Bobby is a retired psychologist with a very practical and optimistic view of life with dementia. She lives alone, so adjusting to changes because of her dementia diagnosis has been a huge personal journey.
Her achievements, resilience, and ongoing resolve to be independent are inspirational.
Bobby’s past work involved helping people with special needs, with whom she had a clear and empathetic understanding. However, in the last year of her work, she became aware of her own problems with high functioning skills and struggled to multi-task. She assumed this was due to overworking.
After retirement, she had poor health and shingles. She became confused and had trouble with sequencing. She took a holiday in the UK and longstanding friends pointed out that she was not “the person they knew,” that she communicated differently, and her style had changed.
At the time, Bobby thought she was simply adjusting to retirement. She consulted her GP on return, who ran tests but thought it was probably nothing, but she asked to see a neurologist. The neurologist took a history, did more testing, and concluded there was frontal temporal degeneration, and said “come back in a year”.
Bobby undertook her own research as she did not know much about specific types of dementia. She fervently believes that learning about the condition is key to early intervention, even before the diagnosis is definite.
Bobby changed her daily routine to include more careful monitoring of her diet (and adding some dietary supplements), physical and cognitive exercise and monitoring her sleep patterns. She recognised the importance of social engagement and other meaningful interaction.
Supporting wellbeing
For more information on improving physical health and feelings, read:
Symptoms and strategies
Bobby realised her ability to correctly sequence her daily activities was rapidly diminishing. She now uses technology daily to give step by step instructions. She now considers her mobile phone to be her carer, with its regular reminders and personalised messages.
Bobby sets an alarm for each morning and all appointment reminders. As needed, Bobby added personal care alarms which advise about care sequences (washing, toileting, dressing) and reminders throughout the day about these necessities in case she becomes distracted and forgets. This includes a subtle two-hourly reminder about hydrating and toileting.
Memory and thinking strategies
Many people use strategies to help with their memory and thinking. Here are some strategies that people with dementia use: 3.3 Memory and thinking strategies.
Experience with health professionals
A year after her diagnosis, Bobby saw the specialist again. He told her she was functioning too well but Bobby found this frustrating as she knew things were slipping. She needed advice and strategies.
Her specialist sent her to a neuropsychiatrist who confirmed that whilst she was high functioning in some areas, she was well below in others. He confirmed her tests identified some frontal lobe shrinkage, though not much, as changes were gradual.
Bobby described her original GP as having no understanding about her specific type of dementia. She felt patronised and belittled by her encounters with both him and her neurologist. But she rallied and read up over a three-month period. She changed GPs and now has a pleasant female doctor who understands and respects her views about supplements. Her mobility is very important to her, and her new GP offered to arrange a chronic disease management plan.
Bobby is impressed with the level of knowledge among allied health practitioners. She has a My Aged Care package, which helps provide regular support and physiotherapy. She plans, when the time comes, to get speech therapy, as her language can become broken and swallowing can become a problem.
Getting therapies and services
Read this page which provides more information about being assertive with health professionals about getting services, and getting funding for services using the chronic disease management plan and My Aged Care home care packages.
These pages 3.11 Speech and occupational therapy and 5.3 Plan to use services also has further information about services that people with dementia can use.
Becoming a dementia advocate
A turning point for Bobby was when she contacted Dementia Australia. They recognised her symptoms and gave her a list of locally available support services. Importantly, they referred Bobby to counselling. She felt useful in her counselling sessions and was invited to become a dementia advocate. Bobby adopted this role as her life’s work and feels she has regained her purpose.
Bobby also co-hosts peer support groups with Dementia Alliance International. Read and watch Bobby share why she is glad to have found Dementia Alliance International. As well as helping to educate and improve the lives of others, Bobby finds it therapeutic to share her story, and encourage others not to give up.
Support after diagnosis
Read this page 2.3 Support to adjust to diagnosis which has information on counselling, support groups and advisors to help with coming to terms with diagnosis.
For more information on becoming a dementia advocate and building emotional resilience, read 4.6 Build emotional resilience.
Plans for the future
Bobby feels it’s important to manage on her own and be as self-sufficient as possible. Her daughter also leads a busy life and has health issues of her own.
Bobby has put in place important things like power of attorney, an advance care plan, and her own funeral arrangements. She’s considered where she would like to go into care, when this may be best, as she would like it to be her choice.
Bobby says: “As we get older, we all get something!” She feels there are plenty of opportunities to look outside the box. Bobby is still very active and involved in Rotary. She has a good network of support people and feels lucky with friends.
Planning for the future
Read these pages for more information on organising enduring power of attorney, enduring guardianship, advance care plan and will.
