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The Challenges of Caregiving, and the Hidden Blessings
The Daily Camera
December 8, 2002
The Alzheimer's Association estimates 4 million Americans have Alzheimer's disease. In Colorado, the Rocky Mountain Chapter of the Alzheimer's Association estimates that 60,000 people have this disease — imagine Coor's Field filled and overflowing. Approximately 80 percent of persons with Alzheimer's are cared for by spouses, adult children, extended family, or professional caregivers at home.
There are defined stages to the disease process, with inherit challenges for caregivers and the person with the disease at each stage. The 20 percent who do reside in specialized memory care facilities, at the assisted living level and skilled nursing facilities, often do so because caregiving at home can become overwhelming, and issues such as wandering places the person at risk for injury.
Three significant changes occur in the brain of someone with Alzheimer's. In normal aging the brain will suffer slight atrophy. With Alzheimer's, this "shrinking" is pronounced. Second, protein amyloid plaques form, and lastly, neural transmitters become tangled and disabled, disrupting normal brain activity.
This disease causes the loss of short-term memory initially but leads to losses in orientation, long term memories, language skills and eventually affects all areas of functioning. Duration lasts from two to 25 years, with an average of eight years.
Caregiving
Alzheimer's caregiving is challenging because it causes changes in every area of functioning. The disease takes a long time to unfold, and anything of a chronic nature can become something of an endurance test. We often mobilize our energy to fix things, and in this instance, it is not fixable. We find ourselves wistfully missing yesterday, anxiety ridden about tomorrow, and unsure how to cope with today. These feelings need to be honored, but we still need to not only survive but thrive.
There are some key themes and understandings when caregiving for one with Alzheimer's, requiring an ability to adjust expectations, allow for creativity and respond to change.
Life Review and Role Reversal: This theme requires adjusting expectations. You probably thought you and your spouse would experience retirement together, go on vacations with the family to the beach, or get time to spend with dad or mom.
We did not expect this to happen, and we need to grieve the situation, reflect on their life and on your life and the times together, glean the resolved and unresolved aspects, and come to resolution. Say the things you need to say and help the person express some of the things they may need to express. As a child, you will be the reliable grownup who now must help with your parent. Honor the support this person has given you and seek to return this support. Role reversal is the ultimate thank you.
Some family dynamics may be painful and non-supportive. Seek a counselor, chaplain or therapist who can assist in this situation, supporting and watching out for your well being.
Healing and Simplification: You may have to let some things go. Sometimes, the difficult and stressful situation of caregiving forces you to cleave through the extraneous and get to the heart — literally and figuratively.
You may lose touch with some friends, but there will be strengthened bonds and new friends who are found because of providing care.
Additionally, be intentional about getting out. Because your mood and energy can feel sapped, getting away from the care situation is critical. My father took up watercolor painting when mom suffered a severe stroke. It created a specific time he left and someone else minded the fort. His depression lifted with each painting, and he enjoyed showing visitors his latest work. My mother loved seeing his creations, too.
Simplification sometimes means letting someone else do some things, including meal preparation, cleaning, shopping or bookkeeping. Caring for someone with Alzheimer's disease is a team process.
Finally, there is the issue of forgiveness. There will be times when things happen that are not positive. Meditate, pray, journal, whatever medium works for you. Forgiveness is the ultimate simplification.
Simple Pleasures and Service: It is the simple sensory experiences, which often give us the most pleasure. The smell of pines in the hot sun or after a rain. Looking at the stars or sunset. The sound of a giggling kid. Holding the hand of someone you love. The feel of flannel sheets. The smell of coffee. A hot bath. Digging in the dirt of your garden.
Focusing on simple pleasures — for both you and your loved one — can keep you refreshed. It is easy as a caregiver to get completely absorbed in tasks, but we may miss opportunities to allow the person with the disease to participate in their own unique way.
People with Alzheimer's disease slowly become unable to take initiative doing activities they previously did. As they progress, they become less able to verbalize. Communication takes many forms. Tone of voice, gesturing and using non-verbal body language to interact are all important tools to stay in touch with your dear family member.
Personal Growth and Compassion: Human beings have an immense capacity for love and understanding, gentleness and humor. We also do not always appreciate things until they disappear — we often don't call the cup half full. We may think also that if we build our palace walls high enough we won't have to deal with aging illness and death. Then low and behold someone we love or feel we need to assist has all these issues.
Our culture places great emphasis on intellectual ability, being productive and successful. Unfortunately, this disease does not unfold in an intellectual manner. As a caregiver, I have learned to value what is here today, to tell people I love that I love them.
As you embark on the caregiving journey, be gentle with yourself; focus on the gift of compassion and the chance to practice unconditional love. Like the Phoenix, blossom in the flames. If you know a friend who is caregiving for a person with Alzheimer's, if you have the time and energy, give them a break, help them to get out in the community, or offer to help with some of their routine tasks. It means a lot.
Megan Carnarius is executive director at Balfour Cherrywood Village, a memory care residence in Louisville, and an adjunct faculty member at Naropa University in Boulder.