Living With Alzheimer’s: The Caregivers’ Dilemma

On the first Thursday of every month, I attend the Alzheimer’s Support Group for Caregivers that meets in the Sunshine Wellness Centre at the Campbell River Hospital from 7:00-8:30 p.m. It is an open group. Anyone dealing with someone with dementia is welcome to attend. Participants share information about coping strategies that help them, supports that are available, or simply relay what’s happening in their particular journeys. Or they may choose to just listen.

Over the years, dozens of caregivers have come and gone from the group. The common denominator for all is that we want to help those in our care live the fullest life possible. To aid us in achieving that, research has shown there are some important factors to keep in mind.

•Facilitating relationships: Having someone to talk to and maintaining relationships was rated the #1 factor in improving a patient’s quality of life in a research project entitled “My Name Is Not Dementia,” conducted by the Alzheimer’s society in the U.K.

•Providing meaningful activities—past interests can meld into new hobbies.

Bill loved carving figures from wood. When he lost the ability to ‘see’ 3-dimensional figures, he retained his love of design and colour. I signed him up for a beginner watercolour class at the C.R. Art Gallery, taught by Caren Heine. The work shown is a result of that class. Now he explores his innate creativity doing sidewalk art alongside our youngest granddaughter. Competitions between them to see who can draw the wildest shapes brings hours of joy and laughter.

•Physical exercise improves physical and cognitive health. Anything that keeps them moving is good.

•Relaxing diet restrictions. Decreasing restrictions can improve quality of life and improve nutrition. Maybe that dish of ice cream isn’t so bad after all.

•Touch. We all need to be touched. Massage, hugs, pats on the shoulder all count. Pets often help fill this need.

•An unhurried approach. The ability to slow down in providing care takes a conscious effort, especially when there is an agenda. But it is always worth it.

•A sense of humour. Laughter is as appreciated by dementia patients as it is by anyone, and is clinically proven to be good medicine.

When our youngest granddaughter asked Bill how old he was, he teased, “I’m not sure.” She replied, “Look in your underwear, Grandpa. Mine says I’m four to six.”

•Encourage communication. Being listened to, and understood, are important for quality of life.

Over the years, I’ve learned another common denominator is that while caregivers recognize the importance of facilitating the best life possible for those in our care, we often neglect to give ourselves the same consideration. It is a well-documented problem. In a workshop I attended by educator, Teepa Snow, the following stats were given: 5 of 10 caregivers will develop clinical depression; 1of 5 will seek treatment; 50% will develop dementia from depression. This is caregiver burnout big time. So what causes it, and how might it be avoided?

•Changing roles. It can be hard to separate long-time roles as a spouse, child, or friend, from new responsibilities as a caregiver. Struggling to sort it out can lead to stress and confusion.

Education is paramount to reducing the stress of handling this new role. Books such as Still Alice and Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias: 101 Stories of Caregiving, Coping, and Compassion; websites that offer in-depth information, such as the Alzheimer Society of B.C. at http://www.alzheimer.ca/en/bc.; workshops and support groups, can help.

•Unrealistic expectations. Alzheimer’s is a progressive disease with no cure, and expectations that a caregiver should be able to help the patient get better will lead to frustration.

Sharing one’s feelings with someone trusted (family, friend or professional); support groups, and grief counselling can help. In Campbell River, workshops on dealing with grief and grief counselling are offered by the Hospice Society. Go to http://www.crhospice.org/ or call 250- 286 – 1121 for more information.

•Lack of control. It can be difficult to manage one’s own life while taking care of another. A few key elements are:

Sorting out the financial end of things—obtaining Power of Attorney, a Representation Agreement, and possible disability tax reductions are important aspects. Talk to an accountant.

Maintaining one’s own social contacts, interests, and physical well-being are crucial. Take time to MAKE TIME FOR YOURSELF. This might involve talking to family members about sharing the responsibilities and/or talking to one’s Case Manager about accessing more supports.

•Unreasonable demands. Caregivers, families, or even the person being cared for, might be placing more responsibility on a caregiver’s shoulders than he or she can handle alone.

Talk to the Case Manager about respite and/or increased home care, discover free services such as the new Better At Home program whose trained volunteers can provide companionship and transportation assistance (250-287-2421 or email Brenda.wagman@crfs.ca); attend support groups, talk to a counsellor, talk to your doctor, talk to family members.

Caregivers taking care of themselves is not a luxury. It’s a necessity. Only when a caregiver is strong and prepared can they provide good care for others.