A quality of life

Human beings need social interaction with others to stimulate thought, discussion, problem-solving, share stories and experiences and simply to have laughter and a sense of freedom by escaping “my world”.

The Dementia “Catch-Up Cuppas” are an avenue for people with dementia and their family members to engage with others who have the similar world, the dementia world. Many express a feeling of isolation and loneliness as their world becomes smaller, as often the person with dementia may lose conversational skills and family and friends do not visit as regularly. This impacts socially on both the person with dementia and the family carer.

The Caloundra, Maleny and Nambour Catch-Up Cuppas operated by volunteers who facilitate the groups have become an outlet for socializing, There was laughter about memory loss stories and sometimes a few tears as the group is a safe space for this freedom of expression where open support and friendship is given.

Maleny group member, Claire said “it was just so good to be out”. Caloundra’s Brenda was tired but found the energy to attend with her husband. Her world has opened up more as she has a wheelchair for him which makes it easier to transport him. Brenda reflected how her hubby took her around the world in their yacht so she can take him around in his wheelchair.

Whereas others have gained support with information on services that help such as Wellways via Carers Gateway for family carers, continence support, possible GP’s and more. Another carer at the Nambour group was able to support a fellow carer and their person with dementia with referrals for religious support.

Clare, a member of the Nambour group, is 60 and was very successful with a PhD but started to have visual difficulties. At 55 she was was diagnosed with Posterior Cortical Atrophy (PCA). Clare shared her daily activity of making paper collages which is her way of being creative but also a way of expressing her thoughts and feelings, She cannot type or write very well due to brain atrophy. A carer who works part-time wants to buy some of Clare’s collages to use as wall artwork.

The males join together to discuss their past occupations, travel and where they have lived. Two shared a love of sailing and met for lunch with their wives. Interesting lives enfold of living in South Africa, England and New Zealand. One has worked in advertising and another as a hospital theatre orderly.

Couples can have an outing together as well. It was lovely to hear some couples reflect and share their journey.

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When carers place a loved one diagnosed with dementia or another medical condition into a nursing home (residential aged care facility) some carers may feel lonely and a sense of guilt. When their loved ones die there can be an overwhelming sense of the physical loss. Socializing to support the “post-carer” is vital for them to regain connections to create a sense of meaning. Darryl and Cal were able to gain understanding from those in the group who have walked the same walk. Post-carers are welcomed in the groups.

The value of past is under-valued, as Margaret spoke of her time of managing country pubs and hotels. She wasn’t a person with a medical condition, but a person who in conversation was with each word, regaining her identity as a business woman and her dignity. She was valued.

The spirit within a person shines in a caring supportive environment. Commitment of love shines in care and sharing.

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The stereotype (misunderstanding) of people with dementia creates stigma. Stigma can be shown in many ways including avoidance, rushed appointments, loss of identity, lack of communication and even lead to financial abuse.

The staff at the new Catch – Up Cuppa at Caloundra RSL was exceptionally supportive and Heather the manger of The Orangery Maleny is considerate of the group’s needs. RSL Nambour has been supportive in giving us a quiet area and turning off the TV above our table which makes it easier to converse. The outings without intention are breaking down barriers.

Networking is a social process of accepting that each person and organisation has a value in contributing and sharing to make the “dementia world” a better place.

Clare says it best with her collage which she made for the group.