For as far back as I can remember I have wanted to be a nurse. I thought about medicine for about a second, then back to nursing. I am a caregiver by nature. I want to help people. I like to be needed. That is why I went into nursing. The opportunity to help someone at their most vulnerable is a privilege. The satisfaction of knowing that I have made someone’s life more bearable, or made it possible for them to have a “good” death, has been the most rewarding part of my work life.
The phrase “Good Death” is an oxymoron to some, but it is very real to me. I spent four years on a medical unit; nineteen and a half years in oncology, and for the past sixteen years I have worked in long term care. I have cared for countless people at the end of their life. I wiped their brow, provided ice chips for their dry mouth, and gave them narcotics for their shortness of breath and pain. I held their hand, fluffed their pillow, listened to their fears, had a shoulder for them to cry on, and a second shoulder for their loved ones. I helped make their last days as comfortable as humanly possible.
The human factor, as nurses we must never lose sight of that. These are human beings with hopes, dreams and boundless emotions that we are caring for. We must always keep their whole being in mind while caring for them. When their mind is broken, as is the case with the person living with a dementia, we must focus on their feelings more than ever before. Dr. David Sheard, Founder of Dementia Care Matters, states that as the person progresses in their dementia they become more “feeling beings” than “thinking beings” and that “feelings matter most in dementia care”.
Dementia care is my passion. I always said I would end my career in long term care, but I didn’t know then just how passionate I would be about caring for people who are living with a dementia. To meet their needs you must look past the expressive “behaviours” to the feelings behind them. You need to look past what they are saying, and try instead to discover the feeling behind the words. I love the challenge, and the satisfaction, of discovering who they were in the past so I can meet their needs of today. What brought them joy, and what caused them distress? What gave them a sense of purpose in their life? Knowing this can help you meet the person’s needs in a holistic way, providing them a life with purpose, dignity, and joy.
The person who is agitated and repeatedly stating they want to go home or calling out for their mother…what are the feelings behind those words? What does home or mother mean to you? To me they conger up images and feelings of warmth, love, comfort, safety. Is that what the “agitated”, “wandering” resident is searching for? It is within our power to provide them with those feelings. It can begin with something as simple as saying “Tell me about your home” or “You must love your mother very much, tell me about her”. They may lose their ability to remember, but a person living with dementia never loses their ability to feel.
One afternoon a woman living in our care home was highly agitated and crying out for help. I walked over to her, crouched down and touched her shoulder, and asked her to tell me what was wrong. She was worried because her husband had not arrived yet. Her husband had died many years previously, but I was not about to remind her of that. That would have been cruel, causing her to grieve as if hearing this for the first time. Instead, I suggested perhaps he was held up in traffic and proceeded to ask her questions about him. This served several purposes. It validated her concern, helped her remember happy times, and gave me enough information about him to come up with a reasonable explanation for him not being there. I suggested I call him to see what the delay was. I picked up the phone in an area where she could observe me, then reported back that he’d told me that he had lost track of time while tinkering in the garage and she was not to worry. This made sense to her and she settled. A cup of coffee, some cookies, and a few books to look at helped as well. I was a successful detective that day. I found the feelings behind her cries for help, which allowed me to meet her needs. I had a great day!
There is a famous quote attributed to Maya Angelou … “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” It only takes a moment to make a huge difference in someone’s life. As a nurse I have an opportunity to make those moments when someone needs it most. What is more rewarding than that?
NOTE: Dementia Care Matters ceased operations in December 2019
Post updated June 15, 2021