I want to home in on chronic health conditions that cause major stress for the sufferer, as well as those close to them – I have chosen dementia in particular, but the comments apply to many chronic illness conditions. I do not want to dwell on potential causes. Once someone is ill, the horse has bolted, and there is little to be gained by trying to identify who, if anyone, left the gate open. Rather I want to focus on our response to this new stressor in our lives, and strategies to minimise new stress for everyone surrounding the illness.
This advice is summarised from books by Gabor Mate’, Eckhart Tolle, and Byron Katie.
Dementia
Dementia is a disease close to home for me. My father is currently suffering from it, and my mother, who has late-stage Parkinson’s, has also developed a form of it as a sequela of that disease. I highly recommend the film ‘The Father’ with Anthony Hopkins playing an elderly man suffering from dementia. The film is unique in that it portrays vividly the man’s increasing confusion, from his point of view, about the people and events in his life, and his fears as he gradually loses control.
As people succumb further to the disease their ability to communicate with the outside world also diminishes. They appear to shut down, occasionally recalling long ago incidents like yesterday, but short-term memory, and recognition of loved one’s is gradually lost. Some refer to it as “the lights are on, but there’s nobody home”. I dislike that view as I believe that risks dehumanising them. I prefer to think of it as veil that has come down through which they can no longer communicate with us, but the essential person is still very much alive inside – a kind of “deaf, dumb and blindness” if you will.
We recognise that they are stressed as they lose control, but we can’t know to what extent they continue to be stressed after they completely withdraw? The best we can do is to keep them comfortable, safe and assured to minimise any chance of new stress - remember they are now living in a place where everyone is a stranger!
Stress on loved ones
I remember when my uncle was dying from cancer. He and his wife worked hard all their lives but had a happy retirement planned, they were going to buy a lifestyle block, have their animals and gardens, idyllic. That never happened. I remember my aunt saying “Rhys, I feel so cheated!”
When someone we love gets sick, perhaps terminally ill, all our plans go out the window. We have to get over the loss of a future we had imagined, travel, a lifestyle, a happy story shot down in flames. It’s a grief for ourselves as well as for the sick person. Suddenly there’s a new story on our horizon, one we hadn’t planned for. That can be scary. We need to shake that off though. The future maybe different now. Our loved one needs us to step up, they don’t need any more guilt from us.
How should we handle the stress of being sick? 11 ideas on how to respond:
1. Turn down the heat and KISS: Last month I talked about the stress relief tip, the 30 second kiss. That can help reduce stress. But ‘Keep It Simple Stupid’ is great advice too. It’s another way of Being Present by simplifying. The illness is like a big project, but we don’t know the timeline or all the phases. Yet we have to be “agile” and get on with things today anyway. So just do that. Do only what needs to be done today, today, stay present with that. And leave tomorrow until tomorrow. If we start worrying about tomorrow now and start to ponder ‘What if’s’ we will burn up a whole lot of emotional energy for no purpose. That’s where stress comes in again. Don’t do that!
2. Emotions: It’s ok to be emotional. If we are feeling an emotion right now, then feel it fully, accept that’s what is happening for us right now. This has nothing to do with logic, and everything to do with being human.
Don’t try to suppress emotions, we’ll create more stress by doing that. It will make us sick if we’re the support person, or more sick if we’re the one with the illness. Let the emotion pass through us. Don’t label it, don’t make a story about it, or else we’ll just perpetuate it.
We can be curious about the physical sensation(s) the emotion causes in our body, the way our stomach feels, our heart - do we feel warm, hot, cold, sweaty? Watch these physical symptoms, they will pass soon enough. No stories!
3. Guilt or shame: Maybe there was some action we took that led to us getting sick? We overworked. We were a smoker. We didn’t address emotional stressors early enough. We ignored the warning signs. We didn’t eat properly, or exercise. So what? We were doing the best we could at the time. Cut ourselves some slack. If there’s lessons to be learned, fine, make a note to do better next time. But revisiting our past actions over and over is going to burn up a whole lot more emotional energy, cause ourselves more stress and impede our road to recovery.
And don’t feel guilty that our illness is spoiling our joint plans for the future. At some point we are all going to get sick. Plans are only guidelines for some future entertainment. Life actually takes place in this moment.
4. Holding a grudge: Maybe we’re holding a grudge against someone or a group. It could be anything, for example, someone’s prejudice about the way we look or behave. We may be completely justified. But that anger will eat us up and will work against our return to better health. Forgiving someone, is not letting them off the hook. It’s letting us off the hook. It’s very healing for everyone involved to finally settle old scores amicably.
5. Get informed: Get informed about our, or our loved one’s, condition will help to demystify it and help us make better choices. It definitely helps to remove some of the uncertainty too.
6. Accept help, now! Don’t delay seeking help. Men are the worst culprits at this. We don’t win brownie points for toughing it out on our own, in fact we will almost certainly be making things worse. We most definitely lose major points for keeping our problems secret from a loved one, it’s a trust issue.
