@JaneG76708 Hi Jane - I'm so sorry it sounds like you've had some very frustrating experiences and your load is heavy.
Let me first say that all family caregivers have expertise - living through caregiving is really what teaches us the most. You are an expert too in many many ways. But you make a good point - I should have shared my background. I'm actually 58 years old and have worked in the field of aging for more than 35 years. I started out my career working in adult day centers and nursing homes. Then I worked for the Ohio Dept. of Aging for many years, then joining the AARP staff full time for 15 years, and I've been contracted as their family and caregiving expert for the past 10 years. During all of that time I was first a caregiver for my grandparents at the age of 21. My grandmother had Alzheimer's and I organized in-home services for her and my grandaddy for many years. Unfortunately they lived at a distance (one state over in Indiana) but I went frequently on weekends. I dealt with many systems and trying to get them care and services - too much to share here but believe me I learned a lot in my 20's.
My Mom had a stroke when she was just 63, and again I helped fight for services for her for many many years. My Dad had Alzhiemer's eventually, and 10 years ago I moved to Arizona to take care of both of my parents. My parents lived with me and so I also experienced many difficult behaviors as Alzheimer's progressed for my Dad. Fought for much medical care, services and assistance for him and Mom and dealt with many systems including the VA all while providing from 60 - 90 hrs of hands on care for them myself.
One of the most difficult times was when my fell and fractured her spine in 2 places - led to 40 days in hospitals, 3 surgeries, a heart attack, congestive heart failure, pneumonia, sepsis, a-fib and C. Diff. Nightmare.
During all of that I was also caring for my sister from a distance - she had Cushing Disease. My Mom passed on in 2013, my sister in 2014 and my Dad just 1 year ago.
I would never assume to be any smarter or better than any other caregiver - it's just a matter of offering help and connecting with suggestions and services. I've talked with thousands of caregivers over the years, hear and helped solve many problems. I bring that background to my job as AARP's family & caregiving expert.
I hope this helps alleviate your concerns, but more importantly we want to help you deal with your spouse. Are you stll caring for him? Can we help you connect with any services or assistance?
Take care - I know you are under crushing stress and just trying to keep your head above water. I know the feeling.
Amy Goyer, AARP Family & Caregiving Expert
Author, Juggling Life, Work and Caregiving and
Color Your Way Content When Caring for Loved Ones