I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I expect that many of you at the beginning of this journey, and maybe some of you in the later stages, will disagree with me. I welcome respectfully stated differing opinions. Please post comments here.
Disagree? Not on your life. Joan, I could have written that blog word-for-word about myself and DH. (Well, I couldn't have written it as well as you did…but you know what I mean.) The blog describes my experiences to a Tee. I married DH for his personality…and that was the first thing to go. When I think about how close we used to be…and now it is the closeness of pulling his adult diapers up and down, or placing the urinal for him, or wiping up poop from his backside and every other surface known to man…it is just a bitter, sorrowful, heartbreaking thing…what this disease has done to both of us and to our relationship. I don't really know how I'll be when he finally dies (assuming I don't go first, from stress and self-neglect.) I can't really visualize myself as a human being again and not an indentured servant and caregiving slave. But I do know one thing. Life and who I will be and what I will do will be very different. Friends, family, and career have all faded away over these past 14 years of the Alzheimers journey into Dante's Inferno. I will be like someone landing on a new planet and having to start life all over again from scratch.
Very true. Personality often does goes first, taking with it his/her ability to be that person who loves you for you, relates to you as friend and partner, and fulfills your need for emotional intimacy. If your marriage is based on those features, then your marriage--as you knew it--is gone.
This one will surely be bookmarked! As I read through Joan's blog, I realized that of all the changes that have happened thus far, his personality is what I miss the most. Dan was always an upbeat, happy person (at least, that's what he projected), never met a stranger kind of guy. He was always willing to help someone (well maybe not me so much with my honey-do list!) Perhaps reading the comments on this entry will help me to remember the person I married, & why I married him (head-over-heels in love). Looking back over the last several years, I realize that person has been slowly been coming under the control of the disease from hell, & it will eventually consume him. He was diagnosed in 2010, but this has been infiltrating our lives for as far back as the early to mid 2000's. Ever so slowly, this disease has insidiously begun it's march forward. I can understand now when & why things started to change in our marriage, on every level.
I especially like the intro paragraph of this wonderful and thoughtful piece of writing. At times there have been newbies who post with exuberance how well they are managing, and traveling, eating out, going out with friends. etc. I know that they don't know the half of it yet, and I try to be understanding, but it - how to say this kindly - bothers me. I guess because I feel that they are posting in order to brag about how well they are doing and not looking for information or support. And I know the piano is going to drop on their heads one day, their universe is going to be completely reordered, and their jolly good cheer may be changed into grinding, drowning depression and bone weary fatigue.
This is my problem and I own it. But sometimes I want to write "shut up until you have been on this road for four years (or six stages) or more." And I don't really mean it. They just don't know. I think I wish I had their ignorance-is-bliss problem. And in a way, it is a reflection of the problem of the public perception of Alzheimer's.
But I do appreciate the posts of "I'm new, and lost, how do you turn the dang flashlight one?" And with that, people from all over the world offer support and kind words. And this whole Alzheimer spouse world shows the newbie how to turn the flashlight on, and share the wisdom of the long and winding road.
Joan, as I have watched you fight tooth and nail to not loose your marriage to this beast Alzheimer's, I can't help but wonder how you would have made it without this life saving site you created. You are right - it does change the relationship. For some of us we detached early on, but for others they fought until they had no option but to surrender if they were to survive to live again.
Marche, good comment. Their ignorance really is bliss for them - for now! It won't last & we know it, but just hope & pray they know where to come when things really start to go south for them - they will need this blog big time! I suppose in the meantime, we should just give those posts a nod & move on - they'll be back!
I hope that doesn't sound too snarky! Bless all their hearts.
I've been thinking for a few months how I could possibly post here that my dear husband passed away in April. I have been reading this site for about four years but only posted a few times. I hesitated to intrude on what seemed like such a wonderful community of friends, or should I say warriors in this horrendous battle. But I have to say that this topic is particularly poignant for me. My husband had Lewy body disease and passed rather quickly. I would say probably five years. But, now that I have the perspective, and rest to reflect, I do so miss the loss of my married life during those last five years. My husband was larger than life and now when I look at pictures I notice he always had his arm around my waist, my neck, my arm, my leg. God, what I would give for those moments again. But Joan, you are right, as usual, it is difficult if not impossible to relate to that spouse when you are doing things you never would have dreamed you would do for someone else. He was only in an ALF for the last six months and I was there every day, all day. I couldn't stay away if I wanted to. And yet whenever he wanted me to stay the night, or during the snowstorms when I stayed all night and he wanted me to sleep in his bed, I could not do it. That has haunted me since his passing. Everything about this disease is horrific and robs us all of so much. Sorry for the venting. Guess I've had this bottled up for a while.
