My dad died on Sunday from this awful disease. He was stoic throughout, from diagnosis until death, never once complaining and I'm so proud of him. Despite having Covid I was able to see him on the Thursday (doubling up on PPE) before he was given the serious drugs and so I was able to tell him all the things you'd want to be able to tell your dad before they die.
I know all cases are different, but for dad it was 5 years from diagnosis to death, 3 years from diagnosis to needing real hands-on care and he needed 24 hour care for the final 9 months. Up until 4 months ago I swore he'd have held out for a year or two.
I'm glad that this place exists for people to ask questions and post their experiences, so thanks to the admins and everyone who posts here. Nobody wants to be here but everyone is so supportive and it's a joy to see the way people help others. Thanks to everyone. xxx
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Nodbod
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My wife died a week ago at home after living with FTD/PSP for over 12 years. I'm devastated, but was so glad that this forum was there. A big hug to you Nodbod.
It's always a struggle to find the right words. The loss of your dad is heartbreaking sad, but there is thankfulness that the awful suffering is over. Hugs to you ❤
Dear Nodbod - I was struck by your word stoic. My husband's stoicism makes me weep. Although I know it may be the apathy that can come with the condition or the mild antidepressant he takes and although it makes for a more peaceful life, sometimes I wish he would "rage against the dying of the light".
Such sad news. It's 2 years tomorrow since I lost my Dad to this awful condition. There are no words I can say to make your heartbreak any easier, but knowing that he is now at peace and free from the suffering will help. Big hugs to you, look after yourself xx
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