Writing to a new friend about the journey he’s just beginning
Last week I mentioned an email from a fellow who has just started reading this blog. While I’m always glad to discover someone new who’s visiting here, I wonder what my current posts mean to them. Evelyn and I are likely at a different stage than they are. So I encourage them to go back and read earlier posts.
I decided to follow my own advice, and as I skimmed through posts from a year or two ago, I realized how my perspective has changed. Evelyn’s decline is constant, but the daily disruptions to our life together are past. We’re not really together now that she’s moved to the memory care community. Now I’m faced with making a new life. Then I was futilely trying to keep hold of the old.
The letter from this new friend prompted me to tell him some conclusions I’ve come to in the six years or so we’ve been dealing with Alzheimer’s (and later Parkinson’s). Last week I promised to post here what I wrote him.
His note described his wife’s activities, and they are typical of an early stage of the disease. But he’s wondering how long it will drag on, he said. “It surprised me how quickly I became a caregiver after diagnosis,” he added. And he confessed he feels guilty about such thoughts.
I thanked him for his email and then wrote more:
Seize the day
First: You are so fortunate to know that your wife is sick long before the illness becomes debilitating. Take full advantage of these months and years! Travel. Eat out. By all means get together with friends. It seems that social interactions can slow the progress of the disease, and you may find it a lifeline. It certainly has been that for me. Enjoy church and your favorite TV shows together. Do everything with each other you can while you still can.
You may be blessed to enjoy these shared activities for a long time. But likely you will be forced to say (again and again), "Well, we can't do that any longer." Each of those realizations is another loss, and each is painful. So take hold of what's important to the two of you before it slips away.
Claim your mission
Second: I resonate with your surprise at becoming a caregiver. I confessed my own surprise in the second post at my site, almost three years ago. That was three years after our confirmed diagnosis.
I tried to involve Evelyn in activities and duties around the house, but her ability or willingness to tackle them slowly, slowly faded away. It took me a long time not to think of our kitchen as her kitchen, not to prod her to finish the laundry, not to ask her to choose what she would wear.
She ignored me sweeping the living room or fixing dinner; at first I resented that, and then it just made me sad. "Caregiver" isn't a label any of us seeks. I understand.
I did decide that caregiving had become my mission. (See another early post.). It wasn't the calling I anticipated for myself, but it was the one God had laid before me. I said I had accepted it, but I'm not sure I did.
Move forward
Third, do not feel guilty about wondering what the future holds. If you weren't thinking about the future, your friends would worry about you.
I, too, quietly consider how long Evelyn will live with her terrible diseases, how old I'll be if she survives five more years, how I'll feel when she passes. I think I'll be gut-punched with grief. And relieved.
It's impossible not to think about what your life would be like if she weren't sick. Or what it will be like if someday you're not caring for her.
I'd suggest you consider such thoughts when they come, and then put them aside and get on with the duties of the day. Denying your feelings will only make them fester in an unhealthy way. But wallowing in grief blinds us to the opportunities around us.
And when you're on your hands and knees, cleaning up a mess on the kitchen or bathroom floor, just ask God for strength, and try to muster feelings of gratitude that you get to serve your wife as if you were serving Jesus himself. I decided that "Alzheimer's patient" can fit into his category "the least of these." Sometimes that helped me keep going.
I'll pray for you today and look forward to staying in touch with you. Each story fits a pattern, but follows a different script. I'll appreciate whatever you can share with me about yours.