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. 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….

17 thoughts on “Let Me Know

  • Loretta Veney

    Dear Karen,

    So we’ve only met once in person but I’d been reading your blog and following your struggle with Jim and this dreaded disease. And of course I never met Jim. But…. in the conversations you’ve shared previously and what you’ve shared in this post says to me you don’t need a do-over. Jim loved you and the kids more than anything and he knew that you did the best you could, with what you had, where you were and what you were dealing with. I’m in awe of your strength and resilience. Jim would be proud!

  • Gayle Rashidi

    Hello Karen,
    it was nice to hear from you thru your blog. I believe Jim knew how much you cared and loved him. I used to think I was so lucky to have married such a wonderful caring, never judging man. My cheerleader as you say- Fred was sent to me to give me a love and 2 wonderful sons that have grown up as caring and loving men. So now I
    look back thinking I was sent to Fred to help him on this terrible hard journey of life. It has been hard as you know. There is a part of me that has finally accepted what I can not change. I can not save him.I can just be here & hug

  • Michelle

    The hardest thing it to accept the things you can not change. I know, I have felt the same feelings, the anger at myself for not being a better person to my husband that provided so much and now needs help. The feelings I have about myself are not the same feelings people have about me or you. They have seen the strength that it took for you to be on this journey with Jim and the wish they were half as strong as you are. I know people have told me for years how strong I have been but I don’t feel it myself. So I have decided to give myself a break. I hope you can to. HUGS!

  • Liz

    You are a hero to many. We look at you with awe and love. You are strong and brave. You did so many things right. It’s impossible to do everything right. Jim knew you were there for him and that you had his best interests in mind. It’s normal to have been frustrated and yelled at times. We do that in our regular life and we can’t always hold it in because a person is sick. It was ALL on you. You had every right to be mad, sad, frustrated, bitter, wounded, raw, and emotionally and physically exhausted at times. Nobody should have to go thru what your family went thru.

  • gwen williams

    I know exactly how you are feeling, still going through it, as I broke my comitment when we got married. My husband was the same kind of person as yours, we were blessed they chose us and we chose them. Material things are not important to me anymore as long its tidy.
    We live in hope that we will be one day be forgiven, and meet once more. God Bless you

  • Joann

    Karen, I totally understand your feelings. I lost my husband in May. Every day I regret something I did wrong, or something I could have done, but didn’t. Guilt is a hard thing to live with, and it often brings me to tears. I miss him, and it’s lonely here without him. We were friends, partners, making all decisions together. He was hospitalized for the last week of his life, and although he hadn’t said my name in a while, he shouted out my full name when they tried to examine him for admission. I’m hoping eventually the guilt will pass, and the grief will be less intense.

  • Dorothy

    I lost my husband less than two months ago. I understand I really understand. We have fought and given into the disease for 8 years. Now, I do not know how to be me. The little things he did and now I have as my own cause daily guilt and pain. I was and am not a feel sorry for myself person yet I look back at each moment and wish I was better. I simply understand can only wish. I lost part of me and like all of us on that path I know and I understand the logic. But the emotions are overwhelming

  • Frances

    Karen, I read your thoughts with tears in my eyes, heart breaking (even now tears are flowing) because you summed up all & everything that I have been dealing with these past 5 months. My Tom was so much like your Jim, patient,kind, understanding, loving, cheering me on. He did not like for me to put myself down & would say ‘Frances, you are the woman I love, my wife, I don t like to hear you say negative things about yourself’. He too realized he was a burden on me as I was going downhill fast as I was 81, he 87; blessedly, we had 38 wonderful years together.

  • Ann Napoletan

    I just started (another) book on mindfulness. Living in the moment. I’ve never been able to do it, and the thing with this disease is – it’s natural to worry about what comes next because it’s so unpredictable. That leaves us constantly trying to prepare for the next thing…even though we don’t know what that thing is. It’s hard not to have regrets. I think you would have to be superhuman not to look back and wish you had those moments, those do-overs. I hope it helps a bit to know you aren’t alone. Jim knew in his heart that you loved him and always did your very best. xo

  • James Bennetzen


    It sounds like Jim was still aware of who you were and the relationship you had, in that you should take some comfort.

    My wife was been in a Lock-down Alzheimer’s unit for 2 1/2 years, she no longer knows who I am, our children or grandson. Some visits she recognized me as someone who visits her and takes her on walks out into the main facility, but no understanding of our relationship, other times I am a complete stranger.

    This disease has stolen our shared history of a 37 year marriage and any future plans we shared.

    She may not know me, but I know who she is.

  • 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.

  • 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

  • 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!

  • 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.

  • Doreen Barr

    My husband died August 09 2017. I kept him at home until the end. Palliative care supplied us with hospital bed, morphine and moral support. Our daughters were there and we turned Jim, played his music, he could not eat or drink due to a stroke. Lasted 8 days, but we were able to supple comfort with mouth care, body care and morphine every 2 hours. I miss him every day, and suffer the guilt that seems to be part of care givers life. Thanks for your blog

  • Lynn

    Thank you for sharing this. My husband was diagnosed with dementia a month ago. Reading this post has helped me to approach this process as a mindfulness practice and an opportunity to focus on the aspects of our lives that I appreciate. I like thinking of it that way, and probably would not have gone there without your reflection. So thank you.

  • John

    I just discovered this site and want to tell you our story. My wife was only 59 when I began to notice the first hints of dementia. She was an active and well-loved university professor who loved helping shape young, eager minds. She was brilliant, scoring in the upper 1% on all her college entrance exams; she was curious about everything scientific, and could lecture on a wide range of topics. Most of all, she was an incredible wife and devoted mother and grandmother, who was enjoying her family. By age 62 she had a formal diagnosis of Alzheimer’s disease, but her mind had become so confused that she never really understood what was happening. Ironically, this brilliant scholar and professional communicator lost her verbal skills early in her bout with Alzheimer’s. Shortly after we celebrated our 50th wedding anniversary, she lost her fight, and I lost the love of my life. It’s been nearly two years and I still think about her every day, and my hate for the disease that took her rages in me. Please, help us defeat Alzheimer’s. Do what you can in whatever way works for you. I serve as an advocate and I participate in two support groups. I don’t want my children or grandchildren to have to go through what my wife and I did.

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