Salt in the Wound

Kenzie56

I can usually be patient with DH, because I know he can't help doing and saying hurtful things...but I want to scream when people constantly ask me how he is doing. Do they really want to know or is this like the checkout lady in the grocery store?...."How are you?" and  she really doesn't want to know - it's small talk to be polite.  Am I just so tired of this whole journey that little things like this get under my skin? I usually say, "He's hanging in there." and then change the subject...but the other day a relative sent a text with "How's DH?" nothing else...not how are you or small talk about the family to take my mind off being isolated and locked-in with DH for so long. I responded to her with, "As good as can be expected of someone with a terminal disease. He get's a little worse each day." It has been 4 days and she hasn't responded back.  Maybe she can think of a different way to check-in and see how both of us are doing in the future. I am curious if this is just me or is this typical.  Does anyone have a better response? Maybe I should just try and ignore the question...It is hard enough watching your husband slowly go brain dead, but to be asked about his decline is like salt in the wound.

Ed1937

Kenzie, I'm sorry to say that this is typical. People just ask because they think it's the right thing to do. Rarely do any of them understand what this disease does to either the PWD or the caregiver. They are not trying to be inconsiderate.

toni2

I used to tell people who asked how he was (why don't you come and visit him once in a while and then you'll know how he is. I know he would love to see friends and family) That put an end to people asking about him but afraid to see him. Then the people who came to see him really cared about him.

It used to upset me too. You are not alone. It's not easy. Take care of you! 

dayn2nite2

The answer “okay I guess, for someone with a terminal illness” sends them running in the other direction.

RobertsBrown

"How is Diana doing"?

"I keep her clean, dressed, warm, well-fed, and safe, so from her perspective she's doing just fine, thanks for asking"

Jo C.

People really do not mean to be inconsiderate; it is true - most of them have no idea what dementia is like.  Many just think of it as "forgetfulness."   I was asked these sorts of questions many times.  I simply said, "Nothing has changed," and then changed the subject.  When things got dicey and the end of the journey was nearing, I was more forthcoming.  "M is at the end of life and will soon pass."  Shock and not knowing what to say was the response - mostly, "I am sorry to hear that."  I would then let them off the hook and change topic - they mean well. If they did not give a care they would not bother to ask.

I never, ever asked anything of anybody nor did I expect anything special; not at all.  What was hurtful was having all my LOs friends drop away; even those who were of long standing.  I even invited a few together for afternoon coffee and cake - did that twice - and no takers.  Stunning.  They were just far too uncomfortable.   These were close friends of my LO who had benefitted from my LOs attention in life.  They did not even bother to send a card or make a call.  I did not expect tea and sympathy, nor anyone to feel sorry; just  a little kindness for my highly compromised LO by sending a card once in awhile would have been nice.

One year, my LO who loved to receive cards, had a special birthday coming up.  In the normal course of emailing, I did, in a kind manner,  let family and friends know a few weeks ahead of time and said how my LO loved receiving cards, and then mentioned it about a week prior to the birthday.

What happened?  Nothing.  Not  single card, not one.   Not from adult children, not from siblings, not from friends.   How hurtful that was for me to realize that even if my LO did not know it was a birthday, etc., how much cards would have been enjoyed. 

So . . . I went to the Hallmark shop and bought a large stack of cards.  I signed each of them from a different person.   My LO was delighted as could be with the cards and touched and looked at them.  I put them on the wall and closet door facing the NH bed.  The colors were there to see and staff acknowledged them when they were in the room.   Only thing that mattered was my LO was delighted with each card which happened so little.

Part of the dynamics for many.

J.

Debbie21

I thought I was the only one who hated the inevitable question about how my husband is doing. I know they mean well but a true answer isn’t always pretty and my husband wouldn’t want people to know the details. I usually answer…”we are taking it one day at a time”. I hate the sad faces and pitying looks. They make me feel bad. Fortunately, I have a few friends who have been there and we can have a real conversation.

toolbeltexpert

Well I get a little upset internally, and keep it to myself. But sometimes I just want to give them the full monty. I don't know if my preacher will ever ask me again?  Two Saturdays ago I had to call the police twice for Dw, sunday rolls around and not sure if the preacher didn't get the texts about what had happened with dw, but he obviously doesn't  have dementia, because  he couldn't read my body language, It waps obvious I was stressed,well he asked and I didnt hold back.  Sorry I didn't, but he found out how I was feeling. He had preached a sermon about how we make the small talk and he played the  song. Truth be told by Matthew  West. Google it for a video.

I guess I should go back and apologize to him.

