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We don't have the "official" diagnosis yet, but I can tell you that his AL director believes he has early dementia and he's going for further tests with the neurologist.


Background: he lives in AL very close to me, I moved him down after a range of health issues meant he couldn't live on his own. Sibling is in another state and is one of those people who doesn't call, doesn't pay attention, then all of a sudden decides that I'm screwing up and she has to make All the Decisions Right Now Because Ugh, Everyone Else is A Moron. (I'm sure some people can relate)


But the biggest problem is that she will not accept his mental decline. She's almost worse than he is about it (and he won't accept it either, but that's another issue). It's — medication they gave him. It's — he's always been absent-minded. It's — ugh old people and computers, am I right?


The biggest problems are that when she talks to him — which is once a week, if that — she believes everything he says about the AL, about me, about my family, and how we are failing him. Which both reinforces his paranoia, which is a big element of his dementia, and puts me in the worst possible light! I had to have a whole meeting with the AL director because he told my sibling I was "preventing him from accessing his money" and she called them. (Real story? He forgot his Amazon.com password and was convinced I had canceled his debit card. Luckily, the AL director didn't believe it at ALL, but wanted to meet to talk about it anyway.)


So far my big thing is to tell him to call my sibling more, because I think the more calls she gets, the more she'll realize what's going on. But ugh. And no, she won't listen to me about this — she says "stop telling me terrible things about Dad" and acts like I'm a horrible person for even suggesting he has dementia.

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Firstly, his debit card SHOULD be cancelled if there is dementia. When you get the diagnosis the credit cards need to be the first thing to go. If you are POA you are responsible to do that.
When you have the diagnosis send it to the sibling. Having in my own family one such child, I know that arguing is worth nothing but getting your BP bumped up pretty high. Just send the paper and say "Here's the diagnosis. I don't wish to discuss this with you any longer".
If she won't listen then that is your first clue that you need not to be talking. It's that tree falling in the forest with no one there, you know.
Wishing you good luck. I know the feeling and frustration.
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I commend the AL for bringing the situation to your attention. That helps you know what is going on.

You are right to keep sending him to sister. She can deal with him and say whatever she wants, as long as the AL has your back in the situation, they (dad and sister) won't be causing any harm.

I found that my brother didn't believe the diagnosis either. I just ignored everything and anything he started by telling my dad he was fine. My dad didn't think he had any problems, so he gravitated to whomever agreed with his viewpoint.

Stay in touch with the AL and let sister find out the hard way. Especially send him her way during a paranoid episode.

Best of luck, it's so hard without a sibling that prefers blindness to reality.
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Sound like sis is in denial. Not much you can do about that. I'd not bother trying. Let her be defensive and ignorant. Whatever. Or tell her things like "I understand that this is hard to accept but it's real and it maybe you should do some research to learn more about dementia."

Nice that AL is letting you know what's going on and helping get him diagnosed. To help care for him, I'm sure a proper diagnosis is very helpful going forward. They can often handle a person with mild dementia until they get too hard to handle.

Does she ever come down to visit?

Good luck.
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499HopeFloats Feb 2022
Or tell her things like "I understand that this is hard to accept but it's real and it maybe you should do some research to learn more about dementia."

I second this. This is what I had to do with DH siblings. I was so tired of them questioning everything. It’s called flipping the narrative, lol.
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Denial among some members of the family is common, don't push them. Sooner or later, reality will hit them hard.
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So, since you're royally screwing everything up so badly, when is sissy coming to pick dad up to take him home with her so she can do everything perfectly and all will be well? Likely the 12th. Of Never, that's my guess.

Armchair critics are the absolute worst. They have All The Answers about what we're doing wrong while they're sitting on their arses in their armchairs doing bupkus.

Let sissy's calls go directly to voicemail. Record a few of dad's meltdowns and save them for her listening pleasure for a future date when she brings up the Nothing Is Wrong With Daddy spiel. And send her a copy of dad's diagnosis and MoCA test scores when they become available, like Alva suggested. Tucked into a Thank You note for all her support and long distance help all this time 😑

