As promised, I have written a blog about my first therapy session. I invite you to log onto the home page - www.thealzheimerspouse.com - and read it. I have written it in the hope that it will help some of you who are struggling with the same issues as I am. You may completely disagree with my therapist, and have a different idea that worked for you. All respectful differing opinions are welcome.
Some weeks back, I started reading "widow" books, and I finally realized that what I was dealing with emotionally was not depression as much as it was grief. Overwhelming grief. It helped me so much to read those books, because I feel like they finally got me started in the right direction. Even though there is still a man in my house, he's not the man I used to be married to. And I have to start seriously mourning that loss, because like you said, hiding those painful feelings or ignoring them is not working any more.
It seems like we are hard on ourselves when we are feeling down, and say that we are having a "pity party". No—we are grieving. (And if we ever want to feel a little self-pity, that's fine, too. One of the books said that's our heart's way of taking a break from the grieving and letting ourselves come to grips with things.) There is so much grief in this whole process that's it's amazing anybody comes out of it on the other end.
There are all kinds of grief support groups at our local hospital, but none for spouses of people with dementia. It seems like we're not officially "allowed" to grieve until after the death of our other half, although there are a million small losses before then. I think that that being a caregiver of an Alzheimer spouse is like a death by a thousand cuts. A lay minister I shared that idea with thought it was so appropriate that she has shared it with a number of other people. It's a gruesome description, but being a caregiver can get pretty gruesome, too.
Right now I'm reading these books in lieu of therapy, because it's so hard to get away to go. One of the books made me think—for the first time in the almost ten years since diagnosis—that I might be able to live through this. I hope that your therapy does that for you—makes you believe that you can manage to live through this. More, I hope that therapy helps you to live through it and be well. You deserve it.
Since you asked, Joan, I will say that I disagree with your therapist. I never thought that Eric wasn't there. He was, and that was the part I connected with always and until his death. And I still connect with him even though in a different way because he remains in my heart and mind. I can't imagine how I would feel if I had, or now, believed he wasn't there. I believe that there's more mystery to life and death than the therapist's viewpoint.
Yes, Mary and Vickie - There are many like you on this board who feel that their spouses are here in whatever way, however different. And there are those of us who feel they are gone. We, as Alzheimer Spouses have much in common, but we also see things differently, and it is all the differing opinions and methods of coping that help us all.
My first thought was to say he is still there. But really if I am honest with myself he is not.
DH no longer knows who I am, that we were married, that he loves me. The last time I said I love you he said "thank you". I am just the caregiver, the nice person, the lady who use to deliver our paper. No more, no less. I care for him because that is what I am bound to do. We married till death do us part. And by all that is good in me I will see this to the end. I am strong on the outside, but just under the skin I am a mass of blubbering jello. My heart is broken into dust. All for the man that was, who is no more.
The man I knew is long gone, found out last week DH went to the moon, flew with Chuck Yeager, and played with Johnny Cash. Who knew. MY husband never did any of that..........
Joan, my husband of 53 years died on Valentine's day this year. Through all the years of Alzheimer 's I never thought he wasn't there, he was different from the man I vowed to love for better or worse, in sickness and health but he was the man I fell in love with all those years ago. I believe it would have been so much harder if I did not feel this way.
As we have always said on these boards, we are all different in how we cope with this horror called Alzheimer's.
I'm almost ashamed to say it, but I think I have already emotionally divorced my husband. Like Joan's, my husband tells me he loves me almost every day and he says he's sorry I have to do things for him he's always been able to do for himself. I love him very much as well, but not at all the way I used to. I love him, I feel sad for him, and I HATE having to watch him go through what he's going through. He was always so intelligent, reliable, someone everyone could count on to help them with whatever they needed from him, but that isn't him anymore. He can dress himself but he doesn't know how to put the carton of juice back in the refrigerator. He can go to the bathroom by himself but he can't wash a dish. He doesn't know how to turn the gas range on (thank God) but he can get the mail. On and on, as you all know.
This isn't the man I married, but I love him. Love for the man I married but not the married kind of love. Does that make sense?
