BOOK REVIEW: An Uncertain Inheritance: Writer’s on Caring for Family edited by Nell Casey

An Uncertain Inheritance: Writer’s on Caring for Family
Edited By Nell Casey
William Morrow/Harper Collins(November 13, 2007)
304 pp Hardcover
Nonfiction: Parenting/Families/Aging/Caregiving
ISBN-10: 0060875305
ISBN-13: 978-0060875305
Amazon Price: $16.47

As a writer and sole caregiver for my 84-year-old mother who has Alzheimer’s, An Uncertain Inheritance: Writer’s on Caring for Family, edited by Nell Casey piqued my interest.

Writers produced the 19 essays gathered for this book, but more importantly, these essays were written by caregivers and those being cared for themselves with a no-holds-barred brutal honesty.

Under my currant circumstances, I thought this book might bring me to tears with each story, but I was wrong. It’s the powerful honesty, written eloquently in all its vulnerability, that will grab your heart, reduce you to tears, cause you to chuckle, and in some cases infuriate you, as it did me.

These stories weren’t fiction fantasies or pretty pictures of caregivers being selfless martyrs, as some may think, and the patients weren’t patiently waiting to die; these were true accounts of people — parents, children, spouses, friends, and siblings — who while living life, being all they could be, were stricken with illness or injury and needed help.

Caregiving for the chronically or critically ill is not a pretty subject. These writers opened their homes, hearts, and minds and let out every ounce of love, fear, frustration, and anger and shared the trials and tribulations they felt during their caregiving journey.

Each essay had its own merits, story, and sense of need.
Helen Schuman in her essay, My Father the Garbage Head, writes with poignant, heartwarming honesty of her father’s heart attack and strokes which led to his death.

Sam Lipsyte, in The Gift speaks openly and humorously about his drug abuse, how it wrecked his life, and while he “cleaned up his act” his mother let him move back in. Shortly after, his mother tells him and his sister that her breast cancer had recurred. He handled the news with a matter-of-fact acceptance that he would be her caregiver.

I was sort of relieved when I realized it was going to be me. Why knock yourself out trying to resuscitate your life when you can cling to somebody else’s. (12)

Ann Harleman’s My Other Husband describes her husband’s illness and the grueling bleakness and burden of MS.

MS is something that goes on happening—growing, changing, worsening—measurable not in weeks, months, or even years, but in decades. Something huge and black that descends slowly and inexorably and surrounds you. (21)

Her heartfelt love showed in each of the slices of their life she describes before MS took over. Her friend told her, “With chronic illness, a lot of times the caregiver ends up dying first. Out of stress and exhaustion. I’ve seen it.” (28) After years, frustrated and worn, she finally decided to place him in a nursing home “for his sake and hers.”

Eleanor Cooney’s essay Death in Slow Motion was formed from a former Harper’s Magazine article and later became a book under the same name. The eloquently written story is about her mother, writer Mary Draper, and her decline with Alzheimer’s Disease.

Cooney shoots from the hip with her openness of dealing with Alzheimer’s and the dilemmas and life interruptions her and her mate dealt with after moving her mother into an apartment close to their home. After just a few short months of her mother’s arrival, Cooney finds herself in an argument with her mate, who bolts out of the house to clear the air, and she stands in the dark with her “heart pounding with fury, sorrow, anguish.” (120)

She speaks of her mother’s lack of memory, repetitive conversations, questions, and how people with dementia “become unappetizing.”

They don’t bathe unless you make them…You will begin to find a person you love…odious. And you will hate yourself for feeling it. (126)

Susan Lehman, in Don’t Worry. It’s Not An Emergency tells a grim, yet capturing story of her nearly 300-pound mother, who spoke with a “thunder” voice, or “blast,” sat and ate sorbet, doughnuts, huge amounts of candy, and smoked cigarettes all day. Lehman moved her mother from her home in Ohio to live on the 8th floor of her apartment building so she could keep a closer watch on her. Her three children adored their grandmother and visit her daily.

