It has been a year since my husband and I were released from Alzheimer’s. (All you caregivers know that when your loved one finally succumbs to this dreaded disease, you are released as well.) I hold up the figurative mirror now and take a long look back over all those years of his illness. The trail has been long and hard, sometimes beautiful, sometimes painful. What have I learned?
Each person’s experience is different. You have found some aspects of my experience that match yours, some that are completely different, and some that you will never encounter. Remember that if you have seen one case of Alzheimer’s, you have seen one case of Alzheimer’s. But (to paraphrase Michael J. Fox talking about his Parkinson’s Disease) the people living with this disease are the experts. We are each the experts on our perspective of how this disease has affected us and our family and friends. Don’t allow others to invalidate your knowledge because their journey has been different.
I am sure that the stress of my husband’s disease has shortened my life, in spite of my efforts to escape that possibility. There have been times when I could feel it, as if an elephant were sitting on me, trying to squash the breath out of me. There were times when I felt that I could not leave the house, or call anyone, or deal with any small job that needed doing. It required forcing myself in order to continue functioning in a normal manner. Sometimes, all that was necessary to move me was a phone call or a letter or an email from a friend.
I recently took a long trip with my sister. I relaxed more than I ever have in my life. That realization brought the dual realization that I was still quite stressed. So, upon returning, I began to simplify. I turned the yard care over to someone else. I have begun tossing out things that have required upkeep and space and extra energy over the years. As a dedicated packrat, that project is the most difficult and will require a lot of forceful lectures from me to me, but I have high hopes.
Many people have asked me what now, or seemed certain that I would soon move to be close to children and grandchildren. First, following your children can be very iffy, since their jobs and dreams often require them to move. Second, moving near them would mean starting over. After 48 years in this city, I have sent down long, strong roots. Most of my friends are here. My activities are centered here. My comfort level with all the daily necessities of life is here. Moving would be a major upheaval, and somewhat insultingly implies that I have had no life other than as it related to my husband. That being said, there remains the possibility that I would eventually decide to downsize, or to move closer to those children and grandchildren. Circumstances allow me to stay in place for now, and just consider all the possibilities at leisure before reaching any decision.
My definition of myself for many years has been “caregiver”. Sure, I have done other things, but everything I have done has centered on, and been guided by, the responsibilities of providing for my husband’s care. Now I am facing an empty wall. I know there are doors there, but I have not yet located them. In order to find out what the future holds for me, I have to first feel my way along that wall in search of those doors. They will not appear by themselves. It will take some effort and exploring. While I await finding the next big thing, I plan to continue the activities I enjoy, embrace new ones as opportunities arise, and spend lots of time with friends and family. There is a whole big world out there, and I intend to make the most of it for as long as I am able.
We are not asked what journey we would like to take in this world, or what paths we would like to travel. We make choices every day, and have a certain amount of autonomy. But in the end, it can all change or disappear in an instant. Our only choices are to do as much as we can every day, quit procrastinating, grab all the joy we can, live as if there will be no tomorrow, but hope that we are wrong and that there are a multitude of tomorrows, so we get to read one more story, experience one more trail, laugh one more time with our loved ones.
As you travel this path, I wish that all of you may find others who understand and with whom you can negotiate the labyrinth of this disease. I hope you can find something outside the disease that you care about and which will give you a focus away from Alzheimer’s, to allow you the respite to briefly step away. And never forget that this, while long, is only another chapter in the journey called Life, and that there will be further chapters for you beyond this one. Find a goal. Find something to laugh about each day. Find some way to keep living your life as you watch your loved one’s life fade. Find more chocolate than s***!
Love, laugh, live. Take care of you, the caregiver. Carpe diem!