I have a mixed bags of feelings and thoughts. I believe my husband is there but not the same man I married and lived with all these years. I do everything for him-clothe, bath, all activities of daily living. He may feed himself although he may use a spoon to eat chips. I, too, don't know what to do with my feelings. I love him but not the same way I once loved him. He says he loves me all the time. I see him cry occasionally for all he feels he is putting me thru. I cry too. Sometimes I feel I want to continue caring for him and other days I feel he would be better off in a home. Then I feel bad because of those thoughts because he isn't dead and want him home. So the cycle goes. He is there but yet he is gone. I feel like I am dying right along side of him. Right this minute I think we both would be better off with a new life- he in a home where he can be with individuals like him and me starting a life without him physically with me. I love him so more than likely will be with him all day in his new home; so I might as well keep him home!! See I told you I don 't know what to do with my feelings.
PS I am having trouble making decisions in my life does anyone else having these issues? This is new and is creating anxiety.
Joan, that is what my neurologist/shrink told me....he said straight out " Your life is not over, his is"...and explained it the same way. Only I think you are ahead of me in that you are seeking advice on how to contend with the grief of right now and my doctor indicates that apart from my anxiety, I have not accepted that his life is over...and I know it is as it was...we can't do things we used to do...I don't know..but your comments here have given me more to think about and bring up with my therapist... For now, the emphasis has been on learning to relax and notice how the medication is helping me calm down so I can deal with what comes next...
Sounds like your therapist knows what she's talking about. I knew My husband was gone years before he passed. Though occasionally there was a flicker of recognition. His eyes would look clearly into mine and he would smile. I remember those moments and treasure them, even if they are all in my mind. Now I have happy photos all over the house. On my fridge is a picture from a trip to Key west. Too long at Sloppy Joes. We have a wonderful glo and huge smiles. Makes me happy to remember the old us. Stick with it Joan, it will be a big help.
I completely agree with your therapist Joan. I have been seeing a psychologist for months and honestly she is a life line. I thought I was depressed and she said I am drowning in grief which she considers natural considering all the losses that go along with this terrible disease. She sent me away with homework recently asking me to list all my losses. Now there is a telling exercise. The losses involve so many complex layers and keep evolving.
My husband has been gone for a long time. His physical presence is still here off course however like you said Joan I visit a boy. My husband has been in care now for over a year, and I would say the quality of both of our lives is better. Better is such a subjective term and I feel I am surviving and that is all. This site is another life line for me and I so appreciate the diversity of opinions on each topic. That is a sure sign of a trusting group.
I know there is a stigma in society of seeking professional mental and emotional support however doing so for me is a step in the right direction of trying to gain again some sense of health and well being. We all run the risk of being taken down with this disease so to do whatever we can to fill our cups so to speak is important.
Joan, Thank you for posting this. You have had me thinking so hard on this one. I feel like the past three plus years have messed with my head so much. But now I see that I am normal (no laughing please).
I want to wear my ring, to remind myself why I am doing what I am doing. And for what was. But on the other hand ;) I feel almost nothing of what was. Then with what you and the others have said. I realized that I have gone through most of the grieving process. Only I did not know I had. I do cry a tear now and again. For what has been lost. But mostly now I think of what I will do with my life after. I have for the most part moved emotionally to after. DH is still here in body but not in any other way. We no longer have any kind of connection. Other than I am his security blanket. He will not let me hold his hand or hug him. Not all have had this happen to them so my case is different in that respect.
It is what it is and I am trying to do the best with what is in the here and now. I want my DH happy and comfortable and my time will come later.
Joan, yes, thank you so much for sharing this very personal thread. What a revealing road this is.
Dado is so different, and yet so the same, with many of the symptoms. Yes, he is like a little boy. But though he is so physically bad, cannot walk more than two steps, his right side shakes sometimes uncontrollably, somehow it seems that he knows what is going on, though he cannot speak. He never asks for anything, just sits quietly and sometimes cries. I too have had people tell me, he is not who he was, and you have to separate yourself.
Perhaps if he was mean, or like some of your mates talking about things that never happened, I would feel differently. Sometimes I swear he has his "own" disease, so much the when you have seen one, you have seen one.
