This is Parkinson's

I am a wife and mother to two teenage sons, a full-time worker (and breadwinner) and now I am a caregiver. My husband was recently diagnosed with Parkinson’s disease and Parkinson’s dementia. He is already in the middle stages of each.

He needs assistance with daily activities and grooming. He can no longer contribute to household chores. Once a Chef/Owner of a restaurant for 20 years, I now cut his food for him. I trim his beard, eyebrows, and toenails. I apply his trans-dermal medicine patch every morning and I clean the sticky residue from the patches off his body. I help button his shirt, flatten his collar, and put on his belt. I make his lunch and help him zipper-close his lunch bag.

My day as a caregiver

My day starts with lying awake in bed, listening to the sound of him in the shower. Once I hear the water turn off, I go downstairs and wait to apply his patch. I then shower and go back downstairs to help with his shirt and belt and tuck his wallet into his back pocket. I go to work for 8 hours or more and worry about him all day. Will he lose his wallet? Will he get in an accident? Will he drool in front of co-workers or clients? I come home, get changed and cook dinner. I make his plate, help him cut his food, unload the dishwasher, reload the dishwasher, clean the kitchen, and make our lunches for the next day. Then I water the plants, take care of any paperwork, bills, fill out forms, sign things for him as he can barely write anything anymore, put away laundry, and then finally around 7-7:30, I can sit down.

All the while I am answering the questions he has asked three times already. I am watching him look at me with utter confusion and blank stares. I am helping him type a text message to a customer or his boss. I am answering my own work emails. I am planning the menu for next week, making the grocery list and the chore list, looking at my work schedule, his appointments, the boy’s schedules and stressing over how it will all get done. I am googling things like “how to apply for Disability”, “how to manage drooling in Parkinson’s”, “what is Stage 4 of Parkinson’s like”, “Parkinson’s support groups in my area”, “is it hard to change a toilet seat”, “how do you remove oil stains from asphalt”.

Confusion and exhaustion

There is very little conversation, very few words shared between us as we sit on the couch in the evenings. His voice is very soft and weak, and his verbal output is quite diminished. When I talk to him, share a story about my day, he either does not respond, or he says, “Is that right?” At this point in the day, he is exhausted. I am too.

I watch him struggle and shake to raise himself off the couch. I watch him shuffle about at a snail’s pace, dragging his right foot. I usually need to help him get a snack, open a bag, twist a jar cap off, peel back a film. He is often confused by which son is which, which one is home, which one is out. He may obsessively ask what time one of the boys is coming home. By 8:30, he is usually asleep on the couch. I let him sleep for a bit then gently encourage him to go to bed. He does not argue. Is he trying to stay awake that long to keep me company?

Lie awake wondering

I lie awake at 3 a.m. wondering who will help take the AC units out of the windows. Who would be willing to help me change a toilet seat about to fall off? How long before he can no longer navigate the stairs in our house, and we need to move? Can we make it until the youngest has graduated high school? Buy or rent? Do I have enough for a down payment? Is my credit good enough to get a mortgage? When our youngest goes to college, who will mow the lawn? Can I afford to hire someone to do it? How will I pay for home healthcare when the time comes? What happens when he can no longer work? Can my income alone pay the bills? Will the boys understand lean Christmases and birthdays?

How is this truly affecting them? I see the looks of concern from the oldest and the youngest keeps his head down at the dinner table but is helpful when asked. Do they brush this off with their friends? Are they embarrassed when they must explain it to someone? How much longer do I have to keep this a secret from my friends? From his friends?

I didn't know

There is no time to read, walk, go to the beach, take a hike, go on photo expeditions, take yoga, or do any of the things that bring joy and relaxation. I do not have time to call friends or go out with them. I feel guilty for not calling my mother more, not being a better daughter, sister, friend. At the end of each day, there is nothing left over, no gas in the tank, no time to relax, no space left in my brain for new knowledge, no room left in my heart for anything other than love and anxiety and guilt.

How did I not notice these things happening to him? Instead of convincing myself he was being such a total jerk when he forgot my birthday or that his inability to perform any task requiring use of his executive functions was being done purposefully, I should have been more insistent and persistent about him seeing a doctor. I knew something was not right, but I did not know what was wrong. I did not know what I was watching, the slowing down, the significant changes to his personality. I know I could not have stopped these diseases or slowed their progression but knowing that does not stop the guilt from welling inside me.

There is anxiety over what is to come. Loss of job, loss of income, loss of more movement and dexterity, loss of memory. What will happen when he does not know who I am or who the boys are? How will I make sure he is staying at home and not wandering off when I am at work? What happens if he falls when I am not home? What about choking? I am too small to effectively preform a choke save on him. What if he chokes while I am not home?

The difficulty of acceptance

There is sadness as we accept our new “normal”. There will be no more vacations, weekend getaways. He will not be able to go on college tours or help with move-in day. Trips to restaurants will turn into take-out as he struggles to lift a fork to his mouth. How will he get down to the football field to watch our youngest graduate? So many things that once brought him joy, now bring sadness with the realization he cannot do them anymore, such as swimming and golf and photography, going for beach walks, cooking. We are still learning what he can and cannot do.

He loves listening to music, playing virtual Chess, watching Jeopardy, Food Network, true crime documentaries, and old tv shows from his childhood. He loves good food. He loves his young nephews. He loves his children. His voice is very small and weak, and I have to say “what?” all the time. He thanks me a lot. He tells me I am beautiful. He tells me he loves me often. He tries to hug me. He lifts his arms as high as he can and I step into their openness. He tries to close the hug, make it tight, but it is barely there. It is enough for me to put my arms around him and rest my head against his chest. How much longer do I get to do this? How much longer will I hear his heartbeat?

I lose my patience sometimes. Sometimes, I do not realize I have asked something of him that he is not capable of anymore. I cry in front of him sometimes. I get irritated and annoyed sometimes.

I have lost my dinner date, drinking buddy, shopping partner, errand runner, administrative task handler, concert goer, game player, sport spectator, movie watcher, chore-helper, dancing fool, walk-taker, sea glass hunter, hiking partner, grill master, chef, partner, friend, husband.

I am 44 years old. He is 59. This is Parkinson’s.