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Placement in a Long Term Care Facility when the patient wants to remain at home

I am trying to find out if there is any recourse to a situation where a person with Vascular Dementia has been placed in a long term care facility against her wishes.

I have a close friend of mine, her name is Faith and she is 79 years old and she has been diagnosed with Vascular Dementia.  The only family that she had locally in Ohio is a niece who lived less than 5 minutes from her but never showed an interest, visiting only like 3 times over a 5 year period.  Her other family (a sister and a niece) reside in Arizona and it was her sister that had POA designation.

In the fall of 2009, Faith had sustained a pelvic fracture through a fall in her home.  It was me, her good buddy from church, that she called to come and assist her, not her niece or anybody else.  After follow up with the hospital social worker, it was determined that Faith shouldn’t be living alone anymore and would require 24/7 care.  She has confided in me many, many times that she was dead set against assisted living or nursing homes so we had found an agency that provided caregivers to come and stay in the home 24/7.  This arrangement took some adjusting to but it was working out until Faith had a series of UTIs, which made her more non-compliant and combative.  There was an instance where she was very physically combative with the caregiver, which resulted in her sustaining another fall, resulting in a fractured hip.  She was naturally hospitalized for this, and it did require surgery – for which none of her family was present.  Again, it was me, the friend, who was there for the surgery, to speak to the doctors pre and post operatively, etc.  But they did call me frequently, wanting a blow-by-blow accounting of everything that was going on, enabling them to call the shots and make decisions without actually having to be present.  So many people, ranging from people in our social circles to her attending physicians, knew of the situation as it was between Faith, her family and I.  How ridiculous it all was, how the hospital had to call Arizona to get medical OK for things when I was the one who was actually there and who was actually closer with her than her own family.  I was encouraged to petition for guardianship, which I did.

While she was rehabbing and not yet released from the hospital, the Arizona family did come up.  And through conversations with them, it became very clear to me that their intentions were to place Faith in a LTC facility for the rest of her life, under the guise that she would be there for rehab only and then return home.  Even though they knew of her wishes to remain at home for as long as it was possible.  They were served notice from the court that I had petitioned for guardianship while in Ohio – and they were furious.  And to be spiteful, had instructed the director at the LTC facility to bar me from being able to have visitation with Faith; it took me seeking help from the Office of the Long Term CAre Ombudsmen to get her visitation rights re-established.

To make a really long story short (at least shorter), the niece that lived locally had challenged my petition for guardianship.  Not that she really had a sincere interest in  caring for her aunt, but because she was no doubt put up to it after conversations with the Arizona people (her mother and sis), whom, incidentally, she hadn’t been close to herself in years.  Seems they were all afraid that I was after Faith’s money and would drain their inheritance if I would have been appointed guardian (really stupid way to think because most people know that there is a high and very much accountability bar there)  The judge was obligated to appoint the niece the guardian because of how the law is set up in our state – family members, even though they may have been very uncaring and distanced,take precedence over non-family petitioners in guardianship cases. 

She has determined and decided that Faith would do best in a LTC facility, not taking one bit into account that this is not in accordance with Faith’s wishes nor the fact that she has enough money to remain in her own home.  And that is how it stands now.

It is heartbreaking, absolutely heartbreaking, for me to go and visit her in that nursing home.  I had to suspend visits for awhile because I often left there too depressed and angry-feeling that I had let my friend down and had broke my promise to her to keep her out of a place like that.  I have prayed alot on it, though and searched my soul and have resumed visits with her.  But it is absolutely heartbreaking and nothing has changed:  I am forever being asked “Honey, when are we going home?”, clearly, her remaining unchanged and not wanting to be in there.

Somebody PLEASE tell me there is some recourse here!!  I have talked with my lawyer and she tells me no, that all of Faith’s rights were forfeited when she was declared incompetent.  And then goes further to add insult to injury by saying, “Maybe she’s is the best place for her, care-wise.”  To which I say NOT!!  You  may know case law BUT YOU DON’T KNOW MY FRIEND.

Any feedback here would be much appreciated.  Thanks.

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submitted by JeanneG on Monday, 02/14/2011 - 1:18am

How wonderful that Faith has such a caring and loyal friend as you. Under the circumstances, it is too bad that she didn't designate you as her health POA. I wonder why so many of us feel compelled to name family, even when there isn't a strong relationship there?You may be legally blocked from doing what you'd most like to do, (you have spoken to an attorney) but you can at least continue to do what you can do for your friend, with regular and uplifting visits. At this point, with little chance of her going home, do you think it would be in her best interests to help her accept and make the most of where she is?Being in a long term care facility is almost never in accordance with the dementia victim's wishes. I know very well that my husband's strong preference, one he would insist on if he could, would be to remain at home. It is my strong intention to honor that as long as it is humanly possible. But I have not made any absolute promises. I know from my association with other caregivers that a time may come when I just cannot care for him myself, or even with professional assistance. One factor that would make it difficult or even impossible for him to remain at home is physical combativeness. That is just too high-risk for him, for me, and for paid caregivers. Unfortunately this is sometimes a feature of dementia, regardless of how sweet and peaceful the person is in his or her normal personality.It is absolutely heartbreaking for caregivers to have to make the decision to place a loved one in a care center. I hope I never have to face doing that. This must be especially hard for you, since you have no say in the decision. Dementia is a heartbreaking disease, for those that have it and those that love them.Hang in there! Continue to relate to Faith in love. You are a blessing to her now, perhaps more than you've ever been.

