I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I told you that my emotions have been all over the place. This blog is an indication of that. I really am curious if anyone else feels as I do. Please post comments here.
Oh Joan, you have put into words all the things I have been feeling lately. One of the many things I miss besides the companionship is the sharing of the memories DH and I have shared the past years. Like you, I found myself asking him something about a past occurrence only to have him stare at me with that look they get when they are just lost. I don't like being the guardian of our memories, it is too painful. Tomorrow will be the anniversary of our eldest daughter 's murder. It was the most horrific time of our life. DH was so strong and was my rock that helped me to survive and I won't have him to hold my hand tomorrow. The only positive thing I can say about AD is that he will have no sad memories tomorrow. Besides losing the good memories they have also lost the sad ones... Ruth
rpmaz, I know firsthand the pain and anguish, as my son was murdered on Christmas Eve 2010. DH doesn't remember this either, and will ask several times a week when my son is coming to see him. Nobody to lean on here either. The pain does ease, but never will go away. My heart aches for you and I wish you only peace during this difficult time.
Joan, I know exactly how you feel. I have almost stopped bringing up anything about our past because it only gives me pain- he doesn't remember.
rpmaz, Many of us will be holding your hand from far away and I will have you in my heart tomorrow. My son died in January 2010 and it changes us forever. Vickie, only someone who has lost a child can feel your pain and I do. Peace is slow to come.
Joan, You've given me something to think about. I really don't know how I feel about this subject. I talk and talk to him about some of the things that have happened in our lives, hoping he'll remember, and some of them he still does. Maybe I do so much reminiscing just so I can re-live some of the happy times. There are some bad ones, and he doesn't seem to remember those. Of course, I think some of you women know that men don't think anything bad happened in their marriage, everything was just wonderful!!? I'll get back to you on this one and let you know how I feel.
Vickie - My daughter lost her only child and my grandson, so I know a little bit what you're going through. My husband does remember that very well and it was 15 years ago.
Sid doesn't remember the bad or the good. Everything is either hazy - "vague" as he call it, or just gone. I feel as if I've lived the last 40 years by myself.
Oh, dear people - I was going to write about Joan's blog, and still will, but when people say that AD is the worst thing in the world, I say 'no' and think of those who lose children. My sister lost both of hers as adults. She taught me a lot about life, how to face it, how to live and go on. We were a close family, I was barely 7 when my niece was born, we literally grew up together, closer in age than I was to her mother. Imagine being an aunt at 7. As much as it is possible, I send you deep feelings from my heart. Bless you all.
As for shared memories, my DH and I were in grammar school together, graduated high school together, and all those memories of school, the neighborhood, people, disappeared for him. At one point he asked me to marry him--did he forget our married life? I know others have had the same experience. I had my sisters to share memories, but one died at 90 several years ago, the other is 90 and in the throes of vascular dementia, she doesn't remember much of anything, altho she does know her children and me and I think my phone number because she calls, but also has someone 24/7 in her home. She still can do math problems in her head! Go figure. I do have a gentleman friend who was in school with us, so we share those memories, including things about my DH--but not the personal married family memories.
I'm older than most and as time goes on and memories get further and further away, I often wonder who it was who did all the things I did. Was it really me, that little girl, who did that 70 years ago? Yes, it is like a movie, not just the AD part, but other things, too. Sometimes I do want to talk to DH just as there are times when I want to share something with my parents. I guess that's life.
Bettyhere - technically I was born an aunt. Having a father 21 years older than my mom - his daughter was 6 months younger than my mom and his son was 2 years younger. My mom's oldest had her first when I was 3 and we always had fun with that as he called me auntie baby.
As for memories, due to all the abuse and sadness I really do not remember much. When I went to my 40 year reunion 2 years ago those that I hung out with would talk of things we use to do and I remembered very little of it. My siblings will talk of fun things and I only remember painful/sad things. As for my marriage, it always had stress so is hard to remember any good times. I know there were, just can't remember them. I can look at pictures and seems like they are someone elses memories, not mine.
