I felt I did not have much to contribute to this weekend's discussions. Taking the advice of Joan and others I spent a lot of time searching. Maybe it complicated things, but H had a very good weekend and in turn I had positive thoughts; they have turned out to be irrational as the week started.
So, this is part rant and part introspection.
Brief recap: problems started in 1999, H, initial dx MCI in 2006, FTD in 2009, cerebral atropy in 2011, now mixed dementia or back to FTD depending on whose notes are read. First dx, he was still in his 40's.
"Emotional divorce": I read about this and thought in a kind of self satisfied way "Well I emotionally divorced years ago, and for other reasons, so I am ahead of this". But was I? Would I have ever sought this distance if not for these developments?
FOR OTHER REASONS?!
Not: maybe not. I wonder if the emotional distance was caused by those events, so many years ago, that made me realize "partnership" was at least going and then gone and something more sinister, more dangerous, had taken its place. Maybe it was my instinct to survive, although I have not done much with that.
I am emotionally divorced now. I do much better with sadness and pity than I do with anger and resentment.
I see him shuffle like someone many years older than he is with the reasoning of a child; sometimes a bratty one.
Of course I have no magic wand, but I do have this place that will hear and listen to rants and my cries and my screams.
abby - many of us divorced early in this disease - I know I have. But, I also know there will be times when I will have 're-divorce' when I least expect it.
Boy, does this discussion trigger stuff in me. I do love my hubby very much, but our relationship is much more like me taking care of an elderly father now. I'm not at all sexually attracted to him - not for a long time now; I do try to keep him in the loop when making decisions but am finding that becoming difficult because he struggles to understand what I'm telling him and I become frustrated because I have to keep repeating, so I give up. I make all of the decisions and he seems to be fine with it. I'm mostly sad that my very "in-charge", very intelligent husband is no longer. I feel alone and scared of a future with him and a future without him. I can't see myself going to the extremes that many of you have to keep him inside when he wants to go out; I don't like the confrontation with him - I like it when he's happy and not glowering (is that a word??) at me. It's a day by day existence, just trying to survive.
My emotional divorce also began several years...when the nest emptied and I thought it would be my turn again..a couple w/time and attention for each other. Maybe that is when her physical/emotional changes began from the disease..or just the next cycle of life. But the emotional divorce helped me greatly when, still with love in my heart and soul, I began the search for what would be the best future for her and for me. Still married..still in love..she is where she is best cared for and, I, with no sense of how to go about it, will search, without regrets, for a meaningful life for me.
mothert - just remember not all spouses get confrontational or violent. My FIL was a runner but never got upset or violent when caught and taken back, or stopped in the first place.
We just never know what path until the time comes. The good thing is here we hear about the worst but there are many here that have not experienced those worst times.
You are so right...my dh is so sweet and kind right now 95% of the time. It is me that is hanging on by a thread to be sweet and kind also. I am so consumed between wanting this to be over and not wanting to be left alone...I just want to dig a hole and crawl in it.
Oh, yes, it is such a long, unhappy journey we are all on. My dh is very sweet unless I challenge him when he wants to do something, then he can be very difficult. I have to be so diplomatic with him (very un-natural trait for me) and a bit tricky, so most of the time I try very hard to avoid him melting down. Most of the time I just want to be alone; but, just like JudithKB, I dread the day that he will no longer be with me, I don't know how to be without him.
Let's revisit this emotional divorce thing. I'm trying to become more emotionally disconnected as DH gets deeper into this disease. I don't like the word "divorce". I could never divorce him legally, physically, or spiritually but this is certainly not the man I've been married to all these years who worked hard to give me and our children everything we needed or wanted. He was strong, could fix anything and took care of everything. I love the man he was and I love the man he is now but in a much different way. I think it's easier if we can disconnect emotionally but I don't know how. Can anyone help?
Have I got a word for you. It was the Dictionary.com word of the day last week, and comes from Freudian psychology:
de·ca·thect [dee-kuh-THEKT] verb (used with object) to withdraw one's feelings of attachment from (a person, idea, or object), as in anticipation of a future loss: He decathected from her in order to cope with her impending death.
So maybe you need to work on some decathection.
Still, I'm beginning to feel like all of these concepts, emotional divorce, decathecting, are sort of fallacious. I do think there is an extent to which you can compartmentalize your feelings so that MOST of the time you're able to avoid the most painful ones. I think I did that, fairly successfully, during the years when I was caring for Jeff at home, and I thought I'd done the emotional divorce, to an extent. But when I placed him, and as he's declined, it's all flooding back and hitting me whenever it wants to. So sometimes you're just putting it off and you'll have it to deal with later.
No matter what name we give it, I think the basic truth is that we have to develop a separation--a wall--to protect our emotional selves from the devestating effects of these diseases. It is not in anyway denying our love for our spouse, but an armor to protect us from the devestating effects of the disease and the damages it generates. We have to recognize and accept this major change to our relationship and what the prognosis is. I don't think there is any single way to create that armor--for me a lot was compartmentalizing. I also used a lot of the techniques I used raising our daughter. Bottom line---there are some behaviors that are accepted, some only tolerated, and some unacceptable and denied. Distraction, redirection, whatever works to handle it all is on-the-table. And, sometimes, you put them in the hands of a professional and stand outside the door waiting---(daughter's arm had to be set)---because that's what needs to be done.
