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.

Alzheimer's Patients Still Have Feelings and Still Love

Retired Supreme Court justice Sandra Day O'Connor's husband has had Alzheimer’s for more than 17 years. Recently she moved him into an assisted living facility where he’s met and fallen in love with another Alzheimer’s patient.

In this article, “Forgetting long-time bonds, Alzheimer's patients fall in love” Rubin Dessel, head of memory care services at the Hebrew Home care facility in New York, said he “can't quantify how often this type of situation occurs, but it will continue to occur in greater number as the years go by.”

People with Alzheimer’s lose their memory day by day; they live moment-to-moment forgetting their past, their children, even their spouses.

Though Dessel can’t put a percentage on the incidence of Alzheimer’s patients forgetting their loved ones and moving on to another relationship, he is correct in stating that it does occur and will continue to occur.

Caring for a loved one with Alzheimer’s is heartbreaking in itself, and I applaud O’Connor’s love for her husband, which allows her to feel somewhat relieved seeing him happy and enjoying life with another woman. It takes selfless people to care more about someone else’s feelings than their own.

My mom is a widow of nearly 10 years. I feel that if I hadn’t stayed close by her after my dad died, she probably wouldn’t be around today. I kept her active. We went everywhere and did everything together. We went to homemakers together; seven to ten women my mother’s age, and me, thirty years younger, sat around tables in the community room above the police station for three to four hours once a month making crafts, eating lunch, and sharing conversation and memories. Why did I attend a monthly meeting with women so much older than me? Because my mom wanted me to be there; she enjoyed my company and wanted to share as much time with me as possible.

Then, together, Mom and I shopped for groceries, Christmas presents, went to lunch, the hairdresser, took bus tours, spent days cooking meals and cookies, and spent hours at each other’s homes just talking. She came to my house for dinner at least twice a week and we even took our dogs to the vet and to be groomed at the same time and scheduled our dentist appointments back to back.

She once told me that my brother told her she “needed to get out more and do things with friends” and my mom responded that she “did get out and do things and was happy spending time with me.” In return, she was told, “But she’s your daughter, not your friend.” Mom told me she was angry and hurt by his response and said, “Joanne may be my daughter, but she’s also my best friend.”

Now, Mom with Alzheimer’s spends the day at a day care facility where she gets her hair done once a month, has lunch and goes on outings with other clients, and I shop for groceries and presents and take the dogs for appointments without her.

What does all this have to do with Sandra Day O’Connor? Mom has an admirer at the day care; a bus brings Mr. N. to the facility while his wife goes off to work. Mom’s talked about him daily for the past year and giggles like a school girl when she talks about how they dance together every week when the ‘music man’ comes to play oldies from their era. When the caregivers at the facility first told me about the little romance, my heart broke because she had forgotten my dad, but I soon got over that when I saw how full of life and happy she seemed to be. When I saw them dance together at this summer’s family picnic, I cried, not because she forgot my dad, but because she was enjoying herself—life had meaning to her once again.

Mom and Mr. N. sat together occasionally and chatted since the first day I took her to day care. Those little chats have transformed into handholding and kisses on the cheek. He pulls her chair out for her and asks her constantly if she’s okay.

This past Thanksgiving weekend Mom woke up several times during the night and thought Mr. N. was in her house. She sat on the edge of the bed talking toward the doorway of her bedroom. When I heard her through the monitor I went downstairs to find out what she was talking about. She swore up and down that Mr. N. was there and she wouldn’t have invited him over if she thought he would have come so late. Five times she awoke each night saying the same thing. For three nights I told her she was dreaming and tucked her back into bed.

It was on Tuesday, my mom and dad’s anniversary, that the caregivers told me that my mom and Mr. N. talked about ‘going out’ to lunch or a movie and since neither of them can drive any longer, maybe ‘Mrs. N.’ could take them where they want to go. It all sounds so strange, and of course the date will never happen, but for the moment they are talking about it, they are happy.

I told the caregivers at the day care about my weekend with Mom and I joked, “If I had known this before Thanksgiving, I would have sent Mom home on the bus with Mr. N. over Thanksgiving weekend and let ‘Mrs. N.’ deal with Mom’s three-night long conversation with her husband.”

It wasn’t so cute at 4:00 AM when I was dealing with it, but now that I’ve had a chance to catch up on some sleep, I smile at the thought that my mom is acting like a school girl and is smitten by someone, who when I look at him closely, has many of my dad’s features. I’m not sure if ‘Mrs. N.’ feels as O’Connor does, but I’m happy for them. I’ll always be Mom’s daughter, but it looks like Mom has a new best friend—someone she enjoys being with, talking to, and spending her time with. My smile deepens, I’ll admit, when I think of my bother’s hurtful words to my mom years ago. I don’t think he could be so selfless to accept that Mom’s new best friend is a married man.

If we learn one thing as caregivers, we learn that our loved ones still have feelings and they still remember how to love. That may be the only good thing about this disease, as well.

No-bake Oatmeal Cookies

In an effort to keep Mom busy today we made no-bake cookies. Along with having Alzheimer's, Mom's a diabetic, too, so I substitute diabetic sweetener for the sugar. Of course since Mom can’t use the stove, I melted the butter and mixed all the ingredients that needed to be brought to a boil. When it came time to add the peanut butter and oatmeal I let Mom mix that all together.

Her coordination isn’t what it used to be so it took her a little longer to mix than it normally would have. She had a hard time scooping the cookie mix from the pot and getting it to the waxed paper before it dripped off the spoon. Watching her made me realize how much Mom is progressing with this awful disease. She ended up using her fingers more than the spoon, but all turned out pretty good.

She was so excited when she put the last of the mix on the waxed paper. She said, “I guess I did okay.”

“You did more than okay, Mom,” I said. “These cookies look great.”

She enjoyed making the cookies and was so proud that she was able to do something she hadn't done in many years.

“So when can we eat them?” she asked. I couldn’t help but laugh and when I did, she started laughing too. “We can eat them, can’t we?” she asked, giggling.

I assured her that as soon as they set for a while we could have a few cookies. She was so cute sitting there waiting for them to ‘set’. She kept poking one with a spoon to see if they had hardened enough to pick up to eat.


We waited about 15 minutes and she picked one up and ate it. “They’re good. I’m full,” she said. Mom’s appetite is getting less and less. Her being full after just one small cookie is evidence of that. The sweet tooth she used to have isn’t even working anymore.

I baked a steak in country gravy in the oven along with an acorn squash for dinner. She said it was good, but she ate very little of that too. Twice Blessed wrote in her blog about how people with Alzheimer’s lose weight no matter how well you try to provide them nourishment. That is so true. I guess it's just another part of the brain being impaired that causes the appetite loss. This disease whittles away at the mind and body. Mom weighed 168 pounds in August when she was in the hospital; now she weighs 150. It's heartbreaking to watch our loved ones waste away each day.

I thought I’d share the recipe for those who don’t have it, and for those who may need another idea to add to the list of activities for their loved ones. So here it is.

No-bake Oatmeal Cookies

1 stick of butter
½ cup of milk
2 cups of sugar (can be substituted with diabetic sweetener for diabetics)
5 Tablespoons of cocoa

Cook until it comes to a boil. Remove from heat.

Add and mix:
½ cup of peanut butter
3 cups of oatmeal

Mix together until smooth and creamy. With a teaspoon, spoon onto wax paper.
Wait 15 minutes and they’re ready to eat.