Thank you, Joan for another on-point blog. AD damaged our relationship long before I knew what it was. By the time it was diagnosed, I already had hardened my heart and was confused and saddened by the rotten turn our marriage had taken. Once he was diagnosed, it was really hard to forgive and forget everything just because the disease had a name. Yes, there was now a reason for the lack of interest, the detachment, the passivity, the raging, and well, I'm sorry to say this, but this is what it seemed like at the time, but the stupidity. I took it all to mean that he didn't care enough to remember or focus or try to change. Okay, so now we knew why, but I still had all the anger and bitterness that I had to somehow magically let go of so I could care for my brain-damaged spouse.
At first, I tried to figure out which bad behaviors were due to AD and which were just remnants of the old personality. It was impossible to know, so I just started to blame it all on the disease and he got a free pass for everything. This can be crazy-making and or a long time it filled me with bitterness and resentment. Not good for any relationship, much less a marriage.
When we started the journey three years ago (since the diagnosis, but at least four more before that) I had no idea how I would ever be able to stay connected enough to want to take care of him but detached enough to let all the nasty stuff go. And I still don't know. It is a razor-thin line that I fall off of a hundred times a day. But it is getting easier to balance as long as I have no expectations, constantly forgive him and myself, and let go, let go, let go.
This kind of a relationship is not a marriage but I pretend it is because that is what it still is to my spouse (although sometimes he thinks I'm his mom). I know what I'm having to do to get through every day is changing me. I don't know how and I don't think it is for the "better." I can't remember who I am any more and like Elizabeth, just know that I'll have to figure that out in the future.
What the previous posters said about people early on in the journey may be true, how they want to talk about how well they are doing, but one can only speak to what they have experienced so far. And people desperately need to feel like this is something they can handle, that maybe life will be okay. It's part of coming to terms with a hopeless situation. One of the reasons I stopped posting was I felt like those who are further along have already discussed everything. But those posts get buried and new people desperately need to hear that someone else at the same stage they are in is facing and handling the same challenges. I try to take in all the advice of the ones who have gone before and learn from their experience but so much is now about the end where all the spouses get put away and then die and the remaining spouse is left with the giant hole that swallowed their life. That's unbearable to think about at the start when you're just trying to figure out how to pay bills and find doctors and learn about AD and trying to not run for the hills.
I was just thinking, we need a spouse's manual. Not about taking care of the AD spouse, but one that goes through the phases of the destruction of a marriage and what you're likely to emotionally encounter at each of the AD stages. I know that old saying, "If you've seen one person with AD, then you've seen one person with AD," but I wonder if the spouses' journey isn't much more common. Joan, here's your book.
marche, I was one of those "newbies" relating what we were able to do and offering suggestions on how to engage your spouse in meaningful activities. Everyone who was further along in the journey was supportive, told me to cherish what we/DH could still do and most of all live in the moment because everything could change. I wasn't smug or thought what I was doing was better than what anyone else was doing to keep their spouse engaged, I was naively offering my experience hoping I could help someone like those before me helped me. I re-read those early posts and think "I was such an idiot...what was I thinking?" My intent was pure and trying to be helpful but I think because I was so immersed in our new diagnosis and reality (which was horrible in my mind) I just could not see or understand what was the reality of those further along in the journey. I will always be grateful for those who were here before me...they were supportive, kind and most of all non-judgmental.
LFL, I understand what you are saying. Because of my background and experience, I knew from the moment the diagnosis was made that it was a fatal disease that would try to take down everything in its path. I don't remember ever thinking that this was a situation that one "makes the best of." We weren't allowed to ease into the disease or the diagnosis - it destroyed everything it could as soon as it could and left my DH and me deeply depressed as well. Neither of us could help the other. It nearly killed both of us and sometimes I wonder if that would have been such a bad thing.
The difference is, I think, that you still post and we have followed your journey with deep care and admiration. It goes to show that some have a breaking in period and others are immediately tossed on the fire. Because of your husband's diagnosis, you have become one of the most resourceful and creative caregivers on this site. I cannot tell you how many care giving tips I have gotten from you.
