Today's Blog is about letting go of the relationship you had with your spouse, putting aside your emotional needs, and tending to your spouse on his/her level. I am finding it emotionally heartwrenching, and am having a very difficult time with it. I invite you to read the blog and post your comments here.
I didn't let go all at once. It was more of a drifting away from the partnership that we had before 2003 when she was diagnosed with AD. Every few weeks she would stop doing something and I would have to start doing it. She stopped driving gradually as she lost her sense of directions and within two years, I was doing all the driving. She began having kitchen accidents and spoiling food and I had to become the cook. She stopped doing house work and I had to become the homemaker. We stopped watching Netflix movies when she could no longer follow the story line. It's been a slow downward spiral for the last 5 years. My emotional needs go mostly unmet as I do all of these essential to life things for her and me. Somehow, I stay cheerful and upbeat and not depressed at all. I occupy my mind with hobbies that I can do here at home. For example, today I am rearranging my post card collection concerning my home town for the years 1900 to 1966 into a larger album. That should take a week or two.
I don't really have any "words of wisdom", but I can say that I can sooo relate to what you're saying. We've only been married 10 years (we've certainly gone through a lot in that time!); I'm not sure if that makes it easier or harder to let go than if we'd been married for decades. I know I feel that I haven't had enough time with him "whole". There's a lot more I want to say to and do with the "old" him. I was just thinking earlier today about all the things I miss about him. I do miss having long conversations. He used to call me from his business trips at night, and we'd talk for hours. I miss being able to have meaningful discussions with him about our kids (ages 9, 7 and 2), having him participate in making decisions about them. Lately, I truly feel like a single parent, but I know what you mean about not being able to let go of the old him. When I'm having a hard time with the kids, I still desperately turn to him for help, but I know he can't really help. And then I'm disgusted with myself for needing him so much. This is such an emotional issue for me (I'm tearing up as a write this, and I'm at work. Good thing no one's around me!) I know I've said before that if none of this had happened, there's a good chance that we'd have split up years ago. We had a somewhat rocky marriage. But as heartbreaking as it would have been to have our marriage end, (and maybe have to see him with someone else), he would have been here for the boys. They need their dad so much. I find myself often wondering, if he were as he was before all this, what would he say about this or that? How would the "old" him respond to this situation? I guess it really is like mourning before the person is really gone.
Anyways, I know this was a long response, but it so helps to know others have these emotions too. This message board is such a comfort. Thanks, Joan.
Funny thing. It was a bit by bit thing, like C says. Jeff is more "there" than some of the AD spouses folks here are dealing with, I guess because he's still a pretty solid stage 4. He just left on a five day trip with a friend to Florida. It is a long-time buddy who will be watching out for him and making sure he takes his pills, etc. I always feel a sort of sense of release and freedom, like I could have a chance to become myself again if I were alone. So it looks like I may be more ready to let go than some of you folks, and really, that's not a feeling I particularly admire in myself, but there it is.
Doesn't matter though, I know I will hang in there for however long this story takes to play out. I just feel so stinkin' old. Like I'm living the life of a 76 year old. Which is fine if you're 76*, and I absolutely mean no offense if you are, but I'm 46 and I'll wager there aren't too many 20 year olds who would want to feel stuck in a 46 year old's life either. *You know what...It's not fine whether you're 86 or 96 or 106 either. Who'd want to do this?
But this all sort of relates back to letting go, and the "emotional divorce" and finding things in your life that turn you on WHILE you do the needed work of AD spouse care.
Well, we are in year eleven and you just have to let go...I don't know how to tell you it happens, but for me it did. I am taking care of him at home but I think his time here is playing out. He has contracted pneumonia and, we all know what that means. I have been alone for a long time....3 years while he was in a facility and now three years with him at home. Am I ready...whoever is? But I am ready for him not to be suffering....
We are seven years since diagnosis and quite into stage 6.I think I've "let go" most of the time and have accepted the "child" in my husbands body.But it's difficult. Just moments ago I checked on the stages again as there have been recent changes and some surprises. Our social life is limited as it's just easier to stay home. Even going out to restaurants alone is difficult as there is usully some fuss about something. We won't travel again. Presently we are in Vallarta. It will be our last trip. I think the letting go happens slowly , slowly, lowly.
