Caregiving is a partnership in which each party has needs and requires care. There is a tendency, however, to focus on the problems of the person with the disease to the exclusion of the caregiver. This doesn’t work.
As support group leader and Manager of the Support Group program, I have spoken with thousands of Alzheimer’s caregivers. A theme I consistently hear is how overwhelming, draining and confusing being an Alzheimer’s caregiver can be.
Having been an Alzheimer’s caregiver for 8 years, I know the experience from the inside and that it’s too much to go through alone. But it doesn’t always have to feel that way.
Some Alzheimer’s caregivers call the Chapter immediately upon diagnosis to find out what programs and services are available for their relative with the disease and for themselves. However, the vast majority wait until they become depressed, isolated, frustrated, angry and have reached a place where they can’t take it anymore. At this point their desperation removes any doubt they need help.
This is the time caregivers need to be with others who have been there – who understand what they’re going through. This is a fundamental principle of support groups: there is community, which offers hope and strength. The caregiver no longer feels alone and isolated.
Another principle of support groups is learning from each other’s challenges and successes. We witness our experiences through other people and thereby gain clarity and a new perspective on our own situation. In effect, we help each other to create emotional distance so we are more patient and less reactive. We develop and strengthen our capacity to understand the effects of the disease, which expectations are realistic, which battles are worth taking on and what our limits are.
Living with Alzheimer’s disease or any of the dementias is a destabilizing experience. The group supports each individual’s effort to regain balance in his or her life and to think about their own needs. The ultimate goal is to improve the quality of life for the caregiver and the person with dementia.
To find out more about the Chapter’s support group program, please call Wendy Panken, Manager, Support Groups, at 646-744-2917 or send an e-mail to firstname.lastname@example.org.
(A phone call is preferable.)
— Wendy Panken, LCSW
Manager, Support Groups
As the weather began to change, the members of “Connections” — a weekly activities and socialization program for earlystage people held at the Chapter — caught spring fever and wanted to spread it around. They used their weekly meeting to make “Happy Spring!” cards for sick children and their families staying at the Ronald McDonald House of New York while undergoing cancer treatments at local hospitals. Lauren Tiede, the Program’s facilitator, provided guidance and inspiration as the participants went about their artistic endeavors. On receiving the cards, Helen Stafford, Volunteer Director at the Ronald McDonald House, stated, “A big thank-you to you and all who helped make the onset of spring for our families ever so special. You really are the best and we appreciate you more than you will ever know.”