Changing the Compass

Where do I begin? It has been a long time since I have written on this blog page and I know some of you have been wondering what is going on in our lives. Thank you for caring. I have still been writing about our family and about my grieving process for Home Instead Senior Care. It is the same writings I did on Missing Jim, so please visit their site.  New postings are done twice a month.  Many of you have asked me to keep writing, not knowing that I am. So click on this link: Let Me Know Blog Piece  to get caught up. And thank you. Really. Thank you for continuing to care and to share your own stories. I feel so honored.

I am still active with advocacy for Alzheimer’s Research and for caregivers. It is my passion and it is part of me. It consumes me at times and brings me out of my darkness.  The kids and I took part in a documentary recently:  Alzheimer’s: The Caregivers Perspective by WCVE in Richmond, VA. I think they did a great job showcasing the various aspects of caregiving and how each patient and challenges which accompany each patient can be different. Thank you to Mason Mills and his team at WCVE for all of their talent and dedication to this project.

The most common question I get asked is, “How are you?”

To be perfectly honest, I don’t know. I have never been in this place. I have never been so forlorn and so devastated.

Recently, I was talking to a friend and I told her I had lost my compass. She agreed and told me I was in the middle of a huge storm. We laughed about me just jostling around trying to stay upright, but the conversation was dark truth hidden in lightness and laughter. While I was taking care of Jim, I was in the storm, but I was contained in the harbor, tied to the dock just swaying around trying to stay afloat. There was a constant feeling of imminent doom. Jim was still my compass. I was always focused on taking care of him, taking care of the kids, in constant motion even if I didn’t always know what was around the corner. I knew my purpose and my role. My world was confined and at times terrifying because I was blinded by the disturbance in the atmosphere around me.  I still had Jim showing me so much in his way he did…by example.

Now I am in the open sea, with waves crashing at the most unexpected moments and the feeling of impending doom just as before, but with times of calm and serenity unexpectedly showing up as well. Moments of lightness which seem odd and out of place. Moments of what is close to a thrill with this new freedom. I am out of the harbor, but without a compass I am lost. I am my own compass and it is a personal change that I know will take time but during the process I am having missteps and successes. New friends are in place, old friends are in place but ultimately I am in charge of weathering this storm and finding my way. I haven’t had this kind of disenthrallment in years. Jim gave me all the room I wanted in our marriage, but I am no longer tied to anything other than my children. Decisions can now be based on new thought processes and changing outlooks and plans. It is scary and invigorating all at once. Naturally, there is guilt. Guilt when I think back on Jim and his illness and my care, my impatience and …. so much guilt. Then there is new guilt. Survivor’s guilt. Guilt he has missed so much of the kids’ lives. Guilt if I smile or laugh. Guilt at trying and sometimes succeeding in being happy. Guilt I couldn’t save him. Guilt I wasn’t perfect for him. Guilt I am trying to move on and need to move on.  Guilt underlying every breathe I take.

Filling out school forms and being the only parent listed has new meaning. (Actually the form options were separated, divorced, single and married. I wasn’t sure where I fit in) Calling the utilities and taking his name off the bill. Doing his chores. Seeing his pictures. Looking through his things. Choosing when to put away his toiletries.(I haven’t yet) Still sleeping on my side of the bed. Checking the widow box on official forms. Explaining I lost my husband to people I meet. Trying desperately to remember each memory and terrified I will forget something as simple as what songs we sang together or what meals he liked and what he smelled like. What he felt like to hold. How calming he was for me just to be near. Each day takes me further away from him and from us.

I used to say I was lonely. It is surreal how now that he is gone from us entirely, I no longer feel lonely. Sad, scared, bitter, angry, emotional, and a myriad of many things, but not lonely.

I am here. I am surviving just as I always have. Some days are easier than others. Some days I sleep more than others. Sometimes I just don’t think I can keep going. Somedays I recognize how blessed and lucky I am. Overall, I am fine. Just fine.

Brad and I at the Walk to End Alzheimer's. Oct 2016

Brad and I at the Walk to End Alzheimer’s. Oct 2016

posted by Karen in Younger Onset Alzheimer's Disease and have Comments (7)

7 Responses to “Changing the Compass”

  1. Kathy Taylor says:

    Karen, I just stumbled on your post. I followed you for so many months. This post comes and it describes your, mine, and many, many others who have lost someone very special to this devilish disease. I lost the love of my life in August 2015. The next June we would have been married 50 years. Your words describe my life so perfectly and eloquently although my children are grown. Thank you, Karen and I will certainly subscribe to your new blog!

  2. Shirley says:

    Although we have never met, internet sister of mine, I love you!

  3. lorrie says:

    Sending many hugs to you and your family.I am so happy to hear from you.Your bravery amazes me.

  4. Sandra Dogger Klassen says:

    I’m hoping I may put your words into my “Journal to my Future Self”.

    I read your words above: ” I have lost my compass” and your friend saying you were “in the middle of a huge storm”
    Truly I had to backcheck that paragraph above three or four times … such is my recall now. My journals are in book form… I’m told by other women’s advocates my journal should be taught. I suggested one of them do so, my organizing skills are fading. My idea is to respond to a journal prompt ( found online) post a photo if it applies, in hopes it will trigger a conversational memory a few years from now.

  5. Sandra Dogger Klassen says:

    And yet who is to say how long that will be? Years I think when I think it’s been years since I lost and resound the ability to complete sentences. ( slight stroke?) The Dr tested and determined I have dementia. It doesn’t dismay me any more. I have an excellent caregiver (husband) a daughter who will be back up ..who also understands my confusion and ability to move forward when I’m feeling overwhelmed.

    Playing my flute, playing scrabble, drawing on past experience in writing reports. I feel secure in putting words and thoughts in print. Taking Coconut Oil daily , knowing my man has placed everything out in order I must take them.
    We’re all in this together aren’t we? Thanks for the encouragement. Sandra

  6. Sandra Dogger Klassen says:

    Resound????? Refound!!!

  7. stephanie warner says:

    This is a great write up, I was also a victim, having Alzheimer’s disease for many years. My journey and diagnosis with Alzheimer’s disease began when I was 58 years old. My medical condition was heart broken. The first thing I did was get myself informed. I was subjected to different medications including Donepezil, galantamine, by my doctors for treatment without the assurance of having a positive improvement. Despite my visit to several doctors my health wasn’t getting better. Also I keep thinking there has to be another alternative to address this, using herbal remedy, this information reinforced my original gut feelings that I should not give up. I decided to look for another option to help my condition. I’ve made many lifelong friends when I was looking for a natural cure for my ailment. To say it gets better is an understatement. I find hope in the darkest of days when I saw a testimony of people talking about Dr. Charanjit’s herbal product. I started having series of thoughts, thereafter I ordered his product and started using it, to give the Alzheimer’s disease an aggressive approach, the symptoms progressively got better.
    I promised myself that I would stay strong. You sit living in fear of the reality what you may face, never really knowing what will happen until it does. I am indebted and decided to always share my experience. I got to know him through:

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