Some of the annoying things people say to caregivers........

LadyTexan

Well meaning people, are often at a loss of what to say, so they fill the void with what they think is acceptable. Often, I prefer silence instead. For example, I was talking to another caregiver. I informed her that my DH had Early Onset Alzheimer's Disease.

She responded like so many people do, "does it run in the family?"

My thought bubble is "what difference does that make?" Its a crummy, heart breaking disease, that is killing his brain and making us broke. I am especially sensitive to the question because DH is adopted. My answer to what I consider a "filler" question depends on my mood.

I know people are well meaning and may not know what to say. Silence is okay.

June45

I find it annoying when a non-caregiver tells me that I need to take care of myself.

Paris20

The take-care-of-yourself advice is usually meant well but for us caregivers it’s rather ludicrous. The advice I disliked most was to buy my husband crossword puzzles and brain-teasing exercise books. When I said they’d do no good, I was looked at as a Debbie Downer.

JoseyWales

I would just prefer words of sympathy, and no advice at all. I hate it when they ask if it runs in the family, too. I just tell them that no one out of DH's 7 brothers and sisters and approximately 100 cousins have it. 

Early on, it seems like everyone had some sort of "remedy" that they were calling to tell me about. From studies on mice to quacks selling quick cures. And everyone thought I needed to follow up on their leads. Seriously, NO.

Buggsroo

I was at lunch with some work friends. I informed them that my husband has dementia. One of my old friends said that he sounded normal on the phone. I said that was because he was on the phone for a few seconds, if he stayed on the phone with my husband he would soon realize that there was a lot of repetition. 

I felt resentful. I felt he was not accepting what I was saying. I realize how much my life has changed. I felt very sad and depressed when the lunch was over. 

JoseyWales

OH another thing that bugs me that people say, "I get it. My grandma/grandpa had Alzheimer's."

Not. Even. Close.

Crushed

I hate to tell  you this but IT GETS WORSE !

 I do not include the religious types who claim it is god's will......  Those can elicit a violent reaction .  Those who merely say they will pray I accept graciously.

1) the first group are those who want to blame you for the Alzheimer's (your diet didn't have enough dog turds or whatever)

2) The second group tell you you are a terrible caretaker(whatever you do e.g. You dont feed you LO the right dog turds)

3)  The third group tells you that Aunt Martha had it much worse and you should count your blessings e.g.  You have a decent supply of dog turds

4) the fourth group say god help you if you want to have any other life than being a caretaker. e.g. if you are tired of dog turds 

Sometimes you have the right answer.  A busybody once asked "What did you do to prevent the Alzheimer"s?  I said

"we had sex for brain stimulation every single day  just like the book says. Maybe that was not often enough"

 

Paris20

Crushed, I want to thank you for the one-and-only laugh I had all day. I’d better hide those dog turds that some do-gooders sent me.

June45

JoseyWales wrote:

OH another thing that bugs me that people say, "I get it. My grandma/grandpa had Alzheimer's."

Not. Even. Close.

Josey, Oh yes, yes yes!!  I had an office manager at a medical facility tell me that.

Ed1937

I've been lucky in that people haven't said many of those things to me. The most I get is "How is your wife doing?". We were at a local restaurant about two years ago, when my wife was still doing very well. One of the waitresses, whom we knew, said in a very surprising tone, when I went to pay the bill, "She knew my name!!" Almost as if when a diagnosis is made, people forget everything.

Stuck in the middle

Just wait until one of your children commits suicide and people tell you he's in Hell.  That'll test your temper control.

June45

Oh Stuck, that is horrible and cruel.  I don't think many could control their temper or tongue on that one.

Jo C.

I gave up.  No more information; no discussion; accept that others do not mean to be so vacant or clueless or unintentionally cruel; it is people who do not know - we were once kind of like that. If anyone asked how things were going, I simply said; "No change," and then changed the subject.
  
 One of the cruelest thing I ever heard was from an Infection Control Nurse; I shared a large office with her.  She was about 60 years old.  It was during the early days of AIDS; she was having an educational presentation for the public that evening re AIDS.

 She had engaged a speaker for the evening; a mother of a young man who had died of AIDS. The speaker mother called to confirm the time; I could hear one part of the call.  The RN got into a conversation with the mother telling her that she was SO sad that her son would not be in heaven due to his being gay.   OMG; I could not believe my ears.   She went on to say how she pitied the mother having to live with her son in hell, etc.  Well . . . . that mother cancelled her speaking engagement that night.

 Me?  I stomped off to the CEOs office, explained that either I got a different office or I was gone;  got my office the next day.