My experience has been, that "Time" helps greatly in blunting the pain of this. Just as the loss of my father to a Heart Attack--immediate and unexpected---hurt dreadfully, over time we healed and have grown past it; The early hurts associated with DH's Mental Illness are long ago defused and blunted. So too, the ones from his VaD. The hurt of working through the decision to place him is still close but the worst of it is gone.
What I'm finding now, is that in the months from his last episode through hospitalization, Placement and then death, all my strength and armor has faded. I'm left with a wound barely healed--like almost red new skin--fragile, not toughened. I am progressing well in getting through to my After, but am still very vulnerable. Makes it very hard to deal with being around and with my Mom. She has Heart issues and VaD, about as bad as DH was. I have no armor, no walls and it hurts.
What I know, is that the better I accepted and built my protection, the better I was able to do for DH in an upbeat way.
I'm not at all sure this is a good thing, but my way of creating emotional distance as my husband became no longer my husband was to remember the bad things about the relationship, which was always a mixed one. I fell into that because his cognitive impairment was/is mostly in executive function and empathy, so the things that always frustrated me about him got worse. He complained about my not being close with him, but I told him at times that my strength as a caregiver was in practical things, and he was stuck with that. If our roles were reversed he would have tried very hard but been an incompetent caregiver; that thought helped me feel ok about doing a good job practically while separating emotionally.
I can totally relate to the emotional divorce thing. I "divorced" my husband about 2 years ago. Our marriage was not the best, so for me it was not all that foreign for me. I have made the decision to place him provided I find an assisted living which I will. I am thinking positive. I have children but there are just some things that I cannot share with them although they do understand and support my placing him. I have good friends--some of them I met at support groups and some through mutual friends--both male and female. Their support is helping immensely. Ithink with this disease I have had to realize that I really need to be with people who are normal. For me it is the mental stress that was killing me but since Imade my decision to take the financial hit and apply for Medicaid and " move on" I feel much better. I think for me it was the indecision that was killing me.
I agree with the emotional divorce thing too! I thought I had done that a long time ago but I must not have done it right because the things he does to me still bother me so I will just keep working on it. I didn't have a good marriage at all and I have no trouble remembering all the bad things because there are so many of them but I spent so many years trying to "kick a dead horse" and make it work(by myself) which by the way doesn't work. I can't seem to get it out of my head that I can quit trying now!!!
I've thought about this issue a lot of late. I realize that, for practical issues, I am single now. While I am married, I sure don't have a wife, at least not in the way I did for the first 50 years of our marriage. For the first time since I was 15, I am thinking more and more like a single man. This year I built myself a new very small house. It is built for only one person, that is the reality of my life.
How super that is....I am going to down size as soon as possible too. My first choice will be a one-bedroom condo...well two bedrooms but, one will be my sewing room. This is the first time I have been alone since I was 20 which was many moons ago. The days aren't too bad but, the early evening is the worse.
We did a big downsize a year and a half ago, but there is more to do. Before we could sell our house (in another state), it was damaged by a flood and I need to figure a solution. At this age, I don't want to start on a 2 year building project, even if I know how. I'll sell the shell of a house for what I can get and move on. My tiny house is on our daughters property in the country in Washington State. WIfe lives in the house, daughter and I share care of her. It has been a long time since she was diagnosed (14 years). I am tired of it all.
dwgriff--yes, you think like a single man who happens to have an extraordinary obligation. It's a weird place to be. I'd been really thinking hard about the benefits of a tiny house, but December always makes me re-think. Until yesterday I was housing (for Christmas) 3 daughters, 1 son, a boyfriend or two, my brother-in-law, and 1 extra dog. I am 2 minutes away from my husband's ALF, and I know people here. So maybe not right now. I think that for me the thinking process was more about the psychology of making a big change, in the theory that a big change would somehow shake the loneliness of singlehood out of my life. (I know...based on my Christmas crew, I shouldn't be too lonely, should I? Well, they leave.) I'm realizing that a change of housing isn't going to solve my fundamental problem, but gradually increasing my involvement in various ventures will probably help.
Someone said that the loneliest place in the world is among a lot of people. We had the big (relatively) house for the family, but now daughter 1 has the big house that everyone comes to. That is where I live. I spent three summers in Montana in a 14 by 14 Forest Service fire lookout tower. No shower, no plumbing, no electricity, but radios and telephone, lots of windows and wonderful views. I loved it. I am returning to my roots! What will I do when this is over, and that is getting closer? I don't know. So far I have not been allowed to think of any future beyond tomorrow.
I too will not think of the future for awhile, I know that financially I can "hang on" to our home for some time, that I can even hold off going back to work for some time. Of course right now we are in such a flux what with him in the hospital awaiting placement so really cannot plan anyway.
This is the first time ever that I have not thought about the future, about work, and just focused on now. Must be the molding process of life.
dwgriff! One of my most lovely times in life was when I lived for two years in an open garage in Maui, it did have water and a funky outdoor bathroom, but the rent was next to nothing and no yard work or maintenance. It allowed me to do my work, and when the workday was finished, well just do nothing or go swimming or walking or even partying. I am such a tomboy and love the simple life.
Dear Coco, I have been reading your osts about your beloved Dado. My heart aches for you as you travel down this dark unknown journey of Alzheimer . It's not a daily journey, but a moment to moment twist and turn. I have been wanting wrote you and others but currently l am without a computer and I am writing on my phone . I am praying for you and Dado. Lord I hate that we are all members of this board . I am grateful that we have a message boars which Jo created but I regret we are victims too of the heartbreak and sorrow living with strangers who resemble the ones we married . Personally Coco and you other dedicated spouses I don't think I