"Trying to make a difference to the world to ensure that the stigma of dementia is lifted, and they can remain part of their community for longer, feeling accepted as they were before the onset of their condition..."
When Lyn received the devastating news that the problems, she had been encountering were in fact the early symptoms of dementia, she was determined not to allow this insidious disease to rule her.
She therefore entered into the biggest battle of her life, to ensure that she could maintain her wits and people's respect for as long as possible. Five years down the track, this is her story so far... Lyn was a resident of Bribie Island in Queensland. Before retiring she had raised a family while spending a lifetime of cooking for other people in a variety of situations. Her son and his family lived close by and Lyn enjoyed caring for her little granddaughter during the daytime, taking her shopping and for walks in the park. Then gradually things started to change. She was forgetting to do little things, and her son said she was repeating herself and should see her GP.
Lyn felt her GP was not immediately helpful, telling her that as she was an intelligent woman, she was not going to give Lyn any of the usual tests but would organise for her to have a brain scan as soon as possible. After the CT scan, Lyn received a call saying they had her results and asking her to visit the doctor within the next half hour. It was such a shock. She was told that she had a type of dementia and that she would be sent to a memory clinic. At the end of the consultation, she was told that she needed to register with the police "in case she got lost", get all her end-of-life matters in order and do a healthcare plan. It was devastating to be told all of this at once. Lyn was relieved to have become aware of a support group having read about it in the local paper before her diagnosis. The support group was backed by Dementia Australia, which Lyn also contacted. Dementia Australia was very helpful, giving her some counselling over the phone almost immediately, and sending her a lot of information.
Lyn was amazed and shocked to receive a letter within two weeks scheduling a visit to the newly established memory clinic at Caboolture Hospital. The consultant at the clinic was another 'straight talking' person, telling Lyn that she had three months to do a driving test, otherwise the Department of Transport would take her licence away from her. It was devastating to be told so bluntly, without any compassion, and Lyn felt she was unable to share her fears with her daughter in Victoria who was newly pregnant. She couldn't share with her son because he couldn't accept the diagnosis, but at the same time he told her that he couldn't trust her to look after his daughter anymore. It was a heartbreaking time with no one to share Lyn's troubles. Finally, as a result of her visit to the memory clinic, Lyn received an appointment with a neuropsychologist and obtained some support and direction that was a great help. The regular appointments were two to three hours' long and quite exhausting, making it necessary for Lyn to request a friend to pick her up because she couldn't risk driving home by herself.
The compulsory driving test, which cost Lyn $500, was another hurdle at a time in her life when everything was becoming overwhelming. She had to wait until late February before feeling it safe to tell her pregnant daughter what was happening to her. At about this time, Dementia Australia ran a course for people with a new dementia diagnosis to attend with their families, so her daughter flew up to Queensland to be with her. Her son and daughter-in-law did not take part in the course, although they attended another one that resulted in them refusing to accept what was required to help his mother, or even discuss the content with her. Making contact with “My Aged Care”, was another hurdle to get over with the representative being extremely abrupt and bombastic, attending the meeting unprepared with no material to hand out (because she had run out). Lyn was thankful that she had her doctor's reports but was told not to expect anything and was asked "do you really have dementia?". Lyn's reports showed that she had frontotemporal dementia, which the reports, had they been read, would have shown. Lyn was very grateful to the Bribie Island Support Group, which had organised with the local police for 'Get me home safely' bracelets. Having such a bracelet gave Lyn a much greater feeling of comfort and confidence.
Living by herself with no one to care for her and needing the use of crutches as a result of lifelong orthopaedic problems, Lyn applied for a package from My Aged Care in the hope that some assistance would be available. Eventually, after a struggle with the same MAC representative, she did receive a package, ironically with a provider from Victoria. Without any support from her family in Queensland, and no longer being trusted to look after her granddaughter, Lyn became more uncertain of herself and made the decision to move closer to her daughter in Victoria, all the while maintaining regular counselling sessions with Dementia Australia. She had come to realise that she was not coping and it was not safe for her to remain living alone. Since she did not want to become a burden to her daughter and her family, she realised that it would be more appropriate for her to go into care of her own choosing, rather than wait until her situation demanded other intervention. She therefore arranged to have respite in several aged-care facilities within easy access of where her daughter lived.
