Parents. My parents, your parents, all our parents are getting older and it is a challenging time for sure. In many cases, it really sucks. When did this happen and why did no one warn me about this? I read books and more books about breastfeeding, tummy time, and sleep schedules but have been left floundering in the wind trying to figure out the best way to take care of my aging parents. I have fantastic siblings, don’t get me wrong; we are all in this together.
Furthermore, everyone I seem to be talking to these days has their own parental issues. From heart disease to strokes, accidental falls, to total knee replacements, it is swarming around us like bees to a hive. And even as a collective group, we don’t know if we are doing the “right thing.” There is no how-to manual for dealing with aging parents. (I am sure there is, but in all my free time, I haven’t spent the hours reading reviews and perusing Barnes & Noble.) Maybe I should add it to my ever growing to do list and write a self-help book on taking care of our crazy, loon ball, stubborn, set in their ways, still commanding respect because they are our parents yet acting like three year olds, parents. I could make a fortune!
We all struggle with this to some degree. How do we take care of someone who has always taken care of us? What is the best path to take when they can’t make it on their own? What answer needs a firm “no” and what is ok to let slide? When is it time to step in and be the parent to your parents? So many questions and no solid answer.
Let me take you back in time to mid 2018 when my mom still lived at home. My mom was 78 and was diagnosed with Alzheimer’s in 2017. She was in the full-blown moderate stage at this time. When I say it was crazy town, I am in no way exaggerating. My dad was 80 at the time and showed great patience with her. He was loving and kind, but her constant need, constant questioning, lack of safety awareness, and his need to be aware of her every second was too much. Then add the sundowning, the fighting about a simple thing like taking a shower, the 24/7 shadow of her by his side all day long added even more stress and tension. It is too much for anyone. To top it off, he too is aging. He is very type A personality and likes to have things done his way. He always knows best, regardless of others’ professional backgrounds and education. Let’s just say his personality comes with its own host of issues and struggles.
We definitely struggled through those few years between diagnosis and placement into a memory care facility. We had in-home private pay caregivers. I was a secondary caregiver along with my siblings, and my dad was the primary caregiver. As a family, we came to the decision to place our mom in a memory care facility. Getting to this decision was a windy road with many ups and downs. There were family meetings and visits, OT and PT (that’s me), caregivers, articles read, books read, and doctor visits. As a family we worked to keep the lines of communication open and honest. We worked to support dad and mom as this disease progresses. Did we do everything perfectly, of course not. I am not sure I even know what that would look like. But eventually, with this disease, there comes the point when you just can’t do it alone anymore. You need help and lots of it. You need cameras in the hallways, aids, nurses, activities, and meals. You need a facility equipped to handle this disease and a staff that understands what is happening.
Jeez, that sucks Jodie. Yep, it does. And it’s like many things in life. Until you are in it you can’t fully appreciate what someone is going through. Until it happens to you, you cannot fathom the hardship. (Think midnight feedings, vomiting children, death of a parent, etc.) To no one’s fault, until you experience this disease firsthand, it is hard to wrap your head around all that it encompasses. Even though I deal with dementia and brain-injured patients all the time for my job, when you are in it on a personal level, things are so different. I love old people, all kinds and the crazier, the better. But when it is happening to you, your lens for this disease is magnified. Of course, every Alzheimer’s patient is different, but the telltale signs are something special. For example, filling your eyebrows in with a blue Sharpie because you think it is your eyebrow pencil, hiding ice cream behind your pillow because you know that you aren’t supposed to eat it, putting ranch dressing in your coffee because that is “how you have done it for years.” And the list goes on. You have to laugh because honestly, you can’t make this up, and if you don’t laugh, you will spiral into a deep depression.
Memories are gone, long tucked away and never to be seen again. Things that she cared so deeply about are forgotten and brushed off. Nails that were once manicured to perfection and hair coiffed are now left unattended for days to weeks. And clothing that once was an envy to all, is now miss-matched or discarded as ugly or unwearable.
And it only gets worse. There is no cure. There is not one survivor of this disease. I will write that again; not one single person has ever survived. Think about that when you think of heart disease or cancer and the enormous number of survivors you know. Don’t get me wrong, we are all going to die. Yep, sad but so true, all of us will go from one thing or another. But to watch your parents change before your eyes is something I was not prepared for ten years ago. Honestly, I am not sure I will ever be ok with it.
So, where does this leave me? Well, I hope that it helps me to suck up my pride and admit to my husband or children when I have a problem. To get screened and evaluated when I can, to work on my diet, and keep up with the latest research. This journey has definitely brought my relationship with my father to a new level. A relationship that is honest and direct, loving and stern, companionate and vulnerable. It has given me empathy for all those that have come before me on this road, whether a caregiver, friend, daughter, son, or spouse. It has opened doors of strength I never knew I had. It has also made me cry so profoundly it takes my breath away. It has brought me and my siblings even closer than we were and allowed for new relationships and roles to form. It has made me very ok with asking for help, listening, and following instead of leading. (That’s a hard one for those that know me well.) And it has brought me to The Caregiver Club®. This organization, its mission, and its future would not be here if it weren’t for my struggles with this disease.
Maybe I should hit Barnes & Noble for the latest trend of parenting parents or just continue writing to you all about this journey I am on with my mom. Probably a little of both. To those of you struggling with your parents, whatever the burden may be, know you are not alone. I am here and there are so many others out there deep in the trenches right alongside you. I pray for you, as I know my fantastic following is praying for me. Continue to find humor when you can, joy in the small moments of peace, and surrender your worrying to God. It’s the best we can do.
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