As the caregiver of a spouse with irreversible dementia, I neglected to fully understand this advice: You can care for others best when you also care for yourself.
When my husband was diagnosed with Alzheimer’s four years ago, I immediately went into protective mode. All I wanted was to do everything in my power to keep him safe, happy, comfortable and always feeling loved. And I was determined to keep him home for as long as I possibly could. This, I promised him in response to his tearful plea not to be placed in a care facility, away from me and the secure surroundings of home.
So, instead of diving deep into the extensive literature on Alzheimer’s, I worked with my husband on downsizing from a large home to a smaller residence and had meetings with our attorney and financial planners to review investments and update our trust. I also spent time investigating long-term care facilities, just in case. This took time and effort. It also served as a distraction from the fact that little by little, the love and comfort of my life was slowly disappearing.
Taking care of my husband was a joy for me, yet an all-consuming experience that diverted my attention away from taking care of myself. My daily routines were centered around his safety, medications, appointments, nutrition, calming his distress and mood swings, and being on call 24-7 to monitor sleepless nights and personal hygiene issues.
I was so focused on making sure he was OK that I barely noticed how overwhelmed and exhausted I was. It is so true that the constant demands of caregiving can leave little room to acknowledge that you, too, are grieving, struggling and in need of care. According to the Alzheimer’s Association, an estimated 7.4 million Americans 65 and older are living with Alzheimer’s dementia. And certainly, anyone reading this has, or is, or will be, living with the reality of this disease.
My husband passed away last year. Just prior to his death, I had completed the paperwork necessary to enroll him in a local adult day program where he would have been able to participate in a variety of social activities in a safe, supervised environment. Having this resource available to us would have allowed me the time during the day that I needed to run errands, do grocery shopping, attend appointments, or simply get the uninterrupted rest I so desperately needed, while at the same time providing my husband with the social interaction and comfortable conversations, physical activities, as well as cognitive stimulation that would have given him so much joy and fulfillment.
Unfortunately, there is no longer an adult day program in Kern County that specializes in supporting seniors with memory loss and dementia. Losing this program has meant that we have lost a vital source of respite and care for families who so desperately need it. However, there is a group of local caregivers that is collaborating with an existing nonprofit, Valley Caregiver Resource Center, to bring a new adult day program called Kern OASIS to Bakersfield that specializes in supporting seniors with memory loss and dementia-related diseases.
Valley Caregiver Resource Center, Fresno, is a longstanding caregiver service in operation for more than 35 years and has been operating a memory care adult day program called Oasis for 22 years in Fresno. VCRC, Fresno would like to bring its expertise in running an adult day program to Kern County along with its grant writing experience, once the local community is able to obtain the funds necessary to set this project in motion. The new day program will be called Kern Oasis.
This endeavor takes funds and a building big enough for the day program activities. We are actively reaching out to the community for support to bring an adult day program back to our area. Donations are tax deductible.
VCRC is a non-profit 501©3. Their tax ID is #77-0370104. Checks can be made out to Valley Caregiver Resource Center (5363 N. Fresno St., Fresno, CA 93710) with “Kern Oasis” in the memo section. Please donate if you can. On behalf of caregivers like myself, thank you for your consideration.
Linda Elieff of Bakersfield is a caregiver for caregivers supporting Kern OASIS and is a retired speech pathologist with the Kern High School District.