My mom has dementia. APS has accused me of neglecting her- their allegations are simply not true. They are quite threatening. What can I do?
My mom has lived with me fo 6 years. For the last 5 years, she has attended a county run adult day care program. She has dementia but no physical health problems. At first, she was there 3 days a week and really seemed to like it. About a year ago, they insisted she attend 5 days a week. When this started, her behavior started to deteriorate at the center. About a month after she started to attend daily, they informed me that they had stopped serving breakfast "last year" and I needed to send food with her. I did this and also started getting up earlier so she could have a hot meal instead of cold snack food or expensive microwave meals. Then I got a call reporting that she had yelled and used foul language toward a staff member. A month or so later, they reported she had cursed another client and made them cry. About 6 weeks ago, they reported that she had acted up again and terminated her from the day program.
My mom has always had a sharp tongue, and with the dementia, she doesn't have much of a filter. However, I did not see this kind of behavior at home. I did see her getting irritable and she was regularly balking at "going on the bus".
At the same time, the center complained about her hygiene and reported that at times she had body odor. At times this was true. It was a battle to get her to wash her hair and body. She refused to shower and just washed in the sink. This worked well enough, but the next challenge was getting her to change clothes. Especially after she started going to the senior center 5 days a week, she would go for a "nap" shortly after getting home and often sleep through the night in her clothes. In the mornings, I put out clean clothes, but she often put the dirties back on or would change the visible clothes and not her underwear. Then the bus to the center would arrive and there was not time to get her changed. So yes, sometimes she smelled bad. Two years ago they told me they would make a referral for home hygiene services. They finally did it 2 weeks ago.
In January, about a week after she was terminated, a social worker called and asked how she was doing and if she was ever at home alone. I answered that she was home alone at times. A week later Adult Protective Services sent a worker to deliver an accusation of neglect saying she was always hungry (almost daily we will eat a full meal and within an hour she will ask when I'm going to make lunch, dinner etc. I'll ask if she's hungry and she can't decide, I give her more food, she maybe takes a bite. Her weight has not changed for years.), and had body odor (sometimes) and matted hair (no).They stipulated that she must NEVER be left alone or the county prosecutor would immediately take guardianship and put her in a nursing home.
I was blown away! I had largely started sending her to the day program so she could be around people her age and not be stuck at home all the time. When they insisted that she go every day, it just got to be too much for her physically and socially (there are 50-60 people there, and they spend most of the day doing activities as a group. Not really her thing). She has a routine here at home and has done the same things every day she is here for the last 6 years--up for 2-3 hours, dress, make her bed, eat breakfast, read, let the cats in and out a few times, go back to bed. 2 or 3 hours later, up again, same thing again until it's dark and then she sleeps through the night.
Meanwhile I am off work on FMLA jumping through all APS's hoops and trying to figure out how to get someone in here without bankrupting her. The bottom line is that I truly and genuinely believe she does not need someone here 24/7. They have been clear that it doesn't matter what I think or what she does, the case is open and the expectations stand.
Has anyone else been in this kind of situation? Is there any way to get them to back down? I could see having someone come in for a few hours a day when I'm at work and my daughter is at school, but all day every day is just not necessary! I appreciate any advice, thanks!
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I'd bet APS has already sent an inquiry to SS to ask if there is a representative payee on file for mom & who the RP is. If there is not RP paperwork done, SSA is going to require one to be done and if you are still being investigated by APS, it's not going to be you. It sets it up for mom to be a ward of the state with a state appointed guardian.
Unless you are a licensed health care provider, you yourself cannot determine that mom does not need 24/7 care. If you are pressing this as a fixed viewpoint with whomever you are speaking with in APS, they are going to be totally frustrated with you. They are going to do a ward of the state request.
The program mom was in for 5 years probably has a thick file showing moms change over time and her families (you) inability to take advice or requests or changes needed by the day program to be carried through. It sounds like the last year there has been quite a few distintive incidents with mom....the making another elder cry, her cursing staff, multiple foul & dirty clothes days....and family has just not dealt with it. Someone at the center is a mandated reporter and has shared their notes with APS. It just does not look good for your ability to provide the oversight needed for your mom.....
