By Andrea Rouda
For Karen*, as for many others of the “sandwich generation,” the singular joys of motherhood are overshadowed by constant worry that her natural inclinations as a loving daughter are hindered by her overwhelming responsibilities to her new baby. (*The name of the woman in this article has been changed to respect her request of anonymity. Everything else is true).
I was 29 and childless when my mother was diagnosed with early-onset Alzheimer’s back in the 1980s. Despite my demanding full-time job and many friends, her illness immediately took center-stage in my life and I committed to seeing her as much as possible before her death at age 62. But for Karen Summers, 30, who finds herself in a similar situation, life is far more complicated. For Karen, as for many others of the “sandwich generation,” the singular joys of motherhood are overshadowed by constant worry that her natural inclinations as a loving daughter are hindered by her overwhelming responsibilities to her new baby.
At a time when most new mothers are focused on getting their bodies back in shape and swapping parenting tips in mother-baby support groups, this Northern Virginia resident is consumed with guilt because she cannot spend more time with her mother, who at 64 is afflicted with Alzheimer’s disease. Karen manages to make the trip—her mother lives an hour’s drive away in a group home– once a week, often bringing along her seven-month-old son. Her mother loves seeing him and he has bonded with her as well.
Despite the ceaseless demands of motherhood, Karen’s waking hours are filled with thoughts of her mother, and in her dreams she sees her as she once was, beautiful and full of life. “Everything I do now reminds me of her, like giving my son a bath or putting him to sleep at night. I think about her taking care of me the way I take care of my son,” said Karen. “I wish I could thank her for being such a great mother.”
Karen was pregnant when her father passed away suddenly last year; he had been her mother’s caretaker. His death forced her and her two brothers to take over that formidable task. “It’s so hard to become the primary caregiver. Since Mom never sleeps, it’s a 24/7 job. With my own baby, it’s like taking care of an infant and a toddler at the same time. It would be impossible.” She and her husband would like to have another child fairly soon but will put that off pending her mother’s situation. “If I had to have mom living with us, I would not have another child.”
For now, the former pediatric nurse and pre-school teacher has put all her career plans on hold, and is instead juggling baby care with elder care. “So many things would have been different if Mom had not gotten ill,” said Karen. “She would have been my son’s full-time babysitter, and I would have gone back to work part-time. Also, my husband and I would like to move out of the area, but we can’t think about that now.”
Karen’s mother started showing symptoms in 2000 and was diagnosed with the disease in 2002. According to Karen, the always-immaculate housewife “started acting funny, like buying things she didn’t need. She had always been impeccably dressed and made-up, and she became apathetic. After her hysterectomy she was never the same.” Karen has been told that people with a predisposition to dementia should avoid surgery, since anesthesia can accelerate the onset of the disease.
Her mother may have had an intuitive feeling that led her to pressure her husband to purchase long-term care insurance in 1997, so fortunately most of her medical costs are covered. “We’ve been through hell and back, but now things are as good as they could be,” said Karen. “Mother is in wonderful place, a single-family home in a lovely residential neighborhood with five other residents. They take her grocery shopping and to the beauty parlor, and she has good friends who still visit her.”
Once each month Karen attends an Alzheimer’s Association support group, where she is by far the youngest member. While she finds the meetings helpful, for her they were most beneficial in the beginning. “Now it’s simply a venting atmosphere. But still it’s comforting to know that other people have similar issues. It makes you feel more normal, and you get ideas about how to handle things. It’s a good place to bounce around feelings,” she said.
Karen now tries even harder to keep herself in good shape by using a treadmill 3 times a week, but she has given up running outdoors because she is reluctant to leave her baby alone with a stranger. And she realizes how important it is to stimulate your brain, but then remembers that her mother was an avid reader and did crossword puzzles, and she still got sick. “I do it anyway because it makes me feel good,” said Karen.
Some positive steps Karen has taken to brighten the situation include sending out a letter to a wide network of friends and family, letting people know how her mother is doing and where to visit her. She has also started seeing a therapist to help handle her feelings of sadness. “Once in awhile I get a glimpse of her old self. I miss her so much,” said Karen. “She was my best friend.”
Like all children of people with Alzheimer’s, Karen worries about inheriting the disease, but has decided against getting the blood test that would reveal whether or not she has the gene. Instead she tries to concentrate on the here and now, and how to best balance the two most important roles of her life: devoted daughter and loving new mother.
Andrea Rouda is a freelance writer based in Washington, DC.
The Alzheimer’s Association, National Capital Area Chapter provides help and hope to over 460,000 individuals – including those diagnosed, their families and care partners – in the District of Columbia, suburban Maryland and Northern Virginia facing the daily challenges of Alzheimer’s. Services include counseling, information and education for families and caregivers; support groups; Safe Return; training for professionals; community education; and government advocacy on the state and local levels.
Information, referral and support
Helpline (available 24 hours a day / 7 days a week)
National Capital Area Chapter Corporate Office
11240 Waples Mill Road, Suite 402
Fairfax, VA 22030
10 Signs of Caregiver Stress
Too much stress can be damaging to both you and the person you are caring for. The following stress indicators, experienced frequently or simultaneously, can lead to more serious health problems. Learn to recognize signs of stress in yourself. Taking care of yourself will help you be a better caregiver.
1. Denial about the disease and its effect on the person who has been diagnosed.
“I know mom’s going to get better.”
2. Anger at the person with Alzheimer’s or others; anger that few treatments and no cure currently exist and that people don’t understand what’s going on.
“If he asks me that question one more time, I’ll scream!”
3. Social withdrawal from friends and activities that once brought pleasure.
“I don’t care about getting together with the neighbors anymore.”
4. Anxiety about facing another day and what the future holds.
“What happens when he needs more care than I can provide?”
5. Depression begins to break your spirit and affects your ability to cope.
“I don’t care anymore.”
6. Exhaustion makes it nearly impossible to complete necessary daily tasks.
“I’m too tired for this.”
7. Sleeplessness caused by a never-ending list of concerns.
“What if she wanders out of the house or falls and hurts herself?”
8. Irritability leads to moodiness and triggers negative responses and reactions.
“Leave me alone!”
9. Lack of concentration makes it difficult to perform familiar tasks.
“I’ve been so busy, I forgot we had an appointment.”
10. Health problems begin to take their toll, both mentally and physically.
“I can’t remember the last time I felt good.”
If you experience several of these stress symptoms on a regular basis, consult your doctor. Call the Alzheimer’s Association at toll-free 1-800-272-3900 to learn steps to help manage the stress in your life.