Friday, January 30, 2009

Fix You (Coldplay)

I can't recall the last time I went this long between posts... but I returned late Tuesday night from spending a week with my mom and have only now slowed down enough to process and record my thoughts - I already know this is going to be long, so settle in with a cup of hot tea (or join me for a glass of wine, which seems to take the edge off the telling)...

I've written here before that my 78-year-old mom has pulmonary fibrosis and kidney disease, both chronic, irreversible and incurable illnesses – at this point, it's a matter of attempting to slow down the progression and maintain her comfort level. When I saw her at Christmas, I could tell she was much worse than when I'd gone up for the Dar trip at the end of October, only a few months before – I felt the need to have a quality, one-on-one visit with her, outside the structure of our family holiday hecticness of so many people, so little time. Since I'm still unemployed (I continue to plead the blessing-in-disguise defense), I feel fortunate I had a window of opportunity in which to follow through – add to that a $150 round-trip deal, and it was the proverbial offer I couldn't refuse...

Mom has been on oxygen 24/7 since mid-September – her basic routine is to get up, make a pot of coffee and settle in to a corner of the couch in her living room, where she stays the majority of the day, watching television and napping, leaving there only to get something to eat or go to the bathroom or return to her bedroom at night. Breathing is more of a struggle when she moves around (activity also causes coughing) – it's therefore more comfortable (and comforting) for her to stay as sedentary as possible. Mom is so frustrated – her mind is still so sharp but her body is betraying her...

The first thing I did when I arrived was to head up to Publix and spend $200 on healthy foods to cook for mom – I planned a week's worth of meals, the most important of which was the Southern sh*tpot of soup, for which I used ground turkey and organic vegetables: carrots, green beans, onions, corn cut off the cob and rice (I had to use white because people with kidney disease can't process brown rice... nor whole grain pasta, wheat bread or any high-fiber foods). We had the soup for dinner that evening and I put up 8 containers in the freezer – I did the same for each subsequent meal such that, by the time I left there were 19 Tupperwares stockpiled for future use (2 of them contributed by my dear sister, who will continue the ritual... :-)

Another reason for going was to assess mom's 24/7 routine, as well as gauge how she's able to accomplish certain tasks (with or without help) and what tools/support she needs to make her life easier on a day-to-day basis – first of all, thankyoujesus for my sister Mari, who gets mom to all her doctor appointments and runs interference with the medical/insurance/paperwork world... and to my brother Brad, who stops in weekly or every other week to handle major tasks that mom cannot (grocery shopping, putting up/taking down her holiday decorations, changing the sheets on her bed, etc.). Mari and Brad each live about 30 minutes from mom, which is quite a consolation to me, 12 hours away – I do not take them for granted...

Then there is mom's secondary support group, the amazing angel neighbors of Rose, Claire and Ann – seriously, mom would never have been able to stay in her house as long as she has without their assistance. They are all dear in their own way... Rose sweet, soft-spoken and a great listener (she's a nurse); Claire strong, independent, outspoken; Ann judgemental, tactless, protective – Rose walks across the street and visits with mom each evening, and Ann and Claire call her during the day and, if mom doesn't answer her phone after a few attempts, one of them will go to the house to check on her. They will carry her laundry basket to the utility room so mom can wash clothes, take her garbage to the dump (no curbside pick-up in Flowery Branch, Georgia!) and bring in her mail – they are glad to run errands, do chores and buy anything mom needs while they're out...

Mom and I did a lot of heart-to-heart talking while I was there, which I knew was cathartic for both of us – one thing she wanted to do, which we split into two days, was to go through each room of the house, her telling me about various pieces of furniture, knick-knacks and photos. What could have been a sad experience was instead bonding and joyous, as mom filled me in on the history/backstory of cherished items, some of which I knew and others I didn't – it was lovely having her describe the pins on her hat when she was an Atlanta Olympics volunteer... and pointing out the myriad uncles/aunts/grandparents in the sepia-toned stills of Italian families on both sides. It wasn't about divvying up or tagging, but instead a walk through her past - I of course took copious notes, and will type up a document which I'll e-mail to my sister, who will print and have mom look over and make corrections, if necessary. Mom did, however, give me a silver necklace I admired when we were going through her jewelry – Ralph (her second husband, who was killed in a car accident 8 years ago) gave it to her for Christmas in 1999 and the sentimental value is priceless...

Friday afternoon I drove mom to her haircut appointment – she did fine up to a certain point (having her portable oxygen tank with her), but ran out of energy toward the end. Myra, her hairdresser, walked us to the car and sweetly told mom that, from now on, she'd be more than glad to come to mom's house and cut her hair (as she had a few other people she did that for) – we were so touched at her offer, and I've encouraged mom to take her up on it...

