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!!
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.
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].
Broken hips and dementia are game changers. She needs to be in a facility with round the clock professional medical supervision.
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.
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.
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.
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.
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.
Blessings,
Jamie