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Hey all, I'd love some tips on how people deal with what I have come to call 'the uninitiated'. People who have never had to care for someone with a longterm, serious illness and who can unintentionally be very hurtful or insensitive. For me as a young adult I come up against the stereotype of 'grown child living in parents basement' pretty often and you'd be amazed at how people change their tune when I tell them I remained at home after university to help out my father, who is disabled. Suddenly I'm "Such a Good Daughter" where 2 minutes before I was "Freeloading isn't it shameful!" It just shows how isolated people are from the very idea of care-giving, they don't even consider it! It's also so hard to explain why certain activities won't work, without over-sharing my fathers' healthcare needs. Yes we would LOVE to accept the invitation to stay over with the rest of the family for Christmas Holiday...in their non-accessible house with non-accessible bathrooms. Yes water aerobics is a FANTASTIC source of exercise...for people who aren't incontinent. I've had to tell family (politely, when my father isn't around) to please, for the Love Of God, stop asking "when does your doctor say you'll get better"...MS is progressive and he will get worse! Having that brought up every visit by well-meaning friends/family was very disheartening for him. How is it that those who are so loving can't spare the time to google his condition??? Personal favorite: people assuming he has cancer. Runner up: people then commenting that "oh that's good!" when they learn he 'only' has MS. Sheesh. I'd love to hear about some of the situations you've been in and how did you handle 'uninitiated' remarks? I'm a very calm person so getting upset with people is rare, but it's so draining to educate people on such a tender topic over and over!

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My mom lost her eyesight to macular degeneration, a condition her mother also suffered from to a lesser degree. Despite living in a small town where people knew her family history and who had been told time and time again why she couldn't see we were repeatedly asked why she didn't "get it fixed" and if mom was "too scared to have the operation". Sigh. And then there were the people who would come up to her when she was out in public without introducing themselves, it almost seemed like it was a game to see if she could guess correctly who they were. She carried a white cane for pete's sakes, use your head people!

Which isn't really answering your question, but I sympathize, sometimes even family can be so dense you want to knock their heads together.
(17)
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I've been through that, still going through that. I've tried various suggestions, such as reading up on a certain medical aspect so the person doesn't drone on about some issue or another, but in the long run, if they haven't walked in a caregiver's shoes, they oftentimes just can't conceive of what we're experiencing.

And sometimes those who have now feel they're experts and need to advise me how to handle things.

Usually I just say I'm late for a meeting or something and escape.
(10)
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Gosh--when my DH was dxed with Primary Liver Cancer (due to 40 years of living with Hepatitis C)..the things people would say to us were astounding. We were trying to be open and honest about the HCV, and we TRIED to educate people about it--but met with a wall of ignorance and prejudice that, to this day, I don't understand. Lost a LOT of "friends" who were so terrified they'd catch it. We had 5 kids together and I didn't contract it, and none of the kids did. Trust me, this is one hard disease to get!!

Hubby got a liver transplant, the HCV returned, as it always does, and he did 84 weeks of a brutal chemo regimen. That bought him a few years and now with Harvoni treatment, HCV is kind of a worry of the past. Even my DH's worst case genotype was knocked out by this miracle drug.

The things people tried to sell/tell/help us with ran the gamut from kind, but pointless to just plain stupid. One guy tried to sell us "magnets" to place on my husband's belly, to pull the toxins from his liver....wow, that one had us in stitches, trying to figure out. Essential oils, juices, shamanism cures, shakra alignments.....we finally just gave up.

People would ask about his health and I always reply "he is fine, thanks for asking", Anyone who knows us well enough KNOWS he is now HCV free and we're just very grateful for the people who stood by us and didn't flee for the hills.

I'm not saying people are stupid--just not well educated about many health related issues. I got so tired of having to "defend" our choice to stay "Western Medicine" in all this.

Grow a thick skin, I guess. I've been dealing with this for over 25 years (since his initial dx..).and I don't really talk about it to people. What's the point?
(17)
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Only one time I had to snap back at a co-worker. I was grumbling about having to drive my parents all over hill and dale. The co-worker then reminded me that my parents drove me when I was a child. Ok, she was right "BUT my parents weren't in their late 60's when I was a child... big difference" :P
(13)
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I no longer try to educate, especially when they start out with how great Michael J Fox is doing. That’s all they want to know about PD. I use a short response like thanking them for their concern and that we have it covered, or yes, I’ll look into that. Then I either change the subject or disengage from the conversation.
(17)
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There is nothing you can do. Smile and leave, don't frustrate yourself.
(10)
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I share your frustration. I sometimes pray for patience. It is a virtue, so, I try not to take things to heart. AND, if these people who are continuing to be uninformed, are your family members and close friends, I'd get some links that provide solid info on your dad's situation and either text them to them or hand them the links in person. Just politely say, here's a great link that may help. It helped me. I thought you might find it interesting.

