On another forum we were discussing things people say that aren't comforting. They may mean well but--- Hang in there-like I have a choice He's in a better place now-better than when we had a life together Please feel free to add to the list.
He doesn't seem that bad....great then you take him.
At least you don't have to work....I would love to go back work and be with the living or better yet not have this disease in our lives and go back to the way it used to be.
Good topic Nora. I am trying to live in "an attitude of gratitude" so I will limit it to only two LOL
When I placed Lynn the thing that people said that not only hurt me but pissed me off was "now you can get on with your new life" ahhhh, no! Now my role as wife and caregiver has simply changed. I did not just dump him off and abandon him! Not only that, I found it just heartless. Would they say that to a recent widow? It was not a good thing, it nearly destroyed me! I found the lack of sympathy for the situation appalling. pffft
And I already know that when God calls him Home that it will bother me greatly when people tell me he as at peace.... he is so peaceful and happy right here and now! He knows a peace most of us will never know. I will find no comfort from that platitude.
I have the same one as Nikki, there are many, but this is the most grating....
"Get on with "your" life. " (what happened to Dado's?)
and, divvis'-
"you need to move on" ( and....leave him behind???)
many more but I don't want to get angry either.
It hurt me more in the beginning stages, especially when people thought I was exaggerating. Now....I have cleansed out the closet of people that I talk to...have become tougher...less willing to take #$$@!....
Thank God for the ones that do open their eyes, they make up for the flakes and fairweathers.
OMG! Nora, you couldn't have posted this at a better time. Every one of these is good, but the one that gets to me most is - now that Sid is placed, you can get on with your life.
Ditto to Divvi - and leave him behind????????????????
And I feel the same as Nikki - would you say that to a widow?
I decided to move to OK, where my children & grandchildren will be of help. Yesterday, our closest friend, starts with, why do you want to move? You won't have any one to take you to breakfast, your Dr.s won't be there, etc. I. Could have crowned him. I had already been thru that with my dh. Got him all relaxed on the idea, and that I would take care of the move.Grrrrr I understand what you mean about some of these idiots. Bonnie
I'm an inspiration because I didn't abandon her in her time of need.
Apparently in their minds leaving our life partner like that is an option. There is no option unless you define the word shallow and can live with yourself afterwards and love turns off and life partnership turns off when it's not convenient. That you continue with the families and friends as though nothings happened. No, you'd have to leave town.
We never had any choice. Compliments about that showing character are inane and demonstrate the superficiality with which many onlookers think.
That one doesn't hurt. The one that hurts is denial. I was told by lifelong friends that I talk about Alzheimer's "a lot" the first time I talked about it in detail at all. We really were close and this disease really was too much for them to face. Those that choose to protect themselves from information and are honest I can accept. Those that keep talking about what close friends they are with her but look sick when I give details about her condition get under my skin.
Ultimately an experience like this gives us insights into those around us we wouldn't have otherwise. I had to fight not to turn against them because of my own hardships. They are who they are and they didn't change - I did. Deciding to accept the people around me as they are and interacting with my new 'insights' helped me not throw away a very valuable thing.
Note - the group that complained about my talking about it were exorcised. It's the others that struggled with it but didn't make demands that I learned to value again.
Wolf, your words are an inspiration to me! I couldn't resist, but quite honestly they are. "They are who they are and they didn't change - I did." I have and did change....
Nikki and joan asked if anyone would say that to a widow. My answer is yes, I have been told that many times. Usually it is accompanied by a version of this: "you have SO MUCH TIME left".
Do I? Do I really? And how would they know?
Another comment is that I am "wasting" so much time being alone.
Can I have his tools, machine, truck....fill in the blank. - Like I'm not gone and I will need them.
Do you want to sell his stuff - Looking for a good deal - well go look some where else, I need these things.
Or I go outside to find one of his friend loading up some of his tools, hubby is there and when I ask what is going on, it's" he said I could have these" - Hello, he has alzheimers and doesn't know what he is doing. Put it all back! Friends like you I don't need around.
We all think its fantastic how devoted you are, sacrificing your life to care for DW. Just as Wolf said Why? because I care for my wife in the same fashion she'd care for me if our roles were reversed.
But she looks so good, you'd never know.
