By: Dan Taylor, Volunteer, Alzheimer’s Association
Caregivers are unsung heroes. November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month, offering an important reminder to support Texas caregivers. Caregiving needs are extensive and increase over time – on average four to eight years following a dementia diagnosis.
I have first-hand experience, serving as primary caregiver for my wife, Nelda, during her 12 year battle with Alzheimer’s. For the past year, I have volunteered with the Alzheimer’s Association as a facilitator of caregiver support groups.
Experience has taught me a lot about the challenges faced by those who are caregivers. Time seems to freeze when facing the approaching death of a loved one. It is like a piece of your heart has been torn away. But time and life go on after the diagnosis is made.
The person under diagnosis rightfully receives most of the attention and concern. But the caregiver is there 24/7. There is never a break. Even if the caregiver has time apart, their thoughts and focus remain on the loved one. To fully understand what it means to be a caregiver, one has to fill that role. As the dementia progresses, patients lose their sense of self. They say strange things, ask questions repetitively, and often experience changes in behavior. The caregiver is in the unique situation of making all the decisions not only for themselves but also for one if not two more people.
While the patient requires appropriate medical care, both the patient and the circle of family and friends require psychosociological support. The fears and feelings that surface at a time such as this need addressing rather than ignoring. Often that responsibility falls on the caregiver. Some of the support concerns practical details. End-of-life care needs to be arranged and funeral plans need to be considered. Legal and financial matters must be addressed now or in the days after the death. Spiritual issues search for resolution and peace.
A common challenge to all caregivers is learning to be comfortable in someone else’s reality. As confusion increases and repetitive behaviors become the norm, learning to respond to the emotion being expressed instead of the actual words being used is difficult. All behavior is a way of communicating something.
Caregivers are in the unique position of grieving twice. We experience anticipatory grief following the diagnosis. We know what will happen one day. We don’t know when and how. When death occurs, we grieve again.
Among caregivers for people with Alzheimer’s and other dementias nearly one in four are “sandwich generation” caregivers who care for both an older adult and a child. Nearly 60% rate the emotional stress of caregiving as high or very high. As many as 40% report symptoms of depression.
According to the Alzheimer’s Association, caring for people with Alzheimer’s can have a negative effect on employment income and financial security. Among caregivers for people with Alzheimer’s and other dementias who are employed full or part time, 57% said they had to go in late, leave early, or take time off because of their caregiving responsibilities. In addition, 18% had to go from full to part time, 16% took a leave of absence, and 8% turned down a promotion due to the burden of caregiving. Only half of employers have policies that support caregivers: 53% offer flexible work hours/paid sick days, 32% offer paid family leave, 23% offer employee assistance programs, and 22% allow telecommuting.
This November, I invite all Greater Austin area residents to join with the Alzheimer’s Association Capital of Texas Chapter in supporting these caregivers. Reach out to the Alzheimer’s Association Capital of Texas Chapter to learn more and get involved.
Alzheimer's Association
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.