Counting Blessings Despite Dementia
Dementia is often incorrectly referred to as a disease rather than as a diagnosis. The term “dementia” is broadly used—there are 10 types of dementia—but it’s really an umbrella term to describe a range of varying symptoms, which include memory loss and cognitive impairment. These are perhaps the first two symptoms that come to mind when thinking of the dementia diagnosis. Other symptoms will accompany depending on the specific dementia disorder that an individual is diagnosed with. What is common in all types of dementia is the fact that an individual’s symptoms will get worse over time leading to both physical and mental decline—interfering with both daily physical activities as well as communication and executive functions. Oddly, one constant through the dementia process is that the symptoms of the process will affect each person uniquely.
I have been asked multiple times, by families of patients and clients, “how will my loved one be affected? Will the process be quick or will it be slow?” Families want to know if their loved one will still recognize them, will they still be able to eat, swallow and recognize their grandchildren. Clearly the thought of their loved one experiencing any one of these scenarios range from concerting to downright terrifying.
I recently made a wonderful friend in Carol*. Through the course of conversation I came to learn that Carol’s husband was diagnosed with Fronto Temporal Dementia when he was 57—he is 60 years old now. Fronto Temporal Dementia accounts for 2 – 4% of all dementias and is also called Pick’s Disease. With this type of dementia cognitive and executive functions are primarily affected. I was teary as Carol described how her husband was affected. I told her how sorry I felt for her. Carol responded with a warm smile and told me not to feel bad for her, she is thankful for each and every day she has with her spouse. Some days are more challenging than others but she chooses to not feel, as she said, “victimized,” by this situation. Instead she shared some of the truly funny, and off-the-wall things her husband has had to say. We were both teary eyed—from laughing.
Carol is a very blessed and fortunate person. She views her life as a glass half full rather than half empty which, given the challenging circumstance, is admirable. Carol chooses to nurture a grateful spirit. It is a task that takes work, persistence, and a joyful attitude despite the hurdles that life is throwing at her family. Instead of Carol counting losses, she is thankful for the 37 years she has had, and continues to enjoy, with the same loving man. Her children are supportive and loving, and while living lives of their own, they complete the family circle of love and understanding. Extended family and local friends who love and support Carol and her husband in a variety of ways round out the experience. Carol and her husband are supported by a team of earthly angels who help them over hurdles and celebrate the little victories.
Who are you? Are you an earthly angel to someone going through the hurdles that the dementia process is throwing at them and/or their loved one? Are you living with one of these diagnoses or a caregiver to someone with one of the dementias?
Whatever role you find yourself in, be kind to yourself, to the individual you care for or the family that you may be an angel to. Learn as much as you can on the specific dementia process that the individual has been diagnosed with. Education is empowering and can help us cope with the uncertainties that life brings. Carol shared that as she looks back on her career, there are positions she has served in that have helped to prepare her for this experience with her husband. Carol feels her current role in hospice will prepare her better for what will eventually come down the road. As Carol’s, and her spouse’s journey continue, they take one day at a time and continue to find gratitude in the little joys in life.
* name has been changed