About a month ago I came home from work to find my father sitting in my driveway running his car. It took him awhile to roll down the window to talk to me because he had forgotten how and I had to shout out directions again on how to operate it. Once the window was down, he told me “they” and he gestured to the back and very empty seat “are paying me to drive them around town. We are going to visit the Hunts.”
“You mean us dad?” I asked.
“No” he said, “the other Hunts, you know in Montrose.”
“Oh no dad, you are not driving to Montrose.” And I proceeded to gently remind him again that there were no other people in the car with him. He turned around in exasperation, rolled up the window, and hurriedly drove off. The next week, the doctor took away his ability to drive.
You see, almost every day our life is filled with incidences like these. What began as simple confusion over dates, times, and addresses has become full out hallucinations regarding visitors in his house, two little girls who refuse to leave his car, and imagined transgressions that our children have done, such as his belief that our 13 year old autistic child is drinking his beer. Which according to him is fine as long as our son pays him $50. (I had to tell my dad he is no longer allowed to admonish my children, something I never thought I would have to do.)
Last year at this time, my mom was dying. We had no idea of what awaited us – how meticulously she cared for my father. How much she must have been hiding from the world even in her sickness. Within about a month of mom’s death, the reality of how much care my father needed started to set in for us. This level of care has grown exponentially over the last few months and has been compounded with the loss of his ability to drive. Now, we finally have a formal diagnosis. This is Lewy Body Dementia.
And, its not just dad, its an extra household to manage with an extra set of bills, two extra cars to maintain, a slew of doctors appointments to schedule and go to. And honestly, those are the easy parts. It’s the day in day out of feeding and caring that takes a heavy toll on people already spread too thin. We will admit it. Some days we feel like our life, as we knew it was hijacked and no, we didn’t see it coming. Honestly, at this point we can’t leave him for a full day so even something like going to the museum as a family has become impossible.
One of the most surprising things about this is that we have run into people in all walks of life who have the same predicament. I don’t think it ever occurred to me how many people are the primary caregivers to both their kids and aging parents. Often, their words of encouragement and just saying, “Yep, this is how I dealt with that issue,” are some of the greatest advice we have gotten.
One of the greatest pieces of advice that we are finally listening to is that, we need help and it is okay to ask for that help. We got a wonderful break last week when my sister came and flew him back to Minneapolis for a whole week. And, I am sure this break was great for dad too! We now have some home health care people on line to start in January. I can’t do it all. I have limits and honestly, my kids need me too. It is time to start utilizing the services around us.
I have watched my whole family change as we have all taken on this caregiver role. I have watched my son become a boy who is willing to take his grandfather aside and be sure he has the food he needs and have quiet patient conversations with him. I have watched my 9 year old daughter go over to her grandfather’s house and make him peanut butter and jelly sandwiches for lunch, being sure the whole time that he feels needed as her “babysitter.”
And sometimes, when things just get going crazy and the stress of life seems to much, this new care giving role forces us to slow down and remember. I have to remember that this is still my dad:
My dad who honestly gives the best father toasts at weddings ever, just ask anyone at my sister’s wedding or mine.
- My dad who helped three teen girls create an amazing Rube Goldberg device out of toys and a hair dryer. We won second place in that physics class. I honestly cried when I saw the now controversial “Girls” commercial the other day because it brought back those memories.
- My dad who in an attempt to carve a space for a dishwasher in a 1901 bungalow instead helped to create an entire new kitchen in his daughter’s first home.
- My dad who keeps a newspaper article in the bottom of a drawer detailing a high-speed chase with a cop and unknown suspect that was never caught. Yep, my dad was the suspect.
- My dad who used to wake-up his two sleeping daughters with a saxophone that he loved to play.
- My dad who took my little sister to work with him to service sub-pump stations. One was flooded and he had her sit outside to keep her safe while he worked to drain it the whole time calling up to her to check on her. “I think he told me not to tell mom,” she said.
- My dad who meticulously took down a beast of a jungle gym for his grandkids and rebuilt it perfectly when we moved.
- My dad who became his grandson’s #1 fan as he carted him to swim practices and competitions.
I could keep going on but, the point is I have to remember that the disease, Lewy Body Dementia, is just a disease. It does not represent who my dad is and who he is to us. And, as he further slides into a state in which he forgets who he is, we have to be the keepers of stories now. We have to remember who he is and carry that with us even as our role with him rapidly changes.
Lazlo and Amy Hunt both helped to write this blog post.