When we reach out to others our brain produces oxytocin, the “cuddle hormone”, which is restorative for health. Science shows, for example, that damaged heart cells will repair themselves in the presence of oxytocin. If we don’t ask for help from someone close, or go help someone else, our chances of recovery plummet..
Bodywork can be a great supportive therapy if you are physically able to make it to a therapist.
7. An Unbelievable Opportunity! Those that view the stress of serious illness positively as an unbelievable opportunity are way, way more likely to survive it, compared to those that see it as the beginning of the end.
If we can 𝙧𝙚𝙛𝙧𝙖𝙢𝙚 𝙩𝙝𝙞𝙨 𝙘𝙝𝙖𝙡𝙡𝙚𝙣𝙜𝙚 𝙞𝙣 𝙖 𝙥𝙤𝙨𝙞𝙩𝙞𝙫𝙚 𝙡𝙞𝙜𝙝𝙩 we are much more likely to come out the other side, and in a better position than ever before.
This requires work on our behalf. Look for all the good possible outcomes that might result. See the symptoms of stress – increased heart-rate, increased sensitivity, pain – as functions the body is putting in place to help us get through the challenge. Our body wants us to succeed!
Make sure that we remain fully informed on our condition, analyse possible causes, get counselling, receive bodywork, and listen to our body’s cues.
Reframing our situation in a positive light is NOT the same as “blind optimism” which can disguise causes and symptoms that we need to be paying attention to, in order to recover and grow.
Many survivors tell us that the disease was the best thing that ever happened to them. They reset their lives and became much healthier and more fulfilled than they ever were beforehand.
“Humans don’t awaken in their comfort zone, they awaken when they are out of their comfort zone.
This is a time of great opportunity.”
Eckhart Tolle.
8. Amp up the love and kindness: When nothing else seems to be working in our life, love and kindness should always be our default mode. Ultimately it will smooth the way for ourselves and those around us. And its way less stressful than any alternative.
9. Arguing against what is: When we argue against what has happened, we start fighting ourselves. There’s only one loser from that game, and no winners. What is right now can’t be changed. It’s already happened. We have dementia, cancer, MS etc. So accept what is, then deal with it.
Some people talk about fighting the disease. But that’s misguided. It’s our own bodies that have gone off the rails. We can’t fight our own bodies, that only winds up the stress even more, it’s counter-productive to health.
That doesn’t mean giving in to the disease. Follow these guidelines to be proactive. Remember that our body will respond much better if we take a benevolent approach rather than an antagonistic one.
10. Making up stories, good vs bad: We have a tendency to label and judge situations, and people. This has been conditioned in us since infancy. We have cancer, so automatically we say “that’s bad”. What has actually happened is that something has gone out of balance in our bodies. Our body has tried to compensate for the imbalance and probably sent us warning signals – eg we were tired all the time; our joints ached; we were irritable – signals that the environment is not right for this body organism. Then the body lost the balancing act and we got sicker. Is that “bad”?
Perhaps, perhaps not. What if this disease inspires us to make a swathe of lifestyle changes that not only improve our health, but our general happiness and wellbeing also? Wouldn’t that be a great outcome?
On the other hand we could just give up – “life is not fair”; “nothing good ever happens for me”; “I got faulty genes from my parents, its all their fault”; “I’m doomed!”.
We are always taking a set of circumstances, making judgements, projecting stories, following the ‘what if’s’, and causing ourselves a whole heap of mental grief.
It’s ok to feel emotions fully when they happen (see 2. above). What is not ok is allowing our thoughts to run rampant making up stories when emotions happen. What is even worse is allowing these stories to generate knee-jerk reactions that we might later regret. Like lashing out at those closest to us.
When we stop the story, the thought stream, we simplify our life enormously and allow our body the best chance to heal.
11. Death:
“None of us is getting out of here alive,” as Anthony Hopkins said, “so please stop treating yourself as an afterthought. Eat the delicious food. Walk in the sunshine. Jump in the ocean. Say the truth that you’re carrying in your heart like a hidden treasure. Be silly. Be kind. Be weird. There’s no time for anything else.”
Check out authors like Elizabeth Kubler-Ross, Dr Bruce Greyson and Peter Levine for their research on death and after-death experiences.
Increasingly many believe that both birth and death are not start and end points, but moments of transition. This view can help us to remove the fear.
Use our time to show compassion towards others, heal any rifts, forgive, and let go of grudge’s. It can be a great time of catharsis and healing for ourselves and those around us.
So ‘be silly, be kind, be weird’ and no stories!
Postscript
I asked someone who has been through the ordeal of breast cancer to review the above. She offered the following addition:
“I would add one more issue, which I have experienced personally going through my cancer experience. I would add the issue of being under extreme stress, particularly as a result of the idea of facing death: you can’t think very clearly anymore, and you can’t relax. Your whole body is tense. You can’t sleep well. I believe Zero Balancing (ZB) is extremely helpful under those circumstances: I was only able to relax a bit after a deep tissue massage for instance but I think ZB has more to offer as it takes some of the stress causes away. Massage therapy was a lifeline for me: ZB could very well be a lifeline for others.”