For many years I have gotten LOTS of inaccurate, ill informed, and even mean remarks about diabetes. I am Type I and most people don't even know there are types. So, there are many misconceptions. Even health care professionals don't know much about types or diabetes in general. IT's BIZARRE.

Maybe, you can educate some people along the way and if not, try not to let them bring you down. Hang in there.
(13)
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Sunnygirl, I feel your pain! My mother "read" that you get diabetes from being fat. She missed the part where I was a rapidly shrinking size 1 at diagnosis, I guess. Throw in the fact that I got type 1 in my 30's...even my newest nurse practitioner tested me to make sure I wasn't producing my own insulin. "You're definitely type 1." Yeah, that's what I told you when I came through the door...

Years ago, I had a cousin with endometriosis when it was less well-known than it is now. My parents asked my aunt how their daughter was doing and Auntie pulled out a photocopy from a book with information about endometriosis. At the time I thought it was weird but I get it now!

And, my mother in particular loved to tell me, "At least you don't have cancer! What if you had cancer???" Well...I've had friends with cancer who had tumors removed and they're fine and dandy while I still have diabetes. Not to make light of cancer, but diabetes isn't fun either.
(8)
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Mentally, "slap them silly," - then grin about it and chalk it up to their stupidity. I have told people, "Thank God you don't know what I am going through and pray you never have to learn."

I have had so many people tell me not to pick Ray up from the floor. None of them has offered to help or even had an idea of how else to get him off the floor.

Ignorance might be bliss - but not when someone "shares" their ignorance with you.

Bless you for what you are doing.
(7)
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My brother fits in this catagory, he is 80, Mother is 100. He is completely ignorant about her intelligence, vitality, love of life. Without communication with her or myself, he is a know it all, plan it all using vile means to control outcomes that have been harmful to her and myself, her 24 x 7 caregiver and POA of Health Care. I am so sick of this. He doesn't like visiting her, being with older people (he is one of them). He avoids her and myself.  He lives 8 states away and doesn't call or visit more than 1/2 hr a year. He is a real know it all.  He makes trouble.  What comes around goes around. Remember these people will reach old age themselves. It is sad that the best these people can offer is ignorance instead of encouragement and Love. Are they jealous that they can't be where you are, caring for a Loved One. They are the ones missing out. I just spent $900 on an attorney to have a phone conference with brother which I am hoping got through to him that Mother has made up her mind to be with me and that her wishes count.  The Elder Care Attorney supports her position.  That is better than my telling brother that this is what mother wants,  live with it. 
(6)
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Sister 1 rarely takes Mom to her house as Mom really doesn't leave the house much. When Mom did go it was for occasional overnight or for a couple nights. S1 would hound me if I mentioned I tired I was. She'd snap, "Well, just take a nap. I do!" I try to tell her I can't, between the hospice phone calls and their almost daily visits (in the afternoon prime nap time), phone calls, pharmacy drop-offs, my dogs' needs, my work needs from my closed business but it still requires attention, my home in another state, dealing with my ex about both those things, Mom's finances, andonandon, she'll just wave a hand blowing off all my responsibilities. Infuriating.