Friday night we watched the movie Young @ Heart, an uplifting documentary which Anne told me about when I posted Yes We Can Can for Hope and Change Week on Star Maker Machine, warning that a few of the elderly characters died during the making – we decided to go ahead with it, and were so glad we did, as mom truly enjoyed, despite the bittersweet nature of the film which celebrates the aging process, knowing their accomplishments were beyond her capabilities. The soundtrack was amazing and, even though my husband is a big Coldplay fan (as is my daughter), I've never really listened to their music – the song I used for this blog post title, Fix You, hit me in the heart as it began as a duo between two male characters and ended up as a solo...

My sister and brother came over Saturday night for a confab with me and mom, to discuss short- and long-term options – it was a great brainstorming session, in which we came up with so many options to expand her ease of operation around the house: Brad will buy and install a hand-held shower attachment for mom's bathroom; we will get her a LifeAlert necklace; I set up one of her spiral notebooks as a To Do List of Chores/Errands/Purchases so she can write down whenever something needs done (rather than having to remember it) when someone asks how they can help; I got my aunt's walker out of the garage and although mom stubbornly refused to use it most of my visit, she did try it out my last few days there and begrudgingly admitted it made things a bit easier; I placed a few of her dining room chairs throughout (calling them “halfway houses”), in which she could sit and catch her breath on her way from one room to another...

Saturday afternoon we (my mom, me, Mari and Mari's 12-year-old daughter Julia) played Scrabble – I kicked everyone's *ss (as usual!)...

Sadly, my sister told me a few weeks ago that she's getting a divorce... and thankfully so far everything's been amicable – the blessing in disguise here is that Mari will now be looking at houses with a downstairs bedroom/bath for mom to move in. Mom has informed us she wants to stay in her own house as long as she's able, and we agree – however, it's nice to know there's a Plan B when the time comes (as of this writing, Mari had put in an offer on a house which feels like a meant-to-be... and my purple candles have been burning non-stop)...

We also came up with lots of questions to ask mom's new pulmonologist, which she saw Wednesday, the day after I left – a full report on that tomorrow...

I brought my laptop and 5 books and was able to do a bit of work/play at night or when mom napped or showered, but didn't have nearly as much free time as I thought I would (getting through only 3/4 of one of the novels) – I didn't even walk while I was there, mostly because it was cold but also because I didn't want to leave mom alone for long. I concentrated on staying strong and upbeat when we were together, but allowed myself to fall apart in the car running errands... or late at night when she was asleep... or in the shower (like Glenn Close in The Big Chill) - it sometimes was too much to bear, as it still is when someone asks how she's doing and I feel so fragile I fear I will shatter into a million pieces...

One of the things I did when I got home was to set up an e-mail distribution group called The Connie Circle, consisting of me, Mari, Rose, Claire, Ann and my daughter Sarah – this way we can all keep each other in the loop regarding doctor appointments, visits and ideas...

I don't know who was more grateful for our time together, me or mom - she was so appreciative of my assistance and company... and I felt glad to finally be able to do something tangible instead of worrying long-distance...

To be continued...

here, here, here, here and here...

Fix You by Coldplay (YouTube video here...)

The Breakdown Lane by Jacquelyn Mitchard

POEM: For the Traveler by John O'Donohue

Every time you leave home,
Another road takes you
Into a world you were never in.

New strangers on other paths await.
New places that have never seen you
Will startle a little at your entry.
Old places that know you well
Will pretend nothing
Changed since your last visit.

When you travel, you find yourself
Alone in a different way,
More attentive now
To the self you bring along,
Your more subtle eye watching
You abroad; and how what meets you
Touches that part of the heart
That lies low at home:

How you unexpectedly attune
To the timbre in some voice,
Opening in conversation
You want to take in
To where your longing
Has pressed hard enough
Inward, on some unsaid dark,
To create a crystal of insight
You could not have known
You needed
To illuminate
Your way.

When you travel,
A new silence
Goes with you,
And if you listen,
You will hear
What your heart would
Love to say.

A journey can become a sacred thing:
Make sure, before you go,
To take the time
To bless your going forth,
To free your heart of ballast
So that the compass of your soul
Might direct you toward
The territories of spirit
Where you will discover
More of your hidden life,
And the urgencies
That deserve to claim you.

May you travel in an awakened way,
Gathered wisely into your inner ground;
That you may not waste the invitations
Which wait along the way to transform you.

May you travel safely, arrive refreshed,
And live your time away to its fullest;
Return home more enriched, and free
To balance the gift of days which call you.

QUOTE: "Live with skillful nonchalance and ceaseless concern." ~ Prajnaparamita Sutra


  1. Glad you're home safe and sound Susan. Sounds as though your week with Mom was good in many ways. She is a lucky woman to have such a wonderful family and circle of friends.

  2. It's nice to see your words again. What a blessing to spend that time with your mom. Love.

  3. Hey, Catherine ~

    It was a very good week, in an exhausting yet rewarding way - my mom is indeed lucky, as indeed are we who are privileged to be in her immediate circle...

  4. Hey, Amy ~

    It feels good to *have* words again, as I was feeling mute from the numbness of shock - thanks for the love, as I/we need all we can get at this point...