Good luck!
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LynnelT4shs Feb 2022
I liked that comment. The proof is in the pudding if you send reports and as you said record melt downs your father has. You mentioned the AL Director, after you record your father in a episode, not just audio, get a full video without him knowing he’s recorded. This will be the proof and the AL Director may be able to give you suggestions on what to say to her. Google Teepa Snow whose an expert on Dementia too. She has wonderful videos of individuals with dementia while their having an episode. All of these can help educate a person on how their brain is changing. Whether the information helps your sister or not it it can truly be encouraging to you and help you better understand the stages of dementia.
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You can tell your sister you may not be doing everything exactly as she thinks is right, but at least you are right there and doing SOMETHING. She is not.
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Take a break from her - don't speak with her at all . Give it a Month , 6 weeks - she will come back begging you That she will do what ever you need to help with Dad ( But Not follow thru ). She is using You . You need to make a boundary with her for your own sanity . Make sure you are healthcare proxy and POA .
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I had a similar situation with my brother and forget it - you will never change your sister's mind. Anyone who is making assessments from afar cannot fully comprehend the complexity and reality of the situation. The solution? Keep doing your thing and stop reporting to sister. When she calls with accusations and tales from Dad simply state the facts and disengage quickly from the call. Stop trying to gain her approval, she's made a decision NOT to give it. Continue to do all you can for your Dad - in the end you will look back and know you always acted with love and care.
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You're wasting oxygen to deal with your sister. We went through that with our brother. Finally i told him I'll not be discussing dad's situation any longer with him and if he keeps using the phone to harass me I'll be blocking his number and will only communicate with him by mail until he wakes up and accepts the facts. I received another nasty call so blocked his number. He sent a letter which i did not open. I sent a quick note back telling him I'd keep the letter but refuse to open it. As dad had checkups, I'd send updated copies to him from the Dr.
After about 4-6 months he came to my house apologizing as he had visited dad. He could see the changes. We talked... i have him back his unopened letter. My strategy worked although I'm not sure if it would for you but certainly worth a try. You deserve to be heard and not have to defend yourself at every turn. Good luck!
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Sorry, the only thing that worked to open my brothers eyes was Mum having a vacation at his place. Unfortunately that made Mum worse.
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I can totally relate to your situation. You didn't mention your Dad's estate planning, which includes his choice of HCPOA, POA, Estate Executor, etc. Who has the legal authority to act on Dad's behalf? If you're not POA, you may need to obtain legal guardianship through the courts.
Assuming you are legally empowered to act on your father's behalf, do whatever is in his best interest. You do not have to inform your sister though you may choose to do so. Your sister won't change. Don't put any energy into trying to change her. What you can do is establish boundaries.

Here's how I handled communications with my 3 siblings (our relationships are strained):
* I was HCPOA and POA for both parents. I informed my sisters, in writing (via text), of my legal role and sole decision-making capacity when the time came to invoke those powers. I also let them know that I would do my best to keep them in the know when emergencies happened (and I did).
* I notified the AL, SNF, etc. of my legal role. HIPPA prohibits the facility from providing medical information to other family members or friends. Your sister should not be interfering or making demands of the AL.
* To keep the trust of my parents who both had dementia, I was honest with them about everything that was going on and why we were doing certain things, like seeing a new doctor. I spoke in basic terms. They, fortunately, understood enough to know that they could count on me.
* I put my personal feelings aside and kept my siblings informed of key (not the day-to-day) health issues and any decisions that were made to deal with a critical situation. I did so via text message so that it was in writing.
* I never asked for their permission.
* I was open to conversation, not criticism. I accepted calls from my siblings if they wanted to ask questions.
* I shut down any negativity and redirected the conversation toward mom/dad's best interests.

It was a long road for me. Be strong. Your dad needs you.
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DoingMyBest73 Feb 2022
I have all of those thankfully. In a better state of mind, Dad chose me to do those things. I try to remember that.
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It sounds to me like your instincts are right on. We don’t always arrive at the same place at the same time. The dementia will progress because that is what it does.
You have a front row seat and she isn’t even in the theater.

This decline in dad will affect you in different ways. You each have your own relationship. Right now she would rather blame you than believe that dad is ill. It’s good that dad has her to complain to and sometimes it is the meds or a UTI or constipation or some other issue that is running along with the dementia.
If she gets the phone calls, that’s great.
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She will come to terms with it eventually, especially if she takes the time to actually come visit your Dad. Don't let her drive you crazy.
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dear doingmybest,
:)

i bet, you are doing your best, and more.

obviously, i don't know your sister at all.

these are just guesses:
--some siblings play dumb on purpose. why? what do they get out of it? (1) if your Dad is ok, that means there aren't any problems to fix. great! (2) if your sister anyway didn't/doesn't have a nice relationship with you, she might actually want you to get into trouble. by believing (playing dumb) every word your Dad says, and telling AL, she gets you into trouble.
--a sibling who really, truly is in denial about their parent's health? do they exist? they're normally the same sibling who do - nothing - to help. again, it's not that they're in denial, it's just that it's much better to say "everything's fine", then there's nothing to do.
--a real, caring sibling who is truly in denial, would believe you (helping adult child), regarding all the warnings that your parent is NOT ok.

----

"he's fine!"
"she's fine!"

why would someone say that?
so they're off the hook.

they don't need to help.

---

hugs to you!!

bundle of joy :)
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Beatty Feb 2022
Interesting...
Yes I see it now.

What I had seen as denial - "he/she's fine" = no action on their part required.