Your likely not going to like my suggestion, but honey, cut your losses, let mom become a ward of the state, work with APS to get this to happen, and you get back to work and focus on being a mom & enjoying having a daughter & being a daughter. Let the state appointed guardian deal with all the many issues of your moms care & needs.
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If of course you go on the offensive and demand help........ooooh well maybe . I did and was told the waiting list for a bathing assessment was 1 year A YEAR? REALLY?
So I diaried it as I do everything, then if I am ever accused of neglect I can say uh uh. I requested help a year ago and am still waiting. You KNEW I wanted respite, you KNEW I needed an assessment, you KNEW I needed a hunky man for the colder nights!!!! Just testing that you were reading this!!! SO far you have evidence if you diaried it that they said they would make a referral for home hygiene services 2 years ago yet it has only just happened? How is that supportive.
I think I might be tempted to challenge this softly. They won't back down but if you go in and say something like I wanted help I was told there was a referral made for help and I have struggled. I have really struggled with no support and no help for 6 years, now you tell me I am doing it all wrong.....why wasn't there help for me in the beginning when I needed it so that I could have had all this in place from the outset? I am trying to juggle work children and mum because SHE doesn't want to go into care and I don't know where to turn for help. All I seem to get is one accusation after another. I am asking for help support advice so please will someone help me. Copy it in to your councillor see if they can help or the mayor or the congressman - someone has to be responsible for HELPING...haven't they?
One of the reasons neglect and abuse carry on as badly as they do is that people are terrified of reporting what they think they have seen and being wrong about it.
And that is because people feel that it is shameful to be reported and inspected, and are deeply offended when it happens. As you have been.
But it isn't an insult! APS had a concern reported to them. They checked it out, quite correctly. There was no problem. Case closed.
Think of everything you read in the papers about what happens when people hesitate to report a slight little something they've noticed. Nothing much - a bruise, an expression on a child's face, an elderly neighbour who is suddenly more withdrawn than usual. Maybe you should tell someone - but what if you're wrong..? [horror!] So you mind your own business, and keep looking the other way, and then weeks or months later you read the headlines and wish you'd said something... but how were you to know...
I'd go one step further than Babalou, while agreeing with her that the report was very unlikely to have been malicious. The critical thing is that it was not defamatory, not an insult, not an accusation directed at you personally - it was just a question, which you answered to everybody's satisfaction. It has to be ok for people to *question* whether elders are all right. Otherwise the real abusers will go on abusing without anyone ever challenging them.
Don't be offended. They asked, you answered. Everything is fine.
Your mother's dementia sounds pretty advanced if she is causing trouble at day care and refusing to bathe or change clothes. It does sound like she couldn't be left alone for long. I personally won't leave my mother alone for longer than a couple of hours, even though there's not been many problems to justify my hovering about. I know there is a potential, so I'm not absent for long -- too many what-ifs. Soon I know I won't be able to leave at all unless she is in a NH.
We do get caught in a double bind. We're expected to have them do things, but we can't make them do them. And the elder can get so verbally and physically abusive when we're getting them to do things that it can make our lives miserable. So what to do? I think it is a good point to look for outside help, rather than to go down with the ship. In this instance, don't let your mother's dementia end with you being in legal trouble. Be truthful about problems you are having with her and accept whatever help is offered. I don't think there are many people who can deal with an obstinate dementia patient alone.
I am sure you have nothing but the best intentions and love for your mom. Maybe right at this time mom would be OK with some time on her own, maybe she would not wander off, maybe she would not fall...BUT dementia is progressive and eventually something bad would happen, you have no way of knowing when or what. Much like toddlers, people with dementia require supervision. Their mental capacity does not allow them to be responsible for themselves. As a one woman show - with help from your daughter - you may have done as much as you can, these situations do evolve into more than a mere mortal can carry. So instead of fighting APS, maybe they can provide resources to help and get her to an appropriate home, where you can visit daily if your like and still be able to hold down your job.
Daily, in home care can add up very quickly. We did this for my dad for a short period of time and it can get very expensive.
Do not feel threatened, but try to consider the alternative of a home with an open mind.
God Bless,
L
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