I think I have let go and then he cracks his knuckles, puts his hand on his cheeck when he sleeps, cocks his head in a familar wasy, etc. all gestures that remind me of the man he was. Then my heart catches in my throat and I am in love again with my man and I know I shall never be able to completely "divorce" myself from the beloved stranger who now inhabits my dear husband's body. Most of the time I can live on the surface of my emotions, able to separate in my mind the man who was and the man who is. I have accepted the fact that I will never on this earth have my dear one I married and lived with for so many years; those days are gone; and I seldom bring them to my consciousness prefering to live in the present with activities not connected to the past. However, sometimes in the early mornings when I can't sleep the emotional import of our diverse paths pounces on me and I am bereft and cry for those days that were and are no more.
I have read all the comments on letting go and I agree it is very difficult to do. I keep telling myself that the women I married and love is still in there and is just lost. We have been fighting AD for a little over 4 years now and I can not remember ever being so tired and so empty inside, but when i look at my wife I always remeber that if the situation were reversed she would be there for me.
I do not think you can ever let go. I think the best you can do is cope with the disease day by day. Emotionally it is a killer, but I wonder how the AD patient really feels inside. If we as spouses are having trouble, can you imagine how they must feel being reduced to someone who is totally dependent on their spouse. I see moments from time to time where my wife will cry and when i ask her what is wrong she will tell me it is a lot. When I push her a little more she is talking about seeing me so tired and worn out. So for now there is a little of her left.
I do not think letting go is the answer. I think you have to continue to love the person and always remember who they were and what they mean to you. Is it easy (Hell No), but we have no choice.
Remember they are in constant mental termoil and it has to be twice the Hell for them.
I will never let go, I will just learn to vary my coping as best I can.
I know what you are all going through. You are not alone, but always remeber how that person loved you.
Thank you for your comments. They made me feel a little better. Maybe I shoud forget about "letting go" , and just deal with him as he is.
Interesting that you mentioned how they must feel. My husband and I were talking about that tonight. I kept saying how hard this is, and he kept saying - "How do you think I feel? It's happening to me."
I have watched my mother and a beloved aunt die of cancer, but honestly, nothing compares to the horror of AD.
We are in the eighth year of this disease and I will have to say that letting go has been the hardest part for me. It has not been until this year that I have started to let go. Like C said, it has been a very gradual thing, in fact I did not realize I had begun to let go until just now. At first I would cry when I went anywhere and he was not with me, then little by little it happened, I don't know when but it happened. I now look at him as my child, one that I look out for and protect, I realize I am now all alone. Like carewife, I do still look at him at times and see the dear sweet Jim that I married, I guess that will always happen from time to time. I would expect it is like a death, you never forget but you do move on, it is called survival.
Sandi, I am so sorry to hear your husband has the pneumonia. Is it aspiration pneumonia or bacterial? Have you called Hospice in. My thoughts and my prayers are with you right now.
I know this is hard to hear but it would be a blessing if he goes on, it is so sad to see him have to live this way. Do you choose to treat it or how are you going to handle it? I wonder what to do when and if this time comes for us. My heart says treat it and my logic says do not. We are in stage 7 and who wants to bring a person back to a life when they have no quality life at all. Sometimes I think we need to just let God take control and not try to control everything ourselves.
I want you to know you have been such an inspiriation to all of us! You have willingly shared all that you have been through and YOU ARE MY HERO! I think of you often while I am caring for my DH who was just told by the neurologist that he has Lewy Body Dementia with AD. I'm sure this will complicate the journey even more for me. You are in my prayers as you face this new challenge. Take care and keep us posted.
Oh gee....I sure am not a hero..but thank you. The Home Health nurse thinks it is aspiration pneumonia and we made the decision not to treat, but that being said, when the nurse revisited yesterday my husband was doing much better. The temp and respirations were better and the crackles in his lungs are gone. That is not to say that he is out of the woods, but he again seems to have improved. Who knows, it could go either way, but at the moment things are a lot better.
Comment Author dbertol CommentTime 1 hour ago edit delete Joang:
Try to accept your spouse for what he is and never let go of what he was. To often we think about what is going on at any given moment and put aside that this is the person that loved you with all their heart.
In my case we have had a wonderful life together, brought up four children, have 8 grandchildren and all of this is a part of my wife and my love for each other.