The story of her mother’s illness is not the least bit funny, but Lehman manages to spin the tale with utmost charm and humor.

Did I mention that my mother had no teeth? And that as a result, her mouth flapped back and forth, like bird wings, over her face? Did I mention that my children called her Doodles? (167)

In the Land of Little Girls Ann Hood’s 36 hour experience with her 5-year-old’s illness and quick death was appalling in many ways. Hood describes not only the illness and death, but also her devastation at Gracie’s death and the horrible treatment she and her family were subjected to in the hospital.

An Uncertain Inheritance may never become a best seller due to the subject matter, but it should be a book that each and every human being should read and realize the reality it speaks about; they too may face the need to be cared for, or need to care for someone else. I only hope the readers have families like these who take that responsibility seriously regardless of time-consuming needs, the love, the fear, the frustration, the anger, and the rejection that may be a result from it.

Click HERE to purchase An Uncertain Inheritance: Writer’s on Caring for Family.

Thinking Too Much and Loving All Of You

Lately I’ve been thinking far too much. Thinking can get me in trouble and opening my mouth about what I think gets me into much more trouble than just thinking. Many of my caregiver friends have lost their loved ones to Alzheimer’s and now they are grieving their loss and trying to find a new purpose in life. They are very special to me. They came into my life when I didn’t know where else to turn and became my friends and became family. They are so fragile right now; I worry about all of them.

Betsy, Lori, Nancy, Flinty, and Stef, I watch, read, and listen to all of you and my heart breaks each day for you, wondering if you’re all okay and how you’re holding up.

Flinty makes me think even more than I do already with his deep and thought-provoking posts. I like that! Stef makes me think about when I was her age and how I handled situations and I find she’s very mature for her age. Betsy, Nancy, and Lori always come around to support everyone sharing their thoughts and advice, and no matter how down they may feel, they always seem to add a touch of humor. I just want to thank all of you for being the kind, caring, considerate, and loving people you are.

Here we were, a group of caregivers, all fragile in our own little way, who came together to cheer each other on, give support, and help guide each other in the right direction, and we all found that there is no “right” direction—except move forward moment by moment. We did find each other, and what we found was a group of people who know how to care, know how to love, and know how to give of themselves when there seems to be nothing left to give.

I wish I could comfort each and every one of you personally because I’ve grown so fond of you, your words, your lives, and your strength.

Strength is something I thought I was full of, but I’m finding more strength from everyone’s caring and loving words than I find in myself. Now, I just think I’m full…of what, I don’t know. You can fill in the blank however you see fit. :)

I find strength from Rick’s posts as well. He makes me laugh when I least expect it and his comments are sometimes hilarious and sometimes touching. No matter which they are, they always seem to fit for the mood I’m in at the moment. Thank you for that, Rick. You’re a great guy and your mom is lucky to have you.

As for Gale and Dave, and those I may have missed—your loved ones are so very lucky to have you as well. Everyone’s posts are so thoughtful, caring, and loving. I guess I’m feeling a bit strange tonight because I’m thinking of all of you, all at once.

I think of Cinnamin right now, who is pacing, wondering, and worrying, and I know how hard that is for her—how hard it was for all of you. I did the same thing when my dad was near death. My heart breaks for all of you, yet my heart knows that you are going to get past this and continue to care, love, and give to those who are still close to you. Cin, my thoughts are with you and my candle is lit.

Tonight, I lit a candle for each and every one of you wonderful people. May the light that shines from those candles shed some brightness in your life and light the way to your dreams.

What I’d like to give to each and every one of you is my utmost respect. I can’t think of a better group of people who deserve it. I can only hope I’ve been there for you as you have all been there for me. Thank you for being you. I love you all!

To Betsy

This morning I was happy that I was able to visit my Uncle Joe yesterday, Mom enjoyed the visit, and I actually found some time to finish writing a book review that’s been long overdue.

