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SoVeryExhausted Asked December 2019

Update to APS visit.

My brother called me today and said that APS had been to my moms on Thursday. A case worker called him Friday and said that due to the state we live in and rules about independent living, a persons right to decide if they want to stay in their home...blah blah blah. Not to expect much.
So apparently it has nothing to do with protecting an elderly person with dementia who has lost 8 lbs in the last month, she probably weighs 80 lbs. She weighed 128 2 yrs ago. Never takes her meds and is at risk of falling.
She chain smokes non stop and drinks diet coke.
But I'm the one she's killing.
The mobile Dr was there last week. She called me and said my mom had lost 8 pounds! I said I bring her meals. I have groceries delivered. The caregivers fix meals for her. She won't eat. She'll eat chocolate or potato chips.
She said my moms feet were in bad shape! Yeah she has Rheumatoid arthritis in her feet. They are a gnarled mess thus the fall risk. She refuses to use her walker. I have a podiatrist go to her house every 2 months.
I'm so sick of being the one who's health is taking a dive because apparently giving 150% to a woman that doesn't give a s#^^@! About her daughter is just not enough. The accusatory tones used when speaking to me about my mothers physical and mental health.
So I guess we just wait for her to hurt herself.

TXGirl82 Dec 2019
I'm so sorry you are having to watch the train wreck. You can lead a horse to water...

Please don't let anyone's tone of voice get to you. You know the truth.

Next time Mobile Doc calls, you say something like:

"I have done all I can to see that my mother has food to eat and that she receives proper medical care and advice. She has rejected all assistance. It's sad, really. What can YOU do, doctor, to help her?"

Doctor tells you to make sure your mother eats, follows her orders, etc.

You say something like:

"As I told you (or whichever doc saw Mother last time) before, I have done all I can to see that my mother has food to eat and that she receives proper medical care and advice. She has rejected all assistance. It's sad, really. What can YOU do, doctor, to help her?"

Rinse, repeat.

I feel sure it is very upsetting to bear the weight of responsibility for your mother when she refuses to help herself. It does sound to me that you are doing everything you can to help her. I hope you will find peace in that.

Countrymouse Dec 2019
Geaton asks why professionals who interact with the elderly don't have a working knowledge of dementia.

They do. Even professionals (paid workers, anyway) at the most basic level are trained in dementia awareness. Higher up the food chain they will also have been trained in the assessment of mental capacity and the client's ability to make decisions.

There is a yawning chasm between suspecting or knowing that a client/patient has dementia, and being able to intervene without that client's consent to any proposed intervention.

SVE makes a heartfelt comment that the regulations should prioritise protecting a person with dementia who is in poor physical and mental health, ahead of that person's right to lead her life as she chooses. Lots of forum members would agree. But the law doesn't.

Just suppose, in a fantasy world: APS attend the home, assess mother and her living conditions, say "right, that's enough of that," and whisk her out of there to a facility. In the facility her feet are attended to, her cigarettes are taken away, her diet is improved, she is closely monitored for falls risks, she is bathed/strip washed daily, and she is given her medication (this just wouldn't happen, by the way, but let it pass).

It is the end of SVE's worries: she can sigh with relief, clear out the home and tidy everything away; visiting her mother without the stress of responsibility without control.

So such an intervention would be a HUGE improvement in SVE's situation. But what about mother? All of her rights have been taken away, all of her choices, and she is suddenly leading a cleanly, orderly life that is totally alien to the habits of her lifetime. What, is she supposed to be grateful? - that's stretching fantasy too far.

Mother is the client. Forcing her to lead an entirely different life from the one she has always led and wishes to continue is not in her best interests. They won't do it. She will have to be much more demented and much more at risk before they can.

SVE are you in touch with your mother's APS caseworkers/assessors yourself, or is this all being done through your brother?

About the doctor's comments: always remember, an observation is not a criticism; and a question is not an accusation. The doctor was telling you what she found, she wasn't accusing you of being responsible for it. You have nothing to be ashamed of and nothing to apologise for, and the likelihood is that everyone in your local social services knows that. Talk to them, work with them, and see if together you can't develop a plan with much better boundaries and limits on what you're expected to contribute.
SoVeryExhausted Dec 2019
After her second brain episode in 12/16. She was in a SNF for several weeks. Wouldn't eat or get out of bed. They said since she was making no effort Medicare would no longer pay for her to be there. We found a really nice NH near me. It was a residential home that had been remodeled. It looked like it came out of a pottery barn catalog. Staff was great. I stopped by unannounced at different times almost daily. She was so confused there. She had lived in her home for 58 yrs at that point. After about 2 months she started begging me to get her out. Finally after 3 months I went in and got her against all of my families wishes.
I had arranged for caregivers at home. She hadn't smoked in 3 months and said she had no interest in smoking. She was so happy to be home! She almost immediately returned to her old self (which is no picnic) my brother and I had done a sweep of the house prior to remove any cigarettes. My brother stayed with her the 1st 4 or 5 days. The 1st afternoon she somehow had cigarettes and was smoking up a storm. We have no idea where they were hid. She did great for 1 1/2 years. I'm glad I got her out. Now she is a danger to herself :(