How can you let go of that. I try to keep my sanity by thinking of all the wonderful things that came from our love. Is AD fair? No it is not, but as my children say to me " It is what it is". ( Boy I hate that when I hear it, because it is true" )
My wife always during hard times would always say to me " There are no Gaurentees" and she was right. I do what I do everyday, because of my love for her and the love she had for me. It is not easy many times and I have days when I feel I can not go on like this much longer, but the days turn into weeks and then months and you realize you can.
Always remember they would do it for you.
I feel sorry for myself a lot and I suppose we have that right as long as you do not drown in self pitty. Remember they are the ones that are suffering from this terrible disease they did not ask for, deserve or want.
I do not know what the secret of getting through this is, but I do know I will be there for her when I am needed. (24/7).
I am blessed with a daughter that helps me out and gives me every Friday to get out and be with friends. M daughter is a big part of getting me through this battle and she is married to a man that supports her as well. Get yourself a break so that you keep reality in focus and gather new strength to get through another day.
I'm new to this group and I really needed this today. My wife, of 54 years, is in stage 5-6. I can't find anything for her to do on her own, so if I am doing something else, such as typing this message, she is sitting in a nearby chair, either sleeping, muttering to herself, or picking at her hands. I wish I had nearby children, but the closest is a 6 hour drive away and the other 2 are half-way, and all the way across the country. I have gone through the stages mentioned by "C" - driving , cooking, housework. I now have to pick her clothes, and sometimes help her get dressed. The only way I can get her to take a shower is to go in the shower with her. At least at the moment she seems to enjoy watching movies or TV. We are planning to go to a Gilbert and Sullivan play in a couple of weeks. She has been a G&S fan all her life. I try to get time off for some of the things that I enjoy doing, but she resents having "a baby sitter". When I start to get too discouraged, I remember our wedding vows -"in sickness and in health, for better or for worse". This certainly qualifies as "worse". I also try to remember her as she was by looking at pictures of all the trips we have taken. Sometimes I am asked by a local group to show one of the slide shows of trips, so this gives me a good chance to bring back the past. I want my memory of her to be as she was, not as she is now.
My husband is still able to know what is happening to him. We had the discussion the other night about all I have written, and we both agreed that this is the worst "worse" we can think of. For both of us.
My daughter often said, Mom, you're living in limbo. She was right and I'd think about 'moving on' or 'letting go.' I knew people personally who had significant others while their spouses had AD and, of course, the spouse did not know and I did not think they were being unfaithful, they still were hands-on caregivers to their spouse. I'm not sure they ever entirely 'let go.' It wasn't so much that I tried to 'let go' it was more that my DH moved further and further away from me as time went on and I was left standing there alone. Other than memories, there wasn't anything viable left to hold on to. And he had been my rock.
Now I have definitely moved one, not necessarily by choice, but Nature leads you that way, like it or not. Other people, other events come into your life, new memories and relationships come along and your old way of life drifts away--you have no choice. My memory of what you are going thru makes me understand how hard it is when you're still in it. And, four years after his death, I still think of him--I live in the same house, I haven't changed anything, but Nature continues to pull me away. I have a good life, I'm content. Objectively I know that's healthy, it would not be in anyone's best interest to sit in a dark room to cry and mourn endlessly. So I don't think you can consciously let go anymore than you could let go of your right hand, it just comes about and that's probably the way it should be. When the time comes, you adjust, you do new things, you move on.
Joang, Bettyhere said it so well. Letting go is not something you plan and do, it just happens. You don't think to yourself, "I am going to let go." It is a natural course of life. It is gradual just like the disease is gradual. Hope I am making some sense to you.
