No matter how prepared you think you are, the need for caregiving usually comes unexpectedly, and leaves you in a maze of care options and decisions on topics that are unfamiliar. Additionally, as I learned, the circumstances that caregivers face can change rapidly. And, all the challenges are intensified when caring for a loved one living with Alzheimer’s. Wherever you are in the caregiving journey, it’s critical to have a care plan based on your clear philosophy and your goals. With those factors defined, you can develop a strategy to attain the goals so that everyone involved in the caregiving journey can thrive, instead of merely surviving.
Here’s the important thing to remember about ending the caregiving journey with no regrets. Every situation is different. Each family and each member of a care team can only do what they are able, based on a realistic consideration of their constraints such as finances, time, and geography. Having a well-defined philosophy, goal and strategy will allow everyone involved with the care to have a clear understanding of the patient’s wishes, an understanding of how they can contribute, and a plan to deliver on the responsibilities they have assumed.
It is important to look at your situation closely and identify what you believe to be true. Without a philosophy based on your beliefs and/or the wishes of your loved one, there can be no direction, no strategy and therefore, no achievement of a goal. It is particularly important to note that no one can be a caregiver 24/7 without relief or taking time for self-care. Therefore, a successful strategy must incorporate self-care and respite care.
My family’s philosophy was based on our most basic beliefs about the treatment of others: to always treat them with dignity, respect and kindness; to promote their independence; and to keep them safe. We also believe in person-centered care and support. We had additional beliefs specific to my dad living with Alzheimer’s: we would not buy into the unfounded and detrimental stigma around Alzheimer’s; we would be his guardians: of his identity, his voice, his reality; he was different, not less; we would always know who he was, even if he did not know us; and most importantly, that he was still capable of living a life meaningful to him and others around him.
My family also believed that not dying is not the same a living; there must be meaning for there to be life. It was our objective to maintain my dad’s quality of life as opposed to its longevity. That became our goal: quality of life vs. longevity.
The battle we faced was to protect the very definition of my dad’s quality of life. We had to:
1) Define what quality of life meant for Dad: the three top-tier elements were safety, wellness and comfort in his care
2) Maintain his dignity, independence, self-respect and sense of self-worth
3) Empower him by offering him respect, a sense of purpose and love
A strategy is a plan for achieving a specific goal. It is the nuts and bolts of care. Our strategy was to deliver compassionate and dignified care that was based on our philosophy and care needs, and aimed at our goal. Our approach and decisions were always in strict alignment with our philosophy and goal.
My execution of the strategy consisted of the following:
1) Start each visit with my personal ritual, in which I entered the living space and then immediately connected with my dad. It set the tone for the day and, for me, nothing existed outside of that space while I was in it.
2) Adhere to our daily objective: that dad was safe, medications were to be given correctly and on time, he was always to be kept clean, fed and happy.
3) Understand that every day is different. With the exception of dad’s medication schedule, care tasks would be done with consistency but flexibility.
4) Be a Patient Advocate: act as a guardian, a protector of him and a voice when he cannot advocate for himself.
5) Continue connection and interaction, including non-verbal, because it makes the most powerful positive difference for dad.
Additionally, there were techniques we used to bolster our strategy:
1) Be patient, allow excess time for each task.
2) Be prepared, especially for outings.
3) Play to strengths, use the memories that they have, including muscle memory built from years of repetitive actions. My dad didn’t like to do physical therapy exercises. But, he played competitive college basketball, so we utilized that to encourage movement. If we tossed a rubber ball to him, muscle memory allowed him to immediately rotate the ball behind him and under his leg.
4) Continue what had been part of life, such as watching favorite television shows, listening to music from their era, dancing or playing an instrument or reading/looking at the newspaper.
5) Reinforce memories: create a digital photo slideshow or poster boards, look at books they have read, particularly those with photos, etc.
For me, having no regrets means that I delivered the very best dignified and compassionate care possible for my dad and the end of life he desired. In short, the key to having no regrets is to do the very best that you can in the context of your individual circumstances.