Scrabble in the dark with Annie

2 Jun

Last September, I started a new job. I didn’t expect to get it; I didn’t even apply. It’s not 9-5; I’m on the clock for all three shifts, every day, 24/7. It’s hard, but it’s rewarding. And, thankfully, there are a lot of perks.

I’m caring for my mom, at home, by myself. She has congestive heart failure. Without going into medical details, what I am doing on the physical level is kind of like the first year with a newborn – meals every couple of hours, up several times during the night – except that in this case, what everyone is “looking forward to” is not growing up, but transitioning out of this life.

“So much of our anguish is created when we are in resistance. So much relief, release, and change are possible when we accept, simply accept.”
~ Melody Beattie

Every caregiving situation is different, with a myriad of complex nuances and ups and downs specific to the patient and the family; in our case, I am the only child, so all of the responsibility to meet my mom’s needs and communicate them to others rests with me. “The family caregiver is the backbone of our broken health-care system,” writes Gail Sheehy in her book “Passages in Caregiving.” We do it out of love, we do it because our parents did it for us, but make no mistake, it is work and it is a job.

Social acquaintances see me these days and say, “Wow, you look so tired. Don’t you have Hospice? And didn’t you hire someone to help you?” As if these make everything peachy keen.

Having Hospice is great; it allows me to keep Mom at home where she wants to be and make quick decisions about managing her care. A nurse visits once a week; someone can come if we have a crisis; most of Mom’s meds and other equipment like oxygen are provided. But Hospice does not physically help someone like me take care of an elderly person at home on a day-to-day basis. If I want help – with cleaning, with cooking, with everything! – that part is up to me to figure out.

Mom and I did hire a wonderful caregiving assistant a few months ago, and that does allow me to take some vital worry-free breaks. (Without the respite I have gotten thanks to Paula, I wouldn’t even be able to write this blog entry!) But even families who are well off are hard put to have people working round-the-clock in their homes; we have our caregiver between 12 and 24 hours a week, which is only a fraction of the time I’m on duty. So ultimately, I still have the three-shift job that has been compared to that of a combat soldier in terms of the amount of cortisol produced by the adrenal gland to cope with the stress of a typical day.

I do get to take naps whenever I can squeeze them in. They are usually cut much shorter than I would want – when I hear my mom stirring on the baby monitor – but they are a lifesaver. On Pauladays, I may get to take a walk before grocery shopping. About once a month, I try to get away for a weekend, which requires coordinating several sitters; and all such plans are subject to change if Mom is feeling especially bad. Sometimes by the time I get a break, I’m way too tired to enjoy a long hike or a concert; I just need rest.

HYDRANGEAS, GROSBEAKS AND BASEBALL

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is.” ~ Albert Einstein

Before taking on this role, I was an “adventurer.” I lived to travel and have new experiences in exotic natural settings. Now, I am learning to see the adventures, even the miracles, unfolding before me right where I am. Like the amazing hydrangeas in our garden this year. I have given away at least a dozen arrangements of them, and every time I cut one, three more grow back in its place. Or the amazing two-week visitation to our yard of a group of migrating Rose-breasted Grosbeaks earlier this spring. What a gift it was for my mother to be able to sit on our screened-in back porch and enjoy these special birds. These are glorious adventures for me!

In the few years leading up to this acute stage of Mom’s illness, I was always subjected when visiting her to the incessant Cincinnati Red’s baseball games blaring at me over her radio. I resisted learning about the game and tolerated the noise without paying much attention to Mom’s commentary about her favorite sport. I took her to a game once a few years back, and I admit it was slightly more interesting to see the action live. When Mom got really sick last fall, I decided she needed to be able to see all the Reds games this year on television. We bought a package of some 200 cable channels just to get the ONE: Fox Sports Ohio. And now, guess who’s watching and cheering on the team every night right along with Ruthe, even though she can’t stay up for a whole game these days. I like to think it’s no accident they are ranked first in their division this year.

A STEP BEYOND WORDS
Back about November, a friend turned me on to Words With Friends, an online version of Scrabble I can play on my iPhone with Facebook friends. This became a wonderful stress reliever, especially while sitting up with mom during difficulties in the night. I soon found myself playing lots of games with Annie, a friend from high school that I never got to know very well. We made a good match, enjoying some very close games. When we started chatting, I learned that she, too, was caregiving for her mother, who had the same disease as mine. Like me, Annie found the game a great diversion. We had lunch, caught up and shared our caregiver woes, some similar and some very different. Every night, when things would finally settle down at home, I’d look forward to making my plays in my four or so games with Annie, either in the dark of my mom’s room as I watched over her, or in my own bed just before falling asleep.

