Anne is a Carer for her son, who has a brain tumour. She has been a Carer for three and a half years. This is her story in her words.
“In October 2017 my adult son, Michael, was diagnosed as suffering from exhaustion.
The following month he suffered a seizure, but was told he had just fainted and was fine.
In February 2018, following an MRI, he was diagnosed as have a space invading brain tumour.
Initially he was advised that a consultant would go in and remove it because it was situated between his skull and brain, but then the neurological consultant advised this diagnosis was wrong – it was actually a grade 3-4 tumour, and a de-bulk would be performed within 2 weeks.
Shock. Horror. Inadequacy. Numb. Sad.
“Initially caring was relatively straightforward…it was time consuming, but it was manageable.”
The de-bulking operation was successful to the extent that around 50% of the tumour was removed, but this left Michael with limited speech, and unable to write, read or tell the time. These functions later returned following therapy.
At the same time the flat he rented was to be sold, so we were looking for accommodation. Four days after his operation he had to move house, so I was left completing all the paperwork for the move, and also for the DWP. Because of everything that was happening, I missed time-scales and could not have it backdated.
Initially caring was relatively straightforward. I was getting up during the night to administer medication, preparing meals, running 3 households. It was time consuming, but it was manageable.
People initially were crowding us. Many were friends who wanted to be there to help or to be able to tell others how he was. Some, though, were very macabre.
We both found that everyone knows someone who has had a brain tumour, and the medical information each of these people knew was astounding. Brain tumour ‘cures’ included everything from using cannabis, to eating an apricot while singing Mamma Mia, doing a handstand and balancing a penguin on your right foot! Maybe it’s your left foot, so don’t quote me.
When you have lost control of everything it is difficult to come to terms with, so regaining some control of your life is paramount. It was so difficult, emotional and heart-breaking watching and being involved with the recovery – I could not fix it, but had to watch Michael struggle to try to express himself and communicate. The speech therapist advised he was to try to find his own words and we were not to help. Also, speech was delayed, so when I thought he was finished a sentence he hadn’t. This understandably led to a great deal of anger and frustration.
“When you have lost control of everything it is difficult to come to terms with, so regaining some control of your life is paramount.”
Hearing the sobs of frustration and the anger at not being able to do something that he would consider simple was heart wrenching. Trying to stay strong and not get upset while your child is hurting so much is so difficult.
In the background, having to arrange his will, power of attorney, banking, settling into new accommodation, laundry, shopping, sale of his flat, hospital appointments but most importantly time to sit with him and spend quality time was so difficult. This was on top of having to run my own house.
In March 2018 I had to stop working, and by May I had to re-home my dog as I did not have time to take care of him. He went to a very loving home where he is very happy. I have not kept in contact, as I do not think it would be beneficial to any of us.
“I was in shock and felt guilty that as a mum I had not prevented this from happening.”
People kept telling me I had to look after myself, but I was in shock and felt guilty that as a mum I had not prevented this from happening. I was cooking him nutritious healthy meals, but ignoring my needs so much that my weight increased to a dangerous level, and my energy levels plummeted to such a degree that after a year I needed respite. I was lucky enough to be able to take 3 weeks out and fully restore myself.
The brain does not rest though, even in sleep.
For Michael there is no switching off. So many bad dreams and nightmares. Chemo and radiotherapy on the scalp make even lying on a pillow painful, resulting in tears. The constant pain is also resulting in lack of sleep, which means irritability and being irrational. As a mother, it is so difficult not to be able to make it all go away and fix things.
The last year has proved difficult because we haven’t ticked anything off on the bucket list, yet time is still marching on. A whole year out of a 3-5 year prognosis is difficult to deal with. While others are moaning about not being able to go on holiday or to the pub, our priorities are slightly different.
Currently we are both doing well and doing the best we can with what we have. We spend quality time together, mostly in nature when we can. Watching different seasons and appreciating the changes they bring. Hopefully some walks and drives around once the restrictions are lifted, and looking forward to spring and summer, longer days and warmer weather.”
Many thanks to Anne for sharing her story with us. If you have been affected by any of the issues raised in this story, please contact the Centre for support.
