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Why do people always say, “I hope you and your parents are well.” Well!?! They know they have Alzheimer's and Vascular Dementia and both are in the late stages. It is so annoying. I feel like saying to them, “No! They are not at all well! They both have fatal conditions and are living a horrendous life at the moment, thank you.”


That is what I want to say or scream at them but what should I say?

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"They're not well, but I appreciate your optimism and thank you for your concern."
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anonymous974934 Dec 2019
I like this response.
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Els, What would you like people to say? I am not being facetious, unless we educate people they will have no clue.

Especially this time of year, when greeting cards are being sent, we may see people that we do not see the rest of the year, we can expect people to greet us with or write good wishes.

I have people tell me I am lucky that my Dad is still alive. Yes, lucky to have had another year of abuse from him. To deal with an ever growing hoard. I let their comments slide.

If you want to answer honestly, what about, "it is challenging to watch my parents decline... and hard to take care of their ever growing needs"
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anonymous974934 Dec 2019
I get the "You're lucky your mother / father is still alive" and "I wish my mother / father was still alive" a lot. These are my least favorite comments. It adds to my already heavy feelings of guilt. The "How is your mother / father?" questions haven't bothered me. Maybe those asking me have been genuine in their questions.
I've met many other care givers since becoming one myself, and I don't know what to say or ask them without coming across as insensitive or insincere. I, too, would like to know which comments and questions were best received.
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Sometimes a comment where people mean well does more harm than good. It's very annoying indeed.
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The key word is "hope", thus the person is hoping that there isn't anything totally out of control in one's parents lives.

I have a cousin who I don't know very well as he was much older. Every Christmas I would send him and his wife a greeting card. And in my holiday letter would write "hope everyone is doing well". Neither he nor his wife would write a letter back, therefore I had no idea what was going on in his family. I did find out a couple years ago that his wife has dementia via word of another cousin.

Gosh, how would I word a holiday letter to them knowing the wife has dementia? Any good advice?
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Beatty Dec 2019
Hope you are both well is fine to use. Well can mean 'healthy' or 'in a good way'. You can still hope for this - people with dementia can still have a good day.

If he didn't tell you himself, he may not even know if you know her diagnosis or not. It's the thought that counts. Send the card & letter. It's impossible to know how he feels but I think it would be worse to just stop getting cards & letters from people.
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I think that people are well meaning and at a loss of what to say. I think there is little that CAN be said. I guess it would be better to hear "I know your Mom and Dad are having problems and I wonder how you are coping; it has to be very hard". But it is the age old thing, and why, ultimately people walk away from the ill and with those caring for the ill. They simply don't know how to approach us best. I think they do their best.
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If they know how they are doing then it sounds like a generic thing to say. Unfortunately some people just don't get it. And then there are the genuine ones who really do understand.
Prayers said for you and yours.
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They mean well. Its hard to know what to say.
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NeedHelpWithMom Dec 2019
Sometimes they mean well. Or some people truly do. I get that but some people are just nosy and others are just plain dumb, right? We either educate them or shake our heads.
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They're still talking to you?

Many, "disappear" learning of medical ailments , lest they are asked for help
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So, just to inject a totally different viewpoint here;

Yesterday, I was out with a friend; her mom, who is 99 has dementia; this lovely lady has 24/7 aides paid for by Medicaid.

My friend expressed displeasure that when she calls, her mother tells her that she is not yet dressed.

When my friend is known to be coming to visit, the aides make sure that "mom" is dressed and up in her wheelchair.

I mentioned that "mom" is still a person who is allowed to say "no thank you" when/if the aides say "would you like to get up/dressed now?"

This information did not go over well with my friend. I'm never sure WHAT to say to her.

In the same fashion, when my mom had dementia and was in a nursing home, my friend often said things to me that infuriated me.

I think having a parent who is declining in this way makes one angry at whomever says ANYTHING to you.