Lie number one you're supposed to have it all together

And when they ask how you're doing

Just smile and tell them, "Never better"

Lie number 2 everybody's life is perfect except yours

So keep your messes and your wounds

And your secrets safe with you behind closed doors

Truth be told

The truth is rarely told, now

I say I'm fine, yeah I'm fine oh I'm fine, hey I'm fine but I'm not

I'm broken

And when it's out of control I say it's under control but it's not

And you know it

I don't know why it's so hard to admit it

When being honest is the only way to fix it

There's no failure, no fall

There's no sin you don't already know

So let the truth be told

There's a sign on the door, says, "Come as you are" but I doubt it

'Cause if we lived like it was true, every Sunday morning pew would be crowded

But didn't you say the church should look more like a hospital

A safe place for the sick, the sinner and the scarred and the prodigals

Like me

Well truth be told

The truth is rarely told

Oh am I the only one who says

I'm fine, yeah I'm fine oh I'm fine, hey I'm fine but I'm not

I'm broken

And when it's out of control I say it's under control but it's not

And you know it

I don't know why it's so hard to admit it

When being honest is the only way to fix it

There's no failure, no fall

There's no sin you don't already know

So let the truth be told

Can I really stand here unashamed

Knowin' that you love for me won't change?

Oh God if that's really true

Then let the truth be told

I say I'm fine, yeah I'm fine oh I'm fine, hey I'm fine but I'm not

I'm broken

And when it's out of control I say it's under control but it's not

And you know it

I don't know why it's so hard to admit it

When being honest is the only way to fix it

There's no failure, no fall

There's no sin you don't already know

Yeah I know

There's no failure, no fall

There's no sin you don't already know

So let the truth be told

Source: Musixmatch

Songwriters: Matthew West / Andrew Pruis 

Joydean

Thank you TBE!

White Crane

Kenzie, my stock answer these days whether they ask how I'm doing or how DH is doing is, "We're/I'm hanging in."  Then I walk away.  Only to close and dear friends who sincerely want to know do I pour out my heart.  Those are the ones who didn't walk away from us after the diagnosis.  Hugs.

Brenda

Kibbee

I have an old friend who is the caregiver for his Mother with dementia.  We talk a few times a week and believe me, since we’re both living a similar experience, we let it all hang out.  It’s a real relief to be able to speak openly with a trusted friend who totally gets it.  With other friends I am pretty circumspect, just a brief “Thanks for asking.  Everyday is a new adventure but we’re hanging in there”.  I appreciate that they are being polite and asking, but I know they don’t really want to hear all the down and dirty details.  Plus when I have that rare chance to socialize I want to enjoy it, not spend my time focusing on my caregiving challenges.

Kenzie56

I see that I am not alone in my feelings.  This forum really helps when I am stressing. Thanks. I will continue to use "He's hanging in there" and tell myself it is not worth the stress. I agree - they probably want to connect but have no clue how. I will put that trigger in a folder marked, "You Have Bigger Things To Worry About" and focus on DH.  Thanks to all for your input and for the perspective reboot.

Buggsroo

I get asked by my friends how is my husband. I realize that I cannot say too much about his pooing in the sinks or any other kind of things he does.

 I wryly smile or laugh and one of my friends said it was good I could laugh, frankly, if I didn’t laugh I would be crying all the time. 

Caring for someone with dementia is a fresh Hell, I think people who haven’t experienced it, won’t get it, I know before it happened to me, I was just as clueless as the people around me. 

People who haven’t walked our walk, think they get it; they don’t. I honestly think that some people think dementia is contagious; it isn’t but it explains why some people don’t want to know. 

Crushed

I had lunch yesterday with a couple in Germany who have known DW and me for over 40 years.  Both are physicians.  They always think of her as the brilliant young doctor who stunned people at conferences.  They were kind and thoughtful and distressed. 

 

  

Rescue mom

Bugs, what you said about people who seem to think it’s contagious….not exactly the same, but after DH Alzheimer’s was very obvious, friends disappeared (we all know about that). A couple of wives told me their husbands were scared to visit. Seeing DH made them think how it could happen to them.

The conversation bit that drove me to tears was people who’d say, after a quick store or sidewalk encounter,  “oh he looks so good, is he really sick? I forgot my car keys yesterday, it happens to everybody.”  You wouldn’t believe how much I heard that. This after maybe 2 minutes when DH did nothing but smile and nod….

rlpete

I usually answer based on how much I think they really want to know. My long distance father and sister having lived through Alzheimer's with my mother want to know how both of us are doing as they understand the toll on me. I also have a close cousin that is very interested. I probably tell them more than even my wife's sister who doesn't ask much. Others I usually say we are hanging in there.

MaryG123

Oh Buggsroo, you make me laugh!  I admire your courage.  I can just imagine my sibs if I said “ Well, except for the pooing in the sink…”.  Something to look forward to.