by Guest Contributor, Dr Joseph J Bucci
July 13th 2023
I see him there, in the dark through the camera lens. Over time, we have placed cameras at strategic locations in order to keep an eye on him – not to invade his privacy, but to keep him safe. Sometimes he sleeps through the night; but many times he is up, sitting alone in his chair in the dark room.
We used to run in and check on him, and listen to his outlandish stories – like the one about building a bridge across the Atlantic Ocean; or how his bed frame had water running through it. Now we see him through the camera lens, check that he is OK, and then roll back over to try and sleep. The morning comes soon enough. He may be back in his right mind, or we may have to re-direct him after he awakens with another hallucination.
When I said “I do” to this lovely young woman of nineteen so many years ago, I did not realize that it would also mean caring for her father as he went through Dementia. His once strong and confident step has now become unsteady, tentative and labored. He sleeps much of the day, and we try to keep him alert so as to avoid him sitting up nights and filling us in with fanciful tales of capturing robbers and protecting the house from attack – if he can even recall that the house he is protecting is actually his.
The term “Dementia” is a general term which refers to the loss of cognitive functions (VA Office of Aging Services, 2023). It is not a specific disease but an overall term representing different types of symptoms. It is not something that happens to every older person. Dementia is caused by damage that occurs to the brain from other disease or trauma (VA Office of Aging Services, 2023). Alzheimer's disease is the most common cause of Dementia (VA Office of Aging Services, 2023).
The federal government and many states provide tools for the families of individuals who are working through this process. The National Institute on Aging provides health tips and brochures with lots of information on the disease and its prognosis (National Institute on Aging, 2023). It is important to review the available resources, and to discuss next steps with other caregivers and those who provide these services, in order to get a grasp of all that is happening or has the potential to happen (National Institute on Aging, 2023). If you are experiencing these symptoms with a loved one, you should know, first of all, that you are not alone in this. There are agencies and groups that want to help.
Secondly, each family deals with this diagnosis and its treatments differently. But it is important for you and your family to be in agreement on what you will do and how you will manage this disease. A survey commissioned by Humana Inc., a medical insurance provider, asked 1,000 US baby boomers ranging in age from 45 to 64 about the impact of caring for elderly parents and other family members (Editorial Team, 2010). Boomers surveyed suggested that their own health and well-being came second to caring for the health needs of their loved ones. 63% of those surveyed devoted less time to personal interests; and almost half of those surveyed have chosen to give up social activities and vacations in order to care for their loved ones (Editorial Team, 2010). But do other members of the family agree with giving up vacations and personal interests in order to care for Grandpa?
My parents passed away early. My father left us as children, and we never heard from him until after he passed. My mother had heart disease and a series of strokes took her many years ago. My wife's parents lived longer, with her mom finally succumbing to her own heart disease prior to COVID. Then during COVID we decided to move in with Pops, since the love of his life had left him alone after 58 years; and commuting was not working. (BTW, loneliness is the number one reason for attempted suicides among seniors, according to the National Council on Aging, 2021).
In the beginning it was easy. Pops would just sit in his special chair and flip through the channels on the TV all day long. The biggest challenge was when he clicked on something that we couldn't change; and we tried not to order some special service on which he had landed. But recently there has been a rapid decline.
At first I was not on board. “This is your father,” I would say. I did not realize how hurtful this was, but one day I got the message. I felt as though the Lord revealed to me that I would need to be willing to clean up my father-in-law’s urine and see him naked and struggling. I finally accepted that this was God preparing me for what was to come. I have often thought back to God’s kindness in revealing this truth to me, on those days when incontinence ruins a good pair of new shorts, or another hallucination creates panic. It is not his fault. It is not my fault either. It is the disease, it is not him. It is also my opportunity to serve my wife by serving him.
I have struggled a little bit with my role. As a baby boomer, I really like to work, and I do not often like to take Pops on short day trips. Nevertheless, this is a learning time for both of us. Once we think we've mastered the challenge and set processes in place to manage our lives and the care of Pops, suddenly things change. He begins another decline. We tell ourselves that at some point this will lead to some assisted living or maybe more determinative care. But we don't know when, and he still generally knows who we are, although I sometimes have to remind him that I am his favorite son-in-law.
I remind myself that someday this could happen to me, or to my lovely wife. No one wants to be a burden to the family. This and the loneliness issue are some of the reasons for the sky-high suicide rate among seniors (National Council on Aging, 2021). 20% of all suicides in 2020 were attributed to people aged 65 years and up (National Council on Aging, 2021).
We pray for anyone going through the situation. It is hard to manage, but harder to watch the person whom you've grown to respect and know as a very independent thinker suddenly wet their pants every night and not know how to stop. We are grateful for every day that the Lord gives to us; and grateful for the opportunity to learn service at the feet of the 90-year-old man who is not sure who I am. But I know who he is, and I know that the Lord has chosen me on whom to pour out this special blessing.
(Joseph J. Bucci has served as a Pastor, Author, HR Director, Director of Training, Professor and Consultant. His new book, Redemption Inc. was published in 2022. Contact Dr. Bucci at joe@josephjbucci.com)
Sources:
· VA Office of Aging Services (2023). Virginia Dementia Road Map: A guide for people impacted by Dementia. Virginia Division for Community Living: Office for Aging Services. Retrieved from https://www.vda.virginia.gov/dementiacapableva.htm.
· Editorial Team (2010). HUMANA INC: Baby Boomers Put Own Health on Back Burner to Care for Parents, Other Loved Ones. MarketScreener.com. Retrieved from https://www.marketscreener.com/quote/stock/HUMANA-INC-13000/news/HUMANA-INC-Baby-Boomers-Put-Own-Health-on-Back-Burner-to-Care-for-Parents-Other-Loved-Ones-13488162/.
· National Council on Aging (2021). Suicide and Older Adults: What You Should Know. National Council on Aging.org. Retrieved from https://ncoa.org/article/suicide-and-older-adults-what-you-should-know.
· National Institute on Aging (2023). Alzheimer's Disease & Related Dementias: Living with Dementia. National Institute on Aging. Retrieved from https://www.nia.nih.gov/health/alzheimers/living-with-dementia.