And please understand that I didn't mean to pass judgment if it appeared that way; I was just mentioning a knee jerk reaction that I sometimes have.
Ah yes so very true. I liken it as well to dealing with a disabled child. My marriage was basically over long before the diagnosis because I dealt with 8 years of vascular issues with his leg which put him in and out of the hospital all the while I was working a fill time job plus part time in the evenings. Lots of resentment but have let that go. He is now placed and all he wants it to be with me all the time. It is heartbreaking because that would literally kill me but the poor soul does not understand so I just tell him I am doing the best I can. The hospice social worker told me an "average of 10 years from diagnosis to end stage. I am working on year 6. I am sorry to say that sometimes I am actually envious of those people here with asterisks after their name.
CO2 - don't feel alone in envying those who have lost their spouse. When those who had good marriages loose their spouse I would love to trade spots and have my spouse and not theirs.
We all start off with the energy/hopes to keep our spouse engaged but we run out of energy and enthusiasm. My husband does less of the word searches now and mostly just sits watching the TV. I try to keep in on programs he likes and can follow some like games shows and old shows we grew up on. We watch a lot of TV Land and MeTV.
Thank you for this posting, Joan. Although I am at the beginning of the journey, my DH has frontal lobe damage so personality was the first thing to go. I found myself married to a person I didn't know, didn't like anymore, someone I never would have married. The diagnosis explained why this is, but of course we still have to carry on somehow.
Bunny's lamb, it is very very hard to stay detached and let go of all expectations. I keep thinking I have let go of something like expecting to be asked how I am, only to realize that loss still makes me angry.
Friends see a different guy as he can be pleasant with them and appear ok, just a little confused. They don't see the lack of interest, the rages, the rudeness and unkindness. They think I still have a husband who is just a bit forgetful. He tells all our friends that he loves me, and they don't know why I'm not satisfied with that. I can see I will have to be very forgiving not to lose my friends, especially when they frequently say, oh yes, my husband forgets stuff all the time.
I did read one book which helped a little bit by Pauline Boss who wrote Ambiguous Loss. This is called How to love someone who has dementia: How to find Hope while dealing with stress and grief. But this website is especially helpful. Thank you Joan.
Marche & LFL - I think maybe my "snarky" comment shouldn't have been made. At the beginning of any major event in one's life, there comes the "We will beat this, we will get through this together, we'll keep living normally, etc." - bless their naivete' & lack of knowledge at that time. Maybe that's all they really need to deal with then, and trying so hard to keep the chin up, keep a stiff upper lip & all that poppycock,keeping it positive because they might think that will lesson the problems. There will come a day when they won't be able to find the energy or the interest in keeping that up. It will crash for them & we help to pick up the pieces. I hope will be able to extend a hand or a shoulder should it be needed then.
Or maybe they are just in total denial & refusing to accept help from anyone yet. I just don't know.
After 48 years married love went down the drain sometime during this 10 year journey with all the incontinent messes I had to clean up and wondering if my back pain would let me stand up again. My physical pain (and DH being physically fit) made me resent it to the hilt. The man I fell in love with and married no longer existed. Since LTC placement I visit and am kind to him because the memory of the wonderful Father he was to our DS and DD will always be the best memory for me. When seeing the toddler he is the married love memory has vanished. I hope I don't sound to mean and ugly about this subject but it is just the way feel. Great blog, Joan, thanks.
Thank you Fiona68. AliM I know how you feel. That is exactly how I felt. For two months after my husband passed I was angry with everyone. I was so surprised because frankly I thought I would be relieved that I finally had some of my life back. For me, I think I just needed to cry, to scream to feel all those emotions that we have to stuff down just to survive the day to day exhaustion of caring for someone with dementia. But now I am slowly thinking about all the good times in my marriage, his sweet smile, the way he would bring a cup of coffee to me when I was rushing out to work, his tenderness to our grandchildren. Things that I hadn't had time, or the desire to think about when I just wanted that horrible journey to end for him and for me. I'm sure that there are still tough times ahead, all of those "firsts" for the upcoming year but I'm more hopeful now that I will be okay without him. Missing him terribly, but okay.
Our son read this Blog yesterday and he nearly cried. No one except a Dementia spouse would realize that this can happen to us.
