STORY - DEMENTIA – A CARER'S VIEWPOINT

The December edition of Aurora included an article titled “Living with Dementia” by Robert Eddie and Marilyn Hall of Mercy Community Services. Darrell Bailey, who cares for his wife who lives with dementia, offers this perspective…

The path my wife and I walk is not one that we expected to travel. We have to accept what comes each day. We cannot change our circumstances, so we adapt and make it as easy as we can.

In 2001 my wife was diagnosed with Early Memory Loss, Alzheimer's Disease or Dementia. Symptoms had begun about 1994, and at first our (then) GP would not agree there was anything amiss with my wife's memory and behaviour.

In retrospect, there were ‘triggers' which indicated that something was wrong. Firstly, little lapses in memory and behaviour which have become Big Things over time. Nowadays, my wife has lost the skills and talents she possessed for many years, and today she can do almost nothing beyond eating and sleeping. All household tasks are mine.

Dementia is an illness and is not the fault of the person, although under stress, it is fairly hard to accept this. Each day one must expect the unexpected, and planning ahead is vital.

A carer is always thinking for two people.

We've rearranged our methods of paying bills and household expenses: electricity, gas, council and water rates.

We've dealt with wills, powers of attorney, guardianship, funerals, signatories to financial accounts and advance care directives. These tell our children what treatment we want if and when we are taken to hospital, if we are unable to speak for ourselves or are near death. I have arranged short term ‘in house' respite if I should suffer a sudden stroke, heart attack or loss of speech, or other emergencies.

We've had to deal with ‘busybodies' regarding my wife's “odd behaviour and comments”. We've had to deal with hurt and embarrassment at supermarket checkouts when my wife first began to lose her ability to recognise and handle cash. We've been shunned by some relatives and friends, and have withdrawn from some of the groups to which we have belonged for years. We are no longer useful.

Some family members do not want to know how we manage day by day. Only one communicates with us. We have moved on from the bitterness and anger we have felt, and now we feel only sadness for those who cannot understand. They have not walked in our shoes. Sometimes we get upset when people express pity or sympathy. We feel it is rather hollow and consider the expressions to be patronising.

In the years following my wife's diagnosis there have been just three offers to stay with my wife while I have a break of a few hours.

We rarely travel. My wife is quickly confused and disoriented once we leave familiar places. I now do all the driving. My wife surrendered her licence when her memory loss had begun to impair her driving ability.

We've had trouble with side effects from medications such as diarrhoea, fatigue, leg cramps, hallucinations, weakness, to name a few.

My wife cannot handle a cordless telephone, nor can she read a telephone directory. So, if I have an accident at home and our neighbours are unavailable, she would be unable to call for help.

We've lost part of our lives together – we cannot work as a ‘team', as we did when raising our family. We've lost friends. We've lost some enjoyable and meaningful roles in our former social circles. We do not go out much. We do not ask people to our home for lunch or dinner because of my wife's anxiety levels.

I have lost my soul mate and confidante. We cannot talk over those issues which daily enter our lives because loss of brain cells means her rational thinking and expression are impaired.

Her starter motor has broken down and cannot be fixed.

I have learned to be more patient, tolerant, forgiving and aware. We have occasional ‘blow-ups' and express our frustrations. But it is not the person, it is the disability which is the cause.

It is good to find someone who listens and understands – perhaps one who has trodden the same path.

Take a break. Make that possible. It is not selfish, but pragmatic and practical. Occasionally, a carer needs space and time to ‘recharge the batteries'. It is good, too, for the person with dementia to be away from the carer sometimes.

Carers live daily with the prospect that the cared-for will ultimately move from home into residential care. Usually the body lasts longer than the brain! As my wife's brain cells diminish, she will enter respite care more often, then low care and finally high care.

I am reluctantly and slowly preparing for these eventualities, and I am aware I should follow my head rather than my heart when hard decisions have to be made.

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