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FATCAT Asked August 2018

First steps when you suspect dementia & live far away?

Hi all,


I am writing because for the past two years, I have noticed symptoms of cognitive decline - or something else - in my mother (extreme forgetfulness, circular conversations, problems managing money, depression symptoms including excessive sleep). I live on the other side of the country and am only home 1-2 times a year. Recently, a friend of hers reached out to me because she had the same concerns.


I am not sure what to do next. My mother does not have the sort of personality where I can suggest she talk to her doctor (she would definitely get angry - to be clear, some of the distance between us is because she was abusive, but I still care about her). But there is definitely a need to have a formal assessment of some kind, perhaps a case worker that could come to her house when I am home for the holidays. Lately some of the signs have made me think I need to get someone out for a formal senior wellness check (the friend suggested she is living in near-squalor).


Where do you start when you can't just accompany your loved one to the doctor?

FATCAT Aug 2018
Thank you for everyone who has replied. This forum is so helpful and I appreciate that so many of you provide "real talk." (So many people in real life make me feel like not taking my parents into my home is selfish. My home is a small apartment with children who deserve better than what I grew up with.)

The situation has gotten worse since my original post. The full story is that my father is also having dementia symptoms (that I saw signs in both of them really made me think it was all in my head). Although divorced, he moved in with my mother after causing a fire in his home several months ago. It is an unhappy and unsafe situation that I am afraid will devolve into abuse. No doubt, the stress is exacerbating whatever problems are there.

Meanwhile, in the last two weeks another friend has reached out about my mother's mental state and she has had her wallet "stolen" (lost) and lost her cell phone on separate occasions. Getting her mental state assessed in hopes of getting her somewhere healthier is really just the first step in a nightmare journey.

I have two siblings who have all but withdrawn and in many ways, I respect their wishes, but there is also some resentment there. I plan on being uncompromising with my own boundaries, but the guilt is already intense (that my parents made horrible choices when they were younger seems almost inconsequential to the shells of people they seem to be becoming).

Anyway, I will be getting in touch with her doctor (if I am still correct about who it is!) and the local Area on Aging as well as an acquaintance who is a social worker for the local Catholic Charities.

But I know that I should probably consider adult protective services as well. The truth is, I am scared of escalating the situation too quickly, although I know both of their safety is at risk. When my father was in the hospital following the fire, I experienced the pressure of "the system" to get him off their hands place him with family. They truly made it feel as though there were no options - for example, he was truly delusional (talking about going home to an apartment that I showed him had been torn to the studs) and talking in circles, but they insisted he passed a cognitive exam. On the other hand, I felt like keeping him in the ER until they could get him into a SNF was killing him.

Ugh. I am sure I will be back here. Thanks again, all!
BarbBrooklyn Aug 2018
The thing to remember is that you have NO LEGAL obligation to provide hands on care or a domicile for your parents. Just print that off and repeat it to any @&^%#@ social worker or doctor who tells you otherwise.

If your parents have made poor choices in life, well, that's too bad. There is a support system (Medicaid, Welfare, APS) out there for folks who can't take care of themselves.

YOU do not and SHOULD not sacrifice your well-being, mental health or that of your kids to provide care to your parents. They are better off with "official" sources of care.
Grandma1954 Aug 2018
Do you know what doctor she goes to? If so contacting the doctor and explaining that you have been contacted by a neighbor of your Mom's and explain the situation. Due to privacy laws they can not disclose information to you (unless you are listed in her papers as one that they can disclose information to) but they can accept information from you. This way if you can ask the doctors office to call and schedule an appointment under the pretense that they need to do a follow up test or something that would get her into the office so they can do some evaluation.
The next call would be APS (adult protective services) or the local Senior center may have a Social Worker that you could contact.

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JoAnn29 Aug 2018
I agree with the posts. Office of Aging is the place to probably start and ask for a well check. Make sure they understand that you feel Mom has some kind of Dementia and that the "near squalor" is a symptom not the way she normally or would want to live. Also say there is a witness, a friend.

