When my husband first received a tentative diagnosis of Alzheimer’s, I initially felt detached and numb. Could this really be happening to us? He’d been forgetting more than was average for someone in their early 70s, yet I felt mainly disbelief. In the months that followed, my family and I experienced a wide range of feelings: sadness, grief, anxiety, resentment, frustration, fear and anger – all totally understandable. If you’re facing emotional duress because a loved one has Alzheimer’s, here are some of the best tips to help you and your loved one on this journey.
Change your perspective on Alzheimer’s
We were determined not to buy into Western medicine’s pathology approach to this illness. I resolved that we would greet this experience as creatively and lovingly as possible. When we talk only about a diagnosis, we relate more to the illness than to the patient. Wisely, my husband said, “They call it Alzheimer’s, but I don’t call it anything.” Yet he openly told people that he was having “memory problems” — a compassionate way to refer to the process.
Treat your loved one with compassion
From my training in meditation, I knew that some traditions regard the last chapter of life — including death — as the most important, so I pledged to care for him as thoughtfully and lovingly as possible.
Reach out for help
Don’t let the illness isolate you and your family. Find a support group, consult an Alzheimer’s specialist, take a habilitation therapy course and find a good caregiver’s guide. Ask family and friends for support and set up regular schedules for visiting.
Bring lightness or humor to situations
This attitude presupposes that we hold a larger perspective toward illness. Yes, it’s heartbreaking, but mental decline is also in “the natural order of things,” a phrase I found comforting.
Take care of yourself
To prevent burnout, I made a list of activities that replenished me (meeting with friends, being in nature, an occasional massage) and arranged to get respite from caregiving whenever I could.
Find the spiritual dimensions of caregiving
For me, I relied on the practice of mindfulness. Why? Because moment-to-moment mindfulness keeps one’s awareness focused in the present as opposed to worrying about the future or lamenting the past. When we embrace the spiritual dimension of caregiving, difficult situations become an opportunity for growth. Amazingly, we may even find blessings or grace in adversity.
Embrace your own personal growth
One of my spiritual teachers pointed out that caregiving gave me the chance to practice “the perfections” — transcendent qualities like patience, generosity, effort, loving kindness, and compassion. Even giving a spoonful of food, he said, involves these qualities. This transformed the way I looked at caregiving.
Ease your way through difficult times
It helps to develop rituals that provide a repeated, familiar structure for the patient. Everyone will have different ones, and they may be very simple things. Here were some of ours: tea in the late afternoon (“sun-downing” time), preferably outside in good weather; a daily walk in two familiar places; singing before meals; meditating together for 20 minutes; and for him, the comfort of watching golf on TV, listening to music and a warm bath before bed.
If we bring our best effort to the spirit of caregiving, it helps to transform even the most challenging aspects of Alzheimer’s.