Dementia Advocate Bobby Redman, who is living with frontotemporal dementia, talks about the importance of speaking out and asking for help, and the positive impact this has had on her life.
“In 2015, at the age of 66, I was given a provisional diagnosis of mild cognitive impairment / frontotemporal dementia after experiencing a range of symptoms, including a noticeable change in my ability to perform day-to-day tasks, some communication issues (both in speech and in my ability to follow conversations), and changes in my personality, picked up by close friends.
At this point, in spite of scans identifying some shrinkage of the brain, with gaps appearing in my frontal lobe, the neurologist is still reluctant to confirm the diagnosis, given that “I am functioning too well” (His words not mine!)
I believe that some doctors are reluctant to give the diagnosis of dementia, thinking that they are being kind. With no cure being available, at this stage, they seem to think that an early diagnosis is pointless. This is frustrating for those of us living with dementia that don’t see a diagnosis as an end, but as an opportunity to develop a support plan to include available interventions to assist us in maintaining our levels of functioning.
Before retirement, a year prior to my diagnosis, I practised as a psychologist, working with people with a disability. Much of my work was with people and their carers to develop programs to assist them to function to their highest capacity, on a day-to-day basis. This professional skill is why, I believe, I continue to function “too well”, in my doctor’s opinion.
Trust me, it is not easy to be observing my own decline and capacity, and to continually looking for ways to re-habilitate myself. It would be wonderful to have a professional doing this for me, but the mental focus required for this is part of my personal program, so I don’t complain.
I decided to contact Dementia Australia in 2016, having seen an article on Facebook. In all honesty, I didn’t expect too much – maybe some brochures or other forms of information. I was really surprised and delighted at the result of this call.
The person receiving my call was amazing, speaking to me in a respectful and understanding way, and offering connections to services that I had no idea were in place. I was asked for consent to pass my information along to various services and, within a week, I had received calls from a range of people offering me various forms of support. Suddenly, I was not alone – I had not realised how isolated I had felt up to this point.
In spite of being surrounded by wonderful friends I had not felt that anyone really understood my situation – everyone kept reassuring me that I was doing really well, but no-one was able to recognise how hard I had to work to “do well”, and I had never been a person to ask for help. Now with my connection to Dementia Australia, I did not have to explain anything. Staff just understood and were there for me – some of them even seem to know what I want / need, before I know myself. This is so reassuring. The people involved with Dementia Australia, staff and volunteers, have become my friends – friends who are always there for me.
As I start to slip and am obviously less competent than I had been, some of my regular friends are starting to realise that things are not going as well as they appear. I am lucky as many of them are stepping forward and offering support – coming from a strong volunteering background many of my friends, whom I have volunteered alongside, are good, kind people wanting to help. They don’t always fully understand, and I have to get better at letting people know what sort of things would help me … I am trying!
My message to anyone living with dementia is don’t be afraid; don’t try to hide; ask for help. Contact Dementia Australia. Talk to your friends and families about what you are experiencing and ask for what you need. It will make it easier for you and also help those who want to be there for you.”
Thank you for your comments and encouragement. Sandra, my thoughts are with you as you move through this later stage with your husband. Natalie, your description of your mother's determination made me smile - long may she continue to stand up for her independence. Paul, your kindness is always to be seen. You were a wonderful carer to Olga and your continued fight for better education and support for carers is wonderful. Maria, thanks for your encouragment. Good luck to you.
My husband was diagnosed with frontotemporal lobe dementia at 64 years,12 years ago.He has been in a care facility for 7 plus years and is now nearing the end of the dementia journey.Knowing nothing about dementia at the start we would never have managed to cope day to day in the early stages without Dementia Australia in Brisbane( was Alzheimer's Australia) We are now coming close to the end of the journey but still remember that help and support.
In the years before my Mum was diagnosed, initially with MCI, she was my Dad's carer who sadly passed from Cancer in 2013. It was not long after this that we started to notice "gaps". I believe that they worked well together - he was fit of mind, she was fit of body - and so that is why it went unnoticed until my Dad was gone. She always found it hard to ask for assistance, and even now that she is in Aged Care, is still the stubborn "I can do it myself" person she's always been. Makes me smile and a little bit sad at the same time.
A very helpful message Bobby as it also applies to family carers. I believe male carers in particular are very reluctant to admit that we and our loved ones need help. I often regret not having sought help sooner from Dementia Australia. As you say, their people are "amazing"
A very helpful message Bobby - it also applies to family carers too. I believe male carers are very reluctant to admit that we and in particular our loved ones need help. I often regret not having sought help sooner from Dementia Australia. As you say, their people are "amazing"
good luck Bobby. I wish you all the best in your journey. You are brave and strong and it appears you have a wonderful support network, that will make all the difference in your ability to remain independence for as long as possible. you go girl!!