At what point does the life of a caregiver become the focus in a relationship with a patient? What are the caregiver’s obligations to her loved one? Is a caregiver allowed to question his methods of care? Are they adequate? Do they allow for the caregiver to also live fully?
In Contented Dementia,* Oliver James calls this the “tipping point.” He advises caregivers to define this emotional scenario well in advance of it occurring so that arrangements can be made to move the patient to a facility that more effectively cares for someone with Alzheimer’s.
What is our tipping point? When will we know if it’s time to place Mom in a special Alzheimer’s ward instead of being cared for at home? What will it look like, or feel like? Will it be when she’s had two bathroom accidents in one week, or when I’m called again to “rescue” her, along with the caregiver, from the store she refuses to leave? Or when she can’t walk the short distance home from the local grocery store? Will it be a build-up of general frustration at mom’s incalcitrance? Or when I stand there trembling with sorrow at the hostility Mom has directed at me yet again?
Our own process of defining the tipping point began with my parent’s move to Beer Sheva from Netanya, their home of 20 years. Though we were unable to perceive it while it was happening, I believe that the move may have pushed Mom into a steep decline in cognitive abilities and to a more volatile emotional state. It has tapered off somewhat, though Mom’s demeanor at certain times of the day can be downright intolerable.
This isn’t about the way we care for Mom’s physical needs, because we have adapted admirably (if I say so myself) to her devolving abilities by altering our methods of care. This has to do with two other factors: the life of her caregivers, mainly my dad; and the way Mom spends her time.
I sense that Daddy has nearly reached his tipping point, and he states as much himself. He is the main caregiver in the mornings as Mom continues to reject anyone but him to help her wash and dress. This includes Sahlee, our Philippina caregiver. And due to her incontinence, Mom needs a daily wash. I tried helping the other morning. Mom yelled all manner of foul things at me. Granted, she also yells invectives at Daddy, too, but ultimately she complies with his instructions.
More than that, he is tied to her in a way that allows for little freedom of movement. He leaves the house for only a few hours at a time and if he plans to be away for longer, he schedules his absences with me so that I can cover for him. There is no talk of taking any more trips abroad. It is too inconceivable to contemplate.
My time is also significantly curtailed by caring for Mom. I often feel that I must ask permission to attend seminars or lectures that I might otherwise deny myself because they clash with Daddy’s schedule. If I want to go away for Shabbat, I must check that Sahlee can switch her day off or work an extra day during the week. And Shabbat, when I take Mom to synagogue, is harder than I hoped it would be. Though she enjoys walking there, singing the prayers, and saying hello to my amazing friends (who treat her with such kindness and love), getting her home when she is hot, tired and resistant can be problematic.
Caring for a dementia patient is also incredibly expensive. In 2017, the lifetime cost of care for an American living with dementia was $341,840, with 70 percent of this cost borne directly by families through out-of-pocket costs and the value of unpaid care.** This is a factor in considering a facility that in the US can cost upwards of $8,000 per month. Here in Israel, the monthly costs are approximately NIS 15,000 with the possibility of obtaining assistance from the Ministry of Health.
Another key issue is how Mom spends her time. Her dwindling physical energy combined with her incomprehension of things means that we must limit our activities to the confines of her house. I worry that she is given little stimulation when I’m not there. She often rummages through the house on an endless search for something “lost” or watches programs on TV which she doesn’t understand.
Perhaps Mom will flourish in a closed Alzheimer’s facility with its set schedule, caring individuals who will cater to her needs, a stream of activities meant to engage her, and other patients like herself who love to talk and sing. Or perhaps that is a fantastical projection of what I would hope for but is likely far from the reality of most dementia facilities.
When I first moved to the neighborhood where I live, I was a young bride without children. “When your children reach high school age,” older mothers told me, “you’ll have to send them away to school because the schools in this city aren’t educationally strong.” Yeah, right, I said to myself, I’m never going to send my kids away to boarding school. But I did. And I realized how much more effective the school was at using my sons’ time than I had been at home. There were basketball games to play, extra learning to attend, movies, friends, sing-alongs, teachers who listened and engaged them in emotional and spiritual lessons that they could not—or would not—have learned with me.
For my own part, I feel both elated and burdened by Mom. My brother Simon believes that the woman who inhabits our mom’s body is no longer the beloved mother who played a central role in raising her children and grandchildren. I guess I believe that, too.
I also believe that there still exists inside her a small spark of her former self though it is severely diminished. That spark feeds my desire to give to her in the way I gave to my own children, to cater to her as if she were a young child, to play games and sing nursery rhymes with her, to experience that utter joy of living in the moment. We have created a whole world for ourselves full of repeating songs and jokes, and I am loathe to give that up.
I am consumed with doubt about moving her to a facility. Who will sing with Mom and hold her hand? Who will laugh and dance with her? Who will steer her gently but firmly to shower and dress? Who will distract her when she angrily demands to go home? Who will love her as unconditionally as we do?
And so we go round and round discussing what is best for Mom—and conversely, what is best for her caregivers. I know that being with Mom brings out the best in me. Without her near me, my life will orbit a deep emptiness.
I managed to steer myself away from drowning my sorrows in a large bowl of brownie batter by munching on these rainbow-colored carrots. They were exceedingly easy to prepare and even made me feel better for having eaten something healthy.
Roasted Rainbow Carrots
You can’t help but feel happier looking at these amazing carrots. What’s even more amazing is that these colors are natural variations to the common orange carrots we eat.
1 package rainbow colored carrots (approx. 1 kilo), cut into 1” pieces
2 Tbsp olive oil (may use butter)
½ tsp rosemary
1 Tbsp lemon juice
Salt and pepper to taste
¼ cup parsley or spring onions, chopped for garnish
Directions:
Preheat oven to 420°. Chop carrots and toss with oil and spices. Place in single layer on a baking sheet lined with baking paper. Bake for 30 minutes. When cooled, drizzle with lemon juice and parsley or onions.
**Contented Dementia: 24-Hour Wraparound Care for Lifelong Well-being by Oliver James, Vermillion, London, 2008.
**“New Alzheimer’s Association Report Reveals Sharp Increases in Alzheimer’s Prevalence, Deaths and Cost of Care,” March 20, 2018, Alzheimer’s Association Press Release, https://www.alz.org/documents_custom/2018-Facts-and-Figures-Press-Release.pdf