Sister 2 has finally stopped the sneering, "Well, why don't you just ...." A few months ago when both were on this drill I should do more to relax and not do as much, I explained to them the difference between me and them: Think of stereotypical divorced parents. The Mom cares for the kids every day, and juggles a job, gets them in school, homework, doctor's appointments, sports, and so on. The dad gets the kids every other weekend and he gets to be devoted to have a fun time while he's got the kids. Then the weekend's over and the kids go back to overworked Mom's and he gets to go back to his life.
(7)
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I’ve found to just walk away. They don’t understand so don’t waste your time or energy on them. I stopped talking to anyone about what I go thru taking care of dementia / stroke husband. I also still work full time. It’s difficult & I sympathize to all who go thru it.
(7)
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Why do you need to deal with these uneducated and ignorant people in the first place? You can never "educate" those who are or have never been a caregiver to someone with a long term, serious illness. Does it make you feel better when someone makes a comment, "oh, it must be hard to be a caregiver?" Or, would you rather someone just smile or give you a hug and to say, "God Bless you." ? They have no idea what it's like to be a caregiver, especially to someone you love. My advice is to keep it simple. Do what you can and what works for you and the person you are caring for. Turn your phone off and just leave it on answering mode. You now have the choice to explain if you want. They can figure it out if you don't call back. I've been caring for my mom for ten years now and I am completely independent and do not need to satisfy what others think. Take control. Stop draining yourself. You need to take care of yourself so you can take care of the person that needs their butt wiped.
(5)
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Well, I used to be one of those people. I never could understand why "Sally" could not help me with a fundraiser at church. Then along came my roll as the caregiver. The first thing I did was ask my entire church for forgiveness for being so judgmental.....the only thing that was helpful for me at the time. I ask others now for advice on how to deal with my aunt. I can only tell you that someday they may have a roll in the caregiving of a relative and they will realize. NO ONE realizes until they have been in the trenches. I am so sorry for your frustration. I will pray that it gets easier and the insensitive oafs are at a minimum......
(5)
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I deal with my gm who hasn't been diagnosed (sure she has dementia) I finally stopped go in over her house (we live on a family farm so she's next door) after I guess 5 years (6?) of verbal abuse from her (I was helping take care of my gd who had Alzheimer's so I didn't have a choice until he died I think 3 years ago this December. I kept going over for her to give her company after he died but my depression I think got worse because of her treatment. My mom is in denial (or seems like it) of her mom's condition and kind of more ready to point fingers at me for whatever her mother says to me. I do have my mom's cousin totally on my side however I have had a few suggestions and what though I try explaining.
(1)
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I completely get your frustration. When my husband was diagnosed with Parkinsons which later turned out to be Lewy Body Dementia everyone including family had that its only Parkinsons reaction. FFS! They often cited Michael J Fox as a great example of how its so easy to live with it. Yea sure, not, he was in his forties had vast resources at his disposal, not a 71 year old retired person with dementia as well. Dont get me wrong I'm very sorry for anyone struck down with a degenerative disease at such a young age but the two are not comparable.
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Grow thicker skin. Seriously. You have enough to worry about without taking offense at uninformed, yet well-meaning people. My brother had Huntington's Disease. Most folks had no idea what it was or entailed so I found myself doing a lot of educating, including the staff at the facilities in which he was at various times. It's a fairly rare condition. Most folks out in public just thought he was mentally retarded when I was still taking him places and I didn't attempt to correct them. It didn't really matter. My focus was on him and making sure he had a good experience.
(6)
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There are just those kind of people out there. I was about to go under general anesthesia to have wisdom teeth removed and a co-worker told me of a friend who lost his wife due to a fatal reaction to anesthesia for that very same procedure. When I was pregnant, I was amazed at how people "crossed the line" and discussed anything and everything. Should a co-worker ask me if I plan to breastfeed?? Caregiving for my elderly parents has been no exception. There will always be people who don't know boundaries and are ignorant. I could only hope that mom didn't hear the dear friends comment to each other on her rail thin body the last time I was able to take her out for lunch. Just let it go, and carry yourself with dignity. I've come to the conclusion that the energy it takes to confront or teach these people is wasted. If you do want to educate, write a screen play, or create a podcast when it's convenient for you, not while you are assisting your loved one.
(3)
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I have to agree with MidKid58 that you have to grow a thick skin. Not meant in a hurtful way to you, but people do not have filters on their mouths and dumb will come out! You can try to educate them and next week they will have learned more "dumb". Remember Forrest Gump "Stupid is as Stupid does! " Just think in your mind "Forrest" .
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A lot of people like to say platitudes that are offensive and unnecessary. A friend of mine told me she had been there and knew what I was going through...and I thought ..uh no...you had a parent in LTC with COPD, not dementia who was also hateful and abusive. So no, you don’t know what it’s like. And she didn’t have to be a primary caregiver and POA. It is crazy how people want to be "helpful" and end up being stupid or inappropriate. My sister who had breast cancer finally told people it wasn’t helpful to have people share their stories with her as this was her story she was living.
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When i get stupid questions, i tell myself S.O.S. - stuck on stupid. Gives me a chuckle knowing at least my dad can't help it you on the other hand are S.O.S.😂🤣😂😋
(5)
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I hear you and I sympathize. I've been confronting this, too, and it is upsetting. I've been dealing with my narcissistic mother for ten years now. I am worn to the woof. My back aches from an injury sustained while cleaning out my mother's house before putting it on the market. I now take a medication for anxiety. And a facial tic from childhood has reappeared. Yet I have people telling me how lucky I am to still have my mother. I have people needling me because they think I am not attentive enough to her. I just stopped patronizing a hair salon because the stylists simply would not shut up about what I do (or fail to do) for her. Where do people get the nerve? How can they think they know what goes on in someone else's family, giving them the right to judge?

