Thank you too Sameer Khan! And I agree with you that there is a problem of elders being seen as a burden to society. But we need our elders. We need their wisdom, and even when that goes, the lessons that they can teach us about compassion and non-aversion. You never wasted a moment caring for or advocating for your father or anyone in his position. You did something wonderful. You should be proud.
Forgive me if this is not the right place to send these references. I have been remiss in keeping up, and went to read the update and watch the videos today. At least from here, I was unable to get them to play. Anyway, even a really quick search led me to a reference, that in turn led to others recognizing that caregivers, particularly somewhat older and particularly female caregivers, often wind up with financial and health/stress issues, both during caregiving AND thereafter. So there is a need to address the wellbeing of the caregiver to break the cycle of creating additional elders without adequate care. This could only benefit both the patient and the patient-to-be. Anyway, you probably already have these and many more besides, but sending them just in case they are useful.
Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J, editors. Washington (DC): National Academies Press (US); 2016 Nov 8 https://www.ncbi.nlm.nih.gov/books/NBK396402/
NAC and AARP Public Policy Institute. Caregivers of older adults: A focused look at those caring for someone age 50+ Washington, DC: NAC and AARP Public Policy Institute; 2015b.
Spillman BC, Wolff J, Freedman VA, Kasper JD. Informal caregiving for older Americans: An analysis of the 2011 National Study of Caregiving. Washington, DC: Office of the Assistant Secretary for Planning and Evaluation; 2014. [April 9, 2015]. https://aspe.hhs.gov/report/informal-caregiving-older-americans-analysis-2011-national-study-caregiving.
Keating NC, Fast JE, Lero DS, Lucas SJ, Eales J. A taxonomy of the economic costs of family care to adults. The Journal of the Economics of Ageing. 2014;3:11–20
Butrica B, Karamcheva N. The impact of informal caregiving on older adults' labor supply and economic resources. Washington, DC: U.S. Department of Labor; 2014. [April 8, 2015]. http://www.dol.gov/ebsa/pdf/impactofinformalcaregivingonolderadults.pdf
Jacobs J, Van Houtven C, Laporte A, Coyte P. The impact of informal caregiving intensity on women's retirement in the United States. Toronto, CA: Canadian Centre for Health Economics; 2014. [October 13, 2015]. http://www.canadiancentreforhealtheconomics.ca/wp-content/uploads/2014/04/Jacobs-et-al.pdf.
Langa KM, Chernew ME, Kabeto MU, Regula Herzog A, Ofstedal MB, Willis RJ, Wallace RB, Mucha LM, Straus WL, Fendrick AM. National estimates of the quantity and cost of informal caregiving for the elderly with dementia. Journal of General Internal Medicine. 2001;16(11):770–778.
Lilly MB, Laporte A, Coyte PC. Labor market work and home care's unpaid caregivers: A systematic review of labor force participation rates, predictors of labor market withdrawal, and hours of work. Milbank Quarterly. 2007;85(4):641–690. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2690351/
Van Houtven CH, Coe NB, Skira MM. The effect of informal care on work and wages. Journal of Health Economics. 2013;32(1):240–252 https://doi.org/10.1016/j.jhealeco.2012.10.006
Butrica B, Karamcheva N. The impact of informal caregiving on older adults' labor supply and economic resources. Washington, DC: U.S. Department of Labor; 2014. [April 8, 2015]. http://www.dol.gov/ebsa/pdf/impactofinformalcaregivingonolderadults.pdf.
Wakabayashi C, Donato KM. Does caregiving increase poverty among women in later life? Evidence from the Health and Retirement Survey. Journal of Health and Social Behavior. 2006;47(3):258–274. https://www.ncbi.nlm.nih.gov/pubmed/17066776
Lai, D.W.L. Effect of Financial Costs on Caregiving Burden of Family Caregivers of Older Adults SAGE Journals. October, 2012 Voslume 2 Issue 4: pgs. https://doi.org/10.1177/2158244012470467
Family Caregiver Alliance, National Center on Caregiving. Women and Caregiving: Facts and Figures. https://www.caregiver.org/women-and-caregiving-facts-and-figures