So, though I had in my past been the wild silly one, until we got together in 2001, it seems I am a different person than I knew. AT THIS POINT, I just cannot, think of him other than my husband, still in the married sense. Now, this could be blinders on my part, of maybe even a bit of a martyr. And he is not even at home anymore, which is even more of a separation.
I do agree with so much of what the therapist said. But in my gut, I think unless that person has taken care of an Az spouse, they cannot really know.
We need to do what will keep each one of us SANE, and HEALTHY, and our mates would want that for us on the most part. How my heart supports each and every one of you on this journey.
I understand the trouble making decisions. I have the same problem. I call it "decision paralysis." So unlike me, too. I think it's because I just don't care anymore about simple things - I'm too concerned about more important things like DH's driving, protecting my teenage son from the worst of this, etc.
But, I don't let the indecision cause me anxiety. I figure, if I can't decide then it must not be that important. If I decide and make the wrong decision - oh, well. I recently stripped wallpaper from my kitchen and just could not decide on a paint color, but the painters were coming, so I told them to just use the paint color from the adjoining family room. Big mistake - turns out it does not look so good with the kitchen cabinets and counter tops. Oh well....someday I'll make a decision and repaint it...but hey! - the world is still spinning on it's axis even with my ugly kitchen walls :)
I also gain some prespective from pretending I am 10 years in the future and asking myself if my decision today is going to matter at all to me then. Usually the answer is no.
Dear Joan I read the blog you wrote about going to the therapist and discussing the how to go on even though Sid is still alive. as you know and may even remember this was a similar journey for me a few years back. My Jan passed in Sept 2011. Even though she knew who I was, her awareness was at a low and sometimes non-existent for a long time prior. Every day she told me she loved me and was happy I was there for her but in her mind she was at a loss. Memories were mine and carried little or no meaning for her anymore. Now a year and a half later I find that those same memories we shared have faded even for me and I have moved on with my life. Partly cause I know in my heart that is what would make her the happiest and partly if I was going to to enjoy the rest of my life without her presence I must put the past in the past. Maybe that sounds cruel for someone who professed to love another for over 50 years of their life but for the living to return to any kind of normal life it is a must. Death is final and alzheimers is death even though the spouse is still alive they are in fact brain dead. I realize the care must continue but to think of them in the way you did prior to the illness is fatal for the caregiver. As a caregiver you become more of a nurse than spouse and in order to survive you have to separate your emotional connection from your nurse connection. It is very difficult and for women it may be harder than for men but I can only speak from my own experience. I know that women can separate the two because most nurses are women. The therapist is right on with the advice and I am sure that in your heart you knew that before you went. God can help because as you focus on Him you realize that as the Bible speaks about eternal life after physical death it gives you something new to grasp hold of and lessens the severity of the loss of a loved one. I pray for all who struggle here and ask for help for them to cope and I know in my heart that if you allow Him to He will change your outlook for your future.
For me, the term "emotional divorce" is loaded with negativity and something I can't wrap my brain around. Perhaps because Steve's disease progression has been relatively slow--almost 8 years now from dx--I have had time to grieve and mourn the loss of the man I married. Now I see him as the little boy I never had (it helps that he still recognizes me and is affectionate). I know when I lose him, I will again mourn the boy, but for now I am trying to focus on this opportunity to "know" him as a child.
They're both here and not here. My wife is still here but the personality I fell in love with and that I shared my life with is not. She can't walk let alone speak or think. This is my time to move towards accepting that and I suppose each of us has a different interpretation of what accepting means. I'm accepting that she is gone because she soon will be and I'm taking care of her. But this acceptance must come and it comes to each in their own way.
My wife would agree if she could and if I was in her state so would I. Survive this. I want you to be happy again. The only way is to accept somewhere that they are gone and go on.
I think Bruce was probably right in saying that it may be harder for women than for men to accept the reality that the spouse is gone, while still physically present. And I guess women may also be more inclined to turn to a therapist for help and advice on how to deal with the impending loss -- they are more used to sharing how they feel about things.
