Showing posts with label homecare. Show all posts
Showing posts with label homecare. Show all posts

Tuesday, 21 July 2020

My Mother's Illness and Death: The Unkindness of the Medical Establishment. (To be blunt, people.)


My Mom.

I was listening to a podcast last night and a lady was being interviewed who had a child who had been born very small with some defects. She said a nurse said to her something like, “Been eating wrong foods?”

As if the mother wasn’t devastated already by her child’s illness, which turned out to be a medical condition having nothing to do with the mother. It brought back to me all the disheartening things nurses said to me during the years I looked after my mother.

My mother passed away on June 29th. She was almost 93 and died of congestive heart failure. She had been ill for a long time. She was misdiagnosed a few times, but I don’t expect perfection from doctors. I know they are doing the best work they can. I asked the doctor a year ago if my mom might have congestive heart failure, but she said no, it was acid reflux.

The true diagnosis wouldn’t have made much difference anyway. And I’ve very glad she didn’t die of colon cancer which emergency doctors were 99% sure she had. They didn’t want to take a biopsy as it is a painful procedure and my mom was in her nineties. So, I lived with that scare for a long time. Altogether, my mom lived with us for five years and I’m so happy we had that time together.

But there were two things about my mother’s illnesses and hospital stays that made our journey much harder. The worst was that because of Covid-19 I wasn’t allowed in the hospital to visit her. They said I could come at the end, but it was too late when it happened. They told us a nurse was with her and I am grateful to that nurse.

Mom’s last day at home was a hard one. I just couldn’t get her breathlessness under control with her nitro sprays and she hadn’t been sleeping longer than 2-4 hours. My husband was working from home because of the virus so he was taking care of her in the day and I stayed up all night. But he would be going back to work the next week and I felt I just wasn’t competent enough to keep Mom comfortable any longer. We called an ambulance and they took her.

The emergency people called me and said I could pick Mom up in the morning and I said, “No.” Believe me, they were very upset, but I know my rights and they had to take care of her if I couldn’t.

Four days after putting her in a ward, the doctors agreed I couldn’t take care of her. Well, thank you.

By the time Mom was in the hospital ward her dementia was pretty bad. They said she didn’t ask for the family, for which I am grateful. It hurt my heart to think she might be asking why I wasn’t there.

But she just asked where she was every morning and seemed content with the answer. I believe she didn’t really know who my husband and I were the last week she was home. She rarely spoke and didn’t say my name anymore. She would forget what happened in a TV show a few seconds after watching it. She forgot all the visits from relatives in the last few years. She couldn’t read anymore because she couldn’t remember what she just read.

Yet, she was happy. That may sound strange, but it is true. We just watched TV together and she said she enjoyed each show. Before she forgot who I was, she thanked me over and over for taking care of her. Mom was almost always a sunny and grateful person and knew God. I know I will see her again.

The only problems I had was when I was questioned by nurses who visited and nurses at the hospital and nursing home she had to stay in while recovering from hip surgery.

After the surgery, they thought Mom was well enough to come right home or go for physical therapy at the nursing home. Well, she looked awful and was in constant pain so I told them to take her to the nursing home and I would meet her there.

I left that evening and I thought she would be okay. I came back in the morning and she said she had to go to the bathroom. I helped her in there and waited. A nurse came in and asked where Mom was and I told her. “No one is supposed to help her to the bathroom but us,” she said. I said, “Oh, okay.”

When Mom called out, the nurse went in and asked if she went. Mom told her no, she couldn’t. The nurse put her hands on her hips and said (not nicely), “This is the third time! If you don’t go the next time, I’ll have to use a suppository on you!” She was scolding her. A 90-year-old woman who had just had surgery! I took Mom home.

We got a hospital bed and all the stuff she needed and I took care of her with my husband’s help. Then a few weeks later, I twisted my foot around one of the legs of the hospital bed, which took up almost all the space of her bedroom. I couldn’t even stand on it, so I called an ambulance to take my mother. My husband was working and I had no one to help me take care of my mom. At this time, she was only sleeping for about 20 minutes at a time and I was exhausted.

When she was taken to the hospital the admitting person was angry. She called me and said, “This hospital is for sick people!” Well, my mother was sick and I couldn’t care for her so that’s why I sent her there! They kept calling me to come pick her up but I couldn’t! I know that in Canada they had to take care of her if no one else could, they just didn’t believe anything I said. It was horrible.

Mom was in a ward for four weeks and was injured twice while there. One time a nurse gave her twice the dosage of sleeping pills. Her organs started shutting down, but she pulled through. The other time, she fell out of bed because apparently some people choke to death trying to get out between the rails on the bed. So, Mom’s head had a hole in it from hitting the edge of the dresser and blood was everywhere. It makes me wonder why the nurses criticize family members when they make mistakes too. I could have sued over both incidents, but I would never sue people who are trying to heal people, even if they make terrible mistakes. Everyone makes mistakes.

 I took Shock Wave Therapy for my foot, which healed in 4 weeks. But I still had no one to help me with mother and she wasn’t walking yet.

I came to see Mom almost every day. The nurses thought she was being lazy and hard to get along with because she didn’t want to do any exercises or have them do anything to her. She just wanted to sleep. I kept telling them she was sick, but they didn’t believe me. But they had never seen her when she was well. They didn’t know how different she looked.

 It turned out later she was sick with a bladder infection. I then asked a nurse if Mom was getting her vitamin B12 shots. She told me Mom only needed pills not the shots. I told her that was wrong and she lost her temper at me and walked away. Later her feet had bruises on them and a doctor there told me it was because of a lack of vitamin B12.

One nurse told me I needed to push my mother to exercise etc. I said she is 91 and tired; she needs rest and more sleep. The woman was so mad she turned and walked away too. This was how they treated me the whole time.

Later, Mom started to walk with a walker and was sleeping through the night, so I felt I could take care of her again. When I took her home, I let her sleep as much as she wanted. She slept 20 hours a day at first and slowly she slept less and less until she was down to 9 to 10 hours a day. She recovered, which the doctors did not expect.

The next year went very well until she started getting the signs of congestive heart failure. I was so glad I could take care of her by myself the last two years. I know I did an excellent job, no matter what the nurses said and hinted at.

When she was in the hospital for the last time a nurse called me and asked if my mother had been walking with a walker. I told her no, she had told me she couldn’t walk anymore so I had been wheeling her around the apartment in a small travel chair (it is like a small wheelchair). The nurse said, “Well, she is walking.”

Hey, I’m glad she was walking, but it didn’t really matter here at home. She said she couldn’t walk and that was good enough for me. Frankly, it is hard to get over the unkindness of the nurses I dealt with. I’m sure there are also good and kind nurses somewhere.

I hope my experience was unusual, but I also wish there were classes given to medical workers on how to talk with families of patients.