In the last few years I have become extremely familiar with the words fear, frustration, anger, confusion, depression, paranoia and aggression. They are both warning signs and symptoms of dementia. The progression of this disease can vary widely depending on many factors and we are “lucky.” The progression of my father’s dementia has been slow. Of course to his primary caregiver, my mother, I am sure it feels different than slow and lucky.
The luck part comes in that he still knows who we are, he knows how to drive, how to go to the store and get back home. He can still do many of the things he used to do and to the average person in his life he seems fairly unaffected. Most don’t even know he has been diagnosed. That’s just one of the strange and frustrating parts of the disease. For the “lucky,” subtle changes over time can be overlooked, missed or even explained away. No one knows that while he can get to the store himself, he calls home 5 times to be reminded what he went for or to be reassured he is getting the right thing on the list. No one knows that banking and bill paying are inconceivable notions anymore; that organizing his own pills will very soon be a thing of the past and so may be many more things that have allowed him to still feel independent. No one knows that for a few minutes the other day he couldn’t remember his grand-daughters name until I told him. No one also knows that my fun loving dad is now quick to anger, long to forgive, paranoid and afraid every day. No joke he can tell can hide that.
To our immediate family, these changes are enormous, baffling and sometimes inexplicable. It’s tough to explain to even my husband that my dad wouldn’t have done what he just did 10 years ago. My husband did not know him 10 years ago; he will never meet the dad I knew growing up. My daughter is only a toddler, she will never know her Papa without dementia. To her he is all kisses and hugs, tractor rides and front porch swings; but I had a grandfather with Alzheimer’s, I know what she will see as time goes on.
To my mother these changes mean everything. Every forgotten task is one more for her to do. Every frustration taken out on her is wound on her heart. Every frustration she has with him is an unbearable guilt. This was not the life plan; not the way retirement was supposed to be. They are reminders of all the things they will not get to do or see and all the memories they won’t make. Reminders that the memories they have made together in their 40+ years will one day be hers and hers alone.
In time there will be family discussions and family decisions. There will be long days of helping care for him and caring for my mom. There will be explanations and excuses to his grandkids and feelings of anger and unfairness by his own kids. There will be days of lucidity and days of confusion. Still right now, we are “lucky.”
So, we spend a lot of time with my parents these days. We spend summer days sitting on the deck and talking. We swim in the pond and my daughter helps Granny with her garden. We spend fall watching movies, picking the pumpkins they grow and eating everything my mom bakes. It helps to give her a break and a distraction. It helps me as I am trying to soak up every minute for myself so I will remember all the little things that make him my dad. I know he’s doing the same; reminding me how much he loves me all the time and how proud he is of me. Telling me how grateful he is for all the time with my daughter.
Lastly it helps my need to somehow imprint on my daughter all the fun and spoiling and love that she may miss as she grows older and he grows sicker. We take pictures and videos but I need her to somehow inherently feel how loved she is by him and how much he wants to be here for her first day of school, her dance recitals and her graduation. I hope that the light twinkling in her eyes when she sees her Papa means her soul will remember.