We had a spouse in our support group that " was fine, no problems. I can handle it. Not like any of you." Some of us wanted to just shake her into reality. She would talk for a half hour or more about how great she was and how nothing was or would upset her. She didn't and didn't expect to need help. " nothing I can't handle"
She was the perfect dementia caregiver. I hope she has sense enough to reach out for help before she explodes. When I told her about this site she just dismissed the idea of needing any advise or support from anywhere.
He still loves her she still loves him and this is how thus disease would progress for them.
I have found it very hard to love this new man and have to dig deep to find the memories of the one I did love or I really don't know if I would be able to continue caring for him. You know that the abuse is caused by the disease but it's still hard to live with and to just shove aside and smile and continue as if it wasn't happening. It hurts when that man you loved so dearly for long now treats you so meanly and says such mean things or physically hurts you.
Will we forget the bad things after thus journey us over? Anyone know? I sure hope I can!!
For me, one hard thing is that I see that the FTD has changed our relationship, she doesn't see that at all. She thinks her living in an ALF has changed it, she doesn't see how it changed before her move.
So sorry for the loss of your husband. Glad you found help in reading the posts.. It's good to post if just to have a safe place to vent or express your feelings. Everyone is here to help each other.
Oh dear Joan. Such a fabulous post as always. I kept nodding my head in agreement all the way through. On Father's Day, my husband's son posted a photo my husband on face book. It was a photo from years ago, when my husband was wearing his kilt, leaning over laughing as he posed with our grand daughter, also in a kilt. My husband's eyes were full of life, his smile radiant, and his big strong body evident. His joy of the moment shone though. I cried seeing that photo as I had just left visiting my husband. Now his eyes are empty, he looks vacant, and has lost so much weight he looks frail. The essence of him left a long time ago. As you mentioned Joan, now my husband is like a special needs child. Our "marriage" was over years ago as so many others have offered as well. Like many of you, I have no idea who I am now and struggle daily to simply keep going. I have said a million times, I would not being making it without this site and all of you. I don't post often and do read every single day. Thank you sincerely.
2 thoughts: Earlier on in my membership here, I did post about travels I took my husband on and whatnot. There was, however, no naivete in those descriptions--it was more about--how I'm trying to keep myself sane, for as long as this is manageable.
I have tried, throughout the process, to project positivity where I could because it drags me down too much to dwell in the despair. I guess we need to realize, as participants here, that there are many ways any of us may need to express ourselves over the course of the journey. Some may have a greater need to say "Look! I'm keeping my head above water! I'm still alive! Look!" Others find the ability to spill and vent to be the most therapeutic way to use the forum. You'll see the same thing in Facebook or other media of social expression. A general tendency toward positivity may just mean a person is more privately coping with the sadness, and the flip side is that one who unloads despair online may be doing so so that she can present a brighter face to the flesh and blood/brick and mortar world.
Interesting point Katherinecs made (above this post.) I am, 8 months after my husband's death, starting to be able to return my memories of him to a place/time when he was healthy and vital, and that's a good place to have my memories. It took a while for those memories to resurface because there were so many years of debilitation. Recently, a good friend has been occasionally sending me, by email, pics he took of Jeff at various events over the years of the illness, and I almost wish he wouldn't. I thank him, and I know he cares deeply, but I really almost don't want to see those photos of Jeff with his Alz-vacant eyes and out-of-it expression. I am happier to be thinking of him the way he was 10 years ago and before.
I like joan’s comparison of one’s spouse to a “special needs child.” My husband is not yet a toddler, as joan’s husband is – I would say he is pre-teen or a little younger. I feel like I am seeing him as the child he was then and I communicate with him on that level. I call him affectionate made-up names like “snugglebug” and say, “See you later, alligator,” instead of “Goodbye.” After I shave his head (which he wears bald), I kiss the top of it and tell him how nice he looks.
Some people told me that after he went into LTC, I could “stop being his care giver and go back to being his wife again.” How ridiculous. I stopped being his wife years ago and that has not changed. Although my present role is somewhat ambiguous, it is somewhere between a mother or big sister and a girlfriend, depending on the day. He sometimes calls me his “sweetheart” and other times, his “Mum.” When we walk outside together we hold hands, but I’m not sure if that’s because we are sweethearts or because I am the affectionate mother or big sister who is holding onto a young child.
