I might have cultivated a Board reputation for being a little bit not-compassionate. And it is not without cause. I had two decades of a relationship that was really extraordinary, and when (7-8 years ago) it began to dissolve due to the effects of AD with which we're all familiar, a coping technique for me was emotional distancing.
Thing is, I didn't display the emotional distancing in my way of treating Jeff so I don't think he's suffered neglect in any way. It was just a psychological device. He has always had my every consideration, in practice.
As we know, one of the worst things we have to cope with as AD spouses is meeting the increasing needs of our ill spouse while suffering ourselves from the heartache and deprivation of a relationship that has slipped away. It is normal that we look around at other guys/gals, or cast envious glances at what appear to be happy couples, because an essential vitamin we'd come to rely on has been removed from our emotional food supply, and we're hurting for the lack.
I've recently become aware that that gnawing need for a relationship has dissipated. The romantic thing, I mean. (We all need intelligent conversation...that always remains a need we have to meet some way.)
Anyway, it's nice. I feel better. I still have an AD husband to care for, but I'm finding that my general state of emotional well-being is greatly improved and I can be a caring caregiver without "faking it" anymore. I mean, there was kind of an act involved when I had to work around the pain without showing it, but now I'm just fairly self-content as a solo person who happens to have the job of caring for a nice guy.
This is not to say that I will cruise through effortlessly when the caregiving becomes more labor-intensive, because that's impossible. But it's a nice change not to be hurting for lack of a partner. It just sort of happened with time.
emily, I so want to get to the point that you are at. The way it sounds there is still hope for me yet that I will be free of than nagging pain of not having a husband like(what seems to be everyone else) those young couples just starting out in life.
Em-very powerful post. I remember grieving deeply as my husband slowly drifted away. Like you I came to the realization that there was nothing I could do to stop the train. It was time to suck it up and get on with it. My thinking is-once you just give in an accept what you can not change ou stop wasting needed energy. That does not imply that you have to like it. Even now-once in a while I am crushed with grief. Then I remember-can't change it-get on with it.
Exactly, Emily. Well said. I always enjoy your posts.
I call it acceptance. I finally learned to live with the losses and not spend all my energy mourning them since I could do nothing about that. Gave me more energy to tend to DH as he needed. Don't believe he ever noticed a change in me or my feelings toward him. Lately I am trying to keep my mind free, peaceful and full of faith. Have to work at it harder some days than others. We each must find our own way and how wonderful to have this place full of compassionate folks who cheer each other on.
Emily, you just gave me one of those light bulb moments. I decided long ago that I really wasn’t interested in another romantic relationship (in fact I had decided if my DH went before me - & this was before AD was in the picture- I would not look for romance). My problem is that of all the things that DH lost he is still very aware of the physical part of our relationship. I find it increasingly difficult to “get friendly” in bed (one of our newbie’s used that phrase about his DW & I thought it was so cute!). I know that “this too shall pass” so I just take it one day at a time. I have to admit that I sometimes still feel pangs of sadness when I see other couples, but I don’t dwell on it.
Em - I so wish I could get to that place, not envying couples. I do fairly well until I'm out shopping. It kinda like a out of sight out of mind "thing". I do treat DH with so much love and kindness but gosh, I still miss "us".
I miss 'us' too,especially today (45 annv) but there was no reminders of what we"had",had lunch out and he told the waiter what day it was but that was all it meant to him,just a day. At least we had a nice day out with very few problems so I will celebrate that. Could have been one of our BAD days instead!Good to have somewhere to tell these sad stories to,most others just do not understand how hard it is to have the man you married still there but the husband you had is GONE.
I do too. (miss "us.") I don't think you can ever really "get over" a beautiful relationship once you lose a partner. There's going to be an aspect of grief there forever. I guess the difference for me now is that I'm not laboring under the ache or immediacy of loss. It's probably similar to how you progress into contentment if you're actually technically widowed.
