round two…

If you’re a regular reader of this blog, you know that for the past six months I have helped to take care of my mom part-time. She was diagnosed with progressive supranuclear palsy (PSP), a degenerative brain disease in the Parkinson’s family, last October after years of showing symptoms. Six months ago, my mom was accepted into a drug study at UCSD for a new drug currently undergoing clinical trials. The study was originally for 7 months, and at this point she only had one visit left at the end of August when the study would conclude. However, she was recently offered the opportunity to participate in an extension which would prolong the study for another 12 months. So, my mom will come stay with me once a month, every month, for the next year. When the extension finally concludes, the whole study will have been a year and a half – three times longer than originally thought.

I’m pleased she has the opportunity to participate in the extension. Although the expectations are low, if anything is going to save her life, it’s this drug. But when I signed up for this, I did so under the impression that I can handle anything for six months. And I can…I have. But it hasn’t been easy, and I’ve given up a part of my life to do it. I work less, eat less, sleep less, socialize less, and somehow because of the time with my mom, I smile more, laugh more, say ‘I love you’ more.

white flowerI started 2016 with the intention of treating it as a rebuilding year.  Last year was difficult for me, physically and emotionally, and it takes time to rebound. POTS symptoms don’t improve overnight, and I need time to to try new treatments, exercise, methods…whatever I can do to get back to where I was. So I was okay with a rebuilding year. However, with trying to care for someone else, “rebuilding” has felt more like six months of unraveling. The dose of beta blocker I take has quadrupled since this time last year. It’s physically exhausting caring for someone else, but it’s also very emotionally stressful. I can’t get sick while she’s here – I have to be able to get her to the appointment. If I don’t, she’s out. I have to be hyperaware and try to anticipate any potential pitfalls. Keeping her safe becomes my obsession during the time she’s with me. Worrying about how to be a better caregiver becomes my obsession when she’s not.

The week after she leaves, I spend resting and trying to recoup. The week before she arrives, I spend preparing for her arrival and trying to make up for the missed work/family time/domestic responsibilities I postpone while she’s here. And in between, I do what I can to take care of my health.

It’s surreal being on opposite sides of the same coin – I’m sick, but I’m also a caregiver. I find myself making the same judgments I know people make about me, saying the same insensitive shit I hear, and then I catch myself. I know better than that. I should be better than that. She sure as hell deserves better than that. It’s a learning experience, and I have been surprised to learn I’m not nearly as good of a caregiver as I should be. As I could be.

…As I will be.

At the same time I both love and hate this experience with every ounce of my soul. I treasure the shared moments, and the small reminders of how precious life is. I love having the time with my mom, even if she doesn’t seem much like my mom anymore. It’s gut-wrenching caring for a stranger that used to be my mother. But every once in a while, I get a glimpse of who she was, who she still is behind the mask of illness. In those touching moments, I pull out a little black book I keep with me at all times and make a note of something she said, a moment we shared, because I know someday those little tidbits will become useful for her eulogy.sunset over mountains

That’s the part I hate.

This experience generates an array of unexpected emotions, like fear over whether her illness and mine are related, and whether this experience is merely preparing me for my own future demise; or gratitude for the strangers who look at my mom, without judgment, with only sympathy and understanding that, although they don’t know what she used to be like, they know she wasn’t like this; or anger, because fuck the people who don’t look at her like that; or selfishness, because this isn’t about me.

I made it through six months, I can make it through another year. And in a year, I will emerge from this experience, wearied and broken, but purposeful, and finally ready to rebuild. And hopefully a better version of the person I am now. We go in for the first treatment of the extension tomorrow, and our one year countdown begins. Ring the fucking bell, let’s start round two.

“Life is short and all we have to offer, in the end, is love.” – Steve Almond

Smell ya later.
– Linds

4 Replies to “round two…”

  1. Linds I relate to every single word of this post. The bits about both needing care and being a caregiver. The bits about just having to get to appts no matter how I feel. The bits about your Mom not being the Mom you’ve known your whole life. The ups. The downs. I’m on year 5 of caring for my parents. I thought my Mom would be dead by now (half a lung, heart failure and kidney failure) but she’s hanging on in there. And of course now my Dad has Dementia and seems to be declining more rapidly than I imaged he would. I didn’t think I had it in me to do the whole caring thing for 5 years but you eventually find a new normal. I’ve had a couple of meltdowns and a HUGE re-evaluation of my life but I’ve found my groove and I cope. Who knew middle age was going to be this tough?! Jak x

  2. I’ve taken care of a couple of patients with PSP when I was still working as an RN. Really lousy disease.

    I know what you mean about having to recover when taking care of someone. My dad was in the hospital for a month before he died on April 4th. Normally, I leave home once or twice a month- and that’s hard. I’ve been out and around way too much, and my body is falling apart. I’m finally moving into his home (I lived there as a teenager through nursing school) after some updates/repairs. And I’m SO tired. It’s been four constant months of either hospital visits, making funeral arrangements, dealing with the business end of death , and then the house. I have a severe intolerance to heat, and after this craziness, I think this is the last summer I’ll be able to be away from home during the day. I’m not sure what I’ll do if I have to make appointments. I guess nothing from May through August. Today, I’ll go over to the house to pick up the air splints for my feet- they’re wrecked after being up so much.

  3. i’m so sorry to hear about your dad! taking care of end of life arrangements and the aftermath of death is like a full-time job, i can imagine how exhausting that must be for you.

    i have a difficult time with heat, too. we had a couple of crazy hot days over here last month, but otherwise it has been a rather mild summer thus far. unfortunately, our hottest months are usually august and september. i’m sorry to hear you’ve been going through all that!

  4. Best of luck with the year ahead Linds. It’s not easy being a carer when you are not well yourself. I’m glad you are pacing and taking care of yourself to help you get through it. I think that knowing our bodies and limits and listening to them is the best thing we can do through tough times like this. I home schooled my child for 18 months recently and although it was tough and exhausting, mostly because of the psychological effect it had on me as a mum having my child go through the issues he had that prevented him going to school, it was also a good distraction (and company) while I was home unwell. It’s like having a purpose like this, as much as we would rather not!, helps pull you through your own misery, somehow…?

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