 Oh; by the way - the offensive RN?  Her own adult son was gay; a bright, dear fellow; but she had "prayed him straight."  She really thought that.  Poor son; always hoped he found a good and happy life.

Sometimes is just defies belief how someone can hurt another so badly with the words that never needed to have been spoken.

Those who addressed dementia clumsily; I just learned to let go and not let it bother me; many of them meant well but were so uninformed and clumsy. 

 J.

  

Crushed

Stuck in the middle wrote:

Just wait until one of your children commits suicide and people tell you he's in Hell.  That'll test your temper control.

I  believe it would test my right cross. Just remember to keep your thumb outside your index finger and hit with the the full knuckle on the point of the jaw 

  

ThisLife

Crushed, thank you for the laughs. : )  Stuck in the Middle, a hug from a fellow traveler.  A diagnosis of breast cancer will also get you a ton of input on what you should or should not have done.  In any case I bless the people who have the grace to just say I'm sorry and give a hug.

Buggsroo

Crushed,

I laughed out loud when I read your post. Thank you.

I have a very dear friend whose daughter committed suicide last year. I have been trying to be a supportive friend. We meet once or twice a month and walk through a local graveyard. She is in such pain, blaming herself. I tell her she did everything she could, her daughter lied, kept secrets etc. We commiserate with each other, cry together. My heart breaks for her. If anyone said anything nasty to her, that would hurt beyond the pain she is suffering from right now.

abc123

Anyone who says anything terrible is God's will doesn't know what they are talking about. Stuck and Jo, the people you encountered also don't have a clue as to what they are talking about. How dare they pass judgement. They are heartless idiots in my book. 

Crushed! THANK YOU! I had a rough day trying to help my Dad help my Mom. I needed to laugh out loud! Unfortunately I am out of turds, I pooper scooped the yard today.

LT, tell them that DH is also your first cousin and while it doesn't run in his family, it does run in yours. That should give em something to scratch their noggins about. 

Stuck in the middle

Oh, was that a joke?  I thought Crushed was serious.

Crushed, I'll bet your faculty picnics are fun.  Your team may not win the badminton game, but you'll win the fight afterwards!

CStrope

Army_Vet60 I felt the same way, and then the most miraculous thing happened!  2 of my high school friends called and said they are meeting me for a weekend of relaxation and friendship at the halfway point between where we live.  I was so overcome I couldn't stop crying!  They let me pick a weekend when I can manage to get away and we're planning on it next month.  Can't Wait!!!

Gig Harbor

I have a 74 yo friend who says her grandma had Alzheimer’s and she knows all about it. She hasn’t seen the grandmother since she was 18!!!

amicrazytoo

I have been fairly lucky to have not received many comments directly. I do warn people I hire to work in or around the house, "My husband has dementia," they usually respond with, "oh my grandparent has that."  It makes me feel like they understand, to a point. They really don't understand, never will, unless they find themselves in the same predicament.  Thank goodness we have each other here on this forum.

Crushed

Two years ago I took DW to Arby's for lunch. I was hand feeding her and telling her funny stories. A "scruffy" looking fellow kept watching us.  As we  went to leave he jumped up and held the door for us like the doorman of the RITZ. Then he said "I took care of my mom with Alzheimer's, you're fabulous"   Like Blanch DuBois  I have always depended on the kindness of strangers.

Jo C.

abc; she was the meanest, cruelest person; we had to share a large office while some construction was going on.  She played religious music on her CD player all day long, attended church several times a week, but would set  people up for a "gotcha" sort of dynamic and try to do others in who she did not personally like. It was horrible.

Could not stand it and made me feel as though I was part of her sick dynamics just by being in the same room with her; the CEO had an idea which was why he changed my office so fast.  Either that or I would have been tempted to . . . . well never mind.  I just pictured it in my mind.

And thanks for the out loud laughs, Crushed. Priceless.

J.

Rescue mom

Worst for me is “he looks good, are you sure…?”  Or those who have a 5 minute encounter, where DH does nothing but nod and smile, then they say “he sounds/looks fine, maybe you just need a different doctor.” 

As Army Vet said, those who say “just let me know what I can do,” but are never available (regardless if asked specifics as often advised, such as bring milk when you go to store, or more open, such as stop by when nearby) were hurtful, but I learned how those offers go.  Or they say  “I’m going to stop by this weekend.” I always encourage visits. The visit doesn’t  happen.

I don’t mind a sincere question about the disease, like family/genetic  connections. I figure the person has personal concern, and if I can help educate people, that’s fine. It’s hard to describe, but you can tell the difference in that and being nosy or preaching.