I think as this disease progress, early on you think more about the future, you have more time on your hands as your mate is not as needy, as time passes you have less time and energy to think too much about the future, you are being consumed by here and now. I think the issue becomes more focused on how to survive the day. The only time off is when they are asleep, and yet you still have to be watchful that they do not get out of bed and hurt themself.
the losses are less apparent as time goes by we get to where you are emily- emotionally speaking. i dont think the loss and hurt ever truly goes away but lays dormant just below the heart. its all part of the 'acceptance' we all seem to adjust to-like it or not.
Ahhh yes, the emotional divorce/widowhood. . . . Somebody on this board used that phrase 4(?) years ago. It was only when I started to imagine (and plan) a future as a single person did I feel like I could do this for a decade (or more?).
When she forgets our marriage and my name it doesn't bother me because I don't think of myself as a 'husband' anymore.
In fact at the beginning of our experience we went to a 'support group' education program at the Alz Assoc. The (young, well meaning but single) social workers running the program kept referring to me as her caregiver(!) I told them I was her husband and did not want to be her 'caregiver'!! It bothered me that they called me that. (I think they imagined AD as only a parent/Gparent disease) They never picked up on my distress and never addressed it in their program. Several other couples seemed to be having the same problem.
Now I AM her caregiver (not her husband) and it doesn't hurt anymore. . . . well maybe not as much . . . .
great post Emily. I have never thought you even a little bit "not-compassionate". We all do what we must to survive.
I "faked" it for a long time as well. Oh I still loved Lynn greatly, but in the more difficult stages, it was very hard to FEEL the love when I was getting my ass chewed every day. At times, he was so hateful to me that I had no choice but to try to protect what was left of my broken heart... I built some "walls" but I never could do the whole "emotional divorce" thing. So many tell me this isn't healthy, that I have to learn to let go. I just can't, It isn't in my makeup. I think perhaps I hurt more often this way, but I also think it enabled me to hold onto the love. Even today in late stage, I love him as my husband. He is still the love of my life and I treasure every little glimmer of "My Lynn."
Just today I was remembering having to place Lynn. I was recalling how bloody awful those years leading up to placement were. Hitting, screaming, no bathing, etc etc...I would have sworn he hated me. Then bam! once placed he became the Lynn I use to know and love. So kind, so loving..... and those "walls" I built came crumbling down around me, leaving in it's wake a weeping heap of a mess. So many times I found myself on my knees, not even sure how I got there. It was the hardest thing I ever did placing Lynn. But in some ways, it was the best thing I could have done for both of us. He loved me again, and ever since that day, I was able to love him as my husband again.
As others have said, the longer you battle this, the more they progress, well by late stage, there is nothing left to be upset or angry about (at least towards our loved ones) They aren't able to do the things that use to upset or annoy us. The old hurts are long forgotten and forgiven. Now there is gentle love, kindness and compassion. The longing for our past relationship has been replaced with a different kind of desire; the desire to see him through the end of his journey with as much peace, happiness, comfort and dignity as I can provide.
Emily, Nikki...beautiful posts..I shed a tear reading your posts. I think I'm at the faking stage. I hope I get to feel what your feeling now, not to "fake" it anymore, to accept and feel compassion..lose the anger and resent..
Emily, Thanks for posting. I think I have been at this stage for sometime now. Before the dx we were having so many problems that I was already drifting away from DH. So it was already in place when the dx hit. I am a caregiver to a nice man. I love him as a child of God, but he is not my husband. He still says he loves me and I get a kiss every so often. But no husband-wife type of relationship. I will care for my DH one way or another till the end. And I pray for him every day. What else can I do. I have to do what is best for me, without me, DH would be in a NH alone. I get sad when I see others who are happy together. But who knows what heartache they have endured over the years. So I wish them well and wait to see where God wants me to go on this journey.
Nikki, You are the sweetest person I have ever seen. Your Lynn is blessed to have you.
Ok it's nice to know my feelings are normal!! thanks everyone for posting your feelings, thoughts, worries, cares, concerns...it has helped me to know I am not alone in these emotions. :) :) Prayers for all of us as we walk this unexpected and unplanned journey together!
I agree with blue, Nikki you are so incredibly sweet.
When I joined this site a few weeks back, I was a raging scary mess. Now, I am way less of a mess..
