Tuesday, 16 April 2013

Life is what happens to you …

Here are some reflections from earlier this month.
Do you remember It’s a Wonderful Life? George Bailey sees one thing after another in his life turn out differently from what he hoped and expected. I expect the reason this old movie still resonates with so many people is that what poor George experiences is not at all exceptional.
There are always the big picture things which don’t work out as planned: marriages don’t last; people we love die too soon; being physically spry ends; families don’t turn out quite the way we expect; retirement plans go awry.

Somehow we adjust, and life goes on. Oddly, or maybe not so oddly, it’s the little things that are the hardest to be sanguine about missing when life throws a curve ball our way.

... when you're busy doing other things

Earlier this year, my 94-year-old mother fell and broke her leg. She suffered through a four-day wait for surgery because of a high white blood cell count, which was later diagnosed as C. difficile, had atelectasis for days after the surgery, had an infection in the incision the antibiotics for which pitched her back into C. difficile, endured swelling in her legs and feet and received a new diagnosis of dysphagia, which means she can no longer eat regular food but must have only pureed food and thickened liquids.
She has an amazingly strong heart in both senses of the word and made it to the Rehab hospital only to have a recurrence of the C. difficile, which detoured her from rehab for 10 days. 

I am Mum's primary care-giver and organizer 
I hold Mum's Power of Attorney, so I am responsible for her health and financial care. This is different from simply caring for her her or about her more informally. One night not so long ago, wondering why I felt so  stressed (or more accurately why I wanted to smash everythng is sight with a hammer), I spent a few minutes doing a sort of care giver's job description. Here it is:
Attend to Mum’s  bedside care while she is too weak to do ANYTHING for herself (adjust her pillows, the blankets, the curtains, the bed, help her eat, push the button for the nurse, give her foot rubs, comb her hair, moisten the inside of her mouth when it is dry , help her brush her teeth etc. );
Provide emotional care and encouragement as well as explanations for the various procedures, with frequent repetition of the same story, as Mum is now forgetful;
Reaffirm with Mum her wishes re resuscitation;
Try to figure out what  constitutes a “heroic measure”  beyond the obvious things like ventilators and feeding  tubes;
Provide greetings to her from family and frineds, thank them for their cards and letters, and put them up on the wall, so Mum can see them in the various rooms she’s in;
Answer friends’ and family members’ requests for information in a timely way by e-mail, phone or Facebook;
Put out brushfires amongst family members as needed;
Advocate for Mum with the healthcare professionals (emergency room people, her surgeon, social workers, internal medicine team, speech therapists, physiotherapists, nurses, healthcare aids, porters, x-ray techs) in three different hospitals over two months;
Make sure no one (including healthcare workers who should be able to read a chart) feeds mum outside food or water through a straw or anything non-pureed or not thickened;
Explain to numerous people how to feed Mum;
Explain over and over again to everyone who treats her how best to talk to a person who can’t hear well but is still capable of understanding;
Make sure her hearing aids/glasses and other possessions do not get lost during the many moves from hospital to hospital and in and out of isolation rooms;
Manage her finances and pay her bills;
Keep the personnel at her retirement home up-to-date re developments;
Chat optimistically with her fellow retirement home residents about her state of health;
Water the plants, sort the mail and do her laundry at her apartment;
Find and tour nursing homes in case there is no bed available in long-term care in her retirement home;
Sort her belongings and clear out her apartment making sure she will have things that are homey for her in long-term care;
Collect and box up other things to give to family members according to her clearly listed wishes;
Persuade other family members to come and get the things she wants them to have;
There’s likely more, but it escapes me for the moment.
 What are those little things I miss?
These tasks have been my rule of life since Feb. 18. I am happy to help my mother; she was so good to me when I needed her help over the years. Also, she is a remarkably cheerful and stoic patient with a great sense of humour. In noting ruefully early on how much she depended on us, she said, “You’re just at my beck and call.” Then turning to me, she said, “You’re Beck” and to Greg, “You’re Call.”
However, even though I have no negative feelings about caring for Mum, I do miss the little things I do for myself, and that is what makes me a bit desperate. I remember relaxing and
Doing the Saturday Globe and Mail crossword puzzle,
Spending time with Ancestry.com,
Raking the yard,
Writing in my journal,
Cooking in my own kitchen,
Showering in my own bathroom,
Getting my hair cut,
Getting healthcare for myself,
Seeing friends,
Going to church,
Singing in the community choir,
Going to exercise class,
Walking to the post office,
Reading for my course in Spiritual Direction,
Writing stories for the grandkids  … and so on and on
The worst is just when you think things have returned to normal or are at least predictable …  bam … you’re on the train or in the car going back to Toronto leaving behind messages re unexpected absences and appointments to be re-booked.
Greg comes too, and my daughter has filled in so many gaps by visiting very regularly.  Other family members visit when they can.
The early elderly and the very old walk together
But the main burden is on my shoulders. And I cannot but wonder will Mum get better (using that term realistically), where will she go after rehab, when will she go, and what if there is no room in a decent nursing home? I rehearse facing her death everytime the phone from the hospital rings.
And I am not the only one going through this care routine. Everywhere in the hospitals and clinics we see the early elderly, who 40 years ago, I would have thought were over the hill, caring for the very elderly.
Various people tell me to take care of myself, and I am following their advice although I feel guilty about not being at Mum’s bedside every day. A professional who should have known better but meant well, asked what I was doing for fun. Well, fun isn’t top on the agenda just now.  But getting used to taking one day at a time definitely is. And I have not actually reached for the hammer yet.