If there's no one to care for a person with dementia, what happens then?

6 answers | Last updated: Nov 17, 2016
A fellow caregiver asked...

What happens to an elderly person with dementia where the family doesn't want to care for them anymore and there isn't anyone left to care for that person? Will the state do anything for that person?

Expert Answers

Barbara Repa, a Caring.com senior editor, is an attorney, a journalist specializing in aging issues, and the author of Your Rights in the Workplace (Nolo), now in its 10th edition.

In the sad situation you describe, a court--usually the local probate court--will appoint someone to act as a legal guardian or conservator, and that person will become responsible for the elderly person's care.

Your first best stop for information on this would be the local probate court. Courts in some locales have established some very good self-help centers that provide good free information and even the necessary forms and instructions to get the process started. Find it by doing a search of your city or county and the words "conservatorship" or "guardianship."

Community Answers

A fellow caregiver answered...

Please keep in mind that it may not be that adult-children do not want to care for their parents. It is not cheap to initiate guardianship proceedings, and often it is contested, for example a father's second wife who is also elderly and frail, but continues to insist "the two of them are just fine." Sometimes if the parent is alone, they continue to insist "I am fine, don't worry." Children have no rights by our legal systems. Thus they are forced to let social services initiate the guardianship proceedings, unfortunately parents are often in quite a miserable state by the time the court is willing to get involved.

Howcoolrutoday answered...

Having gone through this situation - 500 days of hell - where my father developed dementia, became adversarial, forced me to enlist adult protective services to petition the court for 3rd party guardianship - a word of caution: 3rd-party guardians will NOT know the unique circumstances (they are appointed in a round-robin fashion) nor will they really care. Their focus is simply to ensure "adequate" care and generate revenue from either the estate or by virtue of court-approved payments. While this may be fine for some, in my case I ended up superseding the 3rd party appointment - at VERY little cost I might add - so that I could make sure my father received appropriate medical care. Third parties make lousy patient advocates! My father ended up having a stroke while in the hospital leading to 10 weeks of daily lobbying for all the help I could get him until he finally succumbed. The medical community is ONLY obligated to communicate with the court appointed guardian.

Jenaette answered...

After 3 years of not being allowed to see my Father, following my Mother’s death, and his revolving door marriage only 30 days later, I was called by the 2nd wife to have Dad “placed in a nursing home” because he had “lost his mind’ After getting over my anger and hurt feelings of rejection, I flew out of state to investigate. I discovered that the new wife and her adult son had revoked the Family trust, that the properties, the family home, the stocks and all the cash was in the new wife and her adult son’s name. I took Dad to an attorney before seeing a doctor, and opened Pandora’s box to fraud, neglect, exploitation, and abuse.

I was involved in court proceedings in CA for over a year, with a temporary guardianship, because my guardianship was challenged not by the wife and her son, but by my brother, and his ex wife who I hired out of my personal funds to care for Dad so I could return to AZ to my business. The ex daughter in law then became engaged to marry Dad when he was informed he only had days to live. I had also been appointed the guardian of my grandson, so I was caught between two people who both needed protection. I did not know who the enemy was, but was caught in the middle of a murky mess over money.

It has now been 5 years, and the attorney fees alone exceeded $250,000. I was advised by Dad’s attorney to mortgage my home and take a loan out on his property in CA (in my name) to cover the cost of his care, until the courts released his assets. I followed that advice. My personal home is now in foreclosure, I was able to sell Dad’s home for what was owned against it, but was unable to make my mortgage payments which doubled with the refinance, and the subsequent loss of my earning. The time it cost me to oversee Dad’s care, has reduced my income from 6 figures a year to a less than $20,000 per year for over a 3 year period. Dad had no income to pay me, his SS was $550 a month, which I had to account for to the state. My attorney just completed the first and final accounting of his estate, which translates that I was never approved to be paid for my services. By the time I intervened, his cash assets had been embezzled, and by the time the court gave me permanent guardianship, his property values had fallen to one half their original value that had been reported to the courts. There was no equity left to pay me back for either the money I fronted for his care or to compensate me for my time; an amount that has now exceeded one million dollars.

I was required to pay for Dad’s care, since he could not qualify for ALTCS, both of our expenses, pay the mortgage on his home and mine, in addition to giving up my income to watch him 24-7, he had a stroke which left him unable to stand or walk, and he has Alzheimer’s disease. I failed!

I may lose my home, I have all but lost my business, my grandson left a few months back, stating that I destroyed his childhood from forcing him to live in nursing homes. I have encountered so much fraud, deception, exploitation, abuse and neglect within the elder care industry that it takes constant vigil just to see that Dad is bathed and fed.