This is a topic for a lot of soul searching. If we could roll up all these posts into one it would be the big answer to this one question. i also agree its a little by little over the 11yrs in my case. not really letting go, but seeing thru the shell to the person i loved and admired. i have read this disease causes us caregivers to go thru whats basically mourning of a living person right from the onset of diagnosis and although the physical form is still present the emotional foundation disappears and theres nothing we can do to control it. my worst times are when hes sleeping inthe bed next to me- quiet and at peace and i wonder whats going really on in his world. when i see those sandals 'couples only resorts' commercials and it hits home that i will never have that enjoyment or romantic times again with him i always sink into despair for a while. I still desperately love who he is and what he was, but not what he's become. resignation and determination to try to get thru it without losing myself along with him is the only thing i can say at this point -Divvi
I guess I have begun to let go in a way. Our marriage has changed to a new type of relationship and I have had to let go of the partnership we once had. It is a form or mourning with all the steps to go through. I have begun to accept or resign myself to this situation. It happens with time. I am still angry and sad but I've learned to cope and with the help of an antidepressant, I can function without tears always at the surface. I was so miserable and always choking back tears. Though I am not a religious person, I am trying to live the serenity prayer. We have to find a way to go on without being destroyed ourselves.
You said it so well - "find a way to go on without being destroyed ourselves". I am angry, sad, and lonely, all at the same time - I don't want to let go - I want my husband back the way he was, but I know that is not in the cards, and I have to find a way to deal with it. It stinks!
I have a lot of questions and not very many answers. How did I get here, at this point in my life? What am I going to do? What is going to happen to Bryan and I? And how fast is it going to happen? Got very few answers. And really I try not to focus on the questions for too long...I really think they are for God to answer, not me. Maybe a good life is about asking all the right questions. What can I do to make this better? How can I help Bryan enjoy what is left of his life? What can I do for myself to help me keep my sanity?
The letting go is so painful. Especially when I think of how upset my old Bryan would be to see what has become of him. I'm just trying to do the best I can...one day at a time.
Someone once asked me how I was able to deal with my husband's AD. I replied that I had realized that to keep my sanity, my concept of self, I had begun to lead a parallel life. I found new friends and activities that I enjoyed. At one point, I even had a brush with romance. It was just enough for me to know I could still have those wonderful feelings again. When you have a parallel life, it makes it much easier to let go of the relationship with the person my DH no longer is.
You are asking question that don't have any definitive answers. Some people will say this or that, but with AD there are no right or wrong answers. Except for a few meds that help a few people sometimes, not much is going to make this better. You can help Bryan and yourself enjoy what you have of your lives by being as loving as possible--and that's not always easy. You have said that you are trying to do the best that you can, so it is well to remember that 'when the best you can do is the best you can do, then the best you can do is enough.' Knowing that you can't do more will help you keep your sanity. And one day at a time is good--one problem at a time. As each challenge comes along, do the best you can to resolve it--don't borrow trouble from the future. I know that the pain is all but beyond bearing, no way to minimize that. But if you take care of yourself as well as Bryan, you will be OK. You may not see that now, but I promise you, if you don't neglect yourself, live by the serenity prayer, you will eventually be OK, really you will.
Bebe--you have expressed how I am trying to live. Very well. Not that I'm eligible for a brush with romance, but sometimes just thinking about it helps me realize that my capacity to have good feelings is still there. Maybe some time.
Thanks ladies...you make me feel a little less alone in all of this. Betty, I'm going to trust you that I will be OK. I have a lot of moments of being okay, I just get a little overwhelmed at times. I do have a parallel life, with my job and my family and my friends. And it's very helpful. But sometimes I feel guilty that I am the one that is healthy and moving forward while Bryan is fading away. Do you know what I mean? I know guilt is a wasted emotion, but sometimes it gets to me.
Shoegirl: I guess it depends on how things turn out to say they will be OK. In my case--and I believe most--my life as I knew it for 53 yrs slowly vanished. I still had my children, siblings, etc, I did not have a parallel life, altho I did before DH got sick, but it is all different now. I remember yelling at the air 'just give me back my life.' So that never came back--I knew that--but what it would be in the future I could not see at the time. But things changed, things I had no control over. My married son moved down the block from me--that was a big change. My French g'son, a young teen-ager thru my DH AD, is now a 23 y.o. college graduate and has come to live here--another big change. I live in the same house w/empty bedroom, so now I rent them out to male students from a nearby university--a really big change. I joined the senior ctr & stretch a few days/wk. My daughter brought me her cat (and I am a real dog person) and I decided I would take the time to learn about and appreciate cats & see how I could get it and my big dog to live together. They are doing quite well, it's a real education and fun to watch. These changes are all low-key, but I'm a low-key person so they work for me.