Our spouses’ illnesses take so many different forms, maybe like the different kinds of disabilities that children might have. I feel bad for those whose spouses have illnesses like FTD that have ruinous effects on their personalities. I am lucky because my husband has a disability that has not robbed him of his essential sweetness. He is a lovely child.
There were no photos during the last 4 years or so. When the travelling stopped the camera was put away and that was that. While sorting and culling old photos at home these last couple of years I came across a few of my husband that took my breath away, and not in the positive sense. These were mostly small group photos. My first thought was, "what in the world is he looking at?"
The answer seemed to be "nothing". His gaze was some combination of lack of focus, daze, distraction, and apathy. So unlike the truth of himself present in earlier photos. katherinecs said <<his joy of the moment shone through>>. That was gone. Some of the body language and even some of the facial expressions were appropriate: he smiled but the eyes were empty.
I am contradicting myself. I also found as part of his medical records, the id photos taken when he entered rehab and then ALF. He was gone and in his place was a shrunken, frowning man who looked thirty years older than he was.
I married the kindest man I had ever met. Getting married at 33, I'd kissed a lot frogs and some princes too, but I had never met someone so kind, compassionate, loving and accepting. You see I was diagnosed with rheumatoid arthritis at 21 and it was (and continues) raging through my body destroying every joint. But it didn't matter to my future husband, he loved me for me and truly didn't care what the physical destruction would mean to each of us separately and as a couple. We were best friends, shared a love of sports, travel, music, you name it. We were soulmates, and as my body got destroyed before our eyes, he was always there to help, support me and yes be my cheerleader through 2 knee replacements and a hip replacement before I was 40 and before our 10th anniversary. He was my warrior. We weathered deaths of parents and close relatives, my illness and never gave a thought that our love would be tested and changed so dramatically. We'd fought the battle and we won, right? We were forty and fabulous!
But if I am being honest, our marriage was in great jeopardy at least 7 years before Rich was diagnosed. We chose to leave our long-term employer for the promise of "retiree benefits" in the midst of major reorganizations, downsizings and corporate greed. Leaving an employer for whom you've worked for over 2 decades is a major decision but we were not yet 50, still in the "prime" of our careers and looked forward to a "new" adventure and new possibilities with different employers.
But instead of sharing new adventures and being able to find joy in new jobs, a monster replaced my husband. He refused to work or kept getting fired from the most basic jobs, was emotionally distant, moved out of our bedroom, no longer cared about me or even pretended to, he became physically and verbally abusive, totally selfish and obsessed with internet porn. I was confused, angry, deeply saddened but resigned to the fact that he no longer wanted to be married to me and we were heading for divorce. I had no idea that we might be dealing with dementia. Classic male mid-life crisis and I'd had enough.
So when he was diagnosed with unspecific pre-senile dementia I had no idea what that meant to our future or our past. It was only after coming here to Joan's wonderful, lifesaving site was I able to understand that the monster who replaced my husband was dementia and that the future would be challenging and deadly. I will tell you for the first 2 years I was angry and vicious about how I had been treated during those years before diagnosis and I wanted revenge. I wanted to hurt him physically and emotionally the same way he had hurt me for all those years, yet I cried hysterically when taking a shower about our shattered life.
Dementia ruined our future and certainly almost destroyed our past. I refer to my 50's as the lost decade; I am truly lucky to be alive. I now care for a man I loved and still love deeply but who is the neediest of children. Dementia destroyed our "married love" and almost took away all of my love. It gets harder and harder to remember those loving, carefree days as he declines deeper into his dementia fog but I am committed to being the witness of such a wonderful love, no matter how hard it gets.
Yep, been there, done that. I am so sorry Joan. And I think this part is the hardest for people not dealing with the disease to understand. You said it perfectly, they are like a special needs child.
