I wanted to know what to expect. I wanted a date. I wanted certainty that I could plan for. I wanted the nurse to tell me the day and the hour and of course that was not possible. And I did not want the end, ever. In early May I went home for a few
Mom lived for another nine months after that time. At this stage I thought I would have to put her in an institution but yet again we found the path to keep her at home. Her home transitioned to give her the best care. A hospital bed had been purchased and a lift rented. I
I did not believe I could manage this entire journey at home. I thought in the last year Mom would go to a home and my staff would go with her during the day leaving the nursing home to take care of the night shift. It would all work out…somehow. As each stage came along
What I liked about caring for Mom at home was that it was all about Mom. We did not have to accommodate other patients, or rules or even safety guidelines. We did have to constantly come up with new ideas and solutions. Often that was my job. Like finding the right kind of incontinence products.
In this past year there have been lots of terrible stories about nursing homes. We can hope this will lead to higher quality care and more monitoring of the homes. I want to encourage relatives to continue to advocate strongly for their loved ones. You have to be involved for the care to be the
I shared what I was doing for my Mother with many people and they would say, “It is not your job to wipe your mother’s bum. You shouldn’t do that. You should always remain her daughter and not become her nurse.” I couldn’t have agreed more until I did it and then my perspective changed.
I was not prepared for the amount of involvement. Even though I did not live with Mom she was always in my thoughts and I was almost daily solving a problem. It was hard for me to find information and support for the kind of care I was offering Mom. The medical establishment understands the
The team worked hard to create patient centered care. It was all about Mom. When she could tell us what she liked we would do our best to make it happen. When she could no longer tell us we tried to guess and always respected the person she still was. The team slowed down to
The last year, during the palliative stage, when I was not with Mom she was always on my mind. She was on very few drugs but we were prepared for whatever happened. We live in a small town so planning ahead was critical as access to drugs would be limited on the weekend. We were
I never dreamed I would be printing a “poop type” chart so that the team had a picture for a method of communication. “A big one” meant something different to everyone on the team and I do not want to go into details. We tried teas, Metamucil, laxative powders and kept a detailed diary of
