Alzheimer’s and other dementias are cruel. It has been called the “Long Good-bye”, and Maria Shriver has also coined it the “New Hello” for a reason. Caring for someone with Alzheimer’s or other dementias is difficult for all involved.
It is World Alzheimer’s Month so I thought it appropriate to think about positives — some silver linings — that I have seen in all the years I have worked with residents and families (including my own).
One such situation comes to mind. There was a gentleman, I’ll call him Tim, who was younger (in his late 50’s) than most of the seniors I cared for. He was afflicted with Pick’s disease. Pick’s is a frontal lobe dementia that progressively destroys the nerves in the brain causing behavioral, speech and impaired thinking, making it difficult to provide long term care for someone with the disease.
In Tim’s case, there were additional complications. He had a very large frame, which made it more difficult to provide him care. And the only family members involved in his care were his brother and his wife, both of whom had careers and family responsibilities of their own. It is my understanding that his wife had left him when he was diagnosed. Due to Tim’s younger age, his stature and appearance (the disease caused him to have, what some felt was, a disturbing presence — the disease impacts muscles that allow us to form expressions), he had trouble communicating, was incontinent and would eat whatever he would see, including food off other resident’s plates.
The decision to care for him was taken because he was involved in a university study that was thought would help others contending with the disease, and his family was in desperate straights to find care for him as he had been turned away by all the other senior communities they visited. With the additional support of the company’s regional and community nurses, he was accepted for admission and even allowed to live in the assisted living section until his care needs increased to the point where a change was necessary.
Despite the occasional behavior issues, Tim thrived. He made some friends, engaged in activities and enjoyed a quality of life he may not have had otherwise. The social opportunities Tim engaged in really made the difference to his ability to age more successfully and allowing him to have a higher quality of life.
As time went on and his disease progressed, Tim’s behaviors worsened and he began to upset the other residents. The decision was made, in consultation with his family, to move him to the memory care neighborhood. Interestingly enough, when we moved him to the lower acuity memory care neighborhood, he did not do so well and he had altercations with other residents. When he moved to the higher acuity memory care neighborhood, he did much better and was much more comfortable.
Ultimately, factors related to his disease contributed to his passing. While we were deeply saddened to lose Tim, we all knew it was an eventuality that would come sooner rather than later due to the nature of Pick’s disease.
I was privileged to attend his funeral and hear from others in Tim’s life more about his experiences prior to the disease. Tim was a devoted and life-long educator and heavily involved in student athletics. Even with the disease, Tim was educating. The university study would help countless people. We were learning from him how to improve care for others with the disease, and I feel Tim also contributed positively to the other residents. Many of them were able to help Tim, and in doing so, they improved their own self-esteem and gave additional purpose to their lives.
We were also honored to hear about the positive impact we as caregivers had — not only on Tim, but on the support we gave to his family in helping them with a very difficult situation with someone they loved deeply. It’s what we call the “second paycheck”.
Tim taught us that there can be silver linings in the heartbreak and difficult space of caring for someone with dementia. Here are three tips for how you can discover your own silver lining too.
The flexibility and understanding we had between Tim’s family made providing Tim excellent care that much more fluid. While expecting excellent care and delivering excellent care should be a given, Tim’s family, and we as caregivers, entered into Tim’s care with open eyes and an understanding that there would be ups and downs while some things would work and other efforts would not. Tim’s disease, Pick’s, is a difficult dementia to care for. I feel the understanding and flexibility we had made the job of caring for Tim a more natural and enjoyable process and better for Tim ultimately. From the response of his family and friends, it was easier for them as well.
Take advantage of the opportunities for others to contribute
I believe everyone can contribute. Beside staff, elderly fellow residents, children, family, pets and volunteers can all give and receive in the caregiving process. Socialization and activities are just as important as feeding or changing a soiled garment. They all positively contribute to the well-being of the senior. Everyone who was involved in Tim’s care benefitted. Tim devoted his life to the betterment of others as an educator before his diagnosis and continued his work even while he was afflicted with his terrible disease.
Separate the person from the disease in your interactions
Tim helped us learn more about caring for difficult behaviors. As his disease progressed, we as caregivers had to adapt and be creative. As the changes occurred, there were some trying times. It became more and more important to keep in mind that the disease was progressing, but Tim was still there and needed our help more than ever. His actions were from the disease and not from the Tim before he got sick.
Alzheimer’s and other dementia’s are devastating to those with the diseases and to the people there to care for them. There is much to learn from those that are afflicted. We can still laugh, we can still love and we can still appreciate the time we have left…that’s life.
Oh, my friend, it’s not what they take away from you that counts. It’s what you do with what you have left.
Check on someone you care about today.