Thankyou 🙏
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I have two of those siblings and they made my life living hell. They were very aggressive about their opinions and always looked for everything I did as wrong; indeed, they had no knowledge in this area and my professional experience and training in memory care amounted to nothing in their minds.

Until your sister spends some time with your father over a period of days, not a couple of hours, she won’t understand the situation. Because of his cognitive decline, your father is unable to recognize his decline. Arguing or debating with them about the situation won’t help anyone, especially you. Denial is part of the grieving process. Try to find the lighter side of things and work with your father as much as possible. This situation is very tough for each of you and realistic expectations will make the journey more palatable.

In the meantime, based on the information you have shared about your sister, cross every T and dot every I. Keep clear records and be ready at any time to provide financial and medical records. If your father has not already set up a power of attorney, trust or medical power of attorney, jointly with your father and sister set up an appointment with an elder law attorney. Your sister will see how your father is functioning in the meeting and she will not be able claim you took advantage of anyone.

This is a tough road you are heading down. There are wonderful resources out there. The Alzheimer’s Assoc. is a great place to start. Teepa Snow has numerous videos on YouTube. She is great at explaining dementia and offers many tools for handling all kinds of situations, including communicating with siblings. And, of course, this forum is always here.
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Are you his POA for medical and financial decisions? Hopefully you are. Make sure that he has all of his paperwork in order while he is still mentally competent to sign legal documents. He should have a living will with his advance medical directives, powers of attorney for medical and financial decisions, a will if he has assets. You may need an attorney if he has assets. Banks and other financial institutions have their own POA forms, and he'll also need to sign them (and have them notarized). Also, his POA should be on file with Social Security and Medicare as someone who can speak on his behalf. You can do this with a phone call with him sitting next to you (if you will be that person). Don't take any of the accusations personally. With your father, the paranoia may be an early symptom of his dementia. All the best to all of you! You have a difficult road ahead.
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Doingmybest, I don't know what to do with these sorts of siblings.

I know I would FEEL like shaking them till they saw sense! (Sorry, illegal & inappropriate!)

I've met ones like your sibling before. Telling you this tale to hopefully give you a laugh 😉

The caregiver sib had been giving updates: Mom has Alz, Mom fell, fell again, fell & broke her hip, Mom has delerium, Mom can't swallow... not sure if she will recover.

"But she looked alright to me last time I saw her". True story. Denial I thought at the time. Denial to protect them from the painful truth.

3 days later that same sib finally seemed to let some reality in. But no..

Screaming out "Mom can't move, Mom is dying, Mom is dead!"

I found an elderly lady, propped up in bed, skin pink, warm to touch, regular breathing, strong pulse. Sleeping.

I surmised the sib lived in her own head. Only saw the world through the lense of her thoughts & feelings. Appeared little or no information went through her actual senses, her eyes, ears, touch. She paid NO attention to SEEING her Mom alive, did not LISTEN to the Doctor's & Nurses explaining Mom's condition or even FEEL her warm hand.

What influenced her was her own thoughts, over all else. That was the only truth to her.

Your sibling does not listen to you. But if there is a scale of this style of personality - I hope your sibling is not to that extreme!

Trust your gut, your eyes & ears as well as your brain. You've got this.
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DoingMyBest73: Your sister's consensus of opinion is flawed due to her distantness. Until she wants to put in some of the hands-on work, she has zero recourse to critique.
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DoingMyBest73: For distant family members denial often seems to be the only way to cope. Still now, 3 years after my mom was diagnosed with vascular dementia, they are ALWAYS miles behind in recognizing the cruel reality. Their defense mechanisms do not only leave people like you or me very lonely in being the only one caring and taking necessary steps. More, their denial often turns into aggression towards the care giver, because accepting reality would disturb their nice and comfortable life or at least produce massive guilt for not helping out more. So it is easier to blame the truth-teller for their perceived "exaggeration", "gloomy pessimism" and - finally - their ongoing depression (so that the caregiver becomes even more isolated in the process). It is a scape-goating mechanism.

Injuste, f*cked up, but very, very common. My heart goes out to you.
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Who is POA for Medical and Financial affairs?
If it is you do not overly concern yourself about what your sibling says. She can not make decisions that will effect his Medical care or his finances.
(If you are not his POA and she is then step back, way back, let her handle meetings and all the "emergencies" that pop up with him. ) If there is no POA then you most likely should obtain Guardianship so that you can legally and effectively make decisions for him.
Remote family and friends do not comprehend what the decline is on a day to day, week to week basis. Some of this is they don't see it other is there is a denial about what is happening.
If he is declining you can not expect him to call anyone more often. He will forget, he may eventually forget how to call, who he is calling. If you want her to talk to hom more often then she is the one that should be making the calls.
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