If we need a village to raise our children, don’t we also need a village to care for our aging and ill?
I couldn’t have helped my mother care for my dad with Alzheimer’s disease if I didn’t create a village. From the paid professionals (lawyer, doctors, financial advisor, home health aides, hospice) and providers of products and tech (medical rentals, house security and cameras, large screen tablets, fall detection systems, medical and senior transport, sanitary and urinary products), to my siblings, friends, and support groups, I needed logistical and educational help to get me through.
I sought out #assistance to help with tasks. Asked for guidance, attended classes and events, became a certified home health aide, and read tons of information on the web and in books, about things I knew little. For things I didn’t need to do in-person, I recruited my siblings to help remotely.
I also needed help emotionally. Some of the feelings that came up seemed wrong to me. I learned to name these emotions and then worked through them. Anticipatory grief. Guilt. Rage. Depression. Anxiety. Gratitude. Insecurity. But mostly I had to manage #resentment for things over which I had no control. I accepted scholarship funding support from a community organization and attended weekly #counseling sessions which helped me put myself in check. I acquired the helpful perspective that I was not alone and that all feelings are valid.
At the local university there was a Memory Care Center which allowed me to attend free support groups for children caring for parents. At the same place, I got my mother into a group for people caring for spouses. At another organization, my mother joined a group for people caring for someone with Alzheimer’s disease. We couldn’t be at ease to share our truth if we were only talking to each other. Having a group, separate from family, helped me deal with everything honestly and freely.
From 2016 to 2021 I was primary local hands-on caregiver support for my mom and dad as my father went through his Alzheimer’s battle. Since 2021 when he passed away, after my own cancer diagnosis, I became secondary caregiver for my mother. I still manage the things I can do remotely, but my siblings have stepped in locally once Mom agreed to move to assisted living near them. My mother has much of what she needs in her new community and is building her own village for self-care.
Creating a village allowed me to recover when I needed to. It gave me the resources I needed ahead of time. I only needed to make a phone call when something changed or popped up out of nowhere, thus activating my network.
In the process, I became a caregiving advocate, serving on a statewide government appointed council to help create a dementia friendly community. I worked with a university nursing school on creating a more user-friendly package for writing one’s end-of-life, critical illness wishes. Helping others lifted me.
Ultimately, I created my own manual of how to do all I needed to do because so many people asked me for “the list” of how to make caregiving easier. None of us wants to feel like we are failing. Super-human is not possible 24 hours a day, 7 days a week, 365 days a year. Caregiving does not take vacations.
Since the writing of I’ll Be Right There: A Guidebook for Adults Caring for their Aging Parents, I’ve been asked to help others. Mostly people want to know how to engage their siblings or outsiders to HELP! They want to stop fighting with other people involved in decision making. They want help to find free or low-cost services. They want to know how to keep their loved one at home without making someone fail medically or everything falling apart or ruining relationships. These are things I can do. I keep writing more guidebooks because at some point, I will run out of hours of the day and people want/need help urgently. When I’m not here anymore, my books will still help people. This gives me great comfort, knowing that I have a purpose, a value, a mission that is beyond day-to-day caregiving. I am working towards living my optimal life. I wish that for all my fellow caregivers.
I encourage you to create your own village and enjoy the feeling of being buoyed by others and the knowledge that you are not alone. Find your joy in some place as often as possible. Once you have these things, caregiving will take on a whole different energetic feeling.
#allfeelingsarevalid, #youarenotalone, #liveoptimallife, #caregivervillage