Lived Experience of FTD: Gina's Story

FRONTIER is a highly collaborative, interdisciplinary research clinic that investigates Frontotemporal dementia (FTD) in collaboration with ForeFront Ageing and Neurodegeneration. FTD is Australia’s second most common degenerative disease that causes dementia in younger adults. As the first ever research group to concentrate on FTD in Australia, Frontier is dedicated to identifying better ways to diagnose FTD, finding the cause and developing effective treatments for the condition.

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[jadesea]

It is stardust from whence we came; it is stardust we eternally remain. What a special journey you two had together this time. Find each other again. We do that.

[Mariabarlow]

Thank you for sharing your story. So many people don’t understand this debilitating disease.

[sfguy]

Thank you for posting this. My wife died from an unidentified brain disease in her early 40s while we had an infant child. I’m realizing through seeing other people’s experiences, that terminal disease is terminal disease. It’s a difficult road for both patient and caregiver and loved ones. In some ways the road is unique but in many ways it’s not, since it’s about decline, loss of function, and ultimately death. The end of dreams and aspirations for both the patient and their spouse. It’s difficult to accept but we have to accept it. Thank you

[giakamar]

My name is Gina, and i lost my father recently from FTD, he was hospitalized for the last two months, in and out, due to breathing complications and then hospital infections and so on. I cared for him the best way i could, since i was the only one that i could, my mother has mobility issues and my sister lives far away. I am still trying to come to terms with his loss. My whole life was caring for him, and now my world feels so empty. I also keep thinking if i have done everything right or if i could have done something better, guilt is hitting me hard sometimes...I also told him that i loved him all the time and i also told him that i know he loves me too, like you did. It is a very cruel disease. My father was 73.

[Begging-xmiz]

I do respite care for adults with disabilities, it's so important that caregivers take care of themselves, it can be exhausting physically and emotionally when there's only one person to do all the care. I only have 2 clients at the moment because I am older but it's rewarding to help others. My clients are self sufficient and can do everything but needs help with shopping and taking them to appointments, to the park. I'm so glad that you took time for yourself. I'm sorry for your loss, thank you for sharing your story. 🙏❤️

[ceciliabeasley]

Thank you for this video I know it’s hard we have Alzheimer’s runs in our family. It’s my turn now I’m at the start. My poor kids.

[sammyrichardson]

I am so sorry for your loss and so grateful for you insight and love towards another human being. I do hope this video finds you well and rested and those lovely memories are at the forefront of your mind.
I would love to speak with you if you ever have time. Greetings from the UK

[michelleberryhill]

Thank you so much for sharing your story .... absolutely beautiful and heartwrenching. ❤

[lorrainevalet]

You are an amazing. You showed your care for shows what love is all about, for better or worse.

[staceywolfe]

You are an amazing lady, Gina ❤ thank you for sharing your story.

[RCSTILE]

As tragic as it is to watch someone succumb to dementia, be grateful you were not burdened with the tremendous financial difficulties that can accompany this horrible disease. Unfortunately my mother wasn't so fortunate when dealing with my fathers six year battle with Alzheimer's.

[GClay-gx]

Amazing couple, you're an amazing lady Gina x

[iashakezula]

Just found this video. My mother in law has dementia but she is very resistant to any help. She lives with us and my world of peace is upside down ..If I don’t prep her food, all she will eat is potatoes, bread and cheese.I tried to reorient her that the person in the den is her son..

[rawmilkmike]

Thank you for the story. I'm 68. It made me think.

[kvdme]

Sorry for your loss😢. You did well my dear. The Lord is pleased.

[annmakris]

Yeah, hospice care was very disappointing to me when I was caring for my mom. They keep sending me surveys and I throw them in the trash. I needed them when she was dying and they certainly were not there.

[marykay]

This was wonderfully put together. I'm in school to become a nurses aide and my research paper is on FTD...how were his activities of daily living handled by himself in the early stages?

[RobertalWilliams]

What is FTD? Youtube reaches people around the world who may not know what those letters stand for. Very sorry for your sad story.