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 meet her needs for over 8 years, but I can say with confidence that most of her care fell to my mother. Typically, one or two of a family’s caregivers carry the majority of the burden, and they often feel like the weight of the world is on their shoulders.
The primary caregiver will often only tell you about 10% of what is really going on while caring for your loved one, as they naturally minimize stress and burden.
It is important to check in with your family caregiver and advocate for them to find relief if needed. 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 focus specifically on caregivers of a loved one with dementia, while also addressing personal diversion strategies that caregivers can use.
First, there are different types of dementia that can be diagnosed. If a person is diagnosed with dementia, it means they have a progressive and sometimes chronic brain disease that causes problems with 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 may slow the decline and help relieve symptoms, such as behavioral changes. There are many types of dementia, and your loved one’s treatment will depend on which type they have. Experts believe that between 60% and 80% of people with dementia have Alzheimer’s disease, and more than 5 million Americans have been diagnosed with the disease. This is what most people think of when they hear the word “dementia”.
After my dad was initially diagnosed with dementia, we as a family wanted to make his life as normal as possible as he went through the different stages of dementia.
During the preliminary stages of dementia, your loved one will often show a lot of frustration because they are sort of “losing their minds”. It is crucial not to be in denial about what is happening. You have to assure them that you are going to do it together. I strongly recommend that you never use the phrase “Well, don’t you remember?” DO NOT ask that. Your loved one will often have an instant feeling of shame for their “mistakes.” Often, my father was repetitive and asked me the same question over and over again, and I tried to answer him each time rather than getting upset over the repetitions. We were encouraged by my father’s doctors to use what they called “therapeutic lying” or redirection. In general, “therapeutic lying” refers to creativity when it comes to instructing or providing information to a patient with dementia in order to minimize agitation.
For example, with regard to my father, he always respected the orders of doctors. To take advantage of this, we would write instructions for him on several 3×5 cards, such as “Brush your teeth and wash your face”. We actually signed the doctor’s name and told him it was a prescription from his doctor. He would then complete the task without hesitation because, from his point of view, the task was ordered by a doctor. This allowed us to redirect my father to 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 folding the laundry or raking the leaves because he was helpful or useful, which allowed him to contribute to the household.
You need to think outside the box with your loved ones because even getting dressed every day can be a daunting task. My dad had trouble pulling his shirt over his head, which really upset him. To solve this problem, we sewed Velcro into the top of his tank tops to allow him to enter the shirt and pull it up to tie it over his shoulders.
Being inventive is often your best friend in these situations, as deflecting them is often your only way to help the two of you complete a task or activity with limited frustration and tears. I encourage you to put on some music, sing and dance to an issue and always keep a positive, upbeat tone of voice, accompanied by a smile.
Speaking to their spirit is also important, because that part of themselves never fades. I strongly advocate that as a caregiver you attempt to connect with them in this way.
There are also many resources available for 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 disease support groups in retirement communities, as well as at veterans centers, that don’t require you to be a veteran to attend.
- OKC Villages, 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 are also available free of charge by calling Terry Mulkey, the administrative agent for Oklahoma Aging Services, at 405-321-3200.
There are two books that seem essential to me:
- “The 36-Hour Day: A Family Guide to Caring for People with Alzheimer’s Disease, Other Dementias, and Memory Loss” by Nancy L. Mace and Peter V. Rabins.
- “Coach Broyle’s Playbook for Caregivers of Alzheimer’s Disease.”
Each of these books is available through Audible, and “Coach Broyle’s Playbook for Alzheimer’s Caregivers” is also available as a free PDF download.
I strongly encourage you to do extensive research to better educate yourself about dementia. This way, you can help your loved one through this process as gracefully as possible. Whether you are the primary or additional caregiver, being informed and educated about diversion strategies and available resources is imperative for your own emotional and physical well-being. We can do it TOGETHER!
Robin Gunn is the owner of The Oklahoma Senior Journal. She can be contacted at [email protected]