Since my husband Mike passed away I have been in a strange place of limbo. For 11 years I devoted my life to caring for him. Alzheimer’s was an every day conversation and the disease controlled our lives, whether it be a problem with an aide, an illness or insurance issue - Alzheimer’s was always at the forefront of everything.
Now that my husband is not here, the direction of my life has changed and Alzheimer’s no longer rules our lives. It is still a constant in our lives and I still advocate, and I will continue to do so until a cure is found. This disease will NEVER be far from my heart and soul, but the ravages of the disease and the havoc it caused, is now gone.
So now I am trying to find my place, my purpose if you will. I have so much time on my hands, I don’t know what to do. I never truly understood how much time I put into Mike’s care, until I didn’t have to do it. The kids and I often discuss how weird it is to not have to be home at a certain hour to help get Mike into bed, or to make sure someone is always home for him. It seems unnatural to us. Believe it or not, four months later and I STILL find myself making plans around Mike’s schedule.
I’m sure this is a natural process and one in which thousands of people go through on a daily basis. We will just need to continue to try and find our new normal. I hope to find a facility in my area where I can volunteer with Alzheimer patients. When Mike was hospitalized, I would feel so bad for patients where it was obvious they had some sort of dementia, yet no one ever showed up for them. I’m sure that scenario plays out in nursing homes each and every day. I would love to be able to donate some time to sit with these people and keep them company - help them feel like their life has meaning, that somebody cares.
Even my writing has slowed down. Caring for Mike created so many obstacles and issues that I could write about and share with others. This allowed me the opportunity to share with other caregivers and possibly give strangers hope and guidance when they needed it. I’m sure there will be a day when I will write about issues that I had dealt with in the past and how they were conquered, but for now, looking back in depth is still painful.
The kids and I have used the extra time to do things we were never able to do. We try to keep busy by doing things sometimes as simple as going to the movies at night. Although money is still a worry, I have made it my mission to plan a vacation for us in August. The kids and I will be visiting California, a trip we had always wanted to do, but never had the opportunity. We are all very excited about it as this will be our first trip in 7 years!
I mentioned money issues above, and as an aside I can honestly say I was absolutely shocked when I found out that I did not qualify for Social Security Death Benefits because I am too young! I have to wait until I am 65 before I can file a claim to receive benefits from my husband, even though he was on Social Security Disability before his death. Things were rough when I had my salary and Mike’s small Disability Income, but now I have only my salary. Alzheimer’s has a way of financially destroying young families like ours. My husband never had the chance to save for retirement or plan ahead. He was 36 when he lost his job - most people are just beginning then. The “average Joe” just doesn’t understand the true depths of destruction that Alzheimer’s causes.
On that note, I am honored to report that I was approved as an Alzheimer’s Association Ambassador to my local Congresswoman Carolyn McCarthy. The Alzheimer’s Association appoints Ambassadors throughout the 50 states who can personally meet with Congressmen/women and Senators on issues important to them. I am pleased that my advocacy work will continue in this way, and look forward to being a part of a team that can make a positive move toward a possible cure.