On AOL today there was an article about things not to say to a military wife. It made me think—what things do we wish people wouldn't say to us, as Alzheimer spouses?
My nominations, which are things I wish someone had not said to me, are:
1 – It's not like it's a brain tumor. (No, it's not. With a brain tumor, sometimes there is hope.)
2 – It's hard, but you'll get through it, and then you have the rest of your life. (Yes, for over eight years I've been "getting through it". And no, some caregivers don't survive this experience, so there is no guaranteed "rest of your life".)
3 – You know, if someone has a really strong character and fights this disease really hard, they last longer than the other people. (My comment on this one would have mostly four-letter words, sorry to say.)
4 - You're really a strong person. (The cracks mostly show on the inside. I only look strong on the outside. If you would acknowledge how hard this is, maybe you would realize how much help I need.)
5 – My husband had a health emergency once, so I know just how you feel. (That was years ago and he's perfectly healthy now, so no, you don't know.)
Gee, I sound pretty bitter, don't I? Some days, I think I am.
On a slightly more positive note, I heard one time that the three most beautiful words, right after "I love you" are "let me help". That would be my nomination for the thing to say to a caregiver spouse.
I have been there, and I do believe that 2 is right on. As awful as it was.. and it was!... I can say that I DID get throught it. We all look toward "after", when we talk and write about out feelings. Personally, I do not know any caregiver who did not survive., although we often think we won't. What kept me going was KNOWING that there would be a life ever after. What's the old expression??..."....what won't kill you will make you stronger..", .. Thank God! for number 4. There were times when I believed they'd call my name on Academy Awards night....I'd earn the Best Actress of the Year Award, for keeping the smile on my face and holding my head high. For you see, I did NOT have Alzheimer's Disease. My precious husband did. He would have expected me to be strong and not let it take me down too.
What I have learned to say to Caregivers "first".... is "How are you doing".
Before I walked down the path toward Alzville, I wouldn't have known either.
6 - How is your LO doing? (I get this every week. I still work at the same place DH worked for 32 years. What do I say, he's not better. Often times he is worse that the last time that person asked.)
as if what you have been saying is a lie. and they really arent dying and in late stages. we have said this many times when someone isnt around them much they can look almost normal at times. if it was only true and they looked as good internally as on the outside.
I think most people are clueless of the disease. I would be to, if I did not live with it every day for the past 3 yrs. How is your wife doing, I get asked all the time. I do not have a good answer for that question.
moorsb, I get asked that all the time too like they expect my answer will be different and he will all of a sudden become better like he just had a bad case of the flu. That old adage about walking a mile in my shoes is so true. I would never wish this disease on anyone or they become a caregiver to a LO with it but unfortunately I think that is the only way that they are going to GET IT. Still my top response that someone gives me when I tell them "My DH has Vascular Dementia." They say "Whew! Well, at least he doesn't have Alzheimer's!" I still hate hate hate that response. {{{{grrrrrrrr!}}}}} It is not a compatition it is a fatal disease.
don't say what my son-in-law said to me in front of my DH. "gee, he doesn't look like he has dementia like you keep telling us." I think it went right over DH's head so there wasn't a problem.
This was about two years ago after I had had the private talk with DD and SIL about my concerns.
"I got an idea of what you are going through. I had to help my husband dress for a month after his shoulder surgery"! At least your DH is cooperative!!!
I hate it when someone says they know what we are going through. NO ONE WHO HASN'T WALKED IN OUR SHOES COULD POSSIBLY KNOW. I have a dear friend whose mother died of Alzheimer's Disease. She tells me that no matter what she went through with her mother, it was not like going through it with a spouse, so she really can't imagine how I am dealing. That's a good friend.
Yes yes yes--until you walk in our shoes don't assume we will survive or that things will be ok,because they will NEVER be ok again. We are slowly losing the most important person in our lives,please becareful what you say to us!!!!!!
Since people associate AZ with memory, I hate it when I tell someone an incident where my DH has forgotten something & their response is, “Oh I am ALWAYS forgetting things.” Grrrrr!
bak, I agree with you that things are never going to be alright again. They will be what they will be but I don't call that alright. I got married thinking that I was going to have a husband for the rest of my life. That to me is alright, this is not.
I guess I am not as nice as all of you ... I use to be. But now I am sick to death of answering the same idiotic questions. Fed up, the straw broke this camels back a long time ago. The question that bothers me the most still is "how's Lynn doing?" (like he is going to get better? dumbass!)
To which I now say...... he is in late stage Alzheimer's and he is dying. I am trying to make his last days as peaceful as I can for him.
Funny thing, when you are blunt and truthful like that, the same person never asks you that question again! Good, cause I was getting damn tired of answering it over and over.
when people ask me how is she doing? I just say as good as can be expected. and when they ask how I'm doing I just say surviving. that usually ends the questions. usually most of which they really did not want answered anyway.
Jeanette, You are right. I guess right now I have very thin skin. I did have 4 people at work yesterday ask about DH and how he was doing. I need to come up with something that gives them the info without to much detail. I have found myself saying when asked....not as well as this time last year.....Guess that would work. Don't want people thinking he is getting better. Some think he is!
You are right most people are trying to be kind. I don't need to bite their heads off.
Jeannette, is correct with thinking that people are trying to be kind, however, I think....at least I know I do, use all the patience I have with my husband, not much left over for the outside world.
I've had a few so called "buddies" asked how DH was doing. I said"why don't you go over to the nursing home and see for yourself. It's only ten minuters away. He'd love to have company" Like Nikki said, they don't ask again. And they don't go over to see him either.
People in general are concerned when they ask how I am or my hb. I guess when they ask how my hb is, I'm thinking they should know that he is the same as the last time they asked and he isn't suddenly better. I usually tell them he is progressing slowly and most of the time the conversation stops there, guess they've heard enough on the subject. My sister who was a nurse, told me she didn't have to walk in my shoes, she was an educated person!!! Maybe she should educate my hb's neurologist since he has told me he is not that knowledgeable on FTD!!!!! and their was nothing else he could do.
If I hear again, any of the following, the speaker can have this job: "You have to make him ______________." "Don't let him ____________" or from professionals, "Legally, we cannot interfere with his right to decide for himself__________________." We know what we have to do, and that we have to work around every one of those statements. None of them help.
Bruce, that is the answer I give too when someone asks how dh is doing...I think some want to know if he is at least stable or has not had any further heart issues etc. If they ask how I am doing I just say it is one day at a time or some days are better than others..or my best answer is " I am so far behind I think I am in first place"..
One of my dh's friends said to me, "you know you won't be able to do this by yourself." I didn't hear anything about his coming to visit with dh or talk on the phone.