I never thought I'd be shaving her legs, blow drying her hair, dressing her every day cutting her food feeding
I hesitate to post this, but it is the burr under my saddle. "You are in my prayers." If you haven't bothered to pick up the phone in three years, and I run into you in the grocery store - Really??. Besides that, with the way things are going, if they really are praying for us, something isn't working. One low wattage doctor even said he was praying for husband to get better. With AD? I sincerely don't mean to offend anyone with this. Just listen to the talking heads on TV and the officials at the site of a tragedy. They all say it. Too much.
I have a couple to add to this list..I am so glad someone started this..we could make a booklet of WHAT NOT TO SAY TO THOSE GRIEVING THE LOSS OF THEIR LOVED ONE TO ALZHEIMER'S DISEASE/ AND THOSE WHO HAVE DIED OF ANOTHER CAUSE ( CARDIAC) BEFORE THE ALZ GETS THEM!!!!
One person, a family member said: " Does it feel strange now not to have Ozzie with you in bed?" but here is the real kicker:
PS said " How are you doing?" ME " I am tired. It is just one step at a time." PS with enthusiasm, " Well it is time to start a new life! Just leave the past behind!" ME..I was speechless. I only buried Ozzie 8 days ago...so I said," How do you leave the past behind when it is all around you..36 + years of a happy marriage?" GASP!!!
NIKKI..I JUST WENT BACK AND READ THE THEREAD...WOULD THEY SAY THAT TO A RECENT WIDOW? YOU BET THEY WOULD! TO USE YOUR WORD..PFFFFFT
ART LINKLETTER would not believe the " Dumbest Things Grown ups Say"....
I got a lecture from a friend whose husband died 6 months to the day before Ozzion ALZ...she said " you should thank God he did not descend into the depths of ALZ where he didn't know you anymore and he didn't have to be fed etc. and you didn't lose your life savings in the bargain.." Like I needed to hear that cuz I was too stupid to realize it...pffffttttt
Ozzie had a cardiac arrest that saved him from all of that...but it is no less a loss in every way.
OH Mimi* those are SO awful. Yes I will make a list to print out, paste on fridge, email. and Marty my God how do THEY KNOW she is not aware, did they ask YOU?
Really hard not to get mad.
I truly have found some new people that would not talk like this . However, I have abandoned a friendship of 44 years because SHE WILL NOT LISTEN SHE WILL KEEP SAYING THEM EVEN THOUGH I ASK HER NOT TO!!!????
Her favorites are....."well others have it worse", and "you should move on and have fun, find a new boyfriend" and "oh I just could not visit my Mom in a home with her dementia as it was too painful for me" YET SHE constantly compared that experience, her elderly Mom of 17 years AD, left alone, to what I am going through. "Oh I know how you feel"
No use trying to figure it out, I gave up. I dropped her.
The sisters from another island finally dropped the idea that he had demon possession, thank God for that as the ARE his family and I want them to see him. That is going much better, due to Dado's nurse sitting them down and setting them straight.
Oh boy!!!!!! I have had the same things said to me as Amber had. I, too, have had people ask about Gord's stuff. One woman was determined to help me clean the garage. Perhaps because she knew that Gord had tons of Snap On tools and thought I was too stupid to know their value? Then there are the friends who really have been good but insisted on sending these inspirational emails about being grateful for the things you have.....Alzheimer's? Then there is my sister who will say she knows what it is like to deal with somebody with Alzheimer's. She had her in-laws for 3 weeks before their other son came and took them to their home which was a 4 hour drive from Toronto. Not that I am grumpy or bitter about these things....Lord knows I am not....am I?
I heard on the radio that if you (fill in the bank) it will prevent Alz As if DH should have done more crossword puzzles, taken ginseng, etc. so y'all it's our own fault. Moral: don't believe everything you hear on the radio lol
You all are referring, I presume, to the things that people outside of the Alz. circle tend to say. A couple of times, on this blog,I have said to someone going through a particularly trying situation to "keep hanging on" or "hang in there, girl" (I think I said this to Lulliebird). Sometimes I fail at finding the right words of encouragement, especially when I haven't gone through that particular problem (yet!). I don't mean for it to sound trite or shallow. Forgive me if I have unknowingly "offended" someone.
very sweet Mim. Somehow though, because you are one of "us", it is ok for you. (smile)
Trying to stay on subject.....I have noticed when others are going through trials, I try not to compare and instead give encouragement, as opposed to the early stages. How I hope and hope this sharpens me, but you never know.
There was one that I have to mention, unlike Nikki I cannot stay silent!! (love you for that Nikki)
It is..."It would be a mercy if he passed away, he would not like to live like this" This is when, he still enjoys food, he has the occasional laugh, and from what I can see, HE DOES NOT WANT TO DIE YET.
