Transylvanian Alzheimer’s Café Association – this is the name of the freshly registered organisation of dr. Gabriella Kiss. The Alzheimer’s Café events that are popping up all throughout Transylvania are all organised withing the framework of the Association. The participants of these events are usually professionals, caregivers, family members, people in the early stages of dementia and those who are interested in the prevention of mental deterioration.
The launch event was held on the 6th of July, in Lăzarea, with a couple of unusual participants. The audience was composed not only of locals, but of the participants of the Caritas Volunteer Camp, too. Thus, the average age was barely more than twenty.
The dissertation on how the loved ones of patients are affected by the disease had a unique reception among the mostly teenaged participants. The seated dancing conducted by social worker Erzsébet Márton and the sharing of experiences were well-received, too. Senior citizens, highschoolers and college students all opened up about their hardships and fears concerning the illness. “It was hard to accept that she wasn’t trying to be rude or trying to mess with me, my mother-in-law’s mental abilities were just deteriorating.” “My aunt has Alzheimer’s and she’s deaf. It dawned on me just now: “We understand each other through our hearts.” “My mother was the same. It’s a tough illness. She was always happy to see us. She recognised us. I wish we could still go see her and bring her meals.” “My mother-in-law is ill. Up until this point I thought there was nothing more I could do, when she asked me the same question five times in a row. Now I know: there’s always something to do.”
“My father was 89 years old when he died. Towards the end, he didn’t recognise us, his own children anymore, but he knew that we were his until the very last moment” – reminisced the older participants, then the younger ones joined the conversation, too: “We had the same thing happen in our family and it scared us. It was frightening to see that he forgot our faces and did strange things. Now I see why he was acting like that.” “My great-grandmother had dementia, now I suspect my grandfather has, too. My grandmother can’t accept that he’s changed… but it’s for the better: he used to be stubborn, now he’s loving.”
Fear is often associated with dementia. Most people (of all ages) are afraid that the illness is hereditary. A girl in her early twenties shared her story: “My grandpa had dementia. I learned about dementia at university, and I knew that it wasn’t getting better. A few days after my grandma’s funeral he forgot that she had died and looked for her in the hospital. My dad is starting to forget too, and I’m scared. Am I next?” Next up was a middle-aged lady who was a volunteer caregiver: “My grandmother on my mother’s side was forgetful, she would ask me: “Are you going to work, girl?” five or six times. I said: “Grandma, that’s the sixth time you’re asking! to which she replied: “Stop counting, you’ll get old too one day.” That day is approaching, and until then, I’ll support the elderly and thank God for keeping my mind sharp. My advice is: never leave anyone behind! Help others selflessly, but take care of yourself, too.”
Dr. Gabriella Kiss tried to lighten the mood. She said that there was a difference between forgetting and forgetting. One is the result of exhaustion and having too many things on our plate, while the other is a sign of deterioration. Forgetting to some extent is nothing to be worried about, anxiety isn’t the solution. She also mentioned that caregivers often try to perform above their own capacity: “trying to stay on top of the job market, being there for our families and taking care of a person with dementia is severely draining and can cause us to feel lost in our responsibilities. Retirement homes exist. My mother lives in one, and I believe that I couldn’t give her the same support she receives there at home” – summarized dr. Gabriella Kiss, while addressing the audience who were listening with open hearts, and giving them a new perspective.
The 20th Caritas Volunteer Camp was organised by Caritas Alba Iulia Association and has been made possible by the support and partnership of the local government of Lăzarea, and Harghita and Covasna counties` councils. We would also like to thank the businesses and civil organizations that have contributed to the camp: End-Ibo, Ditró Bakery, Odorest, Vekker Coffee Community, Fapicom, Csíki Csipsz, Arbor Association of Entrepreneurs, Smart Safety, Caritas Logistics, Lăzarea House of Culture, Lăzarea Guild of Volunteer Firefighters, Transylvanian-Hungarian Astronomy Association.
Article: Katalin Balázs
Translation: Zsuzsa Kertész