Marlene from Wisconsin

I was a caregiver for my mom for 8 years after she could no longer live at her home. She passed away at my home 2 years ago. I'm still recovering emotionally and financially from my experience but I would do it all again because I love my mom.

I am single and have no siblings, husband or children. While in that regard, it's less complicated, it was more difficult because there was little or no help. I am self employed. As my focus shifted more and more to her care, my business suffered. The various doctor appointments and in home health appointments ate up my business day to the point where I could hardly get 4 hours of work in. I needed to recoup my own income, or I would be in ruins financially whenever she passed. My life was gone. I no longer had a social life. I felt extremely isolated.

The hardest part was having to push back with so many of the health care professionals. They of all people should know how difficult caregiving is and how important it would be to allow me to care for myself. Getting them to respect my schedule was most difficult. I had to remind doctors that just because I was self employed didn't mean my time was free. I had to question the necessity of appointments, treatments or so-called solutions. I had to be more than her advocate in the hospital. Mistakes were made that may have killed her. The confrontations were an added unpleasantry. Expensive home care professionals were sometimes 2 hours late without accountability. It seemed they just expected that I would have whatever money was needed for her care. Their care suggestions were anywhere from $2000-$8000 per month and were not always the best solutions or what mom wanted. Even the week I had total knee replacement surgery and able bodied adults helping in the home, I still had to defend myself against erroneous requests from her care professionals.

It wasn't until hospice that I got respite after nearly 7 years. I was never gone a night or without responsibility all that time and it took a toll on me physically and emotionally. In fact it almost killed me.

While I recognize the potential for abuses, Medicare should cover some costs to in home caregivers. There can be standards based on skill and services provided. We are far less expensive than care facilities, we provide many valuable services and there is a huge cost to us. I know my mom lived longer and had a better quality of life because of my care. I did the work of a CNA and sometimes a nurse. Mom used to compare me to the service she got at respite at hospice. I would remind her that there were separate people to do each task and they went home each day. I told her, I AM the entire staff and I work 24/7.

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