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My dad has dementia and multiple complex health problems. I have POA and myself and immediate family all help with managing his finances, doctor's appointments, weekly visits, cleaning his old house, etc. Even though he's in AL, it's still a lot of stuff.


His siblings (all out-of-state) went from being in total denial to giving unsolicited advice. They want him to go back to driving his car, take extra supplements, get unnecessary medical equipment, and go back to his unsafe house. I think when they call him, they talk about what he should do and what we are doing wrong. Only 1 of them has visited twice for a short amount of time.


I had been updating them about health stuff when they've asked, but now I think I will only let them know if there's another life or death emergency. We tried to explain things repeatedly, but they don't get it. How do we deal with this?

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When people have dementia, they are often able to "Showtime". My mother was very good at it in her final years. You could speak with her on the phone or come and visit for a short time and believe that she was perfectly fine. It was only when you physically spent time around her that you could see the truth. You are doing the best that you can do.
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Thanks for checking in. My dad's doing okay and is seeming to be a bit more upbeat. He's been in a nice assisted living home since January but he's still more solitary than I'd like. We're encouraging more activities but it's slow going. As you all know, there are lots of phone calls and Dr's appointments.

His siblings were quiet for a while but popped up again. Sigh.
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Just saying hello, Panda

Hoping things are improving for you. It’s hard dealing with all you have on your plate. You have our support from this forum 💗. Hugs!!!
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Can you do a trial run at a facility to see how it goes? For, say, a month? So he can see that these places aren't the horror stories they're made out to be, and to give him a chance to acclimate to the idea slowly rather than suddenly. He might find a reason on his own to want to go back or just stay. Find one that has two dining rooms or more so he knows he has choices where he can eat, he may be feeling like he'll just get stuck in a room and forgotten about so show him where the activities department is and make sure it is a place where they actually have decent activities. Our facility takes our elders out to the movies, and out to eat, they go fishing, shopping, to church, and if the resident can't get out they do as much as possible to bring that stuff in. Most places do.

Our elders probably remember how horrible nursing homes used to be (they really were horrid places). Today's facilities are really quite nice, and laws prevent abuses.

I hope you can find the right place for him and he and all concerned will find some acceptance.
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I have seen this with my mother and her siblings. Mom is 92, sister 95, brother 98! Their other sister had vascular dementia and steadily declined until her death at 95 a few years ago. Mom kept saying that the NH didn’t do anything help Betty, like therapy or PT. The poor woman was bed fast and barely spoke or recognized people!

Mom refused to consider that her sister was not going to get better. And even said she would have moved sister in with her if my father hadn’t been ill. It was so sad.

She lived with the other sister for a short time but then that sister began burning out, no one should have that burden of care in their 80's. My cousins did the right thing by moving Betty into a nursing where she was safe and cared for.

Luckily no one criticized their decision, except my mom and she only said it to me. It was Betty's savings they were spending, exactly what she had saved up for, my cousins had POA and knew her wishes. Nuff said.
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Thanks to everyone for your advice, especially specific wording. I'm keeping it in my back pocket for later in case I need it. I haven't heard anything else from them.

I don't want to even suggest they become POA or he stay with them. I don't trust that he would get the care he needs and they would understand his medical needs.

There aren't any over the top behaviors with him now. I've mentioned the condition his house was in before (dust, spoiled food, extreme clutter, bills, mice), but that's not an issue in AL...which is one reason he's there.
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"They want him to go back to driving his car" is a big red flag that they are clueless as to his level of wellness! Good grief! Oh, my - they want him to return to his former house? Good grief, NO! Unless they can offer valid, reliable words of help, put them on mute!
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Ha! Make an unplanned visit then create some foolproof reason for a family drive. Guess whose driving. Let’s see how comfortable they are then.
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Tell them, well then you come and live him and be POA.
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""That won't work for him." or "That wouldn't be safe for him." or "The doctor says..." They don't have to understand or agree." Yes, yes, yes, and yes!