I think your assessment on the loss of married love is accurate for yourself and most of the caregivers on this site. However for my situation, it was quite different because of two factors. First......My dear Helen did not have ALZ. It was vascular dementia, which progresses rapidly and it's not such a long journey. Secondly......Is the difference in our ages. Helen was diagnosed at the age of 82, (me 87). She passed away at 87, (me 91). Married love was no big deal for us. Even though for the last 18 months she didn't recognize me as her husband she always enjoyed a hug.... from whomever. In bed at night she would say to me "What if George finds out about us?" We had 67 years of married love and it was great, and I think we had our share, but for you Joan, and the others on this site who are going through this in your 50s, 60s, and 70s, I feel your pain and sorrow because those were the years when Helen and I were having the most fun. ...........I think it pays to be old when tragedy strikes.................GeorgieBoy
Joan, As usual your blog was right on. I really don't see how it would be remotely possible to hold on to "married love" once this disease takes over. Maybe in the beginning, we can lie to ourselves by thinking we will be the exception to the rule. But it becomes clear as the dreads of the disease spread that we slowly turn from lovers to babysitters. I think George is right that at what age the disease strikes determines how severely the impact of the change is felt, but it still steals precious "closeness time" regardless. LFL, I found your story very touching. Clearly, you hold special memories of what a good, loving person your husband once was to you.
Wow Joan...once again you nailed it. This blog is spot-on as it describes what our reality as dementia spouses becomes. So many memories surfaced for me as I read it....the good and the bad....We lose so much, don't we ? And no one but those who have lived through it can even begin to understand.
Lady Golfer, I am so sorry. Please be patient and kind with yourself as you continue on after this loss. Thanks for sticking around to help the rest of us!
Joan, I love the hurricane analogy. A category 5 usually leaves nothing recognizable where it strikes. So sad but true.
Also the "special needs child" part. I have already observed this in our home. I keep my 2 grandsons while mom and dad work (supplements our income so that I can be home). They are 3 1/2 and 1....and such a source of joy and hope for the future...I might add. I am witnessing more and more how in tuned the 3 yr old is to Papaw. He helps him get his shoes on the right feet, wants to lead him to his chair etc. He is so tender with him. The sad part is, he IS helping him. T doesn't even know he is trying to put the wrong shoe on his foot...but the 3 year old does!
Joan, like so many others here, your blog really resonated with me. To be honest though, I try very hard not to think about the loss of our relationship, love, and marriage because it is so devastating. I have tried to just focus on the glimpses that I see of my sweetheart and have treasured those moments. However, lately he has descended into this fog that will not lift. What strikes me most is his eyes; once so beautiful, now so vacant and, when there is any emotion at all in them, it's sadness and confusion. The overwhelming grief that I feel threatens to crush my spirit. It's a daily struggle to be positive, but that is my nature and I need to be positive for my own survival.
Well I my be nearer the beginning of the journey but this disease has completely changed my man and my married life. Not because of his physical dependence but because of the complete change to his personality. I was told by my doctor that this was him adjusting to the illness (He was diagnosed January 2013 in the UK) but it has continued and has got far worse. I married a sweet natured, laid back, Fijian who laughed in every sentence and never lost his cool. He was deeply committed ex politician who worked all his life for his country and people. When we moved to Fiji on my retirement 10 years ago we set up a charity together to look at sustainable ways to improve the conditions of poor people in the interior of Fiji. Now he has become selfish, he doesn't care about our charity which I am left running on my own. He doesn't help at all even to carry shopping in from the car. He has become racist and has picked a fight with a Chinese farmer a neighbor. He constantly criticizes my cooking , my driving just about everything I do. He doesn't want to kiss or cuddle and our sex life has gone. He was such a sweet man he would do anything for me. Just sometimes , less and less often, I see the man I married shine through. For example he makes me a cup of coffee in the morning. it's full of sugar, often cold and even without coffee in it but at least he tried. I try to latch on to these incidents but I worry with so little positive left in our relationship how can I go on?
Juliedewa, I have a similar situation, near the beginning, but a big personality change to deal with. He has turned into someone who isn't very likable. My husband had been so gentle and easygoing. Now he is so negative, angry and childish.
I finally had to think of it as if my husband had died, because he is mostly gone, and I am left with this other guy who is difficult, but is still a human who deserves care. So I started all over trying to create a new relationship that is not based on husband and wife. I lowered my expectations to almost zero and then slowly set a few boundaries, such as no yelling ever, no arguing or complaining at mealtimes. If I hear unfair criticism, I just walk away to another part of the house. Gradually that slowed down the negativity being expressed constantly.
Keeping expectations low is a constant struggle, but it has helped a lot. Hope that might help you at least a little.
Hi juliedewa, it's the personality changes that happen first and in many ways are the most difficult to adjust to. You get the diagnosis which is devastating, then want to work as a team to plan for now and the future and your spouse is behaving like someone you never knew or worse someone you hate.