Understand that part of this may be a reaction to your own powerlessness and move on.
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gdaughter Dec 2019
I'm still sitting here totally shocked that someone has 24/7 aides paid by medicaid....and while agreeing totally with you that mom has rights to say no she doesn't want to get dressed...that if the friend is concerned she ought to raise the issue herself and get to the basis of it.
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I saw my S I L a few weeks ago. She lost both her mom and dad last year and is feeling really down. She kept apologizing to me. I said "listen, stop apologizing, there is no shame in feeling depressed. If more people were open about it there wouldn't be such a stigma attached to it"

So, I hazard to say to you, say the same thing if someone asks how your parents are. Tell the truth! You don't have to blurt it out in an angry way. Just say something like this "to be honest with you, my parents are both in declining stages, it's very hard, I hope you never have to deal with this but thanks for asking" Maybe it would help them if they ever have to deal with the same thing in the future. The truth will set you free!
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seekingjoy Dec 2019
I like your answer
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Gershun is right! When people ask me on how my mother is or say "is your mom doing good" and they know she has VaD and CHF. I tell them no she is not doing good. She has a disease that has no cure and she does insane things. But I'll be sure to tell her you said "Hello" not sure if she will remember you. But thanks for asking! Then they will usually follow with "I hope she gets better soon." This is where I walk away because I just want to scream at them and tell them she isn't going to get any better! Ugh!!

I just find telling the truth is best...for me!!!
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I have a relative wirh mental illness. Another relative (DH's side) always asked about her. Nice - except it was always "How is she? Does she take Lithium?". Seriously!!!?? Not interested in HER just what drug she takes. Now I shrug it off. Just say "Doing fine. I have no idea of the meds". People who only ask for selfish reasons or out of generic politness should get a generic answer.
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NeedHelpWithMom Dec 2019
That’s just rude! Who would ask such a personal question. You know what, Beatty? A stupid question deserves a stupid answer! I have done that at times. Not exactly proud of my reaction to them. But it’s hard to always take the high road.

Give them an answer that will leave them scratching their head! Hahaha
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I always said when I was approached, “Everything is the same!”

Some people just say crazy stuff. My friend is the caregiver to her younger sister who is 51 years old, with Downs and dementia. A mutual friend of ours asked her if her sister was born with Downs. What did she think, that a person develops Downs later in life? I guess so.
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Arlyle Dec 2019
That's great 😂!
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Until a few years ago I was oblivious to the probability that terminally ill people might not want to discuss their health problems, but they also cannot say they are fine because they are obviously not. When my father became terminally ill with cancer a couple of decades back he hated this question, together with the tears that usually accompanied it, especially from his work colleagues. Since then I have developed the habit of saying to ill , depressed, anxious, grief stricken and all the rest, 'How are you travelling?' It is straight forward yet it leaves the receiver plenty of scope to go into depth or avoid the subject entirely.
Sometimes you get honesty (up shit-creek), sometimes you get an honest answer (up shit-creek), and sometimes you get humour (up shit creek), all delivered in a manner to guide me whether to pursue the topic or not.
If you think it a weird thing, think of Steel Magnolias when Shirley McLean's character nudges the bereft father without looking him in the eye. A weird action to carry out when everyone else is walking on egg shells, yet it conveys more love and understanding than those standing around trying to think of the 'right' thing to say. If I was Els1eL I would be answering 'up shit creek without a paddle', which conveys things are really bad, yet without wanting to go into detail.
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Sheeza,

😂 hahaha, I get it! I live in Louisiana! So, I get the Louisiana humor. I’m in New Orleans though. Steel Magnolias was filmed in Natchitoches, Louisiana.
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"How are your parents?"

"Getting worse each day. Thanks for asking."
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slp1684 Dec 2019
There we go... tell them the truth...
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I usually just respond with "stable for the moment, thank you for asking."
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kimberlitas Dec 2019
I say something similar to Upstream. I reply "holding steady, thanks for asking." People are showing concern by asking and some may want to know more but most are just being polite.
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My husband has dementia and has had 3 strokes in the last 18 months. I am his only care giver and we are both pretty well known in our small town. Everywhere I go people ask how he is and to his closer friends and just his “pals” I tell them all “every day is unique-pretty good today(or - not too good today). Kinda keep it distant but keep it real. They should know. It’s hard for everyone.
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I always reply the same thing "They are hanging In" and I move on, I am not offended by them asking.
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I know I posted early in this thread, but I thought I would comment again.