While my DH was alive, I met a man whose wife also had AD and he bluntly, but nicely said he'd like to have an affair w/me, and asked if I'd feel guilty. I didn't think that was a possibility with him, and it did not come to pass. But--if we are being honest about it--I very much appreciate the male/female dynamic. I think a lot depends on how you view sex and marriage, when my mother was widowed she pretty much shunned men from then on, altho she had opportunities. So I knew I would be more receptive than she was, and it wasn't that I didn't adore my DH from the start, & always faithful. But I do like men, viva le differance! It's still there, and now I have that w/someone, too. There won't be any marriage, no living together, but another big change I didn't see coming. And that's how things turned out, so far, to be OK. Nothing really major but completely opposite from what my life had been w/my beloved, dear, dear husband. Life just goes on, others move in and out, stuff happens. I think a key is to be receptive, to finally understand that you won't get your life back that you spent so many years building together, but good things are still out there. It's too bad that we all have to go thru this AD crap, but the way things are now, I can honestly say that you'll be OK.
As a man I think the hardest thing for me is that I miss the intimacy my wife and I always shared. That has been gone for a long time now. I am a romantic at heart and that is gone now and has left a void in my heart that can not be filled.
As you are well aware living with an AD spouse is a very lonley existance and the loneliness gets to be overwhelming sometimes.
I have not found a way around it and probably never will. I have never cheated on my wife and even if at this time wanted to I would not have the time.
I have a wonderful daughter that gives me some time for myself every week, but she has 2 youg children and a very busy life. I try not to ask for to much from her even though I know she is there for me.
I think what it all boils down to is there is no easy way to live with this terrible disease and all you can do is hope that you survive it and continue to provide care to your spouse while doing it.
You seem to have come through it and I can only hope that I can as well.
I hope your future is bright and you can live with the knowledge that you were there for your husband through it all. I hope you are right about there being good things still out there and if they are out there I hope I make it.
dbertol: I truly miss the intimacy with my DW. Not just the sex, but, the cuddling, hugging, kissing and holding hands. I too have never been unfaithful and will never be, but, she pulled away from all of this gradually and one step at a time before we had a dx. I knew something was wrong a long time before we got a confirmation from the dr.
She had stopped wanting to have sex and had more reasons not to than you can ever imagine. Consequently, it stopped too. I didn't like it, but, that the way it was so I accepted it.
She is now a solid stage 5, and the other day out of the blue, she asked me in a very nice way if I would like to have sex. No hand holding, hugging or kissing. Just a matter of fact (nicely) question. I have no idea (but would like to know) where this came from.
To be truthful, it scared me. I don't know why it scared me, and it hasn't happened yet. In fact, I'm sure she has forgotten all about it. Needless to say I thought it was a good idea and a momentary buzz, but, do AZ patients think about these kind of things? This was a first at our house. Maybe it won't be the last (ha).
PS She is 73 and I am 75 and it's ok for you to laugh at us.
But, But, But: Does anybody have any idea where this came from. There hasn't even been anything that we used to call 'suggestive' at our house. I guess I was so surprised and now I am just curious.
Oh Well, tomorrow will bring on something else just as baffling.
"Till death do us part"? Was that brain or body? 53 years later I don't remember that part. He is in a facility and his clothes are still in the closet because he might need them. He tells me he loves me and misses me and he tells every caregiver on every shift the same thing. I really feel special!! Why I am keeping his clothes? After 13 years, why can't I accept reality? Tomorrow isn't baffling, it is only worse.
Because you are still in limbo - you are not married and not widowed. It is not in you at this moment to walk away from him, no matter what he says to others.
As for his clothes - how about taking them to the facility he is in? They can always use clothes,, especially if they are easy to get on and off.
DeiS I join you in limbo-very strange existance isn't it? I mostly hang out with widows-more comfortable than being odd person out with former friend couples
dean, no, I don't know where it came from. But it happens.
There are ads on TV that mention sex. There are programs on TV that mention sex. She may or may not even know what the word means. Or some connection that used to be there might have reconnected for a day or two.
My mantra with this stuff has become "it is what it is."
Like so many things, a desire for intimacy seems to come and go in stages. DH has had periods where he didn't like me touching him and it was a big triumph to get him in the bathtub with me and wash his back. Now just lately (maybe it's the Risperidone, but I think it started before that) he likes to hold me close and cuddle in bed in the morning. I love it. But I know it won't last.