I will start using "That won't work for him" on my husband when discussing his dad. That way, it'll be easier to remember when family members swoop in with their "advice".
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It sounds like you and your family are working together for your dad's well being and that is the most important. Yes, it IS a lot! Your aunts & uncles may never "get it" and they really don't have to as long as they are not actively interfering with his health and safety. Is your dad listening to them? Does dad get upset at you then?

His sibs may never acknowledge your dad's needs or your good care-giving. They could be busy-bodies in general, or they could be feeling particularly vulnerable and afraid for your dad's and their own futures. It's hard to see a sib become frail.

What do your dad's doctors say? You can certainly speak to these relatives for yourself and that is completely sufficient. You can tell them their suggestions feel like criticism when you are doing all you can to help your dad. You can ask them to back you up instead of putting you down. But if you're feeling bombarded by aggressive people, it can help to share the "blame" and say, "this is doctor's orders" or "his doctor says no". You can come up with a stock phrase - be a broken record - and use the same reply every time they start criticizing...."That won't work for him." or "That wouldn't be safe for him." or "The doctor says..." They don't have to understand or agree.

The greater need for your intervention is if they are upsetting your dad with their "advice".
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I agree with the other responses. Tell your relatives that unless they are willing to come stay with him in his unsafe house, they should "put up or shut up."

I went through this with my own brother. I kept having to reinforce that it was unsafe for dad to live alone in his house, that he had forgotten to pay his bills, became lost while driving, etc., etc. I could tell that bro did not want to believe that these things were happening. I think it was just denial on his part.
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Can you change his phone number? If it’s upsetting him, I wouldn’t let them call him. It’s difficult enough to deal with dementia and the suspiciousness. My brother did this with my mom, tried to encourage her to get an apartment rather than move into independent living facility. Of course he wasn’t taking her food for all her meals, carting her to the store etc. It’s odd how people who don’t have time to help have so much time to tell you how it should be done lol!
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Does your father have one behavior that's just over the wall? If so then you can use it to stop the conversation with the friends and relatives. Mine was "Dad's doing so well here in MC and I'm so thankful I get to visit as just a daughter again. The staff gets to deal with his stubbornness about those water glasses full of his urine sitting on the window sill."
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MaryKathleen Apr 2019
Love the water glasses thing.
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I suspect these people are in denial not only about dad's decline, but their own! They don't want to face their own looming reality.
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PandaMom, you are a nice person. You need to tell them that unless they are willing to take him in to become full time caregiver, or if they are footing the bills for his care, then they have NOTHING to say about how you are helping him. You can’t deal with people who don’t listen or respect your decisions to help your father. Therefore how you deal with this is you do not answer to them, you start telling them that they have Nothing to say unless they are contributing, and visiting more. Period. End.
I am not as nice as you. SMILE.
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PandaMom, you took away his freedom??? Quite the opposite.

When my Dad moved into a senior facility he actually had MORE freedom. He was so happy not to have to worry about his house and what was next on the list to fix. No more worry about lawn mowing, and snow shoveling. Ekkk, at 95 he use to be outside shoveling!!! No more worry if the house needed a new roof, or if that strange noise was from the plumbing [it was], etc. And no more stairs to worry about. Donated the car, sold the house.

My Dad felt he could spend his free time doing whatever he wanted once he moved to the senior facility. He liked the physical therapy so he looked forward to that. But if he wanted to spend all afternoon watching an old movie, he could :)

And if there was a storm outside, he was comfy not worrying about weather damage. He had a much rewarded peace of mind.
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LTNY71 Apr 2019
Wow, freqflyer! Sounds like your Dad was of much "sounder" mind than Panda's- usually a dementia patient is simply unable to see the logic like that. Curious, did your Dad have dementia of any kind? His response to moving to AL is the dream scenario! His fully understanding that moving there gave him MORE freedom is what many of us who struggle to get our LO's situated wish we could make them understand.
Unfortunately, if the person has dementia, there's no way to get that across. Then, add to the mix clueless family that can't be bothered to come visit, yet seem to have all the answers!! GRRRRRRRR.