You sure got me beat. My little friends would push me and say, 'She's your sister, you can't be an aunt.' I'd run home and ask my Mom & she'd confirm it, but my friends said 'no' because I did not carry a purse with chewing gum. Some rules just cannot be broken. My VaD sister recently gave me a pic of myself I'd never seen, I was 12/13 or so and have no memory of taking it as I do of other photos. Took me days to figure out where it was taken--at least I think it's me, others say it's me, but I know what you mean, Auntie.
Joan when I read this month's blog IT caused me to go through a number of your prior blogs. Like all of us the traveling through the phases of loss it is the most painful experience the human spirit can endure. You express the resignation and despair we all go through so well. Joan I'd like to share a article I read/edited/modified, a description of coping AD It's been in my files and I don't recall who to attribute the original thoughts to.
My Coping with AD 2005 DENIAL when you first begin to perceive a problem, but won't admit it. This can't be happening. She just got lost in the parking lot unable to find the car. 2007 SHOCK : when your MD,says your worst fear just came true, takes a while to realize, yes your life as you formerly knew it is gone forever EDUCATION: Running to the Research Neuro. Confirming diagnosis. Scans, spinal puntcures, demeaning and depressing testing a descent into one of the rings of Dante's inferno. Next, trying to get into every new drug experimental trial available. Praying something will help. THEN: It's working, but sorry not for enough people you can't have any more of the drug.. Endless hours spent reading everything on the Internet that has ever been published on AD. Deluding yourself that you'll something that will provide a cure. Slowly, all this research leads to one conclusion, there is nothing available I had to to move into realization that as of now no hope, no cure, no future and ever so slowly I began to adjust and accept. 2010-11 ADJUST: I realized quickly that it was either adjust or die. From Jan '10 to Sept '11. I had spinal surgery, received 9 weeks of 5x a week radiation therapy for prostate cancer, and underwent a triple by pass operation. To top this off my wife had an ER appendectomy (malignant) and underwent removal of 1/3rd of her small intestines. DXed with stage iv cancer told she had 6 mos to live without chemo and said no thanks I'd rather die of cancer than AD. STRESS???? I knew that I would have a stroke, heart attack, or something equally ominous if I did not stop fighting reality and adjust to the fact nothing can stop this one way journey to into mental oblivion. I had to learn not to torture myself. Alzheimer’s Disease is going to advance. I cannot stop it. I had to learn to cope with it and allow myself to resume living as close to a normal life as possible.. Adjustment does not (did not) happen all at once. I continue to adjust in increments. When a change occurs, I still fight it, I fight it tooth and nail refuse to accept it, but each time now the fight is less intense and then I focus more on how to adjust to it and cope with it. PRESENT ACCEPT – When speaking of caregiver stages, most people do not list adjust., they go right to “acceptance”. Being who I am, I prefer the term “adjust” to “accept”. I will NEVER accept the loss of the best, loving, trusting, passionate relationship I could ever have dreamed of having. I will never “accept” the loss of ‘US’. But I have and will continue to adjust to it, there is no alternative. I am still alive, I'm still me, I love my wife and I have a life beyond AD
Additionally, My heart especially goes out to all those who recently mentioned of loss of a child; a parents worst nightmare.
I can so relate. It feels as if we have no past or future as if we are living limbo. All we have is now and tomorrow now is gone and we have another now. So sad for both of us only he doesn't realize that these issues exist he thinks everything is normal and I guess it is- a new normal! I totally appreciate your honesty. It takes a lot to express all the feelings you/we have. At first I was embarrassed to express them but you have helped me to know it is ok. We are not alone. Thank you.
Since I wrote the "Is it all a movie?" blog yesterday about me not being able to "feel" the memories of our life together because my husband does not remember them - I have done more thinking about it.
