The smell of spring

I heard the geese making their overhead pilgrimage today, and the snow’s melting is finally outpacing its stubborn attempts to keep descending from above every time we dare think that winter might be passing.

The political ice in our state, Wisconsin, is still rock hard.  But protesters of all races, religions, and political parties continue to show up at the capitol each day and night, standing up for the rights of children, seniors, and working-class people, resolute in the belief that saving our historical political vision of an open dialogue of compromise will resolve our state budget issues in a way we all can live with, preserving the legacy of inclusive democracy in this state and our wider nation.

Elders of all political parties working together for the common good.

Carol Jean, my mother, had a novel start to this month after a major med change.  She’s been leaving her room to join her fellow residents (she’s finally stopped calling them “inmates”!) for activities and community outings once a week- something formerly unheard of. 

When unforseen changes like this bloom out of nowhere for Mom and shock me out of my dark and sometimes stagnant view of her future, I can easily snap into the opposite, equally distorted point of view, drunken with hope, wanting to believe that she’s over the hump, that her doctors have cracked the neurotransmitter code, and she’s cured, at least of her emotional agony and loneliness. 

And just like every other time that ignorant Pollyanna inside me has grabbed onto that glass castle, Mom smashed through it again at at the crack of dawn this morning when the phone jolted me awake.  In tears, she whimpered, “Mom?  Mom?  Are you there?” 

She’s addressed me as “Mom” before when she’s really distraught or her meds are screwed up, but it never fails to shock me. I don’t bother to correct her anymore.  What’s the use?  Mothering is what she needs right now, and her paid caregivers are too busy, exhausted, and overwhelmed to truly listen most of the time.  She’s feeling her vulnerability at rock bottom; she can’t tell if her nightmares are real or if she’s even woken up in the morning (one of many potential downsides of Parkinson’s drugs).  I’m the only one within hundreds of miles who’s known her longer than 7 months.

Nonetheless, I resisted the urge to make the long drive over there, even though I didn’t have to work today.  I have a visiting schedule set up with her twice a week.  It feels too harsh on days like this when she’s so needy, but it keeps me balanced and sane to have some structure regarding which days in the week I dedicate to her. 

I try to save my reactive energy for true emergencies, and otherwise stick to the visiting plan.  As someone who used to be spontaneously driven and open, it feels artificial and cruel at times, but I have to admit that it’s keeping me above water in this caregiver role.  We talk on the phone every night after dinner, and although I’m keeping stubborn boundaries with my physical visits, I’ll talk as long as she needs to.

Instead of making the long drive to help her endure the gap of missing dopamine in her brain, I dug out my gardening supplies, organized my saved seeds, ordered the ones I was missing, and got ready for indoor and outdoor sowing of the hardiest seeds next week.  This is something Carol Jean loves to participate in and constantly reminds and asks me about.  So in some small way, I felt I was caring for us both.

Mom’s best friend back on the east coast always ends her emails to me with this statement: “You know you’re doing the best you can, and that’s all you can do.” 

That first phrase stuns me every time, makes no sense, and leaves me feeling completely disconcerted. 
The best I can??? 
No, not me. 

I taught in the inner-city at a rough, rough school before Mom’s health became a major concern.  I’ll dare say I was great at it.  Maybe too much so. 

At that time I had no doubt that I was doing the best I could, because I did nothing else.  What I did for those incredible students who became my 24-member family never ended, even in my dreams.  Their needs for extra food, shelter, safety- way beyond the teaching I was hired to do never ended with the school bells.  And everything I could do was never enough to get them to the point of security in life where I felt they deserved to be. 

As you might guess, my health rapidly collapsed, eventually to the point where I developed a couple scary medical issues and could barely drag myself out of bed each day, even on the weekend. 

Since then, sometimes I fear I’ve gone too far in the other direction.  Since I regained my health, (which took many years) I avoid jobs, people, and situations that smell even faintly like they could suck life energy back out of me. 

