Grief

Fear, Grief, Parkinson's Disease

Anyone who has read my previous post about my mom (Letting Go of Knowing Why When Loved Ones are Sick) knows that she has Parkinson’s disease (PD to those of us now familiar with it). PD has all the terrible symptoms  one thinks of: with tremors throughout her body and “freezing up,” or the inability to walk because that connection from her brain to her feet just won’t work sometimes. But the hardest part of this illness, at least to my brother and me, is the dementia and the decline of her cognitive functioning. Like Alzheimer’s, Parkinson’s causes a person’s mind to slowly slip away. Lately, it’s become worse. The progression of the disease, along with a urinary tract infection that led to sepsis and put her in the hospital, seems to have made her “good days” become far fewer than her “bad days,” when she mumbles incoherently or thinks her walker is the portable commode.

My brother and I usually try to make light of her condition, attempting to find the humor in things, like when she kept referring to the physical therapist as the “power girl” (“when is the power girl coming over?”) or when she asked me very seriously if I had in my “possession two pounds of white See’s candy that looks like pajamas,” (I answered “No, sorry, I don’t” to that one). We don’t laugh at her or her condition, but we cope by finding humor in the absurdity of it all and marveling at the frightening and amazing human brain.

Yet, in other instances, we need to talk her off a metaphorical ledge and try to bring her into our current reality, like when she calls very concerned saying, “Dad died, will you take me to the funeral?” and I have to tell her that her dad died over twenty-five years ago. Then when she questions “well, who died?” and I tell her “no one died, Mom, you’re okay,” she is never fully reassured by this, and neither am I. We don’t know how we can help her, and unfortunately, there is not much we can do at this point, except talk to her and visit her. This brings me to the title of this post, “Progressive Disease Never Gets Easier – and I’m a Wimp,” because it is becoming harder and harder to visit her and try to act like everything is normal and okay while I’m there.  In my previous post I wrote, “So, instead, we will continue to visit her regardless of her current state that day. We’ll stick by her, even when the disease takes it all, not knowing the reason why and just letting the idea of fair gmom_julieo… As we painfully watch we will hope that our presence will make it easier on my mom, the one, in the end, who is suffering the most.” Those words seem hypocritical now because I don’t look forward to seeing her and it’s hard to show-up with a smile. With two busy young kids in sports and other activities it is easy to let time slip by with practices or games and realize that I have not visited my mom in awhile. That fact makes me feel guilty, which makes me avoid the visit, which makes me guiltier, and so it goes.

We’ve all seen or read about families who leave their parents or loved ones to rot away in a nursing home or retirement place, never visiting, or doing so once a year for twenty minutes. I always thought they were uncaring jerks and questioned how people could do that to “their own parents!” but maybe now I see why a little more clearly. Maybe it’s just too hard and they can’t face seeing their loved one turn from a “normal” person to a nearly unrecognizable shell of who they once were. It’s agonizing to watch and too painful to accept, so they don’t. They hide, pop up once a year, and retreat back to their own world where this reality doesn’t exist. I get it and oftentimes would like to do the same, but I don’t. And yet, I could do more.  My brother calls my mom once a day and drives up to visit her once a month regardless of what is going on in his life. His strength and fortitude far exceed mine.

But pain is no excuse, at least not a good one. Just because it’s difficult does not mean it’s acceptable to avoid it. The truth in this situation is that I can’t come to a full acceptance of her progressive disease because the disease keeps changing, so once I accept it, the disease has progressed and my mom can’t remember what day it is; a short time later, I must now accept that she thinks See’s candy looks like pajamas. It does not stop until the disease stops, and then she is no longer here. There is no good answer or solution; and it seems near impossible to look for a bright side or some positive way to view it all. Sometimes, I’m realizing, it’s best to keep your head down and keep moving forward, to show-up while staying the course, be it a progressive disease or a marathon with an unknown end.

