Dealing with Dementia: A personal view
President Glyni Cumming has met four of our members who are dealing with Dementia, and she shares one of those stories.
Lesya Roden writes about their own personal experience of dealing with Dementia:
“We were extremely lucky, Mark realised that his memory was declining. Our first step was to get a referral from GP to a geriatrician – but this was a disaster as we encountered an arrogant woman who showed no manners to her staff or patients, empathy was not apparent. After two visits Mark and I agreed to find someone else.
“A driving test with an Occupational therapist and specialist driving instructor was successful, as Mark passed the test.
“A new geriatrician was recommended and made a great difference. Mark was diagnosed with MCI: Mild Cognitive Impairment and he was recently advised that he has Vascular Dementia, possibly caused by previous strokes.
“One of the things that we had to realise was that this referral was going to be for the duration and that dementia is incurable. Each person can have a totally different treatment and progression but it is frightening and overwhelming. It is essential that the patient and family are comfortable with their choice of a medical advisor.
“Some of my friends have been referred to neurologists, psychologists and other advisors, as there is no ‘one fits all’. A geriatrician deals with all conditions affecting ageing.
“My initial reaction was a gut wrenching fear and a need to organise everything and everyone immediately. I researched deep into the nights on how I could solve this problem, so it took a while to admit control was out of my hands.
“The family realised that practicalities were important. Wills, Bank Accounts, Financial investments, Contracts, Agreements, Bills, Passwords, Contacts, and procedures needed to be clarified and simplified. Enduring power of attorney, Advanced Medical Certificate, discussion with, as to how and where to receive treatment, how to tell the grandchildren without making them afraid…..all those things we take for granted.
“Each day something else. Many friends and acquaintances have shared their different experiences and how they managed, laughed, cried, shouted from frustration, anger, resentment and finally how they came to terms with this cruel and unfair end of their lives with the loved ones as they knew them; and vowed to make the most of every minute of every day with who they will become.
“Where to go for help was particularly difficult…there is lots of helpful information out there on the different facets of dementia. Finding help for carers and sufferers in the early stages is confusing as I have found support groups are mainly for advanced stages. The message there is sometimes just too hard to handle.”
Lesya concludes by offering her own researched suggestions below:
- 100+ Published Research Papers – BrainHQ from Posit Science
- Action week Day 5: Remind me – Keep The World Open
- Brisbane Central Administration & Dementia Support Centre | Dementia Australia
- Buderim Dementia Alliance (recognised) | Dementia Australia
- Cultural and religious needs of people with dementia | SCIE
- co.uk Free Downloads – CBT worksheets & leaflets
- Reducing Dementia Risk Factors – Dementia Australia Library – OverDrive
- sunshine coast dementia network – Google Search
- The Dementia Guide | Dementia Australia
- UNDERSTANDING DEMENTIA …MOOC University of Tasmania
- Dementia Australia videos on You Tube – extremely helpful
- Dementia Australia Facebook – real life situations