I remember the feelings I had in all of my other memories - my prom; my first day at college; the day my sister was born - when I think of a multitude of incidents from my life before Sid, I "feel" as well as remember them. But I can't "feel" the memories of my life with Sid - it's like watching a movie in my head of someone else. I can't figure out if that is because he is not able to share the memories with me, or it's just a defense mechanism on my part to shield myself from the pain of remembering the feelings all by myself. As I said in the blog - I don't know. I have questions but no answers.
or it's just a defense mechanism on my part to shield myself from the pain of remembering the feelings all by myself. That's my vote Joan. Your love for Sid and the loss of your beloved Sid is shattering your heart. The twlight zone we call life doesn't let you go or let you grieve. How wonderful a love you two shared.......
Yeah, I think it's a wall. I think I've been the wall-building champion since Jeff started deteriorating almost 10 years ago. Now that he's crashing and burning and is so vulnerable, they're coming down. Whether I want to or not, I can feel and remember plenty of things I've been avoiding.
Joan, as always thank you for starting this group. I have learned so much from each and everyone of you. As I said previously your current blog really hit home with me. Ruth
Ok Joan your blog was Is this a movie???? Well if it is I want my money BACK and I never want to see another movie as long as I live.!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Joan, I feel the same way. I will remember a special trip or a problem while traveling or something hilarious during a vacation and yet am met with the same blank stare. Like a few above, on April 15, 1991 our son was stabbed to death at our local high school. I think there is some kind of rememberance as it seems the entire week of the anniversary of the tragedy, DH seems down. Yet , I resent the fact that there I am alone stark raving aware of the events, the 11pm news the newspapers, the jury trial while he is not sure what is wrong. During that period of time, I had to have my DH institutionalized as it was just too much for him and even back then, it was up to me to handle the problems and loss, funeral arrangements. I hate to sound selfish, but it just seems like for so very many years, I carry the responsibility and heartache all by myself. I don't like the bitterness that I feel for what life has dealt me. I just spent another week in the hospital while my DH spent another week in an acute psychiatric ward for stabilzation. I am just very sick and ragged and since he has no memory of this horrible last two weeks(each of us in a hospital in a different town)-he can;t see why I am so nervous. Sometimes it seems like DH has the easy way out everytime with the AD--I am not trying to minimize his disease and am a very giving person-but I feel it's all on me the good and the bad memories and sometimes it's just too much for one person. Blessing to you , Marie
Cookiemarie, I'm sorry that you have had so much heartache and responsibility and wish that I could in some way help. It will come to an end. I will keep you in my prayers and send you love.
Joan, I'll chime in on this. I don't ask nor expect Steve to remember anything from the past. I feel fortunate that he still recognizes me and shows affection. Just like I take care of everything--from soup to nuts--for his benefit, I feel I'm the keeper of his memories, too--his "brain". I'm happy that we were priveleged to enjoy years of a near-perfect relationship--many people do not. I don't have any Zoloft going on here, nor any other psych meds--maybe you've hit on something there in terms of how they affect emotions?
As for Zoloft, yes I'd say so. A couple of years ago I tried Celexa for the usual reasons. (yet another SSRI.) My PCP told me flat out that it helped by "making you not care." As it turned out, I only took if for 2 days because of intolerable side effects, but I have also used St. Johns Wort, an herb that, chemically, is thought to have an effect similar to SSRIs. I used St. J's Wort for a couple years until I began to feel that I was, maybe, numbed in a way. Sort of inert. It bothered me, so I stopped and use just some ayurvedic supplements now which seem more "balancing" and have less of a chemical effect.
I'm not trying to make a point that we shouldn't avail ourselves of "better living through chemistry" if it helps in our often unbearable situations. And obviously the effect will vary.
But yeah...processing the fact that your shared history is no longer shared is one of our stepping stones. And a toughie at that.