When caring for someone with dementia like Alzheimer’s disease, I have seen many of my clients’ family caregivers die before the person receiving the care. I read a recent article about Karen Boyer, the wife of Gene Wilder (who died from Alzheimer’s disease), where she talked about the stress and the love she felt. It was easy to see how that passion makes the caregiving spouse want to be the “one and only” care provider.
It’s only natural to want to do all you can for someone who has been kind and loving to you. Isn’t that what love is all about? Don’t we all want to be cared for by someone who loves us, and for us to care for the ones we love?
Some spouses fall into the default position of being the 24/7 caregiver, not by passion, but out of duty or obligation. If the relationship was not always good, or if the person in need of care had been less than kind, then caring for someone with dementia can become drudgery. It can bring about negative emotions of anger, resentment, disappointment, and depression.
Because these negative emotions can motivate actions, these caregivers might seek to place their partner in a care facility sooner than those in long, loving relationships. This situation can also cause serious health issues in the well spouse.
Both situations can bring the primary caregiver into what I call “over-caring.” The over-caring spouse’s entire life then revolves around that one aspect, with very little or no time spent on self-care. They spend their days and nights worrying, waiting and doing everything for (and about) the ill spouse or partner. The over-caring partner has often lost touch with friends, and no longer does outside activities like golfing, swimming or even walking the dog. They find little time to read, have lunch with a friend or shop for themselves.
When caring for someone with dementia like Alzheimer’s disease, research from Stanford University shows that 40% of the primary caregivers die before the person they’re caring for. The dedication required of caregiving can be deadly –- but it doesn’t have to be!
Self-Care for Caregivers
What are the self-care survival activities of the other 60% of primary caregivers?
- They have a good support system. This may include friends, a religious community, local support groups and good professional advisors from Physicians to Care Managers.
- They make it a priority to stay healthy. They exercise daily, they eat a healthy diet, and participate in mindfulness activities such as meditation or yoga.
- They stay socially connected to longtime interests, clubs and churches. They keep their mind active with classes, trips and outings. This is vital when caring for someone with dementia.
- They ask for help, and hire help – they share the caregiving so that they are not the “only one.” They accept the fact that others won’t do the job like they will, but they know self-care is more important than perfection in the delivery of care. This does not mean substandard care; it just means they don’t expect a clone of themselves.
- They are realistic about having to place the person for whom they are caring into a care setting. They pursue this option when they can’t get regular sleep or when the person’s behavior becomes challenging for them for any reason.
- They have a plan in place for the “what if’s” – they have toured facilities long before the need arises. They have amended legal documents and consulted financial experts about the costs of care and options for care.
It has been an honor and a privilege to have worked with this population of family caregivers for over 30 years. I have learned from those who have gone before you through my private work with heroes of care. This includes the many support groups settings in which I have been the facilitator, but not the teacher – for the real teachers are other caregivers. The wisdom comes from each person who attends the support groups, in the form of shared empathy and understanding. The practical and creative solutions they offer are amazing.
If you are caring for someone with dementia such as Alzheimer’s or a related disorder, call your local Alzheimer’s Association and ask about Support Groups. Hospitals and agencies such as Eldercare Services also hold support groups – so ask around and find one. It can be a real “life-saver.”
Affirmation: “I care for myself first so that I can care for others.”