Hope Is Not Enough

If you don’t already follow Lisa Bonchek Adams’  blog, you might want to begin.  Because she is also a cancer survivor, I usually connect to her ideas every time I read her blog.  Her entry on June 28th had such an impact on me, I wanted to respond in my own blog.

The title of her blog that day was “The hidden danger of hope (The Stockdale Paradox and The Good Father).”  You’ll have to read it to become informed about the Stockdale paradox if you don’t already know about it, but the idea behind it can be applied to everyone’s life because we all have moments and events that require us to find courage and hope to survive.

Hope is good until it becomes false hope. In The Good Father Noah Hawley says, “Acceptance is the key to happiness.”   Admiral Jim Stockdale has said, “You must never confuse faith that you will prevail in the end–which you can never afford to lose–with the discipline to confront the most brutal facts of your current reality, whatever they might be.”  Hope is not enough.

One of the reasons I was first drawn to Lisa’s blog was that she often admits she does not believe that all you need is a positive attitude.  It’s important to fight as if you will win the battle, but she says that you have to accept that you don’t know the outcome.

Strength and courage are needed but will not guarantee survival.  My sister had both strength and courage and her hope was strong, but she died anyway.

I’ve been coping with my mother’s increasing dementia and health issues as she sits every day in the nursing home waiting to go home.  I have been afraid to take away her hope.  But what I realize now, especially after her phone call to me this morning, is that as long as she believes she will get better and go home, she will continue to be miserable and feel sorry for herself.  She will hate every day she has if she continues to believe her life will return to the way it used to be.  She considers herself to be a victim, although really that is how she lived her whole life.  I know she needs to face the fact that she will not ever be the person she once was, a hope she expresses daily, and she will not be able to go home.  Her confusion and her need for nursing care are increasing.  I thought I might be able to take her with me on a planned family reunion to Cape Cod at the end of July.  I have not been able to tell her she can’t go but that I am still going.  It seems cruel to take away her hope, but she needs to face the “brutal facts” of her “current reality” as hard as that may be.  It may be too late to help her understand that what she needs to do now is create a new daily routine for herself and seek comforting and enjoyable moments within that routine.  I’d like to think she will be able to do that, but I’m not sure.  It may be that I am the one who needs to face this first.  Only then will I be able to try to help her get through the final months of her life.

Ladybugs and Wheelchairs

“Perhaps everything terrible is in its deepest being something helpless that wants help from us.”—Rainer Maria Rilke

Writing has always been a challenge for me to do daily.  Since my mother’s illness and hospitalization, writing has had to take a place even lower on my daily to-do list.  The thought of losing my mother has frozen my creativity and saddened me beyond my usual depression.  It’s not that moments of inspiration haven’t occurred.  It’s just that they haven’t seemed to be able to rise above my daily commitments.

Last week I sat outside the nursing home with my mother in her wheelchair.  We talked about the beauty of the surrounding gardens, some news items, and her complaints about the nursing home.  She repeatedly stated her longing to go home and showed her confusion about why she can’t do it.  Then a period of silence set in, all conversation ended momentarily.

I began to watch a ladybug crawling on the metal table in front of us.  She went first in one direction toward the edge of the table, and then she turned around to make her way to another edge.  She wasn’t frantic in her efforts, just methodical.  I reached for a small leaf resting on the table, gently slid it under her body, and lowered her to the grass.  It just seemed to me that she would be happier in the grass.  She may have been able to do that herself (or as my husband later pointed out to me, ladybugs do fly, a comment that destroyed my satisfaction in helping her), but still I felt better after she was on the ground.

I continued to watch her for a while longer.  She climbed up on a blade of grass, her weight causing it to arc over, and then when she reached the tip of the blade, she moved to the tip of another blade, swinging a little on it, and continuing along the grassy area.  I’d like to think I did a good thing, moving her to a better place.  I’ll never really know if she was unhappy on the metal table.  But it didn’t seem like a natural habitat for her, unlike the grass.

I feel the same way about the tiny half-room my mother occupies on the second floor of the nursing home.  Sitting in a wheelchair is not natural for her.  Being unable to stand up without an alarm going off is not normal for her.  She went into the hospital a strong walker, using a walker only for security.  She uses her strong legs at times to move down the hall in her wheelchair, at least during those times when she realizes she can.  Other times she is confused and believes she is not allowed to move, unable to distinguish between moving her wheelchair along and standing up to walk, something not allowed there.  She feels imprisoned, held down by rules of safety but not really living her life the way she could.  I struggle with guilt, wanting to take her home to her apartment but aware that her confusion could lead her to do something unsafe.  She could fall and break a hip, or turn on the stove or burn something in the microwave.  Round-the-clock care is out of the question.  At $24 an hour, she would be totally broke in a few months, all her savings gone, and forced to apply for Medicaid and enter a nursing home, perhaps one even worse than where she is now.

I guess if there is such a thing as reincarnation, I would not mind becoming a ladybug.  If I wanted to, I could fly away.  If I walked along a metal table looking for a way down, perhaps someone would come along and assist me to the ground where I could swing on blades of cool grass and move along on my own, independent and strong.

Alone in her Wheelchair

“This is our purpose:  to make as meaningful as possible this life that has been bestowed upon us…to live in such a way that we may be proud of ourselves, to act in such a way that some part of us lives on.”  —Oswald Spengler, German philosopher

Tonight as I leave the hospital, driven by love and hope, I try to hold on tightly to my connection to my mother. After all, it’s been there since my birth.  I try to imagine my mother holding me in her arms, cradling me, rocking me and singing me sweet songs.  I try to imagine my mother loving me.  I can’t.  I don’t remember sitting on her lap reading bedtime stories.  I don’t remember good night kisses or the feel of her arms hugging me.  I don’t remember if she comforted me when I was sick or sad.  So now I’m wondering which one of us really has the memory problem.

It’s funny what I do remember of my childhood.  I remember how my grandfather gently placed me on his stomach to take my stomach pain away, telling me he was transferring my pain into him. I remember how much better that made me feel. It’s funny how I remember my paternal grandmother holding me on her lap, jiggling me up and down, singing songs such as “She’ll be coming ’round the mountain when she comes” and some silly song about a lady riding a high horse.  She taught me how to look for four-leaf clovers, and my grandfather made me laugh at his silly jokes.  I can remember all these things, but I can’t remember what my mother did with me.  I know she taught me things—how to love music, how to play the piano, how to work hard, how to care for others, but I don’t think she taught me how to be strong.  So now when I most need strength, I think about my father and my sister and try to pull from them enough strength to face the coming days.  I think about my grandparents’ love for me, and I remember their resilience and acceptance of aging and the loss of their homes and finally facing death.  Maybe I can gather within me the courage of my father, my sister, and my grandparents, all of whom had to find strength at the end of their lives, and maybe if it’s cohesive enough, I can then move it from me to my mother as my grandfather once took my pain into him.

It was hard to leave her tonight, sitting alone in her wheelchair, confused and afraid, clinging to me every moment.  Maybe I really will be able to give to her the strength and courage I never got from her but had to find elsewhere.  And maybe I can give her all my love even though I don’t remember if she ever loved me as a child.  Maybe I can love her enough to help her through this end stage of her life and still have within me memories of a childhood when I felt loved.