I love the awareness that you are spreading❤️ As a 29 year old care partner for my 53 year old mom with FTD, it’s been such a hard road. Not really understanding what the disease is at first and then being educated on it has been a blessing and a curse. Trying to focus on the positive side of being aware
Thank you for bringing such public awareness of this horrible disease. My mother died from Dementia. She had Cerebral Atrophy - her brain was literally shriveling up inside her skull. Myself, my son, & my brother all moved in together to take care of her. We did this for over 10 years. The hardest part was watching the slow deterioration of her cognitive AND physical skills. In the beginning she would laugh about having a 'swiss cheese brain'. The day came when she looked at me and asked "Who are you?" That was devastating, my brother had the same reaction the first time she said it to him. She would ask for me and I would say "I'm right here Momma" and she would look at me and say "No, I want my daughter Shari". I would have to leave the room and come back in for her to accept that I was 'Shari'. During all that time I wondered if she was aware and I believe she was. Somewhere, deep inside that shriveling brain of hers, she knew what was happening. Shortly before she passed we had a moment where she suddenly looked at me and it was MY MOM, the Mom I had always known, looking at me. And she very clearly said to me "I don't want to be like this anymore". And then she snapped back into her dementia state. And I knew, in that moment, that she was fully aware of what was happening to her. It was just trapped inside her brain and couldn't come out. But in that 30-second exchange the woman I had known my entire life was there - fully - and let me know how she felt about it. It wasn't long after that she passed. So, sorry for going on so long when all I intended was just a quick thank you for shining a light on this terrible disease.
Thank you Emma (and Nicole) for being such good "informants". There's not much positive about this disease but the effort you're putting into educating others is only a plus. As the disease advances caregiving becomes more difficult and a full time job for more than one person. The depressing part is that it's a one-way road with a predictable end that you can do nothing to stop. Having support for family members is important and Nicole has found some good avenues for that. This disease has really stolen my girls Mother and requires so much of my attention that it also takes away my time with my girls and grandkids. There are no good answers but I know Nicole gets a lot of support from you, Emma and hopefully you also can count on her as a person to talk to when in need. Feel free to contact me also if I can share anything helpful.
I love the awareness that you are spreading❤️ As a 29 year old care partner for my 53 year old mom with FTD, it’s been such a hard road. Not really understanding what the disease is at first and then being educated on it has been a blessing and a curse. Trying to focus on the positive side of being aware
Thank you for bringing such public awareness of this horrible disease. My mother died from Dementia. She had Cerebral Atrophy - her brain was literally shriveling up inside her skull. Myself, my son, & my brother all moved in together to take care of her. We did this for over 10 years. The hardest part was watching the slow deterioration of her cognitive AND physical skills. In the beginning she would laugh about having a 'swiss cheese brain'. The day came when she looked at me and asked "Who are you?" That was devastating, my brother had the same reaction the first time she said it to him. She would ask for me and I would say "I'm right here Momma" and she would look at me and say "No, I want my daughter Shari". I would have to leave the room and come back in for her to accept that I was 'Shari'. During all that time I wondered if she was aware and I believe she was. Somewhere, deep inside that shriveling brain of hers, she knew what was happening. Shortly before she passed we had a moment where she suddenly looked at me and it was MY MOM, the Mom I had always known, looking at me. And she very clearly said to me "I don't want to be like this anymore". And then she snapped back into her dementia state. And I knew, in that moment, that she was fully aware of what was happening to her. It was just trapped inside her brain and couldn't come out. But in that 30-second exchange the woman I had known my entire life was there - fully - and let me know how she felt about it. It wasn't long after that she passed. So, sorry for going on so long when all I intended was just a quick thank you for shining a light on this terrible disease.
Thank you Emma (and Nicole) for being such good "informants". There's not much positive about this disease but the effort you're putting into educating others is only a plus. As the disease advances caregiving becomes more difficult and a full time job for more than one person. The depressing part is that it's a one-way road with a predictable end that you can do nothing to stop. Having support for family members is important and Nicole has found some good avenues for that. This disease has really stolen my girls Mother and requires so much of my attention that it also takes away my time with my girls and grandkids. There are no good answers but I know Nicole gets a lot of support from you, Emma and hopefully you also can count on her as a person to talk to when in need. Feel free to contact me also if I can share anything helpful.