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Let Me Know

November 14, 2016

I need to know that I am forgiven. I need to know that Jim was OK. I need to know that he knew how much I was going to miss him.

I told him. He cried. So we didn’t discuss his impending death too much. We discussed what was happening, leaving what was coming on the peripheral. I told him I was sorry when I would lose my temper and my patience. He told me it was all right, he deserved it and he forgave me. I would tell him he didn’t deserve it and that I would do better. I usually didn’t.

I wish I had been able to just sit quietly and take hold of the moment without worrying about the kids or dinner or the laundry or what I was going to do with Jim when he got worse. I wish I could hold his hand and tell him how many times I would long for that very moment back again. I did one night. I cried. He cried. I told him how sorry I was this was happening to him. I cried some more and begged him to keep fighting. It would be a little over a year later I whispered in his ear and told him it was all right to let go. I told him the kids and I would be fine and he didn’t need to fight anymore. I wish he could let me know he needed those words and he is OK. Jim always had such a great attitude. I am sure he did it mostly for me and the kids but even in our darkest moments he did not waiver. Never complaining or feeling sorry for himself. His personality was always just do what he could for as long as he could as best he could. That was who he was. I was so lucky.

He emptied the trash. He walked the dog. He fixed whatever needed to be fixed. We all know how it goes in a marriage; each person has their “things” they do. Jim did the guy stuff: trimming the hedge, cleaning out the shed, doing dishes after a meal. Once he was too sick to do these things, he would still try and it would be frustrating for me because I would usually end up just going behind him and fixing whatever it was he had tried to do. And I would complain. And I would be tired of it. I would wonder how much longer we all were going to be dealing with this…And I would love to be able to do that again.

It is strange how you get used to those roles you each have in the home. So now, I instinctively think to leave something for Jim to do because that is “his” chore. Well, now they are all mine. It doesn’t do me any good to leave the trash, or the hedge or anything else for him to do. It is those nuances that interrupt what was once an oiled machine, instantly bringing to the surface the huge gapping hole in our family.

There are special people in this world who can appreciate moments as they unfold. They can look at a given situation from an outside perspective and know how they should react and how they should feel. I knew how to act. I knew how to feel. I wrote about it and talked about it and it consumed me. But I didn’t follow my conscious. I knew one day I would long to have Jim back. Even the sick Jim. Even the Jim that would get confused or the Jim that would break something. The Jim that shuffled along was hard to watch but I would love to be back watching him again. But then, I think of how he didn’t want to live that life safe weight loss supplements. He didn’t want to be a burden. He didn’t want his kids to watch his decline and watch him become someone else. So, I knew to grasp hold of each final moment and I tried my best, but I couldn’t do it. I couldn’t appreciate the moment while in the moment. I wanted to and I recognized that I should yet in the end I look back and know I could have done better.

The wonderful people who are lucky enough to be able to stay in the moment are people I envy. I don’t envy many but I do them. They won’t look back and wish they had done something differently. They won’t look back and know they caused hurt or confusion. They know they were good caregivers. Good spouses. Good people. Am I a good person if I got frustrated and impatient, knowing Jim was doing the best he could? I knew then and I am paying for it now.

One of the roles Jim had was being my biggest cheerleader. Reminding me I was good. Reminding me of all the reasons he chose me and why he loved me and was happy to be my husband. The well oiled machine is broken and rusted out. It is now I who looks back with regrets and longing for a do-over. There are no do-overs. I can see life getting better. I can see me not crying as much, smiling more, even laughing at times. But I still long for another conversation to let me know….

Thoughts and stories from others

  1. May 8, 2017 at 01:37 am
    Posted by Doreen Barr

    My husband is still here but moving in this long journey. We have been married 60 years, but I have the same feelings that you all have expressed. I said I would keep Jim at home until the end but I am finding my commitment to this goal is weakening. As this goal weakens my sadness and guilt increase. Jim has had dementia for 8 years now and at times the stress and responsibility and loneliness is beyond my ability to cope. now I have read remarks from spouses who are now alone and would now cherish this time again.
  2. March 13, 2017 at 10:16 pm
    Posted by Joan Sikkema

    My sister turned me on to your blog. She said, "Jo, a lot of what your saying this other gal has given voice to. I think you'd find it helpful to read it." I did and she was right. I too find myself adrift in a sea of shame, anger and grief. With each declining change, an unseen wave of anger and grief knocks the legs from under and I drift for about a week before feeling I can go on again. This past week has been my hardest to date;most memories of me are now forgotten. I am no longer "wife." For me this is not a wave,this is a tsunami!
  3. February 20, 2017 at 08:38 pm
    Posted by Leslie Wylie

    Wow. I just read this blog. My husband is 49 with Alzheimer's and I feel like your words are mine. Thank you for your encouragement. It is so hard
  4. December 20, 2016 at 07:01 pm
    Posted by Emily

    Thank you for having the courage to share your story. Until I took care of my mother recently when she was I'll, I had no idea how caregiver stress could make me do and say things to mom that were impatient, and even cruel. Even knowing while in the moment that my behavior was inappropriate, the stress of decision making, overwhelming responsibility, and loneliness compelled me to act out despite my knowing better. You are not alone. I've come to believe after hearing several similar stories that caregiver stress is inevitable, and it's impossible to do this perfectly.

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