Her blue eyes seemed even bigger, the blue almost a crystal. Her smile was one of peace and joy. Skin as a baby’s. Hair like a small toddler, feathery, soft. Her hands were clumsy. And as the brain cancer grew more and more we would just sit and look into her eyes. Her beautiful eyes. Like infants seem to have seen everything and look so wise. This woman had been my mother, Bev to her friends. A woman known for her laughter, hard work and just never sitting still. Every few hours we lock eyes and I could see she knew me and to me that means she was aware of how our roles had changed, and her life tragically. She died with us by her side, at home. All day her eyes were saying something to me. Then, she was gone. My child/mother. 53.
My father looked like woodsman and army man should. Until heart and lung disease took over. And now I believe he had FTD, because I am emulating his mannerisms in his later years. His eyes too, became darker, more lashes grew and I knew he was pulling away from this life. Not the father I had known, a joker and teller of tall tales, compassionate, sentimental, generous, and fulfiller of Mom’s task lists that she created for him.
There are times of the year, I feel them most dearly; Christmas, Easter, their birthdays, anniversaries, Thanksgiving, summer visits. Often.
I now hear from you, my friends. We have followed similar paths, reversing our roles in order to care for them. One of the most humbling of acts between children and parents, wife or husband. No more running to them for advice, to share gossip with, or go shopping – the every day pieces of life begin to erode the patient and the caregiver into new patterns.
FTD removes their personality, and just as likely is molding ours. It’s not all peaceful moments for us. All the acceptable social behavior they had displayed thru their lives, begin to erode. Language, inappropriate comments, anger, weeping and what seems like on purpose to bring us to anger and frustration. That’s when we become strangers.
Now my children attempt to provide for me. When they call they don’t know if I am weeping with despair, or just weeping because I so loved them on the phone. I have this new temper threshold of 0 to 60. And in expressing what I want to say, I get frustrated and cannot complete any more conversation.
For all of you who care for your family member on top of all you do, you are specially loved by this community, by your God, even though you may feel alone but know we are with you.
If you are an FTD sufferer, we love you too, on these special occasions, just the way you are.
I know how hard it is for my family, and I know my needs will be even greater. Just keep searching their eyes, they are there. Might even bring out photos that brought you joy when they were active in your life.
Papa, are you there? It’s Vicki Keep us in your arms. Keep us warm & safe.
1 comments
In more and more families, the caregiving “baton” our parents had while nurturing and raising us is passed to their children who provide support and loving care to their parents. Especially when disease enters the picture. Good friends, too, come to their side. Thank you, Vicki, for sharing what it’s like to have provided care and now to accept your need to be understood in the midst of FTD.
Glen Campbell, a singer/songwriter we both remember, just announced he’s been diagnosed with Alzheimer’s type of dementia but plans to continue recording and hopes to make another tour this fall. These new lyrics which have a lot of meaning in his life now, and for us too:
In his new song, “A Better Place,” Glen Campbell sings, “I need the ones I love Lord/More and more each day.”
Jim