There comes a time in the lives of many people when they understand they must “bite the bullet.” With caregivers for Alzheimer’s and other progressive dementias, it is most likely the moment when the diagnosis is made for our loved one, or when we see our loved one gradually losing cognitive and functional abilities.
A caregiver support group can assist those caring for loved ones with dementia through difficult times. Learn more about using a support group for dementia.
I am oftentimes asked if the role of caregiver is not inherently more palatable due to my profession as a clinical psychologist. I always offer a resounding, “NO!” Assessing a patient for dementia is totally different than caring for that person’s needs 24/7. When attachment and emotion is involved, no amount of training can prepare you for the devastation of the one you have loved and admired for decades.
Many of us can manage the cognitive and physical tasks which we now need to do as our husbands, wives, mothers, fathers, brothers, sisters, aunts and uncles sink further into the quicksand of dementia. But, the battles we fight daily are something none of us are trained to manage.
We take over the checkbook, cooking, cleaning, driving and laundry, while we battle feelings of “Why is this happening?” daily. The Golden Years we had diligently planned for are not even in the repertoire anymore, as we go to see an elder attorney. We do our trusts and our estate planning, our POA’s and our Advance Directives, while reading up on statistics that tell us that we caregivers are far more likely to die before our same-aged peers. Furthermore, over half of caregivers will die before the loved one for whom we care.
In order to protect ourselves, we caregivers must pay attention to ourselves. It goes without saying that a proper diet and routine exercise keeps your body conditioned to resist disease. Sleeping is problematic, so inducing sleep though relaxation, soothing sounds and a nightly chamomile tea may help. But, eventually, none of this is enough. The emotions are so powerful that they begin to invade the core being of the caregiver.
It is then time to find a caregiver group.
Your caregiver support group could be an organized group of caregivers who meet regularly, sharing the good, the bad and the ugly without fear of recrimination of negative evaluation. But, your group must be those who are in the same warrior group as you — those who understand how dramatically their life plans have been altered.
Your group needs to understand that their collective journey is not done yet. It is not highly likely that your group will be found among your existing friends. As close as friends may be, they are also so relieved that your battle is your battle — and not their battle.
Your group will probably start out as strangers and end up as supporters, companions and friends. They will be caregivers who are not ashamed to bear their souls and allow you to see the ugly side we all want to hide. They will be among the most courageous people you will ever meet and know for they will stay the course.
When the time comes that your group members must relinquish or share the caregiving role with others, they remain advocates for their loved ones and they will continue to help you on the completion of your own journey.
Your group will tell you that when your loved ones must be placed, you have already met and exceeded the promises you made to your husbands, wives and parents. You made those promises at a certain place and time and the spirit of your promise will continue to the end. But, those places and times when the promises were made are long past and the group will tell you that your priority is now to save yourself.
Finally, the group will be with you to help you to the life that is yet to come.
Have you used a caregiver support group for dementia? What impact has your support group had on your life? Share your story with us in the comments below.
Dr. Karen Hutchins Pirnot is a Clinical Psychologist, specializing in pediatric and geriatric psychology. While working in Iowa, she did legal consultations and assessments for the Juvenile Justice system. After a move to Florida, Dr. Pirnot practiced in skilled nursing homes, assessing and consulting for dementia patients. She also conducted disability evaluations for the State of Florida. Retired, Dr. Pirnot is now a caregiver for her husband. She enjoys going to concerts, Little League games and social interactions with family and friends.
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