PandaMom, YOU owe these clue-free people absolutely NOTHING in the way of explanation(s). I mean no disrespect, but anyone who thinks a person with dementia should still be behind the wheel (ROFL, REALLY?!?!?) and living alone in an unsafe environment is just...stupid and delusional, sorry, and does not deserve any sort of ANYTHING except for you to smile and then say "Piss off".

Janner makes a good point- limiting the crazies' access to him via phone might help keep them from filling his head with unwanted trash.
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Fortunately, my mom is an only child (can't believe I just said that!), but I did have to put up with my own siblings' protests when it came time to relocate mom to a memory care facility. My step-siblings even weighed in and they rarely see her. No one understood that I had been the one living with her for the last 5 years and had seen the steady decline. No one got that she couldn't be alone during the day when I was at work, yet they never stepped up to say "I'll come over and stay with her," or "Maybe she should come and live with me." Once your dad is settled in a facility and has other people his own age around and 24/7 attention to his needs, maybe your relatives will see that you did what was best for him and will settle down. Mine did. They now admit that mom would not be as physically active and her mind would have deteriorated faster if she wasn't in a place where they keep her mind and body active. I think your dad's siblings may be getting a glimpse of their own futures and are afraid to admit that they are all growing older and might require similar care in the near future.
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Get doctors and other health professionals on your side. I have been dealing with the same thing - doctor says, 'well it's a textbook case of denial.' I also said I would update about health - but interestingly - after they thought that there wasn't as much money available, they just don't seem quite as concerned about health. I was also accused of causing the mental decline, and I can only imagine what they tell other people about me. I know I've done a really good job, but wish I could have had nice supportive family members to lighten the load. Instead I seem to have gotten selfish people who care more about money than parents.
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Idnt knw how i would answer cuz im dealing w the same similiar problem with my siblings. My dad has passed n jan. 27 of this yr. I buried him without lil money tht i have n not asking thm for help with anything but still torturing me over how his funeral was was paid n if he had ins. N how much money was left n so on n so forth i dnt understand how these ppl can b so concerned abt things tht dnt matter to thm i got stuck with the bill n still here i am providing n caring for my 90 yr old mother whos giving me hell bcuz im the one child she nvr liked but yet im still by her side. So who has an answer i just let it go n let my siblings crack their on heads by thm trying to figure things out on thier own. Cuz i gve up answering their phnes calls n texts. Cuz they nvr had time to come n visit MY DAD instead they would text n call. So no i gve up on thm i let everyone just figure everything they wanted to knw on their own ohh i am also POA for both parents
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So sad. You are the one with a real relationship with your dad, not them. They are not helpful to your dad or you. They should be complementing you for doing what was needed.

I agree with other posters who say you don’t owe any explanations. If you want to tell your side, simply remind that that you were trusted by your dad to have POA and you are doing what you feel is best.

They have nerve to question you and by doing so, they are insulting. Your dad doesn’t need confusion and you certainly don’t need additional stress and aggravation by people who call themselves “family.”

If family members can’t act like loving people than why should they be treated like family? They can’t have it both ways, right? Why should they think they can insult you and you will treat them with respect?
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I agree with the others that the siblings are maybe “over-empathizing”. I have seen this as well in our world. I think it hits a little close to home for them. Natural, I suppose. Plus, they don’t deal with him on a daily basis and as is all too often the case, the least involved seem to have the most opinions on placement, etc.

Cutting the information flow sounds like a smart way to deal with this. You have no obligation, and quite frankly, you have enough on your plate. It will minimize their ability to basically make you feel guilty about a decision that is already difficult enough.

And unless you really think someone is going to come up and kidnap him, your time responding to their ignorance is wasted. (You could be doing something to preserve your own health and sanity, like sitting on the porch reading a book on NON-elder issues. Methinks that would be time better spent;)

I hate to say it, but a little passive aggressive can go a long way as well. For us, it was the only thing that finally got people to back off. “I realize it is common for people to be ignorant of the inner workings of dementia and that makes it hard for you to understand. Luckily, you can just be his sibling... his doctor has it covered. Don’t worry your pretty little head about it, just walk down memory lane... any experienced professional would say the same.”

