By Joanne Reid Rodrigues
PREVIOUSLY, I’d written about Alzheimer’s disease and I’d mentioned the importance of having sufficient B vitamins – especially folate, B6 and B12. These nutrients lower homocysteine levels which decrease our risk of getting dementia, stroke, and heart disease. I was touched by the number of emails I received from people in the Jersey community. Thank you to the many people who took the time to contact me with your stories and experiences of caring for a loved one through this devastating disease.
I know how hard it is to be a carer and many times we face challenges to keep it together. Stress levels often soar. And sometimes we even confront our own limitations. I’d like to share a few of my thoughts and hopefully a bit of moral support to help carers. It’s a lonely, long road and carers often feel abandoned and thoroughly overwhelmed and depleted.
When my mother had Alzheimer’s, we had blessings to count as a family. For a start, we were all present here in the Island. How often today I hear of people frequently flying back and forth to the mainland to care for a sick parent. It’s emotionally and physically exhausting. And the expense – a harsh reality – can cause additional stress if finances are tight.
By the time my mum was 58, the disease had taken her ability to speak, eat and walk. I could never fathom why some people would say to me, “She’s not your mum any more.” What a ridiculous thing to say.
“Actually, this wonderful woman is my mum. The roles are reversed, but she certainly is my mum,” I’d respond, with a hint of rebuke. Sometimes people just don’t know what to say. I get that. And most folks’ intentions are good. But just because a person is sick doesn’t mean they aren’t entitled to be treated with dignity and respect. Not being able to speak doesn’t mean they can’t hear.
Here’s the thing about Alzheimer’s: the brain has it. The soul does not. The body can’t function because the brain is the ruler of the body. When neurons can’t communicate or send signals to other cells in the body, a person can’t respond as they once did. Sometimes what they do say is incoherent. But don’t for a second think that a person with Alzheimer’s doesn’t know their loved ones are present. They often can’t tell you they know. But they do know. And the comfort and joy felt by the soul when a loved one is near is immense.
Another trait of Alzheimer’s is occasional angry or violent outbursts, due to confusion and frustration. Most carers learn to dodge a few punches. Understandably, the carer can feel devastated when a loved one attacks them verbally or physically. We need to realise that any aggressive behaviour is a symptom of the disease. It’s not personal.
I know this is easier said than mastered, but if we make a decision to be a witness to the behaviour instead of becoming emotionally involved with the behaviour, stress levels don’t get so out of control. Getting emotionally involved and taking everything personally is exhausting, and carers need to protect themselves from becoming drained.
In the earlier stages of the disease, a person will typically ask the same question repeatedly. When we’ve answered the same question for the sixth time, it’s natural to feel frustrated. But since this phase of the disease can go on for a long time, we’re wise to accept that our loved one isn’t deliberately trying our patience. If someone has dementia, we must accept that we’re not going to have the type of conversation we always used to have with them.
First, accept the situation. We can’t change it. Doing our best to calmly answer the same question repeatedly as though for the first time, helps keep everyone calmer. Again, it’s easier said than mastered. Yet, Alzheimer’s can be a long illness and keeping as much of our peace as we can is key to going the distance.
During the years our family pulled together to care for mum, I came across a teaching of the Buddha that made a huge impact: “Imagine that every person in the world is enlightened but you. They are all your teachers, each doing just the right things to help you learn perfect patience, perfect wisdom, and perfect compassion.”
I reflected deeply on this teaching, and I began to see life from a different angle. All situations give us the opportunity to discover who we are, and to develop inner qualities. Working with people as I do, I know only too well the pressures that many face when caring for a parent or family member, and the stress of juggling caring for a parent, while raising children and holding down a job to contribute necessary income to the family.
From the human perspective, it can be awful. From the spiritual perspective, when a family member is ill and in need of care, it’s often for the education and benefit of the caregivers. We learn from the experience and gain new perspectives and some wisdom because of it. And in giving care and support, we make a positive karmic investment.
Instead of seeing ourselves as the only givers, if we can see our ill relative or friend also as the giver of an opportunity to be of service and to develop our understanding and compassion, we balance our outlook. In turn, this softens our stress response.
In our community, we have so many kind-hearted people willing to help. Ask for help. And when it’s available, take it. Pace yourself and rest when you can. And when stress overwhelms, go outside. Sit in a garden. Go for a walk. Sit by the beach. Breathe.
I’ve come to appreciate the quote by the Persian poet, Rumi: “Whenever sorrow comes, be kind to it. For God has placed a pearl in sorrow’s hand.” Each tribulation conceals an opportunity for our education.
As challenging as it really is, all sorrows eventually pass.
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Joanne Reid Rodrigues is the founder of Slimming Together, an author, trainer and therapist in nutrition, CBT, PTSD, and stress management. Joanne is available for workplace stress management and private coaching at Health Point Clinic, Suite 2.4B, The Lido Medical Centre.Joanne can be contacted via her website at JoanneRR.com.
