I knew today would be a bad day. In Casper parlance, it was going to be "One of them days." How did I know it? Yesterday was a good, but very, very, very long day. In Parkinson's Land a long day usually means a bad day to follow.
We left for graduation at 3:30 for a 6pm event. If it were up to her, we would have left at 3.
Parkinson's in known for lots of things, but especially anxiety reactions. In our house it comes out as leaving for everything early. I have become an expert at making it not so early so we don't arrive a day early. I tried moving the clock, but the stupid thing is smarter than I am and resets to real time. I am appalled- I need an early clock to make it to work on time, and it won't let me make it run late. I am considering making it run on Hawaii time just to normalize things.
So we arrive early, and we get to the handicapped section. My mom, as usual, is late. Casper is anxious. I finally send her ahead because I can see where she is going. I alert the kids to make sure she does not go further. When my mom finally arrives thirty minutes later we are all reunited in the special cage for the handicapped. As we walk in, one woman challenges us. She has decided she is the authority on who is handicapped. I can see what's coming. "Why are there FOUR of you? They told us no more than two!" (This section has a phenomenal view of the graduates. For me that was a nice surprise. We were there in that section because there was no way we were going to get up stadium steps safely.) "Who is handicapped?????" Now, in this section you have to preregister. The staff at the school know the diagnosis. Everyone there is pre-cleared. But now we have a self-appointed expert. She has X-Ray vision and can tell we do not belong. I work to make myself realize that being arrested will not be an asset to this evening.
"We have been cleared." Hoping that will shut her majesty up.
"I said, who else is handicapped. Else you can go in the stands."
Okay, it's on. "My husband has to use this chair. We have a right to be here." Goodie for you. He has some invisible handicap that is manifested in a wheelchair. How cool is that? We just have Parkinson's and Lewy Bodies growing in Casper's brain. You win- your husband is more handicapped. We have a Rollator in the car, and Casper should be using it, but she's not. That makes your spouse more handicapped. Awesome.
"We have 2 handicapped folks. That equals four people. Pretty simple, isn't it?" I smile while I want to reach out and touch someone. Casper has stopped listening. I am grateful.
She harrumphs, and pushes chairs around so nobody can sit in front of them but they take the seating for approximately 7 people. My mom, in her walker, is trying to make space for new arrivals, and Casper is trying to make space as well. our next door neighbor blocks them all.
After more than four hours of sitting, many tears, and the final cap throw, we head out to dinner, and finally get home at 10pm. That would be two full hours after Casper's bedtime. She can't even remember what meds to take in her med organizer. Chloe is oblivious. I am amazed that not once do I hear Casper ask to go home. She's so tired she can't eat her dinner, but admires Chloe's sushi anyway. You would never have known she hates fish. I help steady her to get in her pajamas. She can barely stand getting into bed.
So today she was in bed all day. She shook all day- head to toe, unable to walk normally. Unable to use her phone. And I could not get home from work because of drama created by an insurance company. I had to work late, then go to a neighborhood meeting. By the time I get home it's after 9pm. Casper is still shaking. She can't hold her cup. She can't remember her meds. She is afraid of what tomorrow holds. She so does not want to keep having days like this. She's afraid she will become too great a burden and I will abandon her, like so many other hospice patients we have both seen, Her hand closes around mine and squeezes like I have never felt before. I get it. We talk, although her words slur and she can't organize her thoughts.
I promise I will never ever leave her. She still looks afraid. There are so many people who are abandoned when they get sick. There are caregivers who used to be spouses and lovers and the love of someone's life who now have to wear multiple hats, and sometimes get stuck in the frustration of it all. It's hard sometimes- you remember the person who used to be, and sometimes still see them. But then you need to make sure they don't fall, or don't drive, or take their meds, and suddenly you are their caregiver and disciplinarian and parent figure. Then you are back to being a spouse, but so very tired and wanting them to be able to manage what they used to, and frustrated at how much both your lives have changed. It's a rollercoaster of expectations, and emotions, and energy demands, and hope and disappointment.
This is not what any caregiver spouse expected or signed up for. But those of us who mean those vows would never consider leaving. That's not an option. This is also not what our spouses wanted for their lives. They wanted to be busy, vital, active people. They wanted to support their families. They wanted walks on the beach and dancing and romance and long talks. But suddenly with Parkinson's they can't even walk without hesitation. They can't hold a cup. They can't remember things, like how to use a phone or a credit card. They feel useless and stupid, and they want their old life back. Then they hear well meaning people questioning whether they are really sick, or telling their spouse what a saint they are. This isn't sainthood. This is commitment, and love. I don't know any caregiver spouse who does not get tired and frustrated at times. I also don't know a single patient I have ever been around who wasn't angry at some point and didn't feel incredibly useless as diseases took hold. I've never met a patient who was willing to use a wheelchair the first time, or oxygen, or anything that made them"sicker" or more obvious.
As every caregiver spouse and patient spouse adjusts to their new additional roles, we have to remember what our previous roles were. Rekindle the feelings when we can. Not expect too much when it's not possible. In Parkinson's there is a particularly cruel component when your loved one's smile disappears. You look at them and they have the look in their eyes you remember, but there is no smile. I keep pictures around of Casper when she could smile, and I paste that thought in my head when I see those eyes, so the magic is there. Getting frustrated with her won't help, it will hurt her. My role is to carry the memory, so she's the reflection of that when she looks at me. My role when people are stupid about her disease is to protect her from the ugliness. My role when I get home at night is not to make her feel bad that she can't work. I've learned not to say anything like "Aren't you glad you don't have to deal with this?" Because she really would love to be at work. And our role is to keep the magic above it all. It's the same to me as people who tell adopted children that they are "lucky" to have the parents they do, or lucky to be adopted. My kids lost their birth families in that process (although we have gotten some of them back), They did not ask for the early stories that were their lives. They fell into it, and had to survive. And while I am blessed to be their mom, they are like any other child- they deserved a safe family. Those who face an illness that takes away part of their life, their abilities, who they were,... they are not "lucky" to have a spouse or a child or a family member to stand by them. They should have that. We all should. Being lucky in that implies that the caregiver really might at any point choose to walk away.
Caregivers are not saints. We are not special. We are loving spouses who have really discovered that in faith, hope, and love the greatest of those is love.
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