If you can hear the sound of cheers echoing from Los Banos, it is probably the voices of the Alzheimer’s Support Group cheering about once more being the top team in Merced County’s Walk to End Alzheimer’s. This is the eighth year that the local Alzheimer’s Support Group has participated and come in first place.
This group and cause mean a great deal to me. Along with our beloved Eileen Sorenson, I was one of the co-founders of this important group, which has been active for over 28 years.
It seems like yesterday that I spoke to the Methodist Women’s Group, and shared that I cared for my mother, who had Alzheimer’s. Sorenson contacted me, sharing that her husband also had this heartbreaking illness. We discussed how little we had known about the disease until it invaded our lives. We shared the stress of being a caregiver to a loved one struck by its cruelty.
Together, we created the Alzheimer’s Support Group, which continues to meet on the third Wednesday of every month at noon at the Waffle House on Pacheco Blvd. Over the years our group has helped, or tried to at least support, hundreds of people as they struggled with their Herculean task.
It is hard to describe how much this type of support can mean to people who come into this group. Being surrounded by others also facing this challenge can be uplifting.
The ability to speak openly about your frustrations, ask questions about how others cope and to be offered ideas on how to deal with the unique circumstances of any form of dementia can literally be lifesaving.
I love this group for the wealth of support it offers and the love it fosters amongst us as we travel our own roads of living with this mind and memory stealer.
I will never forget the first time I realized something was amiss with my mother.
I went to her place of work one day to take her out to lunch, and her employer told me that he had to let her go over a month before because she could not use the cash register. I was shocked that my mother had lied to me every time she spoke about her job. It was so unlike her.
I challenged the employer about his criticism regarding her basic skills. My mother has been in sales for decades, and it was second nature to her. When I called my mother to ask about the situation, she became very rattled and paranoid, telling me that people were sneaking in at night and hiding her things.
Then she began to withdraw, and slowly I became more and more responsible for her affairs. An immaculate dresser all her life, she wore the same outfit every day and would throw an actual temper tantrum if questioned. She became afraid of water. Eventually, she forgot who I was.
On journeys such as these, so fraught with pitfalls, you need people to help you on the road. From the start, Linda Kujawa was a huge addition to the group. Since I moved, she has taken over the mantle of leader with great empathy and patience. Kujawa and the amazing Cindy Jorge, both of whom had mothers with Alzheimer’s, have been incredible Co-Chairs for the walk since my departure.
I am so proud of these women and all the members of the support group for their tireless dedication, energy and uplifting of people touched by the umbrella of dementia. Kujawa asked me to offer an invitation to all touched by the disease or those who simply want to learn more about it. Forewarned is forearmed. I believe that this group is a true hidden gem in the Central Valley.
Classes are frequently held to help support and inform, and I invite you to follow my notices so you will know when they will be available.
While dealing with any dementia-related illnesses can seem overwhelming, the best way to approach it is the same way you would eat an elephant, one piece at a time. Learn, reach out, talk to your medical team, be easy on yourself, look for respite and seek out resources such as this support group.
Since I first heard that frightening word in my mother’s doctor’s office, I have delved into everything I can to try to understand the understandable. I have authored endless articles and spoken at many locations to try to focus some light on this difficult subject.
There is evidence that there are familiar patterns. For instance, if your mother had the disease, you are at a greater risk of developing it yourself. But it is also a sort of wild card. These diseases can jump around and randomly appear.
It is not that you or your loved one has done anything wrong. Just skip that manner of thinking. It does not help.
Do not feel that you are weak if you feel overwhelmed, nor that you are unloving. It just means you are human. I spent a fair amount of time venting in the shower over the seven years of my mother’s illness.
If you have questions, reach out to your medical team. Find a support group. I have asked my medical team to give me the simple first scanning test to see if I have symptoms. You all can try them by getting a cognitive buddy much like many women have had with breast self-exams.
These two easy little tests do not mean you have a disease but may signal you might want to talk with someone about your concerns. First, draw a clock and place the numbers in their proper order. Then, try to show a time that is told to you by your buddy, such as 7:15. Is this hard for you to do or is it easy?
Second, have your buddy at the start of a conversation say, “Now I am going to tell you five random words. Try to remember them, as I will ask you to recite them in about six minutes.” Then do it.
In the meantime, and this advice is good for everyone as we mature, exercise your mind. Play chess or checkers, do word searches and try to learn a new skill such as a foreign language. And, please, stay involved with other people. Self-isolation is not good for any of us.
You are not alone. As with anything in life, it is easier to share than to try and carry a burden alone. Diana Ingram can be reached at DingramThursto