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Geaton777 Dec 2019
In reading this post and the personal experience of Mally1 below I just don't understand why those professionals who interact with the elderly don't seem to have a working understanding of dementia. Why are they not trained in this? I'm so disturbed to think about how hard the caregivers work to protect their LOs only to be accused of the opposite. No good deed goes unpunished.

anonymous912123 Dec 2019
Let her be, if she wants to eat chips and chocolate, don't cater to her, I would go no contact for awhile see what she does, the ball will be in her court.

You are upsetting yourself for no reason. My mother refused to move out of her home, a death trap for a senior, my brother and I talked and talked until we were blue in the face, so we just sat tight and waited...she had a mild stroke she thought she was dying...she is only 94...what's the rush...so then we sprang, she is now in Florida in AL. And, here is kicker, she loves it...made new friends and is not alone 24/7...go figure!

mally1 Dec 2019
I get your aggravation/angst, SoVery.... I finally had to tell a paramedic "Don't call me again!" because she was so nasty to me, and I can do VERY little with my mom.
Others who think I don't do enough for her I just ignore, but it hurts to always be thought of as the bad guy, doesn't it?
SoVeryExhausted Dec 2019
I think the final insult will be if she ever passes (yes it appears she will hang on indefinitely just to spite me) 1 of these *do no harm* so called health professionals will accuse me of elderly abuse. Of course at this point my bleeding ulcerative colitis, kidney problems that are exacerbated due to the extreme stress of trying to work long hours to keep my job and a roof over my head combined with her non-stop needs will kill me before she passes. Boy I reread this and I sound really bitter....oh yeah its because I am. My eyes are still burning from the smoke and nicotine hell that is her closed up house with no fresh air. Geeze that sounded angry...oh wait that's because I am angry.
CantDance Dec 2019
We need advocates for caregivers, don't we? To protect the caregiver's health and well-being!!!
needtowashhair Dec 2019
Caregivers do so voluntarily. They can step away at any point. I know, many feel obligated not to but still it is done out of choice and not force.
anonymous158299 Dec 2019
CM
i respect the hell outta what you just said . the elder has their own voice . an advocate should be no more than an amplifyer .

HelloImMinsu Dec 2019
Just leave her to her fate imo. APS has been called, your butt is covered. Stop helping her. Go no contact for like 72 hours and see where that takes her.

JoAnn29 Dec 2019
It becomes what they need, not want they want. You cannot expect a person suffering from a Dementia to make rational decisions. Who has POA. If you, use it. Get a neurologist to put in writing she can no longer make informed decisions. That she now needs 24/7 care. Then get her into LTC. She is passed an AL.

Yes, she is going to be unhappy. You are taking her away from what she knows. Or wait till she falls goes to the hospital and then rehab. While in rehab, have her evaluated for LTC. Thats when you transition her from rehab to LTC. Then its little white lies. "No Mom you can't go home yet until you are better or the doctor gives the OK".

No, she has no empathy, the Dementia has taken the ability away. They be come like small children wanting it their way. I think your expecting too much from someone who no longer can reason, process or comprehend. APS has evaluated and found they can do nothing. Your Mom will not be able to live on her own indefinitely. The only way you're going to help ur health problems is to get her placed. She will have everything she needs you then just visit.
worriedinCali Dec 2019
If she can no longer make informed decisions than the OP cannot get POA. And having POA isn’t the magical solution many of you claim it to be. POA doesn’t give her control over her mother. What she actually needs if she wants control and to be able to place her mother is guardianship!
Beatty Dec 2019
I feel for you. Another in the special club of *waiting for a fall* or other crises to force change.

I appreciate CM's insight to how it all plays out in the real world but it's just so exhusting, heart-breaking & morally wrong isn't it? To leave vulnerable people at home alone in danger to themselves.

That old Duty of Care vs Dignity of Risk.
needtowashhair Dec 2019
It's a tough line. Especially in an open society. If they did otherwise than it would be the state forcing people how to live since it would be exactly that. Also, who sets the standards? What someone would consider unacceptable someone else would consider just fine. Even for a diagnosis of dementia, that's a subjective call and not a objective fact. One doctor can say someone has dementia, another can say they don't. There is no conclusive test for dementia. It's a label for a set of behaviors.

In the US. In an open society that values personal freedom, it's a high bar to take someone's freedom away.
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