“Wisdom is one thing in life that does not diminish with age. Wisdom is learning how to live in harmony with the world as it is in any given moment. One aspect of that wisdom is the deep understanding that we are all in the same boat. Out of that comes compassion — compassion for yourself, compassion for others, compassion for the world. Can you allow the changes and delight in them and look for the wisdom inherent in each change rather than resisting them?”
(Ram Dass, Polishing the Mirror: How to Live from Your Spiritual Heart)
Now, nearly 90, my Mother lingers in a state of dementia, as she steadily deteriorates mentally, physically and emotionally. For the past 10 years or so, I’ve been there, involved in her caregiving. Over and over, she tells me: “Getting old is the pits.” She has the official diagnosis of Alzheimers, a disease of cognitive impairment. It is a progressive, degenerative disorder that is not considered a normal part of aging. Additionally, Mother’s medical conditions include obesity, high blood pressure, high cholesterol, glaucoma, hearing loss, Congestive Heart Failure, Restless Leg Syndrome, Sleep Apnea, fluid retention—but no diabetes. She’s on about a dozen medications, a patch for Alzheimers, receives Nebulizer (breathing) treatments four times a day and gets physical therapy four times a week. She has a pacemaker, had a total knee replacement and utilizes a walker. She wears adult diapers and needs assistance with going to the bathroom, bathing and dressing.
At 66, I am the oldest of four siblings. Throughout my life, I’ve had a complicated, stressful relationship with my mother. Throughout her life, she’s been prone to mood swings and rages. Daddy would warn us: “Don’t have a fit like your mother!” So I’m used to walking on egg shells around her. I am the parent to my mother now. I put the bib around her neck before dinner. Even though we have had difficulties in the past, my aim is to treat her with compassion as well as be mindful of my self-care needs during this stressful time.
Over the past decade, we tried desperately to keep Mother at her home as long as we could, but that just didn’t work out. After several previously unsatisfactory assisted-living experiences, she now resides in an immaculate residential home with 7 other elderly residents, who are all in varying stages of decline, but very nice people.
Not surprisingly, Mother’s adjustment to assisted living has been rocky. There are those days I get a call from the residential home director: “Your mother is having behavioral issues. We need to talk with the doctor about adjusting her medication.” Apparently Mother had been intimidating (bullying?) some of the residents and cursing the staff. I must admit it’s funny/sad to imagine this wheezing obese little old lady on a walker could be a threat. But I take it seriously. I certainly don’t want her to hurt anyone!
Her doctor says, “Sometimes there’s an undiagnosed mental illness beneath the dementia.” Tell me something new, I want to say, to the doctor. But I don’t. None of her behaviors surprise me. I want to scream: “Welcome to my childhood!” Instead, I take a deep breath; pray for guidance and strength; then reply to the doctor: yes, it’s OK to increase her lorazepam and double the Alzheimers patch.
Visits produce a wide range of emotions for both for me and Mother, who doesn’t know where or why she is there. She has about a ten-minute attention span. Most of the time she knows I’m her daughter, but confuses me with my sister. She’ll ask questions like, “Are my grandparents still alive? Is my husband alive? Where is my mother?” Or, the most heartbreaking, “When can I go home?” When that question comes up, which it does regularly, I fib, and say, ”Soon, maybe soon.” Other times, she starts having a childlike tantrum and demands “I want coffee! I want chocolate!”— even though she can’t remember that just moments before that she had a cup of coffee and several pieces of chocolate candy that I brought her.
While I’m there at the care home, a resident, Mildred, 93, pulls up next to me in her motorized scooter. She’s wearing a designer track suit with sequined sneakers. With a serious expression on her face, she asks me, “Do you know your mother uses bad words?” Of course I know, but I sigh, take a deep breath, and say a silent prayer. Then I look at Mildred kindly, as I apologize to her for my mother’s “bad words.” Every day, I pray for my mother, the other residents, staff and their respective families: “Help them. Protect them. Love them. Thy will be be done.” I strive to practice acceptance and make peace with what is.
Tending to someone with Alzheimers is often referred to as the “36-hour day.”
My caregiving challenges and chores are not unique, nor am I am alone. Millions of Americans are dealing with their elderly parents or a spouse. A friend of mine, his wife, 2 daughters and their pets recently escaped from their home in the wee hours from a kitchen fire caused by the wife’s senile grandfather. Another friend, whose mother is declining, cannot cope at all with the situation. My friend starts crying and says she doesn’t want to talk about it.
I completely understand. Life presents challenges and suffering to everyone.
There are days I feel like I am drowning in a sea of overwhelm. I start spiraling downward.
Wait a minute. I remind myself that I will not sacrifice myself at the altar of my mother. I can choose to be a Soul Alive Woman.
I have choices: either I can stay in a state of misery, or, I can detach from the suffering. Take time for a “mindful self-care moment.” The first step is to breathe. Put that oxygen mask on myself first! Yes, I will honor what I’m going through, yet not stay mired in the care-giving muck. Focusing on my breath creates space for peace and calm. Throughout the day, I pray: “Help me. Guide me. Teach me. Love me.”
As Mary Oliver, in her poem “Heavy”, tells us:
“It’s not the weight you carry, but how you carry it
— books, bricks, grief—
it’s all in the way you embrace it, balance, carry it
when you cannot, and would not,
put it down.”
What kind of demons torture my Mother?
Or, is she an angel among us?
I pray for the wisdom to know the difference.
“The song, ‘Autumn Leaves,’ was always a sentimental favorite for my mother since it was really popular when she and my father married on September 18, 1949. We heard the song a lot growing up, especially on their wedding anniversary.”
(Britt J. Ellis)
Linda Marley
Thank you for sharing your experience, because it is what so many are experiencing today. My heart is with you; you are correct to continue to claim your own identity, peace and separateness.
My heart says that you are suffering far more than she is.
My compassion says that all life is sacred; is the soul life itself….does it leave/escape from this terrible prison?
before the body can go to rest? I pray that it does.
I understand about a child walking on eggshells. I know them well. The peace is that it is not you causing the need for them. Peace be with you.