I have different ways of handling this, like finding a new hair salon where I do not talk about mother or bring her in for appointments. If someone is intentionally needling me, as one older woman did at a funeral recently, I respond with vague, upbeat platitudes delivered with a smile.

"Oh, sure, my mom and I see each other all the time but she likes her independence."

"I am unable to help my mom with (whatever is being discussed) because she won't take my advice."

"Thanks for your input. I will give that some thought."

I don't get upset. I don't defend myself. I don't offer details that are none of their business. I respond briefly and move on. And then I try not to dwell on the unfairness of it all ... but that is hard for me.

If you find it draining to educate people over and over, perhaps you could just stop? Rehearse some general pleasantries and save your energy for the important stuff. Best wishes to you.
(6)
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This is the story of my life, but it has a little to do with caregiving and everything to do just with common day living and working. In this day and age, I think everyone is stupid anymore. Yours was the only article I clicked on today, because I could identify with you 110%.
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Mrs.Parker, I have a similar situation, including the hair stylist scenario. We've tried to explain and educate relatives and friends to no avail. Now I respond that she has the health issues of a 98 year old woman, and that NH is the appropriate level of care. When asked why she isn't at a function, I reply that it wasn't possible. I have one friend who keeps on pitching so she gets the icy tone, The Look and an abrupt and obvious subject change. I'm more patient with people and my DH's PD, than I am with those who tell me how to care for my mother.
(3)
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First of all, my sympathy for the necessity of having to deal with ignorant and uneducated people. Unsolicited advice and presumption that you don't know how to manage your loved one's care can really be irritating and tiresome. For those who don't take the hint with responses like, "We're managing just fine, thank you," or "That's an interesting idea. I'll look into it," I avoid them like the plague. For those who don't take the hint or unavoidables like hairdressers, etc, I'd find me a new hairdresser and don't share info about caretaking with him or her until you're assured of their discretion. I think it helps to arrive at the point where you just don't care anymore. The world is full of people who think they know more about your loved one than you do because their "Aunt Jessie was such a sweetheart; she gave us no trouble at all. You must be doing something wrong."
(4)
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You know that saying "You can't fix stupid". Well, we can't. I've tried and only gotten exhausted and frustrated. Save yourself. Keep your sanity. You probably have a good idea of who gets it and who doesn't. Most just don't even if they mean well. Shrug and change the subject or just walk away. Breathe, get rest, eat well & take care of yourself.
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People do not know what to say. I even had an LPN that we used for my late mother ask "So don't you think she just had a T.I.A. and not an ischemic stroke?" "NO, SHE HAD A STROKE AND WILL  DIE." This same woman who ran a business even had the audacity to ask "why do you need an email account?" I wanted to say "why don't you have one since you're running a business?" Sheesh!
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I wouldn’t even bother to answer them...Just ignore them & walk away. They are clueless...Just like people who think a 91 yr old woman w dementia/Alzheimer’s will suddenly get her marbles back, be able to walk/stand, wash & dress herself etc,etc etc. Nobody wants to know from helping me unless I pay them. No family or friends. They disappeared. Just stay within yourself as you are your only friend
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For anyone on here who says grow thicker skin I'm just asking you have dealt with these situations yourself correct? I've been going to psychiatrists for depression as well as verbal abuse from my grandma (which I continue to get the limited bit I do see her since I purposely distance myself) and as my psychiatrists said it's not that easy the treatment you receive from these people wear your skin ridiculously thin so it isn't easy to take comments, suggestions, insults, ect.
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My husbands deafness is caused by an accident that destroyed the nerves and the bone right behind the ear. This bone is important to hearing. I have a friend who keeps telling me how her boss did so well with a Cochlea implant. I have told her a number of times that this is not my husband's problem. My husband I don't really ever "got" my Moms Dementia thing. He kept saying to explain things to her even if she forgot. When we placed her in a NH he told my Mom she was there because we ran out of money. My daughter told him she didn't need to know that. He said she'll forget it. So why say it!
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