I also went so far as to share a “when he says something that seems odd, check with us first... what you are hearing may not be accurate. That will save you the embarrassment of falsely accusing the people taking care of him (us).” :D. That doesn’t sound like it would help in your situation, but I thought I would throw it out there anyway:)

I don’t know your people, but some people just hear nothing unless it is a little off-putting to them. This, by the way, is not my norm. Most of the relationships DH and I have are wonderful because they are healthy. If I have to engage in mindgames with people to maintain relationship, I just choose to withdraw from the relationship.

Unfortunately, this was a skill I had to foster simply to survive our years of caregiving.

And NYDIL... love your story:)
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NYDaughterInLaw Apr 2019
I love this reply of yours: “I realize it is common for people to be ignorant of the inner workings of dementia and that makes it hard for you to understand. Luckily, you can just be his sibling... his doctor has it covered. Don’t worry your pretty little head about it, just walk down memory lane... any experienced professional would say the same.” 

And I'm the same way about not engaging in mindgames.
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My my sister in law refused to let her mother come stay with them for a few weeks so I could go visit (I lived in Florida) my mom as my dad had just passed and she need my help sorting through Dad's stuff. She said she would lose her benefits (?) if they found out she was living with them. Even for two weeks. At that point I had to move her into AL. I told my sister-in-law what I was going to have to do and I didn't want to hear one negative remark from her or her husband, period. They honored that and kept their mouths shut. By the time they were able to visit her, she was to the point where she didn't recognize them. Heartbreaking for them but my attitude was "so what!" I loved my mother in law and did my best for her. She lived with us for years before she got so bad I could no longer care for her. We got along great and I enjoyed having her with us and my kids loved having a grandparent around. If they had complained they knew I'd drop her off without their consent and they would have to deal with that. (I did that to them once when I had an emergency at my mom's (when dad first went into the hospital). I couldn't get them on the phone so just showed up. I did pick her up on my way home. But couldn't get over how they didn't want to help with their mother so I could help mine.
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NeedHelpWithMom Apr 2019
whaleyf,

That’s when we see people’s true colors, isn’t it? Anyone can stick around when everything is fine. Real family and friends are always around when you need them. The people who only offer lip service don’t matter. The people who criticize unfairly don’t matter either. You did what was right. You know that. It hurts not to be acknowledged but those people never will do that, nor would they ever be humble enough to admit they were wrong or apologize.
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Uh....you don't. Just ignore them and keep doing what you're doing. Your dad's fine, safe and sound where he is. Let him stay that way. If his 'relatives' see fit to put their 2 cents in, smile and nod. Then pretend they said nothing. ;-)
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NeedHelpWithMom Apr 2019
I like it!
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His siblings are the main problem? They are probably frightened and or in denial, after all it hits closer to home with them in a very different way. My mom is the oldest of 4 and her interactions with her younger sister in particular are difficult for all, she just isn't able to be "The big Sister" the way she used to be. But we are fortunate that her siblings while always wanting to be present defer to us her children when it comes to care and decisions. I like you by the sounds of it have taken on the role of updating family and friends through any major events, I set up 2 group text chains, one for my siblings and Mom's siblings and one for those family members as well as cousins and close friends she wanted updated after her stroke. One I updated more often of course and more detailed but I was able to keep them happy and feeling in the loop for the most part, circumventing questions and input by updating once a day, week etc as the major medical events require. One suggestion I would make is when keeping them updated make sure you make it clear her doctor advised or feels...true or not you as POA are the one in touch with the professionals so the doctor not signing off on him driving again after hospital stay or doctor said it's time he stop driving The doctors felt strongly he shouldn't be on his own in this house anymore, dangerous for him and IL allows him to stay independent longer. If he moved in wit you or you moved in with him, if caretakers moved in he would be far less independent than he is in his own IL apartment but safe enough with experienced help right there and keeping an eye on him to be approved by the doctors as a satisfactory arrangement.

