It’s been a disheartening two years, and I’m amazed at how fast the time has gone. I’ve seen the life I had hoped for shattered by an incurable disease and a curable one too, at least in Marcia’s case. Dealing with AD while raising young kids is not unheard of, but rare. Any time I’ve been asked to share my story at one of the Caregivers support groups, there are tears from people I don’t know. But those who attend these meetings do provide what I would predictably say is “support”. Those I’ve met do have more experience with Alzheimer’s, and their stories are no less heartbreaking, no less devastating to those who see loved ones so destroyed by this disease. They just happen to spouses, parents or in-laws much older than Marcia.
For years, I’ve marveled at so many I work with who balance a career and the lion’s share of child rearing. I will have to do this too. And take care of Marcia. I’ve had many, many weak moments, mostly early in the morning, on the way to work, or after everyone else has gone to bed. Sometimes I stare at Marcia while she’s asleep. Seeing her resting is the only time she is her “old self”. And I say to myself, “it’s really happening”. And I know Marcia is dying. AD has a way of doing that very slowly, but inevitably, starting with brain cells/function. After a year and a half, I’ve felt that I’ve been through the grieving phase. More energy is being spent on what I have to do…..
So how do I get through every day? This isn’t meant to be a statement of pride, or a guide for anyone else to learn from. It’s the question I ask often. Keeping not just busy, but out of control busy certainly is a needed distraction. I’m also now able to talk about Marcia, Alzheimer’s, the kids, etc… For the first 12 months, it was too emotional and I couldn’t do it.
I think there are several things that help me through this:
1) I pray all the time. I’ve prayed for different diagnoses, cures, and sometimes I dream of winning the lottery (but you do have to play to win). And I haven’t gotten the answer I wanted. But I’ve also prayed for strength to deal with this. I’ve prayed for help. I’ve prayed for my kids. I’ve prayed for Marcia to stay strong. All of those prayers have been answered beyond my wildest hopes. While the door that is closing has been crippling emotionally, what I’ve experienced about people and their incredible support, about what I can do, and amazingly, what my kids are doing and how they are surprising me every day.
2) On old friend/roommate from college, Jim Wolf. Jim was a college friend, one of 11 or so that I shared a house with at the University of Delaware for two years. Jim played soccer with me for a year or two, and was generally one of the most upbeat, happy guys I knew at Delaware. About a week after I graduated (Jim was a year behind me), Jim broke his neck in a swimming pool accident, and was paralyzed from the waist down, with limited use of his hands. I remember clearly three things about that first year after Jim’s accident. The first is how hard I cried when I heard the news. It took me about a week to get the courage to visit Jim from my house in Maryland. The hospital where he was being treated was in Philadelphia. The second thing I remember is how good Jim made me feel during the visit. He told me he never cried. He and his “roommate”, another guy with a neck injury and also fitted with a “halo” to stabilize his spine, teased each other about their halo’s. Jim was still able to laugh. The third thing is the most impactful thing I’d ever heard, and has stayed with me for almost 30 years. Jim and I were at a wedding. He was in a wheelchair. I was not. While I don’t remember what I asked Jim, or how the conversation started. What I remember is that Jim told me that his life was not over. So many people said they would rather be dead than in a wheelchair. Jim NEVER said that and told me he never felt that. He said his goals had just changed. His lifelong goal was to put one foot in front of the other. I remember thinking that Jim’s lifelong goal is something I can (and do) in my sleep. Jim has gone on to do some amazing things with his life, including getting married a few years ago. Jim has inspired me my whole adult life. Goal setting is important. So is adjusting those goals.
3) These first two things have shaped the third thing I credit with how I get through this. I’ve made a conscious decision to bring a positive attitude to this. I know things will get harder over time, but no matter what happens today, it is a good day. I will laugh today. I also know that sometime today I will forget to do something, and I will disappoint someone. I will also accomplish something good. I will do what I can and not worry about what I can’t or didn’t do and try to do more, or do it better tomorrow. My goals have changed and my career isn’t what others might dream for themselves. I will fulfill the vows I made to Marcia to take care of her. I will put nothing ahead of my kids. And I will accept whatever consequences those decisions have on anything else in my life. And I am at peace…
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