Like all caregivers and individuals who work personally or professionally in a role with people whose needs are endless, I’ve struggled constantly with what “doing my best” looks like when I simultaneously commit to doing what I need to do to take care of my physical, emotional, and social health.  I never have the faintest idea whether I’m doing my best anymore, but life feels healthy, balanced and good again.  The two days I spend a large chunk of time with my mom are incredibly focused and present, and I know she appreciates them.  She’d like me there more, but for various reasons I feel I can’t do that and still care for my life, however intangible it may feel at the moment. 

I guess it’s not unlike sowing seeds in March in Wisconsin, or trying to do my small part to help revive the increasingly fragile democracy here.  I keep plugging away at some kind of balance, trying not to judge too much, hoping I might be getting something right once in a while, and never really knowing what the outcome will be.

Photo credit: Marilylle Soveran
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This entry was posted in advocacy, caregiver stress, support, and respite, dementia, family issues, holistic health, inclusion and tagged , , , . Bookmark the permalink.

3 Responses to The smell of spring

  1. Hello from Sydney Australia, again!
    Thank you for the Dopamine Diaries.
    Mind you, between the two of us, I am sure we’d wish for no such necessity.
    My history reads so much like yours…devoted teacher and eventually health had me walk (crawl into a hole really) away from school.
    My husband is 62 and PD was officially diagnosed 3 years ago, with the added ‘bonus’ of mild dementia. So that’s how our retirement years are…staying put!
    I am at home with him. He remains independent in physical care, with some limitations.
    He has had his licence taken away (he surrendered when told to by Neurologist).
    I make all appointments, take him to all, and help the Doctors and other professionals understand what’s happening when Hub is unable to recall the words, or the issues.
    My organised mind, and self is a help for sure.
    BUT I am not always a willing or happy carer.
    This is why I try as I might to have other interests, and have ‘time outs’ from the house. Caring for two lively grandkids 2 days a week gives me a mental & physical shot in the arm…and makes me somewhat exhausted but its good!!
    At the moment physical symptoms are very difficult – he has lost more than 30lbs in 2 months…he did need to, BUT. He is having an endoscopy soon, as his Gastro Dr believes the muscles of digestion are being affected now and causing endless nausea.
    I’d like to lose weight…easily…but not like that!!
    I am definitely a comfort eater…always have been so I am more than heavy for my height. One day, soon, I will walk again but our Summer has just finished and we had consistent days of over 105deg F.
    Anyway, I ‘enjoy’ reading about your mum, because it is a window into the life I may have sooner than I hope.
    By the way…you are doing “not your best” but “EXACTLY as you need to” to care for YOU…
    Cheers. Denyse

  2. Hi Denyse,

    Good to hear from you again.

    The gastro part of Parkinson’s is really intense for my mom too, but so far only causes abdominal pain and nausea in the gaps between her Sinemet pills (what she takes for PD to up the dopamine). The blast of dopamine allows her GI muscles to relax, by telling the brain it can do so, I imagine. I can see how when it progresses more, the meds could be be less helpful.

    Hopefully soon there’ll be better options for your husband. Has his neurologist had any ideas? I’ve found that sometimes specialists for various areas of the body triggered by PD (bladder, kidneys, GI) don’t understand the dopamine-related brain/organ connection well enough, and can actually do damage by trying to treat a PD patient like they would a normal patient. I hope your doctor is an exception and that you have a better experience!

    Take care! Glad you have those grandkids bringing fun into your week!
    Meg

  3. momsbrain says:

    Well, I would just like to offer support that doing your best CAN and SHOULD include taking care of yourself – especially if you have already experienced health problems associated with stress. I commend you for having a schedule with your mom and sticking to it. I also know that it is so very hard to have a miserable loved one with disease. My mom needed me so much more when she was in assisted living; she still had fears, and hurt feelings, and resentment, and frustration. And her needs associated with those emotions definitely took their toll on me, and I suspect your mom’s misery can take quite a toll on you. Though so much of my mom’s personality is gone now, the fact that advanced disease reduced those emotions has been helpful to me. I can’t deny it. It’s yet another unfair thing about all of this….

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