Carer’s Blog

Stephen was diagnosed with Younger Onset Dementia three years ago at the age of 57 after being hit by a car while cycling.

I had noticed that there was something wrong when he was 55, but put it down to burnout from overworking, not knowing that it could be anything else.  Six months before the cycling accident, a friend insisted that he go for tests as they were convinced that there was something medically wrong with Stephen besides stress. He underwent blood tests, memory tests and brain imaging.  The conclusion after all the tests was that he was completely normal.  The doctor did however discover sleep apnoea which Stephen began treatment for.  After two weeks, many friends commented that he looked a lot less stressed and he had much more clarity in his preaching, so we presumed that the issue was solved.

However, now looking back through his test results, I’ve noticed that his MMSE (mini-mental state examination) was 20/30.  The normal range is 24 or over.  At the time the doctor didn’t pick up on this score, because Stephen was otherwise so normal.  I wonder, if the doctor had ordered proper tests back then whether dementia would have been discovered?  This would certainly have saved us a lot of grief.  In the early stages of dementia, many have benefited from medication and some can even resume their work activities.  But six months later after the accident, medication was ineffective.

From the day of the accident, he never recovered cognitively …

Here is the medical stuff for those interested:

Six months prior to the accident, MRI imaging showed no signs of patho-physiological changes for this age.  After the accident, a spect brain scan (nuclear medicine cerebral perfusion study) revealed advanced atrophy (brain shrinkage) and mild to moderate cerebral ischaemia (restricted blood flow).

After undergoing a brain scan, CT scan and MRI for suspected traumatic brain injury the diagnosis of fronto-temporal dementia was confirmed and because the frontal lobe was affected, his executive functions of planning, rational thinking, and appropriate behaviour for the given environment began diminishing. The signs of damage to the temporal lobe were his short-term memory loss and ability to construct sentences.  The brain imaging revealed severe cerebral atrophy in the frontal lobes consistent with Alzheimer’s Disease.  Additionally, there was evidence of multiple minor cerebrovascular accidents causing vascular damage to the left temporal lobe due to ischaemia, which was a sign of vascular dementia.  The imaging revealed evidence of small transient ischaemic attacks over several years.  Though these minor strokes didn’t cause paralysis, they may be attributed to his gradual loss of speech and vision. There was a marked decline in brain plasticity.  The comprehensive cognitive assessment performed over a week revealed a moderate level of cognitive dysfunction.  Poor spatial perception, may be attributed to damage in the parietal lobes, which led to his driver’s licence being revoked immediately.

So, what do I make of all this … is it possible that the trauma of an accident accelerated the disease?  Studies have shown that there are some definite links between post-traumatic stress and dementia.  According to the latest research in younger onset dementia, the disease cannot just appear but must have been developing in the background for some years.  In Stephen’s case, given the aggressive onset of the disease, medical professionals estimate that the disease was activated from the age of 30.  This predication was for his case, and may not apply to others.

Back to my question … what if Stephen worked so hard his whole life, trying his best to help everyone,  that he neglected to take time for himself due to the high demands of his job?  On the outside, he appeared to be so strong.  What if he allocated all the disappointments, betrayals and hurts of life in a compartment in his mind?  He certainly didn’t have the time to deal with them, because he was too busy providing solutions to everyone else’s problems.  I wonder if he thought that if he allowed himself to feel the pain of the all those problems, then he would be vulnerable and weak, and unable to help others?

In my opinion, as the person who knew Stephen better than than anyone else, I think that compartment in his mind got full.   The accident then tipped him over the edge.  To this day when he retells the story about the accident, he says that the driver was trying to kill him.   However, the facts are that the driver said that she didn’t see Stephen on the bicycle when she turned in front on him, so it was purely an accident.

The medical explanation would be that due to the progression of the disease, Stephen gradually became unable to deal with different situations due to cognition difficulties.  It does however not explain why from the time of the accident, he suddenly could not work or perform in a normal capacity again.

I believe the combination of all the stress, just got too much for him.  Whether my viewpoint is right or wrong, there’s a few things that I’ve learnt through this journey.   My hope is that others are helped by this tips, so as to minimise the impact of life’s trials:

• It is important to deal with issues as they come along and not to leave them piling up in storage in your mind.  As hard as it is, face them.  Talk to the right people about them, until you’re free of the weight of the problems.  Even the problems are still there, you can be released from the burden of them.
• Forgive people – as best as you can.  Forgiveness doesn’t  excuse or condone their behaviour, it sets you free.
• Lower your expectations of people.  If you don’t expect anything or much from them, then it’s a great bonus when they prove you wrong!
• If your job is way too stressful, quit!  You only have one life … it’s not worth the money in exchange for your health.
• If you don’t want to leave your job, take some time off – at least two weeks. Tell the office not to contact you under any circumstances for the whole time.
• If you’ve lost the passion for your job, maybe it’s time for a change.
• Find some good trustworthy friends, and enjoy life and do fun things as much as possible …
• Laugh and play as hard as you can … especially with your family or children.

Individual perception is individual reality.  What one perceives as true is not always someone else’s truth of the same situation.

Speaking from our perception, we had no knowledge of any shortfall or lack in Stephen’s performance.  It was such a shock to both Stephen and myself in the way things were ended in an occupation of over 18 years.

It would have been much more helpful if caring associates had let us know that they saw lack in his performance or a drop in output as it occurred.  To find out later after being blindsided was very hard to deal with.  At the very least, it may have shed light on the issue, so that we sought medical help to find out why.

To both Stephen’s and my knowledge, no one ever sought to help Stephen with the issues they saw.  I think of the verse in the bible:

“Treat others in the same way that you would want them to treat you”   Luke 6:31

That is why I am writing this, I would hate for others to have to deal with the shock and betrayal situation that we faced.  I have learnt the importance of integrous dealing in every situation.  I have lived with the damage of talking behind our backs of the lack and the faults, and feeling that information was gathered as a weapon and not to get help.  The shock of dealing with a terminal illness is exacerbated when work associates, friends or family are insensitive to our perspective.  Crucial conversations need to be handled with integrity and transparency, and these are important skills to develop.   The end does not justify the means, but the means may well destroy any good that could come at the end of a season.