This was yet another by my life long friend. Once ok, but even after I make it clear I don't want to hear it, it comes again.
For all the above reasons, I seldom post a comment and never, never, offer anyone my advise. If I have dealt with a similar situation, I will tell my story, Hoping that it might be helpful.
I think that anyone who posts a comment here is trying their very best to offer solace and comfort. It's the same with old family friends who try to be helpful but just don't know the right words to say. With all the heartache and trauma that a caregiver endures, it's very easy for them to take offence to just a single word.
George, I like that idea of telling your story if you have been through a similar situation.....I'll remember that. Otherwise, just letting someone know their story has touched my heart, or letting them know I'm thinking (& yes, praying) for them will be enough!
Ok I change my opinion from a good topic to a great topic :) Clearly this has hit a nerve with many of us.
Mim, what you are doing is offering support and trying to help a fellow spouse.. that is sweet! And completely different. You have never offended me ((Hugs))
I would also like to change my statement "Would they say that to a recent widow?" to.... Would you say that to any other widow who didn't lose their spouse to Alzheimer's disease?(or other dementia) I just can't figure out why people think it is somehow easier or better when we lose our dear ones, it still hurts!! Have a heart and keep your damn mouths shut!
I thought I was over the bitterness, clearly it still lurks in the corners of my heart. And it does still hurt me to this day when people tell me with a chipper voice, now you can get on with your life. Now though instead of getting mad of defensive, I just state the simple truth......
Lynn is my life.
That stops most in their tracks. Those who continue to preach to me I just walk away from.
I do want to share that when we speak our minds it does sometimes make a difference. When Lynn was in critical care in April, 2012, we had a nurse who was annoyed by me. She told me she was the professional and I was just the wife. She did not appreciate my attempts to help her understand what did and did not work for Lynn.
You may remember me sharing that I told her she had to crush Lynn's medicine or he would spit them clear across the room. I was not trying to tell her how to do her job, I was simply trying to help her. She got huffy with me and said she has been doing this for years and knew how to give medicine. Ok, so I sat back and let her attempt to give him his meds, and I laughed heartily inside when he did indeed spit his medicine clear across the room.
I let her slide with these two comments, I try very hard to be nice. But then she crossed my line... in a snotty voice she said to me " you need to stop coddling him!"
Excuse me!? I was more than pissed!! He is late stage Alzheimer's, why would I want to do anything but indulge his every whim AND of course I am protective!!!! I wanted to deck her but I refrained. But, I could not stop the words from coming out of my mouth.. "You would prefer I was a cold hearted bitch like you?"
Needless to say I spoke with her manager and she was not Lynn's nurse again. Well this past hospital stay, on the second night we were there, in walks that same nurse.
She said, (in a singsong voice while waving a finger in the air) I remember you...
Me, (in a not so singsong voice!) I remember YOU too... are we going to have a problem here?
Nurse, No Ma'am! How can I help your husband?
WOW!!!! Total change of attitude. I have to say she was the kindest, sweetest most compassionate nurse I have ever dealt with.
First of all, thanks for making me feel better about me! Hugs! Secondly, Nikki, I really like that story - how dare she! But you were right on, said what you needed to say, & apparently, it DID make a difference. Good for you!
The ones that get me are from his sister.. The last time we saw them she said: he looks so good and you are a saint. Oh and I think about you every day. She said if there is anything I can do let me know. I wrote her back and suggested calling her brother once a week. That was 3 months ago. Never another word from her.
It's been 8 years and I've had a lot of comments re devotion, sainthood, etc. I agree with Wolf that there really was no other choice for me. I think some people are just trying to be supportive and say something positive. However, I've come to realize that what some people are really thinking is "I could/would never sacrifice my life for my spouse for such a long time" or "my spouse would never take care of me like that". Sadly, I think our society is such that families (including some spouses) just wouldn't consider putting their own life on hold to take care of someone with dementia, period.
Nikki, I liked your story too. And I would like to think that the nurse learned something in 2012 about dealing with our AD loved ones that she could put into practice in 2013. You are educating others, one person at a time!
Nikki, been through the exact same thing with nurses and giving Sonny his meds.Do they think after 60 years I don't know the best way to treat him. Also one of his CNA's at the nursing home would not hear me out on how the best way to bathe him,asked me to leave the room,she would handle him her way. I stood my ground and refused. She now is much more patient with him and sees I was right. But, some of the nurses thank me for my input.Have even had the DON ask me how to handle certain situations, she realizes every AZ patient is different.Like you and Lynn, Sonny is my life and I Will do everything I need to do to insure him the best treatment possibly.
