visits? Maybe you can take her home on certain days of the week, so that she has a sense of continuity and connection. But if you do, you should probably hire a nurse's aide to help. It's a HUGE production!
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I think we all want to die at home. I know I do! If for some reason, I need nursing home care, I would hope it would not last too long. It could be your mom's wishes were "die at home", when she was younger and capable of caring for herself. All of a sudden the body starts to break down and nursing home care needs to be considered. I wish there was a better ratio of nurse to patient in Care Homes. Usually, it is an Aid that assists your mom. They can have ONE nurse on duty and 50 aids. I am praying that your mom gets her wish. You need to prepare with FACTS. Costs, 24 hour day? baths, meals etc. if she stays at home.
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Ven - If your mother is still of sound mind, which it sounds like she is, then the ultimate decision is up to her. If she wants to go home and has the money for full time live in help then there is no reason why she should not be allowed to do so. It is most unfortunate that you were not able to retain POA as that would have made the process so much easier. My father was hospitalized for a week last year then we moved him to skilled nursing to get his strength back. He received 1 10 minute session a day of PT with Sundays off. NOT enough, in my mind, to have any benefit. After 2 weeks of that nonsense we determined the risks of him going home far outweighed any benefit he was getting at the facility. He also was able to pay for a live in care giver. I do need to stress that it was NOT easy. He could not walk well so we got a wheelchair, a walker, and all kinds of other things so he could be safe and comfortable in his own home. I also made the decision to put him in Hospice as he had no wish to go back either to the hospital or nursing facility. He had nursing care in his home almost every day. As someone else here said, a fall is a game changer, but there are ways to get her home and comfortable. Explore home hospice care.
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If Ven's mother didn't have the resources I'm afraid it would be a non-starter, however unfair that sounds from a societal perspective.

Or, again, if the sister was living in her mother's home and handling front-line care, then I'd agree, but I think it doesn't sound like it - he just says his sister "didn't approve."

But this lady is paying eye-watering sums for care in a setting that can't do anything for her that she couldn't pay to have done for her at home. I too hope he'll come back, even if the decision goes against him, because it will be interesting and instructive to hear the guardian's rationale.
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You did not reference your distance from your mother or sister? Does your sister live closer to her? How often were either of you able to visit your mother at home? Who was taking your mother to her appointments? It doesn't sound like you have had any conversations with her doctors. The "mild" dementia you mention sounds like your denial of your mother's condition. My mother is 92 and would fall into your description of "mild" dementia.However, that "mild" dementia forgets to take meds or forgot they took them and would take them again. That "mild" dementia couldn't repeat a conversation or instructions that were just given two minutes ago. You need to further research your mother's condition thru conversations with her doctor and reading for you to fully understand what her condition is.
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Ven i hope you come back your let us know what's going on.

It's lovely to think that Ven's mom could come home and that she would then be happy and corfotable.

But here's the thing. If mom comes home, someone needs to be "in charge" of the home, and of the home care. Someone neds to be in charge of getting mom to all of the places she needs to be seen ( see above). Someone needs to be alert to her medical condition. Doing that job, that " being in charge" bit is exhausting, nervous making and, depending upon the patient, sometimes thankless.

It's usually the noncaretaker child who is jumping up and down saying " no nursing home care"; the child who has been doing the managing is happy to have some semblance of a life back and is glad to going back to being a visitor.

This is certainly not true of all families; Country Mouse took care of her mum till the end and did it with grace and zeal. Ven, i just hope it's YOU who is going to be stepping up the plate if you prevail.
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VenGetty19, you need an attorney to overturn that disgraceful court decision. If you can't afford to pay an attorney, contact your local law school and see if a freshly qualified lawyer will work for you pro bono. Also get in touch with age-discrimination activists. My uncle died in an assisted living facility aka nursing home. He was perfectly sane and healthy, and had just fallen once at home, and was tricked into moving into the nursing home after a spell in hospital to recover from his fall. Once he was in the nursing home, his physical and mental health declined because he was surrounded by people who were dribbling, shrieking and sexually harassing him. The staff were very patronising to him (eyeballing him and speaking very slowly and loudly). He asked me to put him in touch with a home-care agency and it was all going to be arranged, but various things happened, including his next-of-kin banning me from seeing him, and he died before I could rescue him. Do all you can to help your mother. She relies on you. Her condition will deteriorate even further. You are right to be concerned.
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Find out if a swallow test was done, hence puree. If your mom can afford to be at home with 24/7 care, there is no reason why she shouldn't be. It won't likely be for a great number of years. Sister seems more worried about what money will be left to inherit? Good for you for honoring mom's wishes, and good luck!
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I don't think there is much more that you can do, but it's okay.

You have a good case. You have had the good sense to recruit the assistance of an attorney in presenting it for consideration. If your argument is rejected it can only be for good reasons, in your mother's best interest, that we haven't thought of. Think positive and hope for the best.
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She wanted to stay at home "as long as possible".  Staying at her residence is no longer a safe choice, and your sister understands that. 

Broken hips and dementia are game changers. She needs to be in a facility with round the clock professional medical supervision.
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VenGetty19, when my Dad had 3 shifts of skilled caregivers at his home each day, the cost for him was around $20,000 per month, or $240,000 per year, costs vary from city to city. My Dad [95] decided his house was becoming too much of a burden for him so he moved to senior living, thus the cost was cut more than half per month.

My Dad was so happy to be away from the house, which he sold, and used the equity to pay for senior living. And the best part, he found people from his own generation, thus he made new friends :)

I am curious why your Mom has problems feeding herself. And as Barb had asked, why is the food pureed? That is usually done if someone has issues with food and water going into the lungs instead of into the stomach. Is that happening? Usually one doesn't eat much because they aren't moving about and getting exercise.

Oh, when your Mom is saying she "wants to go home", chances are she wants to go back to the house where she grew up, to be around her parents, and siblings [if she had any].
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What is the reason she's on pureed meals?

Has she been assessed for her ability to swallow unpureed foods?

Nursing home care is costing my mother 12k per month from her funds. However, if she had full time aides in the home, it would be costing her approximately 18k per month. Which does not include home maintenance, increased insurance costs, food, etc. It would also mean that someone ( in your mom's case, your sister?) Would have to get her to the doctor, the hair salon, the podiatrist, the audiologist and the dentist. The would care doctor. The speech therapist to assess her swallowing. And on and on.

Find out about the food and the swallowing stuff. It might make a big difference.
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