Is there an alternative to giving anti-psychotic drugs and ensuring a meaningful, calm day for my mom? I sure hope so, because it saddens me to no end to see what these drugs are doing to her.
I am half way through a book called Contented Dementia: 24-Hour Wraparound Care for Lifelong Well-being* that was suggested by a friend. This book speaks my language. It puts into a framework of caring for dementia patients many of the ways I’ve tried to interact with Mom. It does it in a concrete way that gives expression to and formalizes the way we interact. I’m still not sure it can solve all our problems, but I’m willing to give it a try.
The author writes about his mother-in-law, Penny Garner, and her many years of volunteering with Alzheimer’s patients, first with her mother and then in the British health care system, to create a program called SPECAL, Specialized Early Care for Alzheimer’s.
Penny uses the metaphor of a photograph album of our memories to understand Alzheimer’s. As we age, we seem to forget moments, names, images, and the “photographs” that appear on today’s album page become blank. For dementia patients, it’s as if the conversation never happened or the film was never watched. If challenged, (“What do you mean I didn’t give you a letter? Of course I gave you a letter to post!”) the person suffering cannot reconcile their memories with the obvious facts, like a letter tucked into a purse, and they panic. The photo might be blank, but the emotions are as real as anything, and distress, anxiety, anger, fear, etc., can color that blank moment and spread into the daily well-being of the individual.
Rule no. 1: Don’t ask them any questions.
There are too many variables in answering a question if your daily album pages are blank. For example, if I am asked, “Do you want a cup of coffee?” I have to remember whether I’ve had one, or if there’s milk, or time, or some without caffeine. Better to say to Mom, “I think it’s a good time to have a cup of coffee.”
Rule no. 2: Never contradict them.
To alleviate these negative emotions, Penny suggests answering in a non-confrontational manner, like, “Silly me, I was mistaken.” That way a conflict never escalates into those strong emotions, and the individual maintains her sense of ordered well-being.
We have to remember that to have blank pages in our album can lessen our self-worth and our equilibrium. Dementia patients don’t understand their surroundings. They are aware of their sliding cognitive abilities. Our goal as caregivers, according to SPECAL, is to return that sense of self to our loved ones.
And, of course, without memories of today, we go back to our past memories. We flip through our album to find memories that match what we see or feel today. The book describes one woman who was an avid traveler as thinking she’s in an airport whenever she is in a situation with people around her, like in a doctor’s office. When she asks her companion if their bags have been checked, an answer that alludes to an airport situation will calm her. What appears from the outside to be strange, possibly hallucinatory language, is actually quite logical. But if the travel scenario is broken, the woman can lose her sense of place and become hostile or anxious out of fear of not understanding where she is.
The book has exercises to follow—homework, if you will—to help us understand the person we are caring for. I plan to do these exercises, and when I’m finished, pass the book to my dad.
Will this method help us gain Mom’s trust? Will it keep her happy and out of anger? Will it stop her from wandering the house looking for the door? Will it enable us to bathe and feed her and give her other assistance when she needs it and doesn’t know how to ask?
The jury is still out.
I find it easier to make soup than just about any other dish. There’s a mindlessness to washing and chopping vegetables, and once it’s all in the pot, that’s just about it. I’ve become enchanted by parsley root. It cooks to a soft, aromatic perfection and adds much flavor. And the celery gives this soup a peppery kick. So get to the root of the issue with this parsley root soup.
Parsley Root Soup
Winter is the season for soups, and root vegetables are a prominent feature of their ingredients. Try adding other vegetables, or vary the amounts. Play with your taste buds. You’re bound to enjoy the end result.
1 onion, chopped
3-4 cloves garlic, chopped
1 Tbsp olive oil
1 large parsley root, chopped
1 celery root, chopped
2 stalks celery with leaves, diced
4 carrots, chopped
½ lb. pumpkin, chopped
¼ cup fresh parsley, chopped
¼ cup fresh dill, chopped
6 cups water
Salt and pepper to taste
In a large pot, sauté chopped onion and garlic in oil until onion becomes translucent. Add remaining chopped vegetables and spices and cover with 6 cups of water. Add salt and pepper. Cover and bring to a boil. Turn down flame and simmer for up to 60 minutes. Blend with a hand blender in pot to create a smooth texture. Serve, preferably with soup nuts.
*Contented Dementia: 24-Hour Wraparound Care for Lifelong Well-being by Oliver James, Vermillion, London