As for "emotionally divorcing" a spouse, I don't consider that I ever felt that I was emotionally divorcing my DW -- I just accepted the certainty of her impending death, as little as I liked that fact, and the engineer in me started looking at "where do I go from here". I knew that I wouldn't want to live my life alone after her death, nor would she want or expect me to, so in the months before her death I started working the problem by spending time with a short list of women that I thought I might be able to be "happy" with. Not happy in the sense that I had been happy with my DW -- that wouldn't be a realistic expectation -- but happy enough for present purposes.
I know that fewer women than men seem interested in the possibility of remarriage, but I do think that they might advantageously at least start "working the problem" of what they want to do with the rest of their life before their spouse is physically gone.
giving ourselves permission to be alive while living this disease is the question. i dont think anyone here would disagree that our spouses if they could tell us, would deny us the right to live a wholesome happy life where possible, even while subjected to caregiving. the issues lie within ourselves that negate the ability to comprehend that its not our fault we are unable to overcome the final outcome. somehow we can falsely feel we have a hand in their demise due to the fact its incurable and we are unable to overcome the obsticles of 'love will cure all'. no matter how little or much we love them its not going to happen. its a very hard pill to swallow. divvi
How can there be anything negative in saying you have emotionally divorced your spouse, a spouse who has dementia? To me, being “emotionally divorced” means that I don’t expect him to be emotionally invested in me the way he used to be when we were “romantically” attached. Because I don’t expect him to fulfill MY emotional needs I can take care of him without expecting anything in return. That way I won’t get angry or hurt if he doesn’t, or can’t, react the way I would like him to or the way he used to. I still love him and always will.
I know the words “emotionally divorced” may sound rather harsh to some people. But I think that’s the way I need to feel in order to go on with this kind of life I was given. Perhaps it’s the only way I can take care of someone who needs me to do very personal things for him, things he never, and I never, thought I would have to do. Oh sure, we do things like that for our spouse when they have surgery or they’re sick, but this kind of sickness is so different. They are slowly becoming like our children once were. How can they be expected to fulfill our emotional needs? So, that’s why I’ve said to myself I have to do this for my sanity and so I can go on, God only knows how many years, taking care of him the best way possible. I still love him, but in a very different way. Surely, all of you know this is true. The love just isn’t the same as it once was.
Perhaps this is what Joan needs to do so she doesn’t keep wishing for life to be the way it once was. I know that is impossible. I have always known that, right from the day of diagnosis. Who of us, though, doesn’t long for those days, but surely we know we can’t have what’s impossible for us to have again.
After I read what Marilyn wrote I was a little upset, so I went on the computer and found this article that suggested that emotionally divorcing a spouse with dementia can be very helpful for the caregiver. Please give it a look and let me know what you think. It’s from the American Society on Aging.
Bev, I went to that website and read some of it, and will finish it , it is very well written.
Yes I think many of us have had a chord struck on this thread. I like how divvi said, that we need to be able to comprehend that it is NOT OUR FAULT. And we go through this trying to do the RIGHT THING. I find myself reading what others are doing here, the struggles and rewards of taking care of their mates, and stupidly, I feel GUILTY. Though I know, I did the right thing, had no choice, I still have the guilt popping up.
And I speak for me, and I bet some others, that not only do we still feel guilt, even knowing our mate would want the best for us, also- that we are so fresh in to this our heads are spinning; will it be so different a year from now?
I ache for Joan, and for all that hurt, though they try to do what is right. I don't know Bev, but I just want you to know, we care.
We are all unique individuals with different feelings and we will each cut our own path in this journey. None is right or wrong, better or worse, it is simply what works for you. It is so easy to take the written word the wrong way. Bev I am sorry you were upset, but I do not believe Marilyn meant anything bad or directed to you. We just each feel differently and this is a safe place where all views are accepted and we support each other.
I mean no disrespect to anyone when I disagree with someone, or when I don't feel the same way. It is just how I personally feel. I have been the one for years rebelling against the emotional divorce. I know for some it has been your life line! For me, I couldn't do it, nor do I want to. Just the word divorce does have negative implications, and I do believe that is all Marilyn meant by that.
