Dear Father Joe: My Mother Has Been Diagnosed With Dementia
I am struggling mightily to figure out what to do. There are days I just can’t take it anymore and I struggle with guilt about how I feel.
God bless you ... I have walked this road too and the pain is at times unspeakable. I am so sorry for what you endured and I hope that my words can offer you some kind of comfort as well as consolation.
As a priest, it has been a normal part of my life to be with and comfort families who were dealing with a parent suffering from Alzheimer’s or some other form of dementia. When I did so, I felt their pain and believed that, at least at a base level, I understood. It wasn’t until my mom was diagnosed with this disease that I realized there really is no way to describe it to people. There is no way to understand the horrors and sorrows of it until you’ve walked that road yourself.
As best I can as a broken sinner who loves Christ, I am with you. Please allow me to share with you a few things that helped me a lot as I dealt with her illness and then death.
In the first five years of my life, I was basically unaware. I don’t have any conscious memories of my life at that point. I don’t remember the exact moment when I became aware of Mom and the role she played in my life. I know it wasn’t until I was much older that I actually appreciated her in a manner that was/is consistent with the level of gratitude that I should have possessed.
I don’t know how many times she stayed up all night with me as a child. I don’t know how often she missed meals because I had a need. I don’t remember her pushing through personal sickness to care for me. I had no ability to remember those things.
And yet, she did them.
I wasn’t capable of seeing and acknowledging her innumerable sacrifices; I lacked the ability to even notice it but she still did it and that, to me, is one of the most loving, pure and amazing things about parenthood.
It was an awful gift, but also a beautiful one when it struck me that her affliction was my chance to love her in the same way she loved me.
In the loss of her memory and her mind, I was given the gift of being able to love her and care for her without thanks, without memory.
I would assume it is impossible for a person to be able to look at their parent or parents and say “they know the depth of my gratitude, they know how much I love them.” I believe that is part of what makes heaven heaven. One day, our hearts will be clear to each other and until that day, we suffer a bit with the inability to accurately communicate our love.
But here’s the thing. It turns out that some of us are given the ugly but salvific cross of knowing that we were able to love our parent or parents in the exact same way they loved us: anonymously and selflessly, with no hope of thanks or acknowledgement. I hated the suffering my mom and our family endured, and I am also eternally grateful for it.
The second blessing to consider is that anytime someone we love suffers, we are offered a chance to stretch and sacrifice for them and there is no better way to show our love and commitment than to sacrifice. Nothing quite imitates Jesus like being willing and able to give of ourselves until there is nothing left.
I have no doubt that most of us would die for our family and that is beautiful. However, God will rarely ask us to die for that. What he will ask of us is that we live for our families. We bleed for them. We lay down what we want to do because of what we ought to do.
Doing so is exhausting and painful. Doing so will cost us so much, but I suggest to you that not doing so is much more painful, much more exhausting in the end because we were not made to live for ourselves, we were made to live for God and for others.
This is not something we can do on our own. We need the power of the Holy Spirit to guide us, strengthen us and give us all we need to do what we are commanded by God to do.
In terms of your feelings, I don’t know that there is much you can do about them; you and I do not have control over what we feel. What we do have is control over what we do with what we feel. St. John Paul II suggests that when we are struggling with “dark feelings,” we do not condemn ourselves for them, but instead “take what we feel to the classroom of our minds in order to discipline and educate our feelings.”
When my mom finally died, I remember the relief I felt and then the guilt over that feeling of relief. I came to see that this is normal and even healthy. The moment she closed her eyes on this earth, that gray curtain was lifted and she saw God face to face. In the words of The Apostle, she could say, “I fought the fight. I ran the race. I competed well.”
Who wouldn’t feel relief?
It is my hope that God bless and strengthen you and let you know he sees your love, your sacrifice and your fatigue. He accepts these gifts from you and weeps for what you weep for. You are not alone.
If this is not a struggle your family has endured, please pray for all of those who are struggling with Alzheimer’s or dementia in their family. If you can, offer to help them with food or by taking duties off their hands. They will appreciate your prayers and your gifts of time or small kindnesses more than you will ever know. Enjoy another day in God’s presence.
Father Joe Krupp is a former comedy writer who is now a Catholic priest. @Joeinblack