I’ve been busy with Mom all day; dressing her for the day, helping her with her bathroom needs, making meals, and keeping her busy. Weekends she tends to get anxious if I’m not sitting and talking with her or doing something with her. I managed to get the laundry finished and she helped me fold clothes, put them on hangers, and fold towels. She said she felt good helping with things because she doesn’t want me to have to do everything. I told her how much I appreciated her help and we sat for the rest of the afternoon working on word search puzzles and coloring.

Dinner is finished and Mom is tucked safely and warmly in bed and I thought it was time for me to catch up on my blog reading.

I went to Betsy’s blog first and found myself in tears when I read that her mother passed away over the weekend. I haven’t met Betsy personally, nor have I met Lori, Nancy, Terry, or Shirl, and many of the other caregivers I link to on my blog, but the relationships we’ve made through our writing about our journey with Alzheimer’s has been a rewarding one. We’ve become family to each other.

We’ve experienced similar drawbacks in our care giving, shared our concerns, even passed our phone numbers on to each other, yet we hesitate to make that call because we know how busy everyone’s day can be.

Each of these wonderful people have shared their journey right through to the end and it’s the end that saddens me so much. Shirl’s Bob died on April 27, 2007. Lori’s Helen died on Monday, September 17, 2007. Nancy’s Russ died on Thursday, September 20, 2007. Terry’s dad died on Friday, September 21, 2007. And now Betsy’s mom died on Friday, November 2, 2007.

Each have become very important to me and hold a very special place in my heart. Each giving of themselves in a way no other could. Some of us have common interests, some have common lifestyles, and some even have common superstitions. Thank you all for being the special people you are.

Betsy ran across my blog on August 20, 2007 and commented, “It seems we share many common traits: full time caregiver for an AD mom, freelance writer and Pittsburgher. I'm delighted to "meet" you!”

Besides being caregivers for a loved one with Alzheimer's, Betsy and I do share common traits, even past those things she mentioned. I was delighted to meet her as well and she’s held a very special place in my heart since. We’ve kept in touch through our blogs, and she was so kind to take time out of her busy day to send copies of the Reminisce Magazine. I thought it was very sweet and thoughtful for Betsy to share with my Mom something that her mom enjoyed for so long.

Today when I read Betsy’s words, “Those were our last words to each other,” I knew without reading any further her mom had passed and my heart broke for her. Through tears I continued to read her post about how she listened for her mom’s sleeping sounds through the baby monitor and my heart ached even more. So many of us caregivers can relate to the feeling of not getting comfortable until we hear our loved one’s soft steady breathing. We know the sounds of the bed, the different types of breathing, and when our loved one’s are sound asleep. Then we know we can relax for a short time, and maybe catch a bit of sleep until they call out to us during the night.

Silence through that monitor is something none of us want to hear. I could feel the numbness Betsy felt as she stood outside on the porch trying to gain the strength to check on her mom in the morning when she heard that silence. I can only imagine how difficult those moments were and how long they must have felt to her.

Crying, I reached for the phone and called Two Feather. He knew immediately that another of my friend’s loved ones had passed. He’s received several of these calls in the past six months. Two Feather understands the heartbreak we go through each day; he watches me hold back tears as I watch a part of my mom disappear as the days, months, and years go by. He hesitated for a second and asked, “Who?” “Betsy’s mom,” I said choking back the tears. He said, “She lives near here, doesn’t she? Tell her I said I’m sorry.” Then he hugged me and said, “I’m sorry. I know you’ve become friends.”

I must have had a distraught look on my face because he asked me what was wrong. Betsy’s post mentioned that the viewing was today and the funeral would be tomorrow morning. She’s so close, yet I realized I wouldn’t be able to be there for her during her time of need.

Betsy, please know that I’m thinking of you and your wonderful family and I am keeping you in my prayers. I may not be able to stand beside you, hold your hand, and give you that comforting hug you deserve, but I am there for you, my friend.

You were the template your mom used when she made those craft angels. ((Soft hugs)) I love you!