Mim, your remarks have never offended me either. As someone else said, it is different coming from the people here who are or have been in the trenches. Nikki, I have heard people say to those who have lost a loved one to cancer, " he isn't suffering anymore or he is better off." These insensitive remarks are not just for Alzheimer's. On the topic of the nurse........YEAH, NIKKI!!!!! YOU GO GIRL!!!!!!!
The worst thing said to me, a week after DH had to leave his job. A coworker of his came up to me and said, DH was lucky, no longer having to work. At that time I had not a clue how we were going to make ends meet!! AND he left because of AD!!! HELLO!!!
My mother said I should place DH so I could get on with my life. Several times, I finally told her no way, as long as I could take care of him I would.
I do think that most of the time people just don't know what to say and mean no harm. But other times they are just clueless!!!
I know that I have probably said thoughtless things to others too......
Our next door neighbor asked how Jim was doing, didn't really want the answer. What he wanted to do was tell me about how his best friend got AD and when he finally went that one time to see him, found it just too painful and never went again. Oh, and by the way, his friend just basically starved to death later.
I was STUNNED. I won't say what I said before I turned my back on him and walked away.
By the way, Marche, I know what you mean about "in my prayers." Now I laugh and say "thank you, but how about instead you slip me a twenty? That I could really use."
I wish it was like you said GeorgieBoy, I truly do. That people just mean well and don't know what to say. Because this has been one of the very hardest things on this journey, for me, finding out that some people really DON"T mean well, they WANT to hurt me and do not want to know the truth. Like was said above, they just want to chime in THEIR opinions and stories. (That is awful Bunny's Lamb)
It has made life so shocking to me, these uncaring throat cutting people, and they are real. Thank God there have been the few angels.
I would like to comment on the "in my prayers" Yes that too can just be a platitude, how awful. For any of you please know , that when I say I pray, I do, right there and then.
On another note, yes yes yes I too have said platitudes and things off the top of my head. I have learned not to, now. However, I know that if I have uttered anything to try to upstage or disbelieve what the sufferers have told me, it was not done deliberately, as some do. I am willing to learn. I am willing to grow up and stop trying to get all the attention, which is something I HAVE done in my insecure what is now, past.
It hurt so much more when he was home with me, when I had no sleep and no help, and was still in denial . For those of you in the early stages I give you a giant hug.
Ahhh Bunny, the "it hurts too much to see them this way" comment. What a cop-out! And just who the hell do they think they are saying that to? Yeah that would have to be my number 2 pet peeve as far as comments go.
The you are in my prayers comment, that one I actually find comfort from. At least they are thinking of him, and if praying is important to them, well that is probably the only thing they feel they CAN do. I have a special friend who takes the time to pray for Lynn and I when she goes to Temple. It is not my religion, but it moves me greatly that she would care that much about us. I find it sweet personally. It is not comments like that that bother me and I guess it's because I do know that it is often so difficult to find any words to say, much less the "right" ones.
It is more the comments about how wonderful your life can now be once your loved one is placed or passes away. WTH!?? I am still shaking my head at the coldness of people, how horrible that people said these things to all of you. I can't understand it.... I have been to more funerals than I care to remember and never once did I hear someone say to the grieving widow "now you can get on with your life" Just heartless that they feel they can and should say that when it is dementia.
Of course we each will have things that irritate us more than it would others. Maybe it depends on what nerve is being hit at any given time.
I think you are right, Nikki. "it depends on what nerve is being hit at any given time." Our nerves are raw from the stresses of caring for our LO's, from trying to keep smiling when we would rather scream or cry out in pain. On good days, we might just handle a comment that on other days we can't. One of my friends sent me what I considered an inappropriate joke about AD and Parkinson's - on a good day I probably would not have reacted so strongly, but on the day she sent it to me we were not having a good day and immediately sent her an email to say that she should consider the situations of the people receiving her email "jokes" before she presses the send button. She apologized for being so insensitive, and perhaps she has learned something from the incident. Like Coco, when I say "you are in my prayers" I really do pray, right there and then, and then at least once a week I pray for all of us, because we need all the help we can get!
