Here's something that has occurred to me--because of my personality, do I get less help because I make it look too easy? I was raised not to complain about one's life, just to get on with it. Consequently, when I talk about what's going on, I try to report issues factually, without whining and a lot of emotion. I do the crying, etc., for the most part, when I'm alone. Friends with "normal" lives seem to let loose, at times, a lot more than I do. Of course, since the issues here are only getting more serious as time goes on, I feel that if I would be constantly complaining, I would have even less emotional support than I do (who can listen to the trials and tribulations of possibly 20 years of AD caregiving)?
A while back, I mentioned to a friend, whose Mom had dementia, that I was thinking of trying a prescription to help calm me. She was truly surprised that the situation would cause the need for me to take medication in order to deal with it. I was, in turn, surprised that she didn't see the toll it could take on me. Last week I visited the 3rd daycare center that DH will start attending next week. After chatting for a while, the Director said "You seem so good with all of this." I replied that it may look that way on the outside, but inside, it's the opposite.
I had to really think about this one before answering. The fact is that even if you or any of us complain or try to explain, no one who isn't living as an AD caregiver really "gets" it. It's the "walk a mile in my shoes" phenomenon. Many on this board HAVE complained to friends and relatives, or at least tried to explain, and the only thing that ever worked was when that friend or relative was left with the AD person for a few days as sole caregiver. Then they "got it". Some admitted that they never realized how difficult it was, and from then on, offered help whenever asked. Others ran away never to be heard from again.
I don't think it's anything you do or say or don't do or don't say. It's just the way it is. No one gets it. Unless they've done it.
As for your friend whose Mom has AD, does your friend LIVE with her? Is she her 24/7 caregiver? I think not. If she were, she would understand.
MarilyninMD....you are a TRULY REMARKABLE PERSON if you've been doing this for so many years and your 'public' demeanor doesn't portray the struggle you're going through! I must admire that! I guess all of us handle our emotions differently, depending on how we were raised, the extent that we've developed our coping skills, the degree of the difficulties we're dealing with at the time. If you find you need pharmaceutical help in coping now, I suggest you tell your PCP about this and he/she will prescribe something safe for you for your own welfare. I'm an outgoing , 'gregarious' person around people.....I miss people in my life so much. Unless I talk about the AD spouse, or they ask, no one would know anything is wrong. I remember the story about the duck floating on the water.....soooo calm and peaceful , but underneath it's paddling like hell! Describes me perfectly! Maybe you, too! As for your question.....do you make it look too easy and so, you don't need help? Maybe. Maybe everyone thinks you have everything you need and have it all pretty much in control. You may just have to speak up and ask for assistance from family, outsiders, whomever you can find to help share your burden. Right now, my husband is in the hospital and being readied for transfer to a nursing home. It's a pretty traumatic time for me, as I didn't expect I'd have to do this so soon.....and I'm asking for help, for sure. Asking people to visit him, asking for support for myself. Hope my little bit of encouragement helped. Jen
Joan--you are right, my friend was never the main caregiver, her brother was. I like your way of thinking on this subject--so we really don't have much control over others "getting it". Then it's one less thing I have to be concerned about.
Jen--I did try a miniscule dose of Lexapro when the rages were happening. It caused me to sleep 13 hrs a night and need a nap in the afternoon--discontinued. Things became better when I learned what the triggers were and DH started Seroquel. However, if the need arises, I'll ask for something else.
I do think the fact that this is EOAD contributes to the lack of help, even though I've asked for it. Friends, family still work--little time to chip in.
Marilyn and Joan, I think it also makes a difference how the LO appears to others. Many people here have commented that their LO's can keep up such a good front when other people are around that no one sees what we have to cope with. I notice that when my DH starts speaking aggressively to me when other people are around (this seems to be happening more frequently at the moment) I start to see something new in their eyes: surprise and perhaps the beginning of a new understanding? It may help people to understand what I'm coping with, but I don't like it because I'm afraid people will want to avoid us if they are afraid he's going to act up.
Jeanette--Good point. I know what you mean about public aggressiveness making people sit up and take notice. I think, though, it may have the opposite effect we would like, by intimidating people and making them feel that they are not going to get involved and perhaps be the one to have to deal with it!
I have had many people say to me "I don't know how you do it". Even the staff at the nursing home has said they don't know how I kept him at home but as many of us have said before " What choice do we have?" We do what has to be done.
Jen--I'm not remarkable, it's just the way I seem to come across. Here's an example--the most nerve wracking experience I've ever had was several years ago, when I testified in front of a Senate subcommittee for more AD research funding. There were about 400 people present, it was being filmed for CSPAN, the Senators were there in a huge hall in the Senate Ofc Bldg. on Capitol Hill, and most of all, I was reading a statement about the worst personal tragedy I've had--my husband's illness. I practiced it about a million times so I wouldn't break down and cry. It was a real struggle--and yet, I was told that I came seemed calm and in control. As you said, it's just the way I seem to handle my emotions in public. As the British say, "stiff upper lip".
Edis--My answer to "I don't know how you do it" is "I don't know how I could NOT do it".
MarilyninMD: I just posted my feelings inre how good I am at making things look and how I feel about it on "How does one deal with such long-term sadness"?
It's a tossup. If they see obvious signs then yes, they do start to avoid you. If they don't, then you're considered some kind of trouble maker who's trying to rock a boat that doesn't need rocking. I guess it leads to our social isolation so that we don't have to hear anyone say, "Well, he seems just fine to me."
PrisR--I think that's why I started this thread. In an effort to avoid being "Miss Doom and Gloom", I realized that perhaps I am underplaying how rough this life is. But Joan is right, no matter what I say, or how often I say it, it just has to be seen to be believed. That's the challenge for me, how do I actually wake people up and get them to spend time with DH alone, without me there to "prop him up"? I am afraid it is futile.
I agree marilyninMD - I think it is futile. Unless they are the type of person you can put on a guilt trip for not helping or have a big, compassionate heart, it won't work.
A few months ago when we went to get the DPOA, the attorney made the comment we were taking it so well. He knew AD was a death sentence. Art replied 'what else can we do'? Outside, yes we seemed to have accepted it without problem, but inside I am angry, furious, jealous, angry, hurting, angry, tired, angry, etc. But, what can one do? Educate and go on day to day.
Eye of the beholder...defintely makes a difference who is looking into the situation rather than from the inside out. It is amazing how few people are caring enough to really take an honest look. I had a long gone friend comment recently that G must be having a hard time...then..oh, it probably isn't easy for you either..ya think? But, I kept my mouth shut because he really didn't care. Not worth the effort to be upset with someone like that.