Beryl and Ken

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Beryl and Ken

My partner Ken was diagnosed with dementia in October 2013, but in retrospect the warning signs were apparent many years before. The problem was that the lack of understanding about dementia amongst those around him meant the signs were either ignored or misunderstood.

Since Ken’s symptoms began, this disease has robbed him of so much.

A highlight of our time together was undoubtedly the seven-month round-the-world trip we took together in 2009 – five years before the diagnosis came. However, it was during this trip that Ken’s loss of independence became apparent. He couldn’t always remember where we were staying, so each morning I would give him a card to put in his pocket with the name, address and room number of our accommodation.

Always an astute businessman, by 2011 Ken was beginning to make mistakes, such as paying accounts more than once. His dementia was now causing him to lose his business acumen.

By 2012, Ken was struggling to remember day-to-day things, like the fact the garage door needed to be fixed. At the time, I perceived this as him being stubborn and obstinate. This was due to my lack of insight into his memory problems, and it actually meant we parted company for a time … his illness meant he almost lost me!

Once Ken turned 80, he was required to undergo a medical assessment in order to renew his driving licence. He was unable to recall many items the doctor had asked him to remember and was told he would need to take a driving test. With an unblemished driving record, Ken refused and consequently his licence lapsed. Now the disease had robbed him of his right to drive as well.

Next came the rifts in his family relationships, as Ken’s reluctance to organise a power of attorney, will and enduring guardian left his loved ones with no option but to step in and begin the process of applying to the Guardianship Tribunal.

Through the tribunal’s appointment of a Financial Manager, Ken has lost his ability to have a say in his own financial affairs. His enduring guardians now make decisions relating to his health care, because he can no longer make considered judgements himself. He has therefore lost his voice when it comes to some of the most crucial issues impacting his life.

Today, Ken looks at photos from that wonderful round-the-world trip back in 2009 and all he sees are pictures. He has been robbed of the memories of the places we visited and the experiences we shared.

With a commode positioned at his bedside, even the dignity of using the toilet has been eroded.

I believe an early diagnosis is essential. My advice to others would be to seek advice as soon as any issues become apparent. Lack of insight into dementia can result in the losses associated with the disease becoming far greater. The earlier the diagnosis, the better the chance of living well with dementia.