Taking care of our parents should not be this difficult or expensive to those of us who offer our assistance. I have found little to no help with the ombudsman’s office, APS or the Dept of Health. They all know the situation, but are inadequately trained as investigators. I feel like I have had to become a secret service agent, just to get minimal care. These adults can’t remember what they ate for dinner, if they ate dinner, and have no boundaries when it comes to trust issues.

Would I do it again? I’m not sure. It cost my life, but I saved my Dad’s. As one APS investigator stated,. “If it weren’t for you, your Dad would be a piece of celery, laying in a hospital bed”. He has been drugged with off-label psychotropic drugs without my permission, fed bread and water for dinner, has gone months without showers (at a cost to me of $65.00 per shower), and has had a 43 YO criminally insane felon as a room mate. I just got the state to intervene on that one after he attacked 4 caregivers, and sexually assaulted a 98 YO resident. I was the only one who was concerned!! The owner simply fired the care givers, who by the way were illegal, so no one could question them. I happened to be there during the assaults, but I was only a witness, not the victim.

I have lost all my friends and contacts with the outside world and have constantly been berated by the elder community, due to my advocacy for my Father. My income is all but history and my life savings is completely gone. I was single, self supporting, and lived a life most folks only dream of. I had absolutely no outside help, no family to assist, and no friends who stuck around. I now live day to day, and wish I could go to sleep and not wake up. A single person should not be required to give up their source of income, take on additional debt, and care for someone full time without compensation, and be expected to survive.

Howcoolrutoday answered...

Jenaette -

I feel your PAIN! I'm an only child - a blessing in that I had NO adversarials to deal with like you had, but also a curse in that there was NO ONE else to help - much like you. I had been providing care to BOTH my parents for 13 years when my father (life-long sociopath) developed his dementia and started neglecting and abusing my mother (who has been in a wheelchair since 1997), forcing me to get DPOA, remove her from the home against my father's will, and protect her and her assets from him (and others). Then, of course, the painful battle to get him help; APS, police, probate, guardianship, hospitals, ERs, nursing home hell, etc.

Like you, my life came to a halt including the reality of lost employment, reduced finances, and NO personal life. However, despite my mixed feelings about my father I was ALWAYS about doing the right thing and that was to make sure that my parents would not be taken advantage of by those that would and that their quality of life was the best it could be whether they could comprehend it or not.

Your legal battles are EXTREME and very unfortunate. I enlisted the guidance of up to 5 attorneys only to discover that reading the mental health codes and understanding probate was NOT rocket science. I did all the petitioning myself in the end though I did not have the estate complexities of your awful dilemma.

Your elder care battles are typical as the industry is like any other: for profit. Nursing homes are really an awful thing in general with assisted living not being far behind. The more visible you or another advocate for your father is in these places, the better off he will be - if there is no accountability, these institutions are not geared to proactive and life sustaining activity.

As painful as it has been for you, YOU DID AND ARE DOING THE RIGHT THING!! There are no social service interventions or miracles from above to do what we do in order to preserve life and dignity. It is a rare and enviable quality to sacrifice all for our parents - regardless of what they did or did not do for us. It comes at a high price; yours higher than most.

I pray that you recover from this trauma! Peace-of-mind is a very powerful thing and you should draw strength from it. Pick-up the pieces as best you can, and try and take back YOUR life now - one step at a time.

Compassionateinflorida answered...

Jeanette, I am not precisely in the same situation, but there are similarities. I now have uncontested guardianship of an 81 year old aunt who has never been married. She is a Korean War vet and I have been fighting for her benefits and her life. She originally lived on her own but fell on her back and the rest was hell in Nevada until I brought her to Florida. She is now in a nursing home, but even though I'm there every day, it's like a losing battle while I wait for Medicaid approval and VA benefits, etc. I feel like I might lose my income and my sanity with all of the paperwork, etc. I am wondering, if you had to do it again, if you would have brought your dad home and sought in home healthcare. Everyone here seems to support it, even the government and VA agencies. I just wouldn't have considered it even a week ago because of the disruption to our lives. My husband and I both work from home, we have 6 grandkids and my aunt can be a handfull. But, honestly, this running back and forth and filling out papers all day and on the phone and being worried that she's in an institution and unhappy all day eats at me. She is a pleasant woman who has always lived on her own after serving her country in the Air Force. She has never lived with "family." I have the room, but then could not entertain family who travels in to visit in Florida. It would be a life changer. But then again, she has changed my life. I did not grow up with her or know her well, but I have compassion. She was being treated like a bag of trash in Nevada. All they wanted to do was to put her in hospice and give her drugs which further confused her. I have guardianship over her person and estate, which is nothing but SS and VA benefits, when they come in. I've spent a lot out of pocket What is your suggestion?