Call 888-734-8645 today for Home Instead Senior Care dementia care services in your area.

Expert Blog

Jim Being Jim

May 23, 2016

There is survivors guilt and then there is caregivers guilt. I am suffering from both. At the same time.

I am floundering in a sea of people moving forward, feeling bad for us but who have their own lives to push ahead and live. I get it. But it doesn’t change the sorrow I am surrounded by without the ability to will it away.

I see Jim as he once was. Alive and capable. Smiling. Joking. Laughing. Running. Playing. Helping. I see him free of the disease that robbed him of so much. And it makes me miss him even more. It makes me sad for him, for his suffering, for his journey, for the loss. I grieve his absence from the man he was years ago.

Then I see him sick. I see me being impatient. Unkind. Frustrated. Angry. Cold. Stressed. Unloving. Worried about finances. Worried about how this will affect the kids. Worried about making the right decisions. I feel sick to my stomach each time I recall my own pettiness and unacceptance of the new Jim that seemed to change at unexpected intervals. I am sickened with shame, guilt and the pure and simple revelation that it is over and there are no redoes. There are NO second chances. I don’t get to apologize again. I don’t get to change. I had my chance and there were times I failed the test. Sure, I had my moments of greatness. I made the right decisions at the right times. I looked out for Jim and fought for Jim and I loved him through and through. But there were moments….

I am told that eventually I will feel less and less. I will move on. I will accept all that has transpired. I will forgive myself. I know Jim forgave me. He told me. But it is always harder to let go of our own shortcomings.

If I had only known….he had such a short time left. If I could have seen how amazing he really was, even while he was so sick. He still lit up when I entered his space. How could I not see how special he was, being so kind and so considerate while this disease was stealing him from us? Why couldn’t I be grateful for him trying to help, even if he was breaking things, misplacing items and causing havoc? What would it have harmed if I had just kept quiet? And each time I apologized to him for losing my patience, he simply told me it was all right. He reminded me how much he loved me and that I was doing a great job. Him telling me I was doing good.

Yes, I am hard on myself. I was hard on Jim, on the kids, and now I am soft. I find Jim taught me so much during his last years. He taught me how to be a better Mom. A better friend. A better person. He showed me by him being him. Jim being Jim. The best man a woman could ever ask for as a husband, a father to her children and a best friend.

I will miss him. We will all miss him.

Thoughts and stories from others

  1. May 26, 2016 at 11:11 pm
    Posted by Bertie

    Karen, we all hear the saying, "Time heals all wounds." But sometimes I wonder if that's really true. Know that you are not alone. With or without alzheimers, we all ask ourselves ,"Did I do enough? "I wish I had..." "I regret I didn't ..." It's a journey. A journey that begins with Alzheimer's and continues long after our loved ones have left this earth. Praying that you and your kids find peace.
  2. May 26, 2016 at 07:31 am
    Posted by Patricia

    Karen-it took me years to realize that I missed my mother as she once was before dementia & alzheimers took over, but not as she was at the end. She would not have wanted to stay on this earth if she had to be as she was at the end. I don't know why exactly i had to come to that revelation to begin healing, but that was my moment. Until then, I was so hard on myself & everyone around me. I compare this disease as "living in a snow globe" (for both the patient & the family). Every now & again, you see clearly but mostly it's like looking for the light in a snowstorm. Hugs!
  3. May 25, 2016 at 12:03 pm
    Posted by Dee Armstrong

    Hi Karen, I am walking this path of Alzheimer's with both of my parents. I have followed you through your blog/walk and there aren't words to tell you how much you gave of yourself that helped me soldier on, know that I wasn't alone, grew stronger and softer, realistic,sad that my Mom And Dad are gone but not in body,enjoy a new norm till the next comes and on and on and on..... please know you and your family are in my heart and thoughts .... FYI know my daughter, Krista B.

Share your thoughts, stories and comments

Your email address will not be published.