Who Cares for the Caregiver?

These last 6 months have been filled with illnesses and stress. My mum hasn't been too well and has been in and out of hospital and care homes since October. She is a type 1 diabetic and was diagnosed when she was 13. She also has renal failure, heart failure, high potassium, vascular dementia, and I’m sure the list goes on.

Cancer changed my priorities

To be honest, my relationship with my mum has not always been the best. For over 10 years, we had no relationship at all! It was only after the first year of my cancer diagnosis that I reached out to her. That's the thing with cancer - it changes your priorities in life. None of that material stuff matters; family and friends matter. As a result, I was now having a wonderful relationship with her, which I can tell you would not have been happening had it not been for bladder cancer.

Sick with the flu

In late October, I was traveling to Philadelphia, and my poor mum was on the floor in her living room. None of us realized that this was going to be the start of many long stays in the hospital. I had the flu badly when I got home, and it took me a good few weeks to feel anywhere near better. So, I think it was near the end of November when I finally managed the 4 and a half hour journey to see her.

Going to stay at my mother's to help care for her

My plan was to stay a few days at her house and to be able to see her every day. I understood that she would be in the hospital for a while, so I packed my bags, my stoma bag, my medications, and off I went.

My mother wasn't well but she wanted to go home

She looked awful, I wasn’t expecting her to look as bad as she did. However, after speaking to a nurse, they informed me that she was doing ‘really well,’ and that they would be releasing her soon. My aunt, sister, brother, and I were all very concerned. She had been in there for over 7 weeks now, and I guess that the bed was needed for other patients. My mum was going out of her mind. Yes, she has vascular dementia, and yet most of the time, she is fairy lucid and just gets a little muddled. She kept repeating that she "just wanted to go home.”

Fixing up my mother's home

I still felt very ill and decided it would be nice to turn my mum's bungalow into a proper home for her. She hasn’t had the best of times over the years and now lives in a council bungalow, small and not very homey. The carers who look after her do their utmost to help to keep the house clean, but there is only so much they can do. (Thank you for taking great care of my mum!)

Cleaning, painting, and sorting photos

My sister and I started going through things, cleaning the bathroom and kitchen until they gleamed. The bedroom and hallway got a fresh lick or two of paint. We found family photos of all of us and bought frames from the charity shops. She now has pictures of her mum and dad, her sister, and all of us all over her walls. These help to aid with her memory and share memories from all of her life.

She had a piece of wallpaper that had been hanging down for years, and it had been annoying me for years. But at what point do you decide to start taking charge? I often asked if she wanted me to glue it, but she always said no. I realize now it was because my time with her was precious, and she just wanted to sit with me. Anyways, I glued that sucker back up and even that made a huge difference to the room. We scrubbed, cleaned, laughed, looked at old photos. I lost count at how many times I took broken things to the dump.

Visiting my mother every day

It made me sad, as this was all she had left from her life. Her two failed marriages, her 70 years of being on this earth. Some broken cassettes, a record player, and the list goes on. We kept visiting mum, which made her day, teasing her with cryptic clues of what we were doing... and saying that she would either 'love it' or she would ‘lose her sh#t,” and we weren’t sure which she would do.

I was exhausted

I was utterly exhausted and living off cough medicine and far too much flu medication, and to be honest, I have no idea how I had the energy. I was sleeping by 8 PM every night. My sister, thankfully, cooked for me.

Why hadn't I helped her before?

But I was determined that my mum would have a ‘home’ to come back too. I think it had all gotten far too much for her to do. She is living in a nice but small bungalow. It suits her, but I guess there has just been no one there to help her. Why hadn’t I helped before? Or my brother or sister?

Stepping up to make my mother's life better

I felt ashamed. This woman looked after us, and yet no one had stepped up to look after her. That’s when I decided that I would do anything and everything I could to make my mum's later years the best ones.

We were informed that mum could come home on a Friday if one of us could stay with her till her care started on the following Monday. My heart sank a little because it was left to me. “Me? In charge of my mum?”

That day was the day I began to step up.

Stay tuned for Part 2 of Anita's story about caring for her mother while managing bladder cancer.