Powerful video. I hope you get additional help soon. We need to get the stories out in the public domain about what it is like to experience caregiving in the home. There is little understanding-still-about the demands of home care on families and the kinds of support people need in order to provide our loved ones with care over the full span of their disease processes. Many caregivers WANT to do this if they are able, but can only do so with the right care and supports from home care programs. I am a home care researcher as well as a nurse who spent most of my 30 year career in home can community care. My father received home care for 22 years due to MS, mostly loving care from my mother and an hour or two a day from the government home care program. Mom advocated as much as she could but caregiver strain and exhaustion made effective advocacy near impossible. Thankfully, we have a supportive family and importantly medical insurance and enough funds to pay privately for fulltime RN care when mom came to visit her two daughters (who lived away for two weeks a year). Dad died at home in 2001 at he age of 64. Your story resonated with me very much! Thank you so much for sharing.
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