JudyBC's advice is good but it's not easy to keep expectations low and reinvent your relationship when the person you love still looks the same on the outside.
Totally agree LFL. Him looking the same and having friends say he is the same make it very hard to see him as a totally different person.
It has really helped me though to have you and others say that the personality changes early on are some of the hardest to adjust to. I hang on to the hope that I'll get more used to this.
Joan, as usual, you write about something that strikes very close to home—literally.
What keeps going through my mind is that marriage is a relationship. It takes two people. There is supposed to be love, give and take, mutual support, companionship, partnership, and a physical relationship. When there is none of that left, it should not be surprising that the love changes. But it is still a surprise, and it still hurts.
The love I feel now for my husband is more of a hopeless love. I know my love will not be returned. The man who always had a twinkle in his eye when he looked at me is gone forever. It feels like he just quit loving me. I know that it's the disease—I do know that in my head—but to my heart it still feels like I have been abandoned by someone who used to love me.
I love my husband now because we've been married for so long, and because I know what kind of man he has been as he lived his life. He truly deserves someone to love him, and take care of him. It's unfortunate that in doing that for him, it has fractured my heart into a million pieces.
DH is not the only one who is being robbed of his "golden years". I feel like I have lost everything that made my life worth living. Over a quarter of our 43-year marriage has been lived since diagnosis, and that doesn't count all the years when I could see personality changes before that. That is a very long time to be alone, but still be married.
I am constantly amazed that while we are living through this gut-wrenching daily battle with this disease and with the loss of our spouses, nobody seems to see it. How is that possible?
I fell in love with a motorcycle riding, black leather jacket wearing, duck-tail haired young man whose jeans rode dangerously low on his hips. He took me to the movies in a roadster he’d built himself. His smile melted me completely. I imagined myself 3 inches tall, standing in his shirt pocket, looking over the edge like Kilroy so I could go everywhere with him, be with him all the time. And he loved me, unconditionally.
A month before the wedding, he sold the roadster and bought a coupe. The day before the wedding he had the ducktail replaced by a flat-top! I was stunned! The motorcycle never came to the marriage, the leather jacket was never worn again, jeans were replaced by pleated slacks. The hair grew out, but no more ducktail, just standard neat cut. Yes, I know, marriage changes people, but overnight! He was 21. I went on a date with the Fonz and came home with Mr. Cunningham.
And then there was the phone call from his supervisor at work who called me at home one afternoon when he was 25. He told me my husband did not respond in a normal way, I should take him to a doctor! I never told my husband, he’d say, ‘there’s nothing wrong with me,’ the doctor would say, ‘there’s nothing wrong with him’ and all I could say was that I was told to take him to a doctor! Years later I’d realize the man knew someone who acted like my husband, maybe his father and he was trying to warn me to catch it before it got too bad. It was 1954; no one had ever heard the word ‘Alzheimer’s.’
Of course there was more, a lifetime more, we always loved each other. But AD came between us and until he was 64 in 1993 as society finally began to hear the word Alzheimer’s and learn what it meant; it never occurred to me that I was dealing with a brain disease. Maybe it was just as well. I believe AD was always there from the start. Sometimes I wonder what my life would have been like if we’d ridden off in the roadster instead of the coupe.
Recently, my DH has begun to tell me frequently that he loves me. Of course, I tell him that I love him too, but everything else that was in our marriage at one time - "the give and take, mutual support, companionship, partnership, and physical relationship" as Jan K put it, is gone. Now I do all the giving and provide all the support - there is none in return. Companionship is suffocating me - he can't be left alone, and he won't leave me alone. DH is at that stage where he wants to be close to me all the time. He just started this, and I don't know if its because I am going away next week, or whether its another phase, but he is definitely behaving like a needy child, who keeps telling me (twenty times a day) that he loves me in the hopes that I love him back. Afraid to be abandoned. And I just want to run away!
