Dementia doesn’t discriminate. It doesn’t care whether or not you have the resources or familial support to manage the symptoms of this progressive cognitive illness, and it won’t go easy on you if you have a difficult time providing the care required to assist you through the challenging times. Whether you have nothing or everything to give financially, it will not make it less traumatic on the heart level.
Caregiving for a loved one experiencing physical challenges has both similar and different hurdles. Pain medication can alter their personality, along with the depression that can come with limited mobility. The extra time and patience it takes to assist someone with transfers, medical transport and appointments, as well as the financial details of paying medical bills, requires someone to take on many roles that may not be familiar or comfortable.
Physical and/or cognitive caregiving both require the caregiver to also feel the need to uplift their loved one, even if they are burning out of enthusiasm on the inside. The pressure to make everything as smooth as possible for that person will eventually damage the very relationship they are doing everything in their power to support.
If you are caring for someone with any ailment that overwhelms you, I suggest you seek the support of fellow caregivers. They provide connection and healing through the shared experience and understanding that comes from being on this journey, too. Sheryl Sandberg emphasizes in her fantastic new book “Option B: Facing Adversity, Building Resilience, and Finding Joy,” that connection helped her “believe in new possibilities,” which she found to be the most valuable treasure of all.
After the unexpected passing of her husband, Sheryl learned about the great power found in the community of a support group for both herself and her children. This book educates those who are not in the tragedy about supporting the person facing it, and also encourages those who may be going through a traumatic experience.
Caregiving for someone with a progressive illness like Alzheimer’s is like a slow-motion traumatic experience. Those who haven’t been through it don’t know how to support you in the same way as those who have, so I encourage you to allow others in your position to become coping partners.
There are a number of regular opportunities for support island-wide that I’m aware of. North Hawaii Hospice has a bereavement group, Tutu’s House provides a wide variety of support groups, The Regency at Hualalai in Kona holds monthly Alzheimer’s support groups and Hawaii Island Adult Care in Hilo has monthly caregiver support groups, as well as monthly caregiver respite days.
The loss of the connection you had at home may lead to the connection of many others who could also benefit from your presence and experience as well. If you close yourself into your world of dementia and caregiving, you’ll go down a rabbit hole. Get out, get support,and see the beauty in your community.
Karyn Clay began caring for older adults 23 years ago and earned her B.A. in Gerontology from SDSU in 1998. This month she is celebrating the 15 year anniversary of Ho’oNani Day Center and she also owns Ho’oNani Care Home (founded in 2015), which are located on the same property in Kamuela. She invites you to join her Caregiver Conversations gatherings at Tutu’s House the 1st Wednesday of every month, as well as her YouTube Karyn’s Caregiving Support series.