I have taken a bigger step in "acceptance", now I do not snap at him so much and feel more compassion, though that really hurts too but in a more constructive way.
My faith has been so ragged since my sister died, as the doctrine of hell for unbelievers is just too much for me to swallow.
And though that precious woman is gone, my most wonderful pal, I can accept it. What is happening with dh is much harder.
So those few weeks ago, as Nikki said, I fell and fell on my knees, I was crying so hard one night it woke him up and he came to check on me.
I am letting God back in a slower way, not questioning, just saying I will talk to You, maybe not have the answers, but I need You.
So yes, I can say there has been a little heart recovery. And I know, another stage is coming.
Don't get me wrong, if my DH could come back and be his old self again. The walls around my heart would fall. But to try and be the husband/wife we once were now is to die again each day. I have had to set myself apart from what is left of my DH. If I thought it would bring him back I would gladly give my life for his....I feel lost inside without him....so I keep even that part of me away from me....
So now I am just a woman who takes care of a sick sweet man. Awhile back when I was having a bad day I posted on my FB why, and just how sad I had become. My niece, said I was an source of strength for her because of this. She had just had a miscarriage. And was feeling her own loss. To here that I was her strength made me feel better. We are not alone. So many around us suffer.
Emily I think that was a very open and honest post. I think the degree's of Acceptance is what we are all talking about. And I think there is a direct connection to leaving depression and giving way to Acceptance............the more you accept the less depress you become. That doesn't mean you have to like it, doesn't mean you can't hate it but once the acceptance takes hold many things don't zap your energy anymore. Will we still have crappy and poopie days, hell yes!!! Tired and being exhausted thats the only enemy we can control..........it's not Alz. My question to myself is "are you depress or is your life depressing??" My answer, my life is depressing, I'd be depress if I had Alzheimers. Caring for your "husband" .....annoying (they are men you know) Caring for the love of your life .......priceless (and exhausting). I just pray and ask for strength. I take each day of this downward journey as accepting the path put before me, this is the price for having the best of times :) and know I don't have to like this part of the Journey but I accept the best part so now I pay the piper.
As a abused child you learn to put up walls. You learn to go on in life not letting the real you out. I went through counseling to learn not to escape like that. Now I have drawn on that putting up that wall - escaping the reality - living the moment. I guess I can say my childhood was training for this.
I'm still at the stage of thinking he can still do what he has always done. Then reality sets in and I realize he can't and I must. Grieve, no time for that as I also look after the needs of my 90 year old sister in assisted living and have a bi-polar 44 year old daughter who is more trouble than both of the others. I'm struggling everyday and missing the help-mate I had just for basic living. Romance - well we used to joke about never giving that up no matter how long we lived. But the lover I knew has gone away and someone else has taken over and I don't have "those" feelings for this guy, sorry. We were given over 58 years of a wonderful, loving relationship more than any one else in our families so I need to just be grateful for what I had and accept what is. I'm trying.
flo39, my DH was DX in '06 so I have been at this for over 5 years & I STILL think he can do the things he used to. It is so hard to realize that he doesn’t know where the bathroom is, or how to use the remote or that Patrick is his son. I get frustrated & then angry, I’m not angry at him, but at the disease. But of course who do I take it out on? I need more patience & I pray for it every day. I too need to be grateful for all my blessings because believe me I have many!
Charlotte - your post made me sad. I wasn't an abused child, but I learned to put up walls for other reasons. I love the man I'm living with but I feel so sorry for him. It hurts so to realize he doesn't know how to put the dishes in the right cabinets anymore, and tonight he thought he put sugar in the sugar canister but instead put it in the flour one, mixing the two together. That's what I feel, so sorry.
I had to let go of the anger; it was eating me up. Once I accepted the fact that my BH was not going to get any better and that I was responsible for taking care of him, the anger melted away. I now have to focus on keeping myself healthy so that in the future I can take care of him and me. He has noticed the change in me and I think he is wondering what caused the change. We have only been married 3 years and never had time for "romance." I do miss what could have been and never will be, but I no longer take the blame for it.