Grief, Illness, Kids, Parenting

My mom has Parkinson’s disease, yes that same one as Michael J Fox, and unless you read his books or know someone who has it, most may not realize what a terrible disease it is. It’s more than tremors or a shaky hand reaching for something. It will make my mom fall apart in the middle of a store, unable to move, frozen in her tracks, and she will be forced to take tiny baby steps in a confused state as people whip past her, annoyed at this slow old lady. It’s the realization that she now wets the bed every night because the disease is forcing her bladder to contract, so while she sleeps she unknowingly urinates. It’s slowly taking her mind and memories away due to the dementia side of the illness. And someday, as the progressive disease takes its toll, she will be unable to do anything on her own: eat, walk, talk, use the bathroom, enjoy her grandchildren, the disease will have taken it all.

My husband, my brother, and I watch this progression grimly. Rationally we understand the disease, it slowly cuts off her serotonin and other neurotransmitters so that the needed connections to move don’t readily work (that is putting it very simply). You lose control over that connection in which your brain tells your body what to do. We also know that there is no cure; medications can only help with the symptoms of the disease as it gets gradually worse. And the kicker is that the long term side effect of the main medication she takes ultimately leads to uncontrollable movements – just like her disease.

When she first got diagnosed I knew almost nothing about Parkinson’s disease. Like most people, I just thought it would make her hand shaky as she reached for the salt at the dinner table. Since I always think that understanding something and arming oneself with knowledge is the best route, I researched the disease. I found out what happens in the brain and what will ultimately happen as time goes by. It was a difficult read. As I grappled with her doomed fate, I cried a lot, and asked “Why? Why is this happening to her?” This is a woman who wouldn’t hurt a soul. She was a bank teller, raised her kids, learned to live her own life after divorce, and was always present for her family – why is something so terrible happening to her, I questioned. Then, I inevitably went through the “It’s not fair!” side of it, because it wasn’t. Why is my mom, a nice person, a model (more or less) human being, sentenced to this disease when child-molesting perverts, rapists, and jerks who scam old people get to lead healthy lives? It’s not fair! I angrily thought to myself.

And, no, it isn’t fair. That is true. But this isn’t about what is fair. That is just my way of caring and being angry about her illness. I know there isn’t some being in the universe, handing out punishments to bad people and rewarding the good. That is obvious by all the pain and anguish in the world. So, fair has nothing to do with it. And in the end, neither does the why. Why does she have this disease, why did she get it instead of someone else? It doesn’t matter why she has it, she does. And someone else has it too, approximately one million people in the US alone have Parkinson’s disease.

So, as hard as it is, I need to let these things go. Whenever we are faced with adversity or pain or tragedy, we often point to the why (and the government and news point to the who – as in, who is to blame for this). Then when the why (or who) isn’t answered, or even if it is, we go to the fairness of it all – and when is it ever fair? In the midst of something terrible nothing seems fair.

So I have learned to let these two things go most days and just accept that she has a terminal disease, and it’s not going away. Some days are good for her, others aren’t,

My mom in the '80's, before her disease.
My mom in the ’80’s, before her disease.

and it will get worse, but we are dealing with that as it happens. That is all. Is that easy? Definitely not. No one can watch someone get worse in tiny increments and think, “oh it’s okay, it will be okay” because it’s not. I cannot hide behind the false idea that “she’ll be okay” because she won’t.

The hard part lately is when my eight-year-old daughter said, “I wish we could take Nana’s disease and give it to someone else.”   It made me realize how my very-aware daughter is witnessing this too, and how difficult it must be for her as well. I just said, “I know, I understand, but we can’t.” “But it’s not fair!” she said emphatically. “No, it isn’t,” I said, “I agree, but it’s the disease she has.”  I can’t fix it or shield my daughter from her grandmother’s disease. None of us can. So, instead, we will continue to visit her regardless of her current state that day. We’ll stick by her, even when the disease takes it all, not knowing the reason why and just letting the idea of fair go. It doesn’t have a place here even if we want it to.  As we painfully watch we will hope that our presence will make it easier on my mom, the one, in the end, who is suffering the most.