I am saying this because this just happened to people I know. The mother and 40 yr old son live together. The son has special needs, is more like a teenager than adult, and has always lived with Mom and family. After complaints to OA from residents in their apartment complex about the "smell" coming from their apartment OA didn't come until the son living in Fla (Mom and brother in NJ) asked for a well visit. OA said that people can live the way they want. In this case that was not the problem. The mother was pretty much into Dementia and the son was not able to care for her or himself since he had become quite obese. OA came and took Mom out for an infected toe which ended up being removed. She is now in rehab and will not be returning. The son messages me and thinks she is coming home. OA left him I guess thinking he was capable but he isn't. In the meantime, OA is called everyday by the residents. I have wracked my brain trying to figure a way of getting him help. Finally I called one of my nephews caseworkers. TG she had worked with H and knew his background. She called the health dept. H messaged me, he was in the hospital because of chestpains. Was being released to the same rehab his Mom is in. Not sure if the HD got to him before his chestpains but I am sure he will be with his Mom now. I contacted the caseworker with the info and she will follow up.

Just want you to know that if OA doesn't do anything try the health dept. If that doesn't work you may have to fly out to take over. Think twice about taking her home with you. Medicaid is funded by the Fed government but is a state thing. Meaning it doesn't go over state lines. You have to have residency for a period of time for Medicaid.

wearynow Aug 2018
My mom is overseas and has some of the same symptoms and I'm going to bring her here and see what how I can help her. Dementia is truly global:-((. Good luck to you in this long journey
JoAnn29 Aug 2018
I just replied to ur post. Bringing Mom here may not be a good choice. Especially if she is further into her Dementia. The change could make her worse. With the changes in our Social Services and programs being cut not sure what kind of help she would qualify for not being a resident for a certain period of time. Are you willing to quit a job and spend 24/7 with Mom. Does Mom have money to help with her care? There is so much to consider.
SueC1957 Aug 2018
I agree to call APS (Adult Protective Services), ESPECIALLY since her neighbor has noticed her squalid living conditions and notified you of it.

Explain to APS that you (the daughter) live across the country but you were worried about your mom. Also mention that, for financial hardship, you can't take time off work to be with her and that there is no room in your house to take her in. That information will cover your "buns" so you will not be badgered to take her (so the state doesn't have to deal with her).

If she has less than a couple thousand dollars in the bank and makes less than $1400./mo., she can qualify for Medicaid (Medi-Cal in California). A case worker through Social Services can get her set up or you could do it on line if you know her stats.

Are you her only child? Any relatives that live closer to her that can intervene?

I was mostly estranged from my mother too UNTIL I realized she had beginning to mid-stage Alzheimer's. You WILL be involved in her life then, especially if she has named you (and you have agreed to be) her POA (Power of Attorney). You can relinquish this job and turn it over to the state-who will have total control of what happens to her. You may not be allowed to visit her.

Im sorry. This is probably the beginning of the downward slide into caretaking mom.

BarbBrooklyn Aug 2018
You can also call her local Area Agency on Aging and ask for their help.

While you won't be able to get any information FROM her doctor, unless your mom has filled out a HIPAA form giving you permission, you can certainly GIVE her doctor information about what you're hearing in your conversations and that a friend has reached out to you. Tell the doctor that your mom would be angry if she knew that you were writing. Some doctors can be quite clever in arranging for their patients to be seen.

Please tell her friend that she too should feel free to call local authorities (police, Adult Protective Services, 911) if things seem amiss. Getting your mom on the radar of these organizations may be the only way to get her help.

Isthisrealyreal Aug 2018
Call the local police and ask for a wellness check. They are trained to see problems that need attention. However, if they say everything seemed fine, this could mean no apparent danger or safety issues, not that everything is really fine. It is a first step in a long journey.

I hope you find a solution that gives you peace and provides for her needs.

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