At some point in life, we are all the caregiver. As a parent, sibling, or friend, we give to others because we care. It matters and it makes a difference to the one receiving that care. Caring for someone with Alzheimer's is different. The caregiving becomes consuming and can rob us of balance in life. That's when we have to decide how to be the best caregiver.
All of the best intentions and the greatest energies can be spent providing what we think is the best way to care for an Alzheimer's patient. So how do you know if you are doing your best? If you are exhausted and stressed, and compromising your health, is this a sign that you are giving the best that you have to give?
I would say no for several reasons. Two stories come to mind to illustrate my point of view. The first is about a friend named Mary who was suddenly faced with an impossible situation. She has been caring for her mother, who has suffered from Alzheimer's for a three years. The disease started to progress more rapidly, and her mother no longer remembered most of the people in her life and how to perform basic functions like feeding herself and going to the bathroom. Until now, Mary's father had lived at home and could provide assistance despite a serious liver condition. Unfortunately Mary's father became very ill, and had to be hospitalized. He could never return to care for his wife. Mary needed to find outside help to care for her mother.
Mary tried to juggle a full time job and family for several months, with the help of friends because she there was no extended family. She was exhausted and afraid that she could not afford to support her mother financially. Mary lived with this stress, trying to hold the pieces together, compromising her own physical and mental health. Sound familiar? How many of us try to take care of too much ourselves, not realizing that government programs and association really can help.
Eventually, Mary contacted her local Alzheimer's Association and followed my advice, seeking help from the Family Caregiver Alliance, . The website provided detailed information about all of the decisions that had to be made. Reaching out and continuing to talk to experts has made her the best caregiver she could be. Today, she no longer compromises the short-term quality of her health for the long-term quality care that she can provide just by being her best self for her parents.
The second story is about my friend Bill who cared for his partner, struggling to fight for five years until their battle against brain cancer was lost. Although his partner did not suffer from Alzheimer's, Bill did all of the right things. Bill learned all that he could about how to provide the best care, and to seek the best ongoing medical advice. He was the best advocate for his partner because he kept himself healthy and positive. Armed with knowledge and a team of supporters, from the hospital staff nurses to the in-home physiotherapists, Bill optimized the quality of life that they shared.
When Bill's partner passed away recently from his illness, Bill was satisfied that there was nothing more he could have done to make their lives any happier during this period of suffering. Bill adjusted his expectations every day to find happy moments in the simple things, even when the pain seemed unbearable. "We accepted the conditions of the disease and found ways to remind ourselves that we still shared love and joy in life".