By Margaret Andersen
This is my story and the story of every caregiver of those with dementia.
In 2006, my husband was diagnosed at the Mayo Clinic as having "cognitive impairment"-the non-definitive description of a tragic physical/medical condition. Alzheimer's cannot factually be diagnosed except thru the autopsy of the brain.
The incidence of Alzheimer's disease is growing at an epidemic rate in America. More than 5.5 million Americans have the disease and a new person is diagnosed every 72 seconds. One in eight "baby boomers" will be diagnosed with Alzheimers. That is over 10 million U.S. "baby boomers." There are more than 40,000 New Mexicans living with Alzheimers and other forms of dementia. The family members affected are beyond count. These families need much in community support. They need to relate with others, whose lives have changed as theirs have. They need Adult Day Care. They need community volunteer workers, who will give them some respite.
There are many reasons for, and manifestations of "cognitive impairment dementia." I had no knowledge or experience with any of them. Being a retired librarian, I researched. I learned as much as I could. I managed as well as I could. I did my best. Caregivers learn their "best" never seems to be quite good enough.
I heard from a friend how great she felt the Alzheimer's support group was that she had attended in California. She spoke of what emotional support it truly was. She spoke of how much the caregivers learned from each other; and what a special bond was formed by the sharing of their experiences. I had never belonged to any support group but I did know I needed support.
Silver City has an excellent hospital, physicians, mental health providers, and various other support groups. There was NOTHING for Alzheimer's. I phoned every medical/health/mental health/volunteer service in Silver City to no avail.
When I contacted Gila Regional Medical Center's Home Health and Hospice, I was told they had thought of starting one but lacked the professional time and personnel to do so. I told them if they or no such local organization would start one, I would.
In May, of this year I attended an excellent course on "Alzheimer's Caregivers " presented by Maia Sideris-Dorame, the southwest Regional Manager of New Mexico Alzheimer's Association. This was held two hours every Tuesday for six weeks at the Silver City Senior Center. Participation by those attending was encouraged and gave me the personal experience of how much expressing shared experiences can mean to a caregiver.
At the first meeting I sat down and looked at the faces around me. I saw stress and anxiety, fear and grief. I thought, " Oh My God, that is what I look like!"
Mirror upon mirror upon mirror. And the stories came forth. "I want to scream when my mother pushes her food around her plate and won't eat." "I am so sick and tired of answering the same question 500 times a day." "I can't understand why my father forgets to brush his teeth when I put the tooth brush in his hand." "I wanted to die when my wife woke up and didn't recognize me." "I feel so guilty and angry at myself when I lose my patience." "The worst thing is we have lost our shared memories." "The worst thing is she can't remember our children's names." "The worst thing is she can't remember they are her children" '"The worst thing IS-there is always one more "worst thing." And every time a caregiver thinks they have a handle on it, everything changes; and their state of always feeling overwhelmed and exhausted expands in those increments.
The bottom line is no one can understand what living with any type of dementia is like unless they are living with it. The emotional stress caregivers suffer is not commonly recognized by others-except by other caregivers. Some of those who attended this course formed the core group of this newly founded Alzheimer's/Dementia Caregivers Support Group. In my attendance at Maia's six-week course and at the Southern Regional Caregivers Conference in Las Cruces on June 30, I was made even more aware of the greater need for such a Support Group here.
We started with meeting each Tuesday from 1-3 p.m. at the Silver City Senior Center's library, and we recently added another meeting at the Gila Regional Medical Center Board room on each Saturday from 10 a.m. to noon to accommodate as many as possible who would want to attend. All attending our meetings need to know that their views and feelings will be respected and what they say, what they share is personal, private and confidential. Informational materials about many Alzheimer's/dementia related topics are available at the meetings and we will have guest speakers and educational movies on occasion.
The remarkable people with Gila Regional Medical Center's Health and Hospice-Siri Khalsa, Kathryn Schmid and Connie Hostetler-have been incredible advocates and supporters of this caregivers group. They have been totally engaged and have given and continue to give every assistance they are able to. Through their advocacy we now have a second facilitator besides myself-John Reeves-a retired Hospice worker who devotes much time to various community services.
All of us are aware many might like to attend the Caregivers Support Group meetings but are unable to as they have no one to attend those they care for. According to Arminda Martinez of the Silver City Volunteer Center, there is a long waiting list for such volunteers.
For more information regarding the Silver City & Grant County Caregivers Support Group call Maggie Andersen at 575-388-4539 or John Reeves at 575-590-0078. Call Maggie for an address, if you wish to send mail to her. You may also email her at the address below.
Margaret (Maggie ) Andersen
575-388-4539