Jude4037

JoseyWales wrote:

OH another thing that bugs me that people say, "I get it. My grandma/grandpa had Alzheimer's."

Not. Even. Close.

I’ve gotten that from a neighbor, her daughters mother in law had it so she Knows what I’m going through . Well my mother in law had it and I did many things with her. I was the one who took her to doctor appointments etc. and I didn’t get it. 

Each case is different and although they have experiences , they are not yours. Sharing on this site has shown how some people can go through this and it’s just sad but others go through a true hell. I wish I could think of a response that wasn’t cruel but conveyed that no one Knows and it is not the thing to say to someone who is experiencing it.

JDancer

Crushed- Your Arby's story brought a tear to my eye. It's great when somebody really does get it.

8 years ago, I was diagnosed with breast cancer. My favorite response when I told the news was, "I'm so sorry you have to go through this." I wish I would hear the same thing (outside of this forum) about my husband's dementia.

Beachfan

Like Crushed and Blanch DuBois, I, too, have relied on the kindness of strangers and the many instances I could cite are mind boggling. (Especially since I seem to think I am very subtle in my public management of DH- - I guess when I am literally dragging him and a shopping cart across the parking lot and strangers rush in to help, it is not so subtle after all.)

On a lighter note, we are at the 'shore and our neighbors are very kind, but many are transient, or they are rarely here as their homes are investment properties and rented throughout the summer. (We have owned our property since 1951, never rented.) We have little contact beyond, "Hi, how was your winter?" or "Can you bring my trash cans back; we're going home."  But one such neighbor, across the street, texted me the day before yesterday, offering a "take-out dinner" as she planned on cooking.  She sent the menu for approval: grilled pork tenderloin, baked potato, grilled zucchini, cornbread, chocolate chip cookies and ice-cream.  At precisely 5:30, she texted, "Meet me on your porch"(for delivery).  DH and I ate like kings last night!  We chat when they are in town, they always ask after DH (they remember him painting, gardening, playing with the grands in the old days.)  She never said, "Let me know if I can do anything for you."  She just did it.  I will be forever grateful for her kind gesture; I am going to try and emulate her from this day forward!  Just thought I'd share.

Joe C.

As Crushed mentioned above occasionally you meet a stranger who really does get it. I new ice cream shop opened in my town. Recently when I was in the shop with DW, I noticed the owner intently watching the interaction between the to of us, when I was paying for our order she said quietly “my heart goes out to you”. The next time I went into the shop alone she ask, “how are YOU doing?”, “do YOU have any help?” and “if You ever need to talk just come in, talking can help”. She never asked DW diagnosis, she just knew.

Stuck in the middle

ThisLife wrote:

Crushed, thank you for the laughs. : )  Stuck in the Middle, a hug from a fellow traveler.  A diagnosis of breast cancer will also get you a ton of input on what you should or should not have done.  In any case I bless the people who have the grace to just say I'm sorry and give a hug.

Hug back to you, This Life.  

The only thing less useful than unsolicited advice is unsolicited advice on what you should have done 20 years ago.  Unless it comes with a ticket on a time machine, maybe.

Poulsbo

Crushed, you just made my evening much more tolerable with your perfect response to insensitive, ignorant clods who are clueless to the relentless emotional ravages of a LO's dementia.  Thank you.

aod326

I agree with everyone - he needs multi-vitamins (my S-I-L); it's because he's vegetarian; there must be something that can be done etc.  The "let me know how if I can do anything" crowd frustrated me - especially when it was DH's supposedly close-knit family; my S-I-L would say "I wish I could do more, but it makes me so sad". There is absolutely no polite answer to that one!

We actually were lucky in that many people just stepped up and did something, often unexpectedly. Like Beachfan, the best were people who didn't necessarily ask - they'd stop by with groceries, or treats, or dinner because "they'd made too much". Or just announced that they'd be over at a certain time so that I could go out and do something.

DH's 22-year old daughter got inwardly apoplectic at the number of her peers who sympathized with "my grandma had it too". Not. The. Same!!! Also when people said "But he's so young!" (59 when it became recognizably dementia.) She'd say to me: "Do they think I don't realize his age??"

One of my pet peeves was how so many people's first reaction was "does he still recognize you?" I guess people think that's the worst thing that could happen. For me, when he could still recognize me I wanted to scream that just because he recognized me didn't mean there were no problems. When he couldn't any longer recognize me it just felt like such an intrusive question. Plus, again - that is not the biggest issue!!

However, although I think of myself as a compassionate person, I've probably said many clumsy things myself over the years too...