My former fil has Parkinson's and is a colon cancer survivor. His wife, who si 15 year younger has cancer again for the 4 or 5 time. She is dying now. There is no hope. Yet it was time to send their Christmas note. What to say?

I have asked my ex for an update on his Dad's health, but not had a reply. I had to write a note to a couple I love who will be having their last Christmas together. It is very hard to convey my love and concern in a letter. I cannot call, as fil cannot hear on the phone.

So I hoped they were the best they could be. I asked about their granddaughter in the UK, where they live. And I finished it off with a newsy letter about the grandchildren here (my kids) and let them know they will be great grandparents early next year. Sadly, she will likely be gone before the baby arrives and fil is not well enough to travel.
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gdaughter Dec 2019
Tough situation. Just wondering...do they have CapTel like phones over there? I'd like to think so!
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Unfortunately I have trouble with the social niceties obviously.
When people ask how I (or family member) am doing, I say “well (not good)” or “it’s been a good ( bad) day” or “it comes and goes as with anyone”, etc.
I do try to be more generic with strangers, but mostly the people who ask are sincere.
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Best answer, IMHO: "As well as can be expected, thanks."
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EdithHankl Dec 2019
I agree. When people say, "How are you," we know not to give them a rundown of all our ills, small and large; we understand that the conventional answer is some variant of "Fine, thanks." The same is true of people who "hope" those we caregive for are well; the question or comment is meant politely. The question is real only when asked by someone else who's had experience as a caregiver and therefore, in effect, knows the secret handshake.
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The friend of a client I was visiting - both ladies have terminal but not currently disabling conditions, and support one another emotionally - told me: "we always say 'FINE, thank you.' FINE stands for Feelings Inside Not Expressed."
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NeedHelpWithMom Dec 2019
I love that. CM.
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Just say, “They’re doing as well as they can considering the circumstances.” Why intentionally ( and rudely, I might add) embarrass and turn off people who are just trying to be polite?
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Suetillman Dec 2019
Excellent answer.
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You should tell them what you said in your comment. You might want to leave out the horrendous life at the moment part but I would be pretty blunt about it. Asking stupid questions such as this deserve an honest reply without sugar-coating it. It will prevent them from asking it again.
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Suetillman Dec 2019
That’s not a stupid question. They are just trying to be polite. All a person has to say to people that know is that they are the same or have gotten worse.
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My usual answer when folks ask how my mother is doing is the truth: "She's perfectly healthy except for her dementia". As for hoping she and I are well, I chalk it up to people wanting to show they care, even if only briefly; I'll take anyone's well wishes! LOL
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Simply say "Thanks! we are doing the best we can".
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Why would that bother you? They are just trying to be polite.
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Cedarlove Dec 2019
I understand exactly where Els1eL is coming from. Your choices are either to lie or to go into the whole thing--and also, how do you describe the situation? My mother is losing her mind, thanks for asking? I know people are trying to be polite, but a better solution might be to say something like, "hope you're doing O.K.", and let it go at that.
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If they are family and close friends, tell them truthfully how you feel. Tell them that you know that they are just trying to be polite - but under the circumstance it seems to ignore that you are dealing with parents who are dying. People often need to be coached. Tell them exactly, what you would prefer such as "I know your parents are very ill, how are you doing?"

As to acquaintances, Just say - Thank you they are doing as well as can be expected under the circumstances.

All others: Just say "Thank you!"
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As both a caregiver and a friend of caregivers i STILL DONT know what to say to people who say that except that i dont want to say youre really stupid ! Well ?! What are you talking about ?!

people can really be at a loss of words when trying to express caring so i grit my teeth when im the caregiver and hope they understand when im the friend.

but ive finally come up with best wishes ... and hope that thats just right.
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