Guest column: Why learning about dementia can help you plan, prepare as a caregiver
As some readers may know, my family and I spent over 8 years caring for my late father, Gordon C. Gunn. We were able to work as a team to care for his needs for those 8-plus years, but I can say confidently that the heaviest portion of his care fell on my mother. Typically, one or two of the caregivers in a family carry the majority of the burden, and it often feels like the weight of the world is on their shoulders.
The primary caregiver often will only tell you about 10% of what is really happening as they care for your loved one because they naturally minimize the stress and burden.
It is important to check on your family caregiver and advocate for them to find relief when necessary. Caring for a loved one living with a diagnosis of dementia is a full-time commitment and requires your constant attention. I would like to specifically focus on the caregivers of a loved one with dementia, while also addressing personal diverting strategies for caregivers to utilize.
First, there are various types of dementia that can be diagnosed. If someone gets diagnosed with dementia, it means they have a progressive and sometimes chronic brain condition that causes problems with their thinking, behavior and memory. Dementia is not a disease, but a syndrome; its symptoms are common to several brain diseases. It will get worse over time, but medications might slow the decline and help with symptoms, such as behavior changes. There are many different types of dementia, and your loved one's treatments will depend on the type they have. Experts believe between 60% to 80% of people with dementia have Alzheimer’s, and more than 5 million Americans have been diagnosed with this disease. It's what most people think of when they hear the word "dementia."
After the initial diagnosis of dementia that my father received, we as a family wanted to make his life as normal as possible as he went through the various stages of dementia.
During the preliminary stages of dementia, your loved one often will show a lot of frustration because they are in a sense “losing their mind.” It is crucial to not be in denial of what is occurring. You need to assure them you are going to do this together. I would strongly recommend that you never use the phrase, “Well, don’t you remember?” DO NOT ask that. Your loved one often will have an instant sense of shame for their “mistakes.” Often my father was repetitive and asked me the same question over and over, and I would strive to answer him each time rather than getting upset regarding the repetitions. We were encouraged by my father’s doctors to utilize what they called “therapeutic fibbing” or redirection. In general, “therapeutic fibbing” refers to being creative when instructing or providing information to a dementia patient to minimize agitations.
For instance, with regards to my father, he always abided by doctors’ orders. To capitalize on this, we would write instructions on multiple 3x5 cards for him, such as “Brush your teeth and wash your face.” We would actually sign the doctor’s name and tell him that it was a prescription from his doctor. He would then perform the task without hesitation because from his perspective, the task was doctor-ordered. This allowed us to redirect my father toward a more positive outcome.
Additional strategies that I recommend would be to give your loved one repetitive activities or tasks that they can do easily.
My father loved to fold laundry or rake leaves because he was being helpful or useful which allowed him to contribute to the household.
You have to think outside the box with loved ones because even getting dressed each day can be a daunting task. My father had issues with pulling his shirt over his head, which really upset him. To address this issue, we had Velcro sewn into the top section of his tank top T-shirts to allow him to step into the shirt and pull it up to be connected over his shoulders.
Being inventive is often your best friend in these situations because diverting them is often your only way to get both of you through a task or activity with limited frustration and tears. I encourage you to put music on, sing and dance through an issue and always keep your tone of voice positive and upbeat, accompanied by a smile.
Speaking to their spirit is important ,as well, as this part of them never fades. I strongly advocate that as their caregiver, you attempt to connect with them in this way.
There are also many resources available to family caregivers who need support or respite care.
The Alzheimer’s Association has a 24-hour call center at 1-800-272-3900.
There are Alzheimer’s support groups at retirement communities, along with the Veterans Affairs centers, which do not require you to be a veteran to attend.
Villages OKC, which can be reached at 405-990-6637, will send a volunteer to join you on activities like going to the movies or the park with your loved one.
Respite care vouchers also are available for free by calling Terry Mulkey, the administrative officer of Oklahoma Aging Services, at 405-321-3200.
There are two books that I believe are must-reads:
"The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer's Disease, Other Dementias, and Memory Loss" by Nancy L. Mace and Peter V. Rabins.
"Coach Broyle’s Playbook for Alzheimer’s Caregivers."
Each of these books is available via Audible, and "Coach Broyle’s Playbook for Alzheimer’s Caregivers" also is available for a free PDF download.
I strongly encourage you to research extensively to become more educated about dementia. This way you can assist your loved one through this process as gracefully as possible. Whether you are the primary or supplementary caregiver, being informed and educated on diverting strategies and available resources is imperative for your own emotional and physical well-being. We can do this TOGETHER!
Robin Gunn is the owner of The Oklahoma Senior Journal. She can be reached at rgunn@okseniorjournal.com
This article originally appeared on Oklahoman: Robin Gunn: Learning about dementia can help caregivers plan, prepare