Nikki, I didn't mean to imply I was upset with Marilyn or anyone else on this site. I just didn't see anything negative in those words and I wanted to be sure I was using them correctly. This site has meant the world to me and has helped me in more ways than I can say. You are right. We all have our own opinions and are entitled to them and should feel free to say whatever we want.
I read the article, don't wholly agree. I think he makes it sound too sterile, too factual, too easy. Yes, he gives the clear cut reasons why it's necessary, how the disease destroys our couple emotional connections, (we all know that), but knowing the reasons intellectually is one thing, doing it emotionally is quite another. I wonder if he's ever been in that position, it's too pedantic. As so often stated, what works for one may not work for others. Each has to go their own way, if it works, great blessings, and if it doesn't, that's a valid choice too and more great blessings. Whatever makes one feel comfortable.
I think the emotional divorce needs the right ground work to happen??? Myself we had a good marriage early on. Then meanness moved in. DH became sort of distant and hateful to me the last 10 or so years before his dx. Once we had the dx I then understood why he was acting the way he had been. Those 10 years we grew apart. I was already on the path to an emotional divorce. And then after the dx things changed so much. I am not sure when he forgot who I was, but it was very soon after. Our connection had been broken for a long time.
Had I had a marriage like Joan's. I think it would have been much harder to come to terms with what was going on. An emotional divorcee would have been all but impossible.
Thank you all for sharing on this topic. I recently commented to my daughter "the man I married is gone" and she agreed that her dad is gone. It doesn't take away the sadness to admit this, but it does help me to focus on how I need to react to his illness and behavior problems. This past weekend I had the opportunity to meet with a dear friend whose job is to deal with caregivers and seniors who need placement. It was the very first time I had received advice from anyone and it really helped my perspective. Her main message was - he will NOT get any better... he will get WORSE... and that I need to take care of myself and focus on what my life will be in the future. I do not believe this is selfish. My children and grandchild need me too and need a healthy me long after my husband - their dad and grandfather - can no longer be a part of their lives.
Joan, I just read your blog, I could almost feel your pain. I am so sorry for what I know you are going through ((hugs))
If it is any help, I wanted to let you know it is possible to mourn the loss of your marriage and the man you married, without emotionally divorcing them, AND still holding on to the love. I know it can be done because I have lived through the process. It was indeed painful, and I believe it comes to a critical point quicker when one has to place their spouse. After placing Lynn I did mourn him, us, much as I would have had he died.
It was extremely difficult and almost completely broke me. Though I do truly know the man I married is gone, I also deeply believe, and know, that part of him is still with me. When you lose so much of them, the little things become so very important. When Lynn smiles When he laughs out loud That twinkle in his eyes When he puckers up for a kiss Reaches out for a hug When rarely he says my name, it makes my heart melt... These things and so many more...
It took me almost two years to work through the grief. It was holding onto the little glimpses of him that helped me hold on through the unbearable grief. It is possible to work through the pain, without letting go of the love you had, and allowing yourself to feel the newer, different love you feel for them now.
I readily accept this might not work for anyone else, but it has been a blessing for me. Lynn is late stage, I truly thought it would be the death of me. But it turns out I am at peace for the first time in our journey. I know I will lose him, but I intend to cherish him and make the most of the time I have left with him.
Joan, I pray you too can find peace in your heart ((hugs))
I also wanted to add, only when I stopped fighting the impossible battle of trying to bring him back to my world... and instead went to join him in "his world", did I find inner peace.
Bev- I'm so sorry I upset you. Yes, I was speaking strictly for myself--both Steve and I had early first (young and stupid) marriages that ended in divorce. Perhaps that's why it's such a negative term for me. Like someone else said, he and I had a dream marriage--like Joan and Sid's--and I am still emotionally attached to him, but as my child now. I think it's all semantics--of course, I have changed my expectations of the role that he plays in my life. He is no longer my partner, clearly, but will always be the love of my life. I believe that my feelings towards Steve echo Nikki's about Lynn.
I think, however, there was a big omission in the article. Yes, it is important to get support--i.e., from others in a support group. And yes, it is good to become more emotionally independent. But what about entering into a new relationship and deriving emotional support from that person? I know it's not an alternative that everyone is interested in, but for those that are, it can be a wonderful help and a big step towards having a normal life again.