The 2017 Ubud Writers and Readers Festival just finished here in Bali. It’s an exciting annual event that brings in authors from around the world, inspiring audiences with new ideas, current events and touching stories.
Over the 14 years it’s existed, I’ve gone from a volunteer for several years, to a paying participant, to this year – being one of the invited writers speaking on panels and in interviews. I adored the whole experience, especially the opportunity to touch the hearts of people with Alzheimer’s in their lives.
After a reading from my book, Piece by Piece: Love in the Land of Alzheimer’s, a woman came up to me, touched my arm and said, “Finally someone who understands.” Suddenly, we both had tears in our eyes.
According to the Alzheimer’s Association, there are 47 million people worldwide with Alzheimer’s – that’s an increase of three million since I gave my TEDx talk in May 2016.
It’s estimated that by 2030 there will be 76 million people suffering from this terrible disease. There is nearly three times that number of unpaid caregivers and over 60% of them are women. This is a double whammy. Not only are women more likely than men to have the disease, we do most of the caregiving.
As Alzheimer’s affects more and more people, the number of family caregivers needing support grows at an alarming rate. The people who came up to me after the panel called ‘True Stories’ needed that support. They needed to talk, to tell their experiences, to be heard and understood.
Often friends and family turn away because they can’t face their own pain, knowing their loved one or friend has a terminal disease that will only get worse. They don’t know how to join the Alz person in their world and instead try to pull them back into our reality.
Many caregivers feel abandoned to cope with and handle a deeply challenging situation. These challenges are both physical and emotional.
If you know a caregiver, help in any way you can. Sometimes just listening can be enough to give some relief. And if you are listening, try to hear the person and let them express their feelings no matter how uncomfortable they may be for you. Let them talk and acknowledge that you hear them.
To keep the conversation open and intimate, it’s best to not interject with your own experiences or to discount their feelings telling them that things will get better or to “look on the bright side.”
Other important ways to help are offering to look after the Alz person for a couple of hours so the caregiver can get away to take a walk, have a massage, go out for coffee with a friend or just relish some alone time.
The caregiver desperately needs to have respite, no matter how stoic and capable they project themselves.
One of the frustrations for caregivers is friends and family not believing how difficult caregiving is because the Alz person often comes across very well socially. To the outside person the situation often appears better than what the caregiver says it is.
However, the visitor doesn’t have to hear the same question asked repeatedly day after day, or deal with obsessive behavior, or experience the loneliness that comes when your spouse or parent can no longer communicate in a give-and-take manner.
I had been a caregiver for 14 years, and I was blessed to have supportive and caring friends. Few actually offered to be with Bob and give me a respite. Living in Bali allowed me to hire people to do that job, so I could have some me-time, even if it was just to think uninterrupted.
Laughter was an important element in keeping my sanity. My friends knew how to be silly with me without discounting my reality. I still feel such deep gratitude to all who were a support during those difficult years. I couldn’t have cared for my husband and given him a quality life without them.
If you are a caregiver, what do you need from family and friends? If you know a caregiver do you have any suggestions on how others can be of help? Please share your comments below.