A few weeks ago, I was super busy with watering the gardens, friends visiting, getting out for a rare hike in the gorge… and in the back of my mind I kept thinking that I hadn’t seen Annie make a play for several days. When things calmed down, I checked her Facebook page and found that what I feared was true. Annie’s mom had died.

Immediately I began to cry really hard… for Annie, and for me, too. It was one of those rare times, during the hectic day-to-day business of this caregiving job, that I realized fully what is coming, and how completely unready for it I will always be.

I fled to the garden, unable to really see through the tears, and cut all my favorite hydrangeas for Annie; this was the most important step I could take at that moment. I called her later and heard some of her story, feeling new pain because I knew that many of the symptoms her mom had to endure, my mom has also. The next day, I left the flowers on her porch. She wrote and told me that the hardest time is waking up in the morning, and so she has the hydrangeas by her bed so she will see them first thing, and remember that life goes on. A few days later, when I checked my Scrabble games, there was Annie, constant as the northern star.

“Your entire life journey ultimately consists of the step you are taking at this moment. There is always only this one step, and so you give it your fullest attention. This doesn’t mean you don’t know where you are going; it just means this step is primary, the destination secondary. And what you encounter at your destination once you get there depends on the quality of this one step.”
~ Eckhart Tolle

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8 Responses to “Scrabble in the dark with Annie”

  1. pissingonmypistols June 2, 2012 at 1:43 pm #

    You’re doing good work, Frances, all the way down the line.

  2. Nancy June 2, 2012 at 1:56 pm #

    Thank You. My heart goes out to you,and yes, you are a wonderful daughter anyone could sense this. Everyday , all we can do is our best. Your best goes a long way to your mother’s heart and soul. Always remember though that taking care of you is the best you can do for those you love, even in these situations. Even a 10 minute walk, if you need it…take care.

  3. Tracey June 2, 2012 at 2:12 pm #

    So glad I stopped to read this! You are a gem! I still can’t believe you became a Red’s fan!!!! 🙂 hug your momma for me! I love you!

  4. David June 2, 2012 at 3:37 pm #

    Thank you for writing this, its what I needed to read today. I too am an ‘only’ caring for an elderly parent with congestive heart failure. Probably not quite as far down the road as you. Its good to know we arent alone in the challenges. My thoughts are with you today.

  5. Cindy June 2, 2012 at 3:57 pm #

    Dad and I shared the caregiving responsibilities for my mom during her last two weeks. I came home and called Mike’s sister and begged her forgiveness for not helping with her and Mike’s parents in their final days. I know you are beyond exhausted. I’m praying for your body and soul, and I know you will be blessed. Go Big Red Machine!

  6. Bodhi June 3, 2012 at 12:52 pm #

    Frances, there are no adequate words for these feelings. I look out a scant few years and see my own parents’ horizons drawing closer, and I wonder how I will respond. I do know that my response will be imbued by the soul and courage you have shown us is possible. The world is a much, much better place for having you in it, and I am profoundly enriched by knowing you. May your mother’s crossing, whenever she chooses it, be eased by the love you show so naturally. Thank you for this sharing. You are the jewel in the heart of the lotus.

    Bodhi

  7. Sharon June 4, 2012 at 8:12 am #

    Frances, Thank you for sharing this. Here’s to the power of friendship and family and birds and flowers and really good writing. All the best.

    By the way, the grosbeaks never made it to our feeder, but we got to see several of them a nearby state park. One memorable sighting was of the male sitting and singing his heart out at the top of a tree and then flying off to take an extended break from his “labors,” while the female just worked and worked, doggedly building the nest, never stopping. 🙂

  8. Kathleen Farago May June 4, 2012 at 12:46 pm #

    I was so moved by your article that I had to wait a day to respond, but I had to respond! Frances, I have always felt that you are a person of immense quality with great depth of feeling. Your latest words only confirm this sense about you and what you do.

    What you are doing with your mom is the pinnacle of an ideal that all of us “only children” aspire to. A few weeks ago I returned from visiting my mom in Toronto. I was there to care for her after she had two heart attacks. I am grateful that she has recovered very well. My mom and I are very close, but extremely different as people. Living in close quarters has never been easy for us and the stressful nature of my visit only served to highlight how difficult it is for us. You can imagine how awestruck I am to hear about the level of care that you are able to offer your mom.

    What also became all too apparent is that my own physical challenges (fibromyalgia) are a significant impediment when it comes to caregiving. Yet, I was able to do my best long enough to witness her recovery. Though I am obviously relieved that the outcome, this time, was positive; it has enhanced my feeling that I am not ready either for providing longer term care or for the eventuality of her passing.

    Reading about your experience is very supportive, considering that I share some elements of your situation – thank you for taking precious time to write this sensitive article.

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