Then put a little pressure on them... it would mean so much to Dad if his siblings could come visit, see his new place and based on the doctors assessment you know the sooner the better so both they and Dad can have some memorable visits while he is still active and able to engage the way he wants to. He doesn't want to spend all his time with them bedbound and not remembering them visit to visit...it would be so helpful for you too...
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PandaMom Mar 2019
My dad is also the oldest, so part of it is them probably not wanting to admit that he's declined and being scared of their own aging.
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Polar;

I think that "elders" in many cultures think of the next generation as "kids" no matter how old or how expert.

The thing is, you are your dad's POA. He trusted you when he was competent to do the best for him. You owe his siblings nothing, nada, bupkis!

"Would you like to take over his care? Please feel free to sue in court for guardianship if you think you can do this better".

"Dad has dementia; it's a progressive disease; that's very said, but it means that those of us who live him need to work together to keep him safe; safe might not be the same as happy."

Ask if they've read Atul Gawande's book On Being Mortal. Tell them that your have been tasked with making hard choices; mostly, it's a matter of choosing the least bad choice. There is no longer a "best" choice.

And one more thing. Just realize that they have NO clue what you are dealing with. They read the stories in the popular press about how elders are being over-medicated and "warehoused". You know it's not what is going on with your dad.

Be grateful that you know what the right thing to do is and ignore the "noise".
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I'd tell them that you are comfortable with the decisions made regarding your dad's care, and will let them know if anything changes, and just end the call if they start in with criticizing.

I'd also ignore any calls or texts that you don't feel like answering. Some questions and comments from rude and nosy relatives don't even need a response.
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When we went through this with my FIL's siblings and very large extended family and network of friends, all of whom thought they knew better than we did what he needed, my husband started saying "You may know my father longer but I know him better." That stunned most of them into silence. But one of my husband's uncles would not accept that, and tried to pull the old "Respect your elders, sonny" line on my husband who quickly snapped back: "Visiting for a few minutes every few weeks does not make you an expert on my father. Please respect the very special relationship I have with my father." My husband is his dad's POA and is the person my FIL goes to for practically everything.

You don't owe anyone an explanation. Learn to change the subject by saying something like "I worry about my dad more than you can imagine. Can we talk about something else?" If they won't let it go, end the call.
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polarbear Mar 2019
NY-DIL: You've got a real man with a strong backbone. Good for you.

We women need to firm up ours as well. We tend to be too nice and too concerned about what people think.
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Pandamom - I have a few suggested comebacks for people like your dad's out-of-town relatives:

"If you want to see how things really are, then come and see for yourself."
"If you want things done your way, do them yourself."
"When I need your advice, I'll ask."

Be blunt and rude if necessary. Surprisingly, when you push back, they'll learn to respect you. They might not like you, but they'll respect you.
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PandaMom Mar 2019
Thanks, I think your advice about being blunt is good.
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Thanks to everyone for their responses.

I had a bad migraine the other day after a few long group texts from them. I've tried being polite and explaining things but they say things like "he sounds fine over the phone." He doesn't, but they are not really listening to him either and dominate the conversation.

Like everyone said, I will just cut the communication down. I sometimes wish they would visit before he declines more or the worst happens. Not for me but for my dad. But on the other hand, seeing the issues in person is not a guarantee they would "get it."
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Jannner Apr 2019
This happened with my mother, except my siblings not hers. I saw dementia starting for years but she was able to put on a front when they came for brief visits. I had a family meeting and they blew it off, leaving me to care for her and my more advanced dementia ridden stepfather ( his son came occasionally basically to run them ragged going out to meals constantly, shopping , which my mother and sf paid for so I got to pick up the pieces after they left them exhausted)
People see what they want to see. Eventually, I stopped telling them and just did what I wanted to do. Now my sister sees it ( since my mother treats her cruelly like she has me) but my brother still thinks she’s a little confused 🤷🏻‍♀️. It’s not worth the additional stress trying to convince someone who would rather not see it.
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