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In my short time as a caregiver, it appears the general public has limited understanding about Alzheimer's care. When people visit my father, they assume he just "forgets." I explain his diagnosis and it is dismissed. Almost as if there is a level of exaggeration on my part. They do not comprehend he can not use the phone/ or that he doesn't recognize his own offspring. How do I deal with this denial and keep my father's privacy and integrity?

Quick update... the visit went well. The family was able to share time. I also reached out to distant family and extended invitation to call during set hours. They did not comprehend that my father was unable to make calls or may not recognize the phone ringing. I feel better that these small steps will keep them connected. Ty
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Reply to SecondtimeMom
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You can lead a horse to water..........but you can't make him drink. Right? Print out some info and if the family wants to comprehend the situation, they will. If not, they'll continue on with the denial and point fingers at your care giving instead of the realities of the situation.........nothing you can do about that. There's also nothing you can do about the fact your dad is incontinent........and if he has an accident in front of The Family, then so be it. Hopefully he's wearing incontinence briefs 24/7..........? In any event, family is supposed to be supportive, not judgmental or telling us what we are doing wrong. I so hate that we don't get what we need half the time. My cousin is fond of telling me how much I'll 'miss my mother once she's gone' as if THAT makes ANY sense at all! UGH.

WIshing you the best of luck dealing with all the family dynamics moving forward
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Reply to lealonnie1
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whisper1957 Jan 6, 2020
I read your answer and totally agree with you. I feel at times that my husband's family don't believe he is getting worse. They question my care and it angers me. They always have something to say. I hope I don't lose it and tell them something I might regret. I am devastated as it is that I am losing my husband slowly but surely and don't need that bull. My first time ever writing about my feelings. Didn't go to work and all I have done this morning is cry. Thanks for being the first one to encourage me to write. Loved your answer.
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You can't make people acknowledge something that they don't want to.

Maybe a video would be used? Try sending a link to a Teepa Snow video on YouTube.
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Reply to gladimhere
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Perhaps if you print out a page with symptoms, you could asterisk the things that affect your father now. That makes it a little bit personal, without being too personal. I hope it all works, & best wishes.
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Reply to MargaretMcKen
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Im glad to hear that. Do not isolate your dad. If your dad can walk, perhaps, it would be fun for him to go to the grocery store with you. I used to take my mom, and I would tell her to hold on to the grocery cart. Ok mom hold on to the Wheel, we are going to "drive" around the store now... Keep your hands on the wheel...
Someone came up to us one time, and said how good I was doing this with her..
If your dad can walk, take hiim for a walk...to library, park, etc.
Hand in there...
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Reply to MAYDAY
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If they question,,, just offer for them to spend the day with you and dad.Plan the day, with breakfast.. coffee, some games or social things. Serve llunch, play music, and a bit of 'CONCENTRATION card game...
Do keep him busy.. and by the end of the day, perhaps your guests will have a better idea of what this situation really is.
Have them hold dad, arm in arm, and go with them for a little walk up the street if possible... Keep you eye on dad, you don't want anything to happen to him while in the arms of someone who really hasn't walked in your shoes.
Play his favorite music when they arrive.
Privacy and Integrity ? With ALZ? Never heard of those hand in hand.. I would spell it out for those people in question, lay it on the line, show them... No privacy... Let them see it, let them feel it. let them live it for awhile, AND INVITE THEM BACK SO YOU CAN GET SOME RELAXATION FOR A BIT. WELCOME THEM TO YOUR HOME, AND MAKE IT FUN FOR DAD!!!! Perhaps you can put your head on a pillow for 5 minutes.
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SecondtimeMom Jan 4, 2020
I have scheduled a visit this Sunday with my a Uncle. Hope it will be a step in the right direction. Ty
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It’s true. They don’t understand. They have never walked in your shoes as a caregiver, nor his shoes with ALZ.

What do you mean by protecting his privacy? Can you clarify for us?
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Reply to NeedHelpWithMom
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SecondtimeMom Jan 4, 2020
Thank you for the response. The privacy not to have a incontinence episode in front of guest or get lost on the way to bathroom.
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Print out a few simple websites, or make copies of simple explanations on a website and give to them. You cannot force them to educate themselves. So if they do just go on with this, then understand that there is very little you can do about ignorance when people refuse help in being educated. Just get on with you day. Give them a sweet smile and go "grey rock" on them.
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Reply to AlvaDeer
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MargaretMcKen Jan 4, 2020
Yes, not just the website reference but a print out - not more than a page.
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I think people who have never been a caregiver, even for a day, have no way to really understand how grinding it is on every level. I don't think it's willful denial 99% of the time. I certainly didn't have any idea, and I wanted to understand it. It's like trying to explain what it's like being a parent to someone who has never had and raised their own children. I hear resentment in your post but this is draining to caregivers. Please give the general public (and even those closer to you) the benefit of the doubt. When an opportunity arises, you can gently educate them by asking, "When you hear the word 'Alzheimer's', what do you think of?" and then a productive and respectful conversation can be had. I wish you peace in your heart and the company of understanding people.
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Reply to Geaton777
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SecondtimeMom Jan 4, 2020
Thank you for your well wishes. You are absolutely right about me feeling resentful. Honestly I am more scared that my family will disappoint me.
As suggested by poster “Alvadeer” I will print out educational material on Alzheimer’s Disease for the family.
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