Someone said to me at Frank's memorial service - "it does get better". Well, they were right but at that time it wasn't much comfort. If I tell someone I'll pray for them I have written their name down so I 'wouldn't forget. I 'don't want that to be an empty phrase. I have said things that were in appropriate I'm sure out of ignorance but none the less it could hurt just the same. People who have not known the heartache of an az spouse cannot possibly know what we know. When cancer was the diagnosis there was a chance with treatment but when he got the vascular dementia diagnosis I knew - I don't thing he realized it even then - that our life as we knew it was over.
My sister and her husband are both strong, healthy and quite well off. They own a large home and 100 acre spread in the country and neither one of them as ever been ill except for a cold. If one of them gets sick they can afford unlimited home care and support and having to go into a long-term care facility would not be a problem financially.
My husband has had cancer, heart trouble and then this diagnosis and I had a quite major surgery plus 3 cancer scares and all in the last 5 years. We live in a small condo apt. in the city, and he has a small pension that does not cover our expenses (I have no pension at this point). When our savings are gone I will have to sell our apt. and rent something to live in.
My sister said to me "I've been thinking. Since we are in our 60's, it's like the last trimester of life. From here on in it will get worse. We all face illness and death in the years ahead and so really you and I are in the very same boat."
When I say you are in my prayers, like a couple of the others, I mean it literally. I tell some people that at the hospital. When I don't know their names, I picture them wherever they were in the waiting rooms and so include them in what is becoming a huge prayer list. Ring....people who are supposed to love us can hurt us so badly. What a thing to say.
Ring, I could not disagree with your sister more..I mean think about it..a guy 24 who is killed in a car accident was middle age at 12. I don't consider being a 60something on the downside of life...good grief....
Your sister is trying to identify with YOU, trying to have you think you are not alone with difficult circumstances. She is truly clueless.. How nice it would have been if she had said something like " since things are so hard for you, if you need help, we have_______ that you can use or how can we help you out????? We have plenty of space or we have _________ time or just anything..
I always hated being patronized and I hate it even more now...ie..divorcees trying to liken their failed marriage to a death...a real death and burial of a loved one..Yes they have challenges and some not too different than ours but their past is something they don't want to recall whereas for most of us, we lost our best friend in the whole wide world.
No one, no thing, no world can touch the center of what was and is no more. However cruel or mean anything anyone does or anything that happens to me is - all is so far away from where the only real hurt is. And that hurt is it's own truth and cares nothing for the trivialities of human comfort.
When any devil asks me what I did, I will tell him I loved, and nothing can be done to me that touches the grace I knew.
The first time ever I saw your face I thought the sun rose in your eyes And the moon and the stars were the gifts you gave To the dark and the endless skies, my love To the dark and the endless skies
And the first time ever I kissed your mouth I felt the earth move in my hands Like the trembling heart of a captive bird That was there at my command, my love That was there at my command, my love
And the first time ever I lay with you I felt your heart so close to mine And I knew our joy would fill the earth And last till the end of time, my love And it will last till the end of time, my love
The first time ever I saw your face, your face Your face, your face
One of my favorite Gordon Lightfoot songs, Wolf! Actually written by Ewen McColl; Roberta Flack probably had the best known version, but I've always liked Gordie's version best.
It's my opinion the insensitive comments from close family hurts the most. My sister is the only family member (not one of his family) that helps and she does a great deal. Yet she makes similar comments as Ring's sister. During her most recent visit she said "what's the point in doing this (caring for him)?" and "If you die before he does, what do you want me to do with him? Can I put him in a facility because that's what I plan to do? Not sure how often I will visit."
Due to my own debilitating illness since my early 20's, my mother always said to me "Other people have it worse...what about the people who have no legs?". I know she was trying to make me count my blessings on what I did have, but it only made me angry.
Do you think your sister could just be overwhelmed? You have love for your husband, she likes her brother in law. Her words must hurt terribly, and with all the stress you are already under, tell her you just need a hug. I have no real understanding myself, I find I pray a lot more than I used to. I find all spouses here so brave, I hope I will do as much for my dh, I feel he would do as much for me, that's love. I send hugs. Bonnie
I feel that in some situations, words are hard to find. So, some including myself, may make comments that either hurt or cause uncomfortable feelings to others.
Today, a business representative we deal with only by phone , asked me hesitantly "How is your husband?" Apparently, she noticed his difficulty speaking. After a long pause, I told her he has AD. Her response was "But he's so young! How are you coping?" I don't remember how I answered but I was at a loss for words. "How am I coping?" I don't know the answer to that. How could I tell her??