Discussions with the then CEO of RM Begg Aged Care in Kyneton confirmed that the type of dementia with which Lyn had been diagnosed often escalated quite rapidly, and it became obvious that Lyn should enter care sooner rather than later. This resulted in her taking up residence in Penhall, an aged-care unit within the hospital in Castlemaine, two and a half years ago. Before making the move, Lyn had been sufficiently mobile and determined to remain independent for as long as possible, travelling by herself between the two states. While she found the airlines understanding of her physical abilities, she nevertheless found it hard to make airport authorities understand that having dementia meant that she encountered difficulties doing some things required by security, such as removing and replacing her shoes or walking through the security check without her crutches. She often found the staff intolerant of her slowness, despite explaining that she had dementia, and there was never anywhere for her to sit. One of the symptoms Lyn has to cope with is her inability to speak at what she would previously have called a normal rate. She often struggles for words, which slows her conversation, and finds it quite frustrating when people try to be helpful by finishing her sentences for her. She undergoes regular speech therapy to help with this problem. Routine is an essential part of Lyn's life. Until the coronavirus pandemic she could be seen regularly walking in the beautiful botanic gardens immediately after breakfast; at the time of speaking with Lyn, the lack of exercise in the fresh air meant that she couldn't wait for the restrictions to be lifted.
Lyn is unable to cope with excess noise and bright lights and can often be found eating her meal wearing sunglasses with the lights off in a corner away from the noise of the dining room, not because she is unsociable, but because of the physical pain and anxiety she experiences. That said, she loves singing, although if you look closely you will see that she is wearing earplugs to take away the sharpness of the noise. She describes loud noise as though a bomb has gone off in her head, making it explode. These are things that other people can't see, but that she endures as part of her dementia state. Lyn also describes the feelings of confusion at a zebra crossing where the alternate black and white stripes make it difficult to know where to walk. The black sections seem like a big hole for her to fall into. The supply of mauve-tinted spectacles through a behavioural optometrist has helped considerably with these sensory problems. She describes how even the swift movement of water under a bridge on which she is walking, can send her off balance and nauseous (a bit like when you are sitting in a stationary train and the one at the next platform starts to move making you unsure which train is actually moving).
Moving into full-time care required an incredible amount of adjustment for Lyn who has always been extremely independent. She is grateful that the management and staff at Penhall have been understanding of her personal needs, refurbishing her bedroom window to lessen the glare, and issuing her with a code to the pedestrian gate allowing her easier access to the home after her daily walks. Without this code it would be necessary for her to struggle up the steep slope to the front door. Lyn fully appreciates the workload of staff members and is keen to help out wherever possible, for as long as her condition allows. While originally Penhall was the low-care unit at the hospital, since the government brought in the new ruling that every hostel should have a mix of dementia stages, there are now at least five residents who require high care, and whose situations can be upsetting and disruptive to the other residents, as well as the staff.
Lyn has a great concern that should the time come that her behaviour deteriorates to extent that she requires high care, then she would not want others who are low care to have to tolerate her. She feels very strongly that the government has made a bad decision in insisting on 'Ageing in Place', i.e. integration. As she says, the people who made the decision need to come and live the decision. The COVID-19 situation has been an absolute boon to Lyn. She now takes part in Zoom meetings two or three times a week, making contact with a huge number of people, both those diagnosed with dementia, and those in a support role, and she is able to enjoy the stimulation of conversing with people who are trying to make a difference to the world to ensure that the stigma of dementia is lifted, and they can remain part of their community for longer, feeling accepted as they were before the onset of their condition. In Lyn's opinion, there has been a silver lining to the COVID-19 cloud, which she hopes lasts well after a vaccine is found.
The Woodend Lifestyle Carers can be contacted by calling 5420 7132. Although located in Woodend, the group is for the whole of the Macedon Ranges and its neighbours.