submitted by jeepster on Monday, 02/14/2011 - 2:20am

Thanks, Jeanne, for your words of support and encouragement.I am resigned to the fact that this is how it will always be for Faith - and I have learned alot from the entire experience.  First and foremost, the importance of keeping your legal paperwork up-to-date and reflecting any changes that you want made.  I cannot tell you how many times we had entertained the discusssion of changing her POA and her will, as this was her intention.  But something always came up and she never got around to doing it . Also, have learned never to form opinions on people until you really get to know them.  I had reconnected with my childhood church and began attending regularly with my son.  We had sat in the last row of pews behind Faith for about 10 years before we actually developed a friendship.  During these 10 years, we never spoke a word.  I had always viewed her as an impeccably dressed, stuffy, snobby old woman.  When they revamped the seating arrangement in our church, making the last row for handicapped accessible, my son and I were forced to move into Faith's row of pews if we chose to remain near the back.  We began with small talk and casual conversation, which led to "I'd really like to go for breakfast someday after service."  And the rest is history.They say God works in mysterious ways and that there is a reason for everything that happens.  I have come to see that this is very true in the relationship that He has given me with Faith; it is a relationship that I will always cherish.  Support her?  You betcha.  Always be there for her?  You know it. Again, thanks for your kind words............

submitted by Jo G on Thursday, 02/17/2011 - 2:27am

Sadly, dementia and Alzheimer's are so unpredictable.  What can be a safe and logical way of living one day can become frightening and unsafe at sundown.  Confusion can reign.  And sadly, no one can really predict when this will occur.  My mother was argumentative, angry and hostile towards us.  She had mismedicated herself, she had numerous falls (probably from mismedicating herself), she had hidden and extra set of car keys to drive when we were not there.  She came to live with me for a short time.  Her set up was not adequate for us to live with her.  She spent many weeks in the hospital on several different occasions and had many visits to the emergency room.  We knew she couldn't be safe at home, but the challenges to help her understand were overwhelming and various family tried to "fix" the issue of the day.  But with all that, we couldn't prevent this disease from progressing and to make matters worse, my mother would repeat that she would NEVER leave her house.  Yes, her wishes were clear to us.  But despite her wishes, it wouldn't be responsible for us to leave her at home and have her needs met.She moved to assisted living and hated it.  The assisted living facility was new and beautiful but it didn't matter.  She was losing her independence and she knew it.  I had to keep remembering that it was not me, it was not my siblings, it was not anyone who loved and cared for her who was taking that independence away.  This disease robs people of their independence and way of life a little bit at a time.  While my mother was living with me, she had several medical emergencies and it was impossible to predict when and how they would occur.  She had many more when she lived at home with her "independence".Twenty four hour care is a lot of care and despite what agencies and paid staff will tell you with home care, gaps can happen.  Someone doesn't show up.  There is a storm.  There is a holiday.  People move on to new jobs.  I didn't appreciate the importance of continuity in care until her current placement.  The staff has been stable.  Even if one staff member leaves, there are many others familiar with my mother and my mother is now comfortable with all of them. You are a blessing to your friend.   I think that it is important, as you say, to have legal paperwork in order.  Choose people you trust to make decisions.  Despite the motives of the people you leave to make your decisions, it is a decision that needs to be considered carefully.  You pursued and ombudsmen which was appropriate for you.  It has been my experience that most people never anticipate the worse case scenario .... that they will be unable to make competent decisions.  Until recently, my mother could be appropriate in conversation and convince others she knew what she was talking about.   But she hasn't been safe for many years. One of the most critical pieces for being a caregiver for me has been being able to find peace with difficult decisions I've had to make.  Many of her friends second guessed decisions until the point that they became concerned when my mother backed into a tree on their property or they smelled smoke because my mother left something in the oven or EMT's had to carry her out on a stretcher after she mistakenly gave herself too much insulin.  And it can happen in an instant.  We saw those things happen.  We felt the gossip of the neighbors as they shared their opinions.  But we also knew my mother as a proud and successful woman who was faced with a difficult diagnosis and we needed to help her the best we could.  I could have done without the second guessing, and often wonder why none of them ever come to visit her in the facility where she has resided for the last two plus years.  I know they have to drive passed the facility at least a few times a week.  And yes, it makes me angry and bitter, sometimes, but sadly, her "friends" don't continue on this journey that I get to have with my Mom.I have a friend who tells me, "It isn't easy, but it is God's work".  She's right.  Blessings to you for your support of your friend. 

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