Looking after someone with dementia and working full time
Read Sarah's story, head of tide delivery and former carer...
After my grandfather died, my nana struggled, at first with grief and then with a cancer diagnosis at 83 , but also with the onset of vascular dementia at that time. She was living alone in a small bungalow in a sheltered housing complex but with no warden on site , just a pull cord in case of emergency that put her through to a control centre .
She was a very proud Scottish woman my nana with a heart of gold but stubborn as a mule. She refused to accept that there was anything wrong with her and she refused point blank to move house, either nearer to me ( as I lived 30 miles away ) or into warden controlled accommodation.
I was working 4 days a week for the local authority, my children were 4 and 6 and my husband worked long hours, I had no family on hand to provide child care at the drop of a hat, so life day to day was tricky enough, without adding in my nana with dementia and me, her main carer a half-hour drive away.
As the years progressed, things went from bad to worse. Instead of just popping over every Monday on my day off to sort bills and Gp and hospital appointments and take her shopping, I was getting phone calls from her worried neighbours saying she hadn’t opened her blinds or they had seen her out in the back garden in the middle of the night in her nightie, or her carers would ring (as they were going in 3 times a day since her cancer treatment to wash her and make sure she was eating ) and say they didn’t know if she had taken her medication and they weren’t allowed to give it, or she would have a fall and pull the chord and I would get a phone call at work and then dash off to the hospital 30 miles away to sit with her whilst she was triaged and then invariably admitted.
These calls would come late at night, in the middle of a workday , anytime but they became more frequent. I had to leave work many times and rush to see her. I would then owe time back, time I couldn’t afford to pay back as I also had my kids in childcare whilst I worked and couldn’t get extra care to allow me to make up lost work hours. Some colleagues were understanding but others, I could sense didn’t really understand, why I kept dashing off to see my nana.
The stress of it all built and built until I couldn’t sleep and was perpetually exhausted. I went to the GP and sobbed and begged for sleeping tablets but he would only give me a 2 week supply ( as they can be addictive). I could no longer concentrate at work and comments were made about me not pulling my weight by colleagues quietly. I felt as though I was doing nothing well, not work, not looking after my nana, nor being a good mum, or wife. My husband would come home from long stressful work days and I would leave him and the kids and dash off to see her, which placed my marriage under strain. Some days I would say one of the kids was ill to work,as I felt I couldn’t keep saying I had to look after my nana, because there was no one else to do it.
I was feeling physically unwell but couldn’t be bothered to schedule GP appointments and then Consultants appointments so just put up with the pain. I was signed off sick with stress and depression and then underwent 3 surgeries in the space of 6 weeks and developed peritonitis. Family members were then forced to help out a little more. I slowly recovered with rest and finally managed to get my nana moved into a lovely residential home, 10 minute drive from my home but only after yet another fall when the hospital were ready to discharge her back home and I insisted that a best interests meeting was held. I moved nana into the home in February 2012 and on May 9Th 2012 she died. I had taken so much sick leave by this point that after she died I took my 5 days compassionate leave and returned to work. I struggled on for a year and went on holiday abroad in July 2013 and had a complete mental break down. I ended up leaving the council after 20 years and took Voluntary redundancy, had 6 months of CBT and then started work in the charity sector.
I am not alone in my story, so many carers, particularly women struggle to do it all. I feel had my colleagues appreciated the difficulties of caring for a close relative with dementia, they might have been more understanding.
Also, I feel my employer could have been more proactive in helping me to stay in work, knowing that I was a sandwich carer (caring for children and an elderly relative ) and a distance carer too, they could have actively tried to support me.
There was no carers support group at work, no carers charter and this was a Local Authority employing thousands of staff. At the end of the day, some managers were better than others but it was not enough.
I think employers should have a carers charter, organise carer support sessions and educate all staff about caring responsibilities. Empathy from some staff was in very short supply.
How many carers do you think work in your organisation? What could you do to make it a more carer-friendly place to work? What support could you offer to help carers stay in employment?
Take a look at how tide can help make your employer responsible.