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Dementia Advocate Cathy recently presented at the National Dementia Forum sharing her experience of caring for her husband John who lives with Alzheimer’s disease.
We have included an extract from Cathy’s presentation below.
Note: If you care for a loved one with dementia and would like some support please contact our National Dementia Helpline on 1800 100 500.
I am a long-time dementia carer – first as a carer for my parents-in-law who both had dementia and subsequently for my beautiful and amazing husband, John, who was diagnosed with Alzheimer’s Disease almost a decade ago.
Friends provide a lifeline
Caring can be the loneliest role in the world and friends maintaining contact can often be the make-or-break between a carer being able to manage at home or feeling that residential care is the only option.
Following John’s diagnosis I made up some ‘Friend Packs’ containing the excellent Dementia Guide from Dementia Australia.
The pack also had a calendar with ‘Hope you can call’ written on the front cover, a bottle of wine (since much of our life’s socialising has been over a glass of red) and a large block of chocolate.
I also included a card to say how much I appreciated their friendship and how grateful I was that they were there to support John and I through this next stage of life.
Whether there is an expectation of more wine and chocolate I am not sure, but we are blessed to have those ongoing friendships as the caring role is a 24/7 one – yes, with peaks and troughs, but always there.
Those same friends are the ones who make sure that I, as a carer, look after myself, and have recharge time.
Caring for oneself is sometimes overlooked by carers but essential to continuing to be effective in the role.
We all have a part to play
While generally the day-to-day caring falls to a small number of people, whether in a professional role or through family, the whole of society needs to be part of that caring.
I was reminded of this recently, when John and I attended the 80th birthday of a neighbour where we spoke to people of all ages on a range of topics.
It was great to see John’s face animated and to watch his body language reflect his interaction in the conversations, despite his recent difficulty expressing himself.
When we arrived home I asked him if he had enjoyed himself and was totally taken aback when he said ‘no’.
I asked him why as I was surprised at his answer.
His eyes filled with tears as he answered: ‘They thought I was stupid’.
My heart broke for him.
Despite the interaction with the guests, John had sensed condescension and a lack of respect for, and caring about, him as a person.
Despite my protectiveness of him in this and all social situations, as his carer I had not been able to prevent the situation.
It was a reminder that unless the whole of society has a knowledge and understanding of dementia, this situation will be repeated at social activities across the world.
Challenges of being a carer
Dementia often seems to co-exist with other health issues and itself brings further health issues.
The many visits to doctors, hospital stays, tests and organising medications is, in itself, a full-time career!
John is fantastic at being prompted into taking his medication however for many carers that can be the most challenging part of the day.
Explanations for why there are so many tablets or simply a closed mouth resistance to the taking of tablets is a constant source of anxiety.
This is often coupled with the inability of a partner to verbalise pain or other symptoms but in showing distress, will often leave a carer feeling helpless and distressed.
The financial cost of dementia
A diagnosis of dementia also has financial implications.
It could be a forced early retirement of one or both partners; it could be extra health care costs; it could be relocation to be close to family; or it could be carers ill-skilled to take the financial responsibilities foisted on them and thus needing to pay others to do that.
For many baby boomers, who make up a large proportion of those currently living with dementia, the husband was the bread-winner who looked after all the finances.
As a result, many current carers do not know how to access financial support packages or even what is available, and worry themselves sick as to how they will manage.
The good news
However, let me give you a good news story.
Recently John decided to collapse fairly spectacularly on the waterfront.
It was very stressful and not the day I was expecting.
Many visits by nurses and doctors in emergency passed the hours and I felt pretty exhausted by the time John reached the ward.
After he was settled in, one of the senior nurses came over to me and said: ‘You’ve being doing a great job – look how calm John is’.
As a carer, the sense of responsibility is sometimes almost overwhelming.
That simple acknowledgement was so uplifting and that acknowledgement works just as well on anyone in a caring role, whether a professional or family carer.
I’ve gained so much
So how can the caring role be enriched?
Well, I am absolutely and definitely NOT a Mother Teresa but I do value her wisdom when she says: ‘It is not how much we do but how much love we put into what we do’.
Through loving those for whom we care, we gain so much.
I have so much admiration and pride in the way John has dealt with his disease and through it he has taught me a lot.
Patience has not been my greatest strength; John has taught me patience.
Where I have demanded busy, active days; John has taught me the value of stopping and enjoying the moments.
And where I have expressed frustration at a head cold, sore arm or other minor physical ailment; John has taught me that good health is being alive and able to appreciate each moment.
It will always throw up its challenges but finding the positives of the role and reminding ourselves why we choose to be a carer for that person makes it one of the most satisfying and beautifully rewarding roles there is.