Thanks for the support folks. I have learnt a lot in the last 19 months...patience (never my strong suit) , I try not to push things if he refuses (like taking medication, dressing appropriately, wearing seat belts) but revisit in 1/2 hour. Generally it works after a few tries that is if I haven't forgotten myself!! yesterday however was the day from hell. It was his birthday but he was adamant it wasn't. We had planned to go down the coast for lunch with friends. Never an easy task but F just wouldn't put his trousers on the right way around. I try to be liberal about his self dressing but trousers on the wrong way causes a problem as he can't pee and wets his trousers. Then he gets really distressed. So I said we wouldn't go until he changed and offered to help him. This went on for hours until it was too late to go. I guess I was just angry at missing out on the trip and meeting up with friends who understand and support me. Such is life! I suppose we will not be able to go for these trips for much longer anyway. Julie
Oh Joan, once again you have said it so well. My husband still "loves" me, but when I visit him it is to make sure he is being cared for as a human being. I lost the love for my man a long time ago. and those people who say find the "moments of Joy", yea, where? There was no joy on this journey and for a long time I thought I would never smile or laugh again. fortunately I am healthy enough to go on and find joy on my own. You are the first site I visit when I start my computer.
Jan K, I don't know why people can't see it, either, but it used to drive me crazy. When he was in the early stages, there was just no support, because nobody but me realized something was wrong with him. Part of it was because he was (and is) an unusually handsome man. I think people equate good looks with good health and intelligence??? And the other piece is that people don't want to see it. If they acknowledged our misery (well, mine,really) then they might have to do something to help us. And that would never do. It would interfere with their golf, and their restaurant-going, and their cruises, and their theater-going, and their visits to pleasant resort locations. I lost the whole decade of my 50s to DH's Alzheimers, and it looks like my 60s are going the same way. For an Alzheimers spouse in the "Golden" years, that means emptying the urinal. Ha-ha, joke.
elizabeth, I've often thought that there are two sets of people, each of which is living in a separate universe. One group takes vacations, plays golf, goes to the theater and out to dinner, etc. The other group -- that would be us -- lives in an alternate universe.
I saw my parents, who were retired when my father got sick, move from one universe to the other one. When my husband got sick, I was stilll working (in my own business) and although he was retired, he spent a lot of time helping me. We had always thought that when I was able to wind things down a little, we could take some of the trips that we had been talking about for the last 20 years. That was not to be. Sometimes I think about the people we know who live in the other universe and I marvel that such a world exists.
eckphd, You are so right. There is no joy in this journey. This site is the only place I know of that talks about this subject honestly. I wish I had found it earlier because I would not have felt so alone for the last 7 years.
Myrtle said that " This site is the only place I know of that talks about this subject honestly." That was the basic idea I had for the website. I could find no one who talked about what I was feeling. I thought there was something wrong with me because as my husband's personality changed, so did my feelings towards him. Upon the launch of this website, I soon found out that there were spouses all over the world thinking and feeling exactly as I did. I am honest to a fault in my blogs, but that honesty seems to resonate with readers and help them through their own emotions. I am very grateful for that.
Hi everyone, It has been a while since I opened up this site. My dh passed 3 years ago. The first year I still visited this site and would read the thread for the widowed among us. I would read Joan's blog and some of the humor postings. Eventually, it was all too painful for me and probably kept me from moving on (whatever that is.) So I stopped. That first year I still felt like a caregiver on the Alzheimer journey. I couldn't get the previous 6-8 years out of my psyche. I couldn't recall the "other universe" when we were a happy married couple who enjoyed sex. We had couple friends and we traveled and worked and enjoyed interests. I had trouble recalling married love. It hurt because it didn't just pop up in my memories or in even in mundane tasks spark a special moment. I tried looking at old photos and reading letters and greeting cards. Made me cry in despair. So I got busy with the family and the grandchildren. I went on trips with groups. I hardly ever stayed home for when I was home I was miserable. Then I went back to our college campus for the scholarship awards dinner. A scholarship was established in my husband's name. Here I was, sitting at a table of young people, telling stories to strangers of how my husband and I met on campus, married while I was still a student, and marveling at the changes on campus and in the world (during Viet Nam War and civil rights movement and before computers and cell phones.) Then the memories came flooding back, for weeks the romantic and positive feelings and images washed over me. Slowly, the nightmares and scary events of AD were fading. I still mourn him and miss him. When I read this blog I felt I could have written it myself. Those closest to me know about the bathroom issues, the angry mean person, the physical decline but how do you talk about missing married love? My adult children were there for me and their father. They were concerned for my health and emotional well=being while also being devastated by the disease.We all took turns saying it is not him, it is the disease and try to get through to the next episode or crises, but sharing the loss of married love was something just stuffed down and not talked about. Thank you Joan for sharing this forum and creating the dialogue that we need to get out and speak with each other about.