Friday, June 2, 2017

Coming Out as a Caregiver

Sorry my blogging has been less than prolific in recent months.  Since my mother’s second stroke late last October, my responsibilities as dutiful daughter have increased manifold and my creative juices have not flowed. 

After her second stroke last autumn, Mom had a hellish stay in rehab punctuated by daily calls to me begging me to intervene to get the aides and nurses to respond to her often-urgent needs.  She emerged from that stint in rehab more traumatized than when she went in.  The benefits of the speech and physical and occupational therapy she was receiving were diminished by how rattled she was multiple times a day fighting for attention and her dignity while trying to meet needs as simple as going to the bathroom. 

She also emerged a changed woman, still competent but sometimes struggling to find the words to express herself and sometimes confused in that effort and in absorbing information.  She had two falls this spring, one on the scooter that is her lifeline as she no longer can walk.  Mom has been to the emergency room more than four times in the past six months for various problems—once for a third small stroke.  It seemed like every week I could count on a call from her alarm monitoring service telling me they’d dispatched paramedics.

Twice in the ER they found she had urinary tract infections.  I found out that in the elderly, UTIs can cause confusion or a delirium-like state (that can be mistaken for Alzheimer’s or dementia) and agitation and that certainly was the case with my mom.  This has confused efforts to understand what her current baseline state of mind is, though she’s definitely improved since her last infection.

I used to call my mom once every two days, then every day, but now because of her heightened agitation she calls me sometimes several times a day and I have to talk her down from whatever whammy life has thrown at her: like the transit van not returning her keys when she came home from the hospital last time and then apparently losing them, like having to deal with a repair phone call to and visit from Comcast, like her shower aide not being able to come, like a doctor trying to explain to her how he is going to change her medication. Between this and the midnight calls from the alarm monitoring service it’s gotten so I go into fight or flight mode every time the phone rings, my stomach clenching and the adrenaline pumping.

One nice thing that’s come out of this is increased communications between my brother, who lives in New England, and I.  He has really stepped up this year, taking over some of my mom’s doctor’s communications and calling my mom every day. He’s making spreadsheets like crazy to try and get a handle on her care. 

For now, Mom is able to live independently.  She can still manage her medications, attend to her personal needs, prepare meals for herself and so on.  She still scoots over to the shopping plaza near her to get her hair cut or to go to her favorite market.  She still goes downstairs in her building to chat with neighbors.  I admire her courage and her spirit.  And I pray for my own as I help her navigate this journey through aging through which I will follow in the coming decades.