Thanks for sharing this article. It puts into perspective how much we need to reimagine Alzheimer’s/dementia and family caregivers to advance the future of care.
My advocacy work will become more focused to spread awareness and support for dementia care. We are given an opportunity with this election that will create more awareness.
thank you for sharing this article! right now, the past year and a half, this is what I have been doing, filling out different surveys for incentives, because that is the only way I can receive ANY incentive since I still cannot work outside the home and have too many distractions for a full time work at home job.
And you are right, these surveys do not get it! I have been asked many times how many hours a week that I care for my mom (she still lives with me and the family) how can I tell them like 24 hrs a day/7 days a week? This is not a part time 'job' , there are no breaks or vacations. I still have not taken that family trip to California that I had planned the past three years.
You have to be available and on call for 24/7. It's difficult to explain what it's like to live on high alert and how hard it is to stick to a schedule. You never know when the next crisis and distraction will happen. It's exhausting.
no need to explain as I have been doing this full time for over four years, it's just that these surveys do not understand how hard our jobs really are
Denise,
Thanks for sharing this article. It puts into perspective how much we need to reimagine Alzheimer’s/dementia and family caregivers to advance the future of care.
My advocacy work will become more focused to spread awareness and support for dementia care. We are given an opportunity with this election that will create more awareness.
I totally agree that the opportunity is here now. So many need sooo much support! I love this focus, Carlos. I so appreciate all you do.
thank you for sharing this article! right now, the past year and a half, this is what I have been doing, filling out different surveys for incentives, because that is the only way I can receive ANY incentive since I still cannot work outside the home and have too many distractions for a full time work at home job.
And you are right, these surveys do not get it! I have been asked many times how many hours a week that I care for my mom (she still lives with me and the family) how can I tell them like 24 hrs a day/7 days a week? This is not a part time 'job' , there are no breaks or vacations. I still have not taken that family trip to California that I had planned the past three years.
You have to be available and on call for 24/7. It's difficult to explain what it's like to live on high alert and how hard it is to stick to a schedule. You never know when the next crisis and distraction will happen. It's exhausting.
no need to explain as I have been doing this full time for over four years, it's just that these surveys do not understand how hard our jobs really are