LindsayIf you have followed this blog for a while, you know that my mom and I are study participants in a clinical trial for a new drug at the local research university here (you can read about it in my job interview post and here). My mom, who has a degenerative brain disease called Progressive Supranuclear Palsy (PSP), receives an experimental drug via infusion once a month. The university conducts regular tests to measure the efficacy of the drug and ensure she doesn’t have any reactions. I’m part of the study as her caregiver. My job is to handle all the administrative tasks for her appointments, like scheduling travel, coordinating appointment times, accompanying her to appointments and sitting with her during the visit, and answering a buttload of questions about her symptoms, her abilities, and whether I have seen any changes due to the infusions.
My mom doesn’t live in my city, so I also take care of her while she’s in town. Lately she only needs to come for a few days every couple of months, but at the beginning of the study, over 18 months ago, she came to town multiple times per month, for up to 10 days at a time. She was scheduled to be here this week for the infusion, but had a nasty fall last week and ended up in the hospital. After she was discharged from the hospital, she was sent to a rehabilitation center and has been there for almost two weeks now. Needless to say, she missed her trip here. After a long discussion, my sister and I decided it’s best if we remove my mom from the drug study. It’s just too difficult for her to travel, even with all of the accommodations airports/airlines provide.
So, that’s it. We’re out. My involvement as a caregiver participant in the clinical study is officially over. Our withdrawal from the study fills me with sorrow. I will miss all of the people we have met through the program, including all of the wonderful nurses and study coordinators who always took such great care of my mom. When you spend 6-8 hours with people every month for 18 months, they become a steady presence in your life. Other than the BF and my co-workers, I spent more time with the PSP clinical study staff than with anyone else. I will miss our discussions about our families, baseball, dogs (duh), and life with illness.
I’m sad I will not see my mom as often. Naturally, I will begin to make more trips to my hometown to spend time with her now that she won’t be coming here for the study any longer. Or, sadly, probably ever again. I feel guilty for not showing her the ocean one last time, or for not taking her somewhere new. Over the past 18 months, she has become the central figure in my life, even though she’s not the mother I once knew. Even with our roles reversed, I always looked forward to the time each month when being a daughter became my most important role. It was both the most exhausting and the most rewarding job I have ever had.
But most of all, I am sad for my mom. As long as we were in the study, there was hope that the experimental drug could be the solution to PSP and would stop the progression of the disease. Even if we didn’t see improvement, it was easy to convince ourselves that the data would show otherwise; that it was working, and we didn’t have enough distance to recognize that. Until we receive the results of the study, we won’t know for sure.
Without the experimental drug, that hope is squashed. We’re not at the end yet, but I worry we might be at the beginning of the end. My mom will die an early death. That’s difficult to say out loud, and even harder to accept. At this point, without the drug, it’s inevitable. Maybe it was inevitable from the beginning.
Hope is a very powerful thing. Without it, we’re just grasping at invisible straws. Hope is why I have a drawer full of vitamins and supplements that I read in an article can help relieve this symptom, or cure that one. I know it’s bullshit. I know it’s probably a waste of money. I know in the end all I am left with is a drawer full of disappointment and my illness. But what if I’m wrong? What if one of those pills, buried in the bottom of the drawer, is a game-changer? And what if this drug was stopping her progression?
Without hope, what does it matter? What difference does it make if my mom dies tomorrow, or two years from now, if either way, the end result is the same? The answer, friends, is that it doesn’t matter. Not one of us is guaranteed a tomorrow. So, we stare at the sunset a little longer, hold hands a little tighter, breathe deeper, walk farther, whisper more, smile harder, find the quiet space, and love without bounds.
Because every job ends, sooner or later.
“When all is said and done, we’re really just walking each other home.” – Ram Das
Smell ya later.
– Linds
Big hugs. I’m so sorry you’ve had to pull out of the trial and everything that implies. Too exhausted to write more as my Mum was rushed into hospital this week so I’ve been doing the 120 mile round trip every day (!), but I just wanted you to know I’m thinking of you. Being a Carer when you’re also sick yourself is bloody hard work, yet you feel like you’re also giving back all the care your Mum has given you over your lifetime. You are so right about hope, but I don’t think this will end despite your Mum no longer being part of the trial. I know my Mum is terminally ill, but I wake up each morning with the hope that I will just have one more day/week/month/year with her and it’s that hope that keeps me going x
Thanks, Jak! I know you can understand and relate, with taking care of your parents. It’s tough. You make a great point – I do have the hope that my mom and I will have more time together.
<3 <3 <3 Sending gentle hugs and your favourite comfort drink through the computer screen!
Thank you!
This must have been such a hard post to write, you have been very open in sharing. I’m so sorry your mum has had to leave the study, but I do hope she’s able to recover well from the fall and not have the added pressures involved with travel and the study itself. I think that hope is a strange thing, because even if it’s elusive and unlikely, we still want it. Every moment counts and even though this may feel like the beginning of the end, it’s just a different path for now… Sending my best wishes and hugs your way ♥
Caz x
Thank you! It’s hard – we depend so much on hope! I’m not sure we could function without it, which is why we just have to search for other things to be hopeful about. There’s always hope, right?
Always! 🙂
Oh Lindsay… Big long hugs. Include the dog to make it sweeter…. I expected funny, as per usual, and was reading it aloud to Andrew, as is our custom. Suddenly I couldn’t speak. Andrew, who lost his mother when she was 49, was silent and trying hard not to sniffle. I just want to say that your mom has been very privileged to have you for a daughter. And sounds like you have a pretty awesome mom. The time you’ve had, and still have, will never be forgotten and will live in your heart forever.
My mom is 81, and it’s hitting me that the years are getting shorter, even though she’s healthy.
I sobbed throughout the rest of your blog entry, pausing frequently as I couldn’t speak.
My oldest son and my daughter don’t have this kind of care for me. I can’t do anything right in their eyes since they each turned 28 about 5 years ago. No one will tell me what I did. But I think they don’t want a sick mom :'(
I never hear from them and if I call I end up in tears as I’m yelled at.
I would give anything to have a tiny bit of time being loved by my 2 oldest kids the way your mom is loved by you! I love how you both appreciate your relationship and treasure each other and time together! Mine literally don’t talk to me. I’m forbidden to text my daughter. And she has my 18 month old grandson! I feel the loss in the bottom of my gut, and we’re still all alive!! Such a waste of time!! I cry until I’m dry. I’m just grateful for my baby, Scott, 30! And his fiancee. They love me infinitely, and we talk freely. I’m so lucky to have them.
Like you and your mom love each other!!!
Unconditionally.
Forever.
Eternally.
Without end.
Because love never dies, Linds.
We love you too, and you are deep in our thoughts and hearts…
Stacy and Andrew
I’m so sorry to hear that your relationship with your kids still has not improved. It’s so difficult to understand why some family members abandon each other, especially when one is sick. We need more love and support when sick! It’s hard watching my mom decline, and it’s hard to imagine she’s the same woman that raised me, but she is, and I love the woman she once was and I love the woman she is now. I’m sure your oldest kids love you just as much as they always have, they just may not know how to deal with it all. I hope they figure it out soon, though, because otherwise they’re going to be left with a mountain of regret.
So true, Lindsay. And regret can tear your heart out! You are such a loving daughter, and person, you won’t have those regrets. Bless you and your mom, Linds!!!
Love always, Stacy
I am so sorry. Your story tears at my heart. Wonderful things do happen in this world so please don’t lose hope.