This is my last post for HelpforAlzheimersFamilies.com. It makes me sad and it has been difficult to come up with just the perfect send off to you all. I have treasured the ability to reach out to so many other caregivers who face each day not knowing what the hours ahead will bring. I have struggled to make sure I share just the right words to encourage and support you for the days and months ahead. There is so much still to say, to convey, to help as processes unfold. Alas, I feel the need to make this one special, maybe just a little bit more personal (is that possible?) and to make sure each of you know you aren’t alone and we are all in this together.
As a reminder, my husband, Jim, passed away from Younger Onset Alzheimer’s in April 2016. He was just shy of his 53rd birthday. His brother and his mother also passed away much too young from this same disease. We have two amazing children who are now 16 and 13. Yes, this horrible fate could one day be bestowed upon one or both of my precious babies. And it tears me up inside every time I think about it. Which is every day. I try not to. I try to live in the present: take each moment of each day and treasure it as if it is a gift to be cherished. As it really is. But I succumb to the human tendency to think ahead, to wonder and to worry. I imagine getting the news that I once listened to with Jim next to me. Only then I didn’t know. I didn’t know what was really to come. I didn’t know the real truth of what Alzheimer’s looks like up close and personal. Now I do. And the thought of being so helpless again, with part of me facing a disease with no hope and no good support system from our government, makes me nauseous, scared, and most of all: determined. Determined to do whatever I can in this moment to make a difference in the future. Determined to use my talents to raise funds for research, as I am certainly not going to be in a lab doing experiments. I so wish I could, but I am not scientifically minded. I will continue to speak out, speak up and speak loudly about the issues facing families with dementia. We are a large group, but a mostly silent group. It is imperative to change that so we can change the trajectory of this disease. And yes, it is personal. Would I have this will, this passion and determination, if my children weren’t facing the same fate as their father, uncle, and grandmother? I would like to think so. But in reality, I don’t know. It doesn’t matter. I am here and not going anywhere.
I am not sure where my path will lead next. Being a mom to Frances and Brad is number one. Charting a new course for our family is difficult solo, but many people do this and do a fabulous job. I plan on being one of those people. I have never had to support our family completely by myself. This past year I have realized I was still waiting for Jim. Waiting for him to help me pick up around the house like he always did. Waiting for him to work out in the yard like he always did. Waiting for him to talk to the kids about something he knew so much about or had a different perspective than I did that would benefit the kids to hear. Waiting for him to rub my back or hold me close. Waiting for his laugh to brighten a rough day. Waiting for him to organize the garage or the shed. Waiting and waiting…
Slowly, I have gotten the subconscious mind, that has been trained over many years of marriage, to start to rewire itself and to understand I don’t need to wait. I just need to do. On my own. By myself. For me. For our children. For my sanity. For my future and our family’s future.
I think it is common for caregivers to get stuck in a day to day plateau of just dealing with whatever they have to deal with at that very moment. Then when the caregiving is done, they are left with a completely different landscape of their lives. They are no longer in the realm of who they were before caregiving, and there is no going back, they are no longer a caregiver, which took up all of their mental and physical energy and now they are…? They are left to comprehend all that has happened, find new friends, new jobs, new homes, new lives. It takes years to work through all of this. I am just coming out of a fog and the realization that Jim is no longer around to be part of our world. Even though he really wasn’t for quite a while before he passed away, the finality and the depth of loss is immeasurable. To make it quantitative and comprehendible, the layers of loss have to be worked through piece by painstaking piece. This will take an indefinite amount of time and personal commitment. I am not sure I will ever truly work through all that I need to.
I am seeing two counselors. I am exercising multiple times a week. I am keeping extremely busy and on the go. I am reaching out to old friends, making new friends, and keeping the ones that have been by my side all along.
One thing that I have not been able to do is read. I used to read all the time. Books, articles, anything of interest. I haven’t finished 3 books since two years ago. I start them and don’t finish. I was always the type of reader that I finished a book, even if it wasn’t very interesting. I just couldn’t not finish. Now I can’t seem to finish. And sometimes I won’t finish a movie. Again, I always watched the whole movie, even if it was terrible.
So there are differences. But there are also many parts of me that remain. I am strong. I am committed. I am true to my word and honest with my heart and my words. I am driven and determined. There is work to continue. There is fight left in me. For our kids. For myself. For all of us.
Please continue to reach out to me through my website: www.missingjim.com. Thank you for all of your love and support over the past three years. What a difference it has made. I am so very grateful and humbled.