How I coped with my mum’s dementia
This week's storyteller is Lesley Trenner.
Lesley, an Ageing Parent Coach, describes how she learnt to deal with her mum’s advancing dementia while making career decisions. She talks about how she now offers support to others facing similar challenges with their parents.
Looking back, we aren’t entirely sure when mum’s mental condition started to decline but about 5 years ago we became seriously worried about her. She kept losing her keys, leaving her purse in shops, repeating herself, forgetting how to use household appliances and talking about people who had died as if they were still alive.
Finally, we took her to the “memory clinic’ and she was diagnosed with “Dementia in Alzheimer’s disease”.
It felt terrifying.
We thought that meant she was “going mad”. In fact mum didn’t go “mad” and still hasn’t. But she was slowly losing the ability to live on her own and some of her personality was gradually fading away.
The challenge of juggling work with care
At the time of my mum’s diagnosis I was working for a global pharmaceutical company. I’d been there for many years in a number of senior roles around organisational change, communication and executive coaching.
I’d always believed that helping people develop at work benefitted both the employee and the employer which is why managing work/life balance is of particular interest to me. If things at home aren’t going so well it’s going to affect performance at work.
I realised that becoming responsible for my mum’s wellbeing was similar to being a single parent. I was facing similar issues of juggling work and family life all over again.
My mum was determined to stay in her own home. She had always been fiercely independent but there was more to it than this. She seemed to be completely unaware that anything was wrong with her.
Initially we worked on persuading her to have carers come in and help her. We called them “visitors” and used this as a pretext for them to help mum with whatever she needed. We said they wanted to do their bit in the local community so would she please indulge them? At first she didn’t like having strangers in her home and would sometimes cancel their visits but eventually grew accustomed to them popping in.
Even with the carers visiting mum on a daily basis I’d get a string of anxious phone calls throughout the working day about anything and everything from bills, gadgets and mum’s arrangements to birthday cards, bus passes and light bulbs.
I’d face the endless dilemma of whether to slip out of a meeting to take the call, let it go to voicemail, or, if something needed doing, I’d try to figure out how soon I could go and visit mum or arrange for someone else to go.
I was constantly worried about how well mum was looking after herself and how much she was at risk. It was also very important to me to be professional at work so this meant a lot of internal battles about needs and how to juggle time and priorities.
Making a career change made care easier
When the opportunity for redundancy came up I realised that this could make it much easier for me to support my mother. I was also becoming more and more certain that I wanted to be a coach – but although I could help others with transitions in their lives I wasn’t so good at making changes for myself!
I signed up for an advanced coach-training course spread over several months. Course participants were asked to examine our own feelings as well as listening to each other in order to learn more about the underlying psychology of the issues people face in day to day life
This was challenging and sometimes painful but it did also provide a safe place for me to talk about my mum’s dementia. It was becoming clear that even with carer support, family visits and frequent phone calls, it was no longer safe for her to live on her own.
When mum started forgetting where she lived we knew it was time for us all as a family to take action. Throughout the 20 weeks of my training course, I found coaching to be a fantastic way to untangle some of my darker feelings, figure out how to work as a “team” with my siblings and learn how to handle the constant uncertainty surrounding mum’s mental health.
I’ve since used coaching to help me cope with moving mum into a care home and to think about difficult financial and legal decisions as well as the more subtle ones like how often to visit when my mum can’t remember whether I’ve been to see her or not.
Using my experience to coach others
My coaching course helped me make some important decisions about my career. I finally took the redundancy option at work and became a self-employed coach. It might sound like an easy life transition but believe me it was hard at first. In fact, it took a while to come to terms with not having the structure and routine of corporate life and to figure out exactly how to set up and run my own business.
I decided to “brand” myself as a “Change Coach”, because of my professional background, and focus on helping people undergoing changes at work or in their family lives.
Suddenly it all fell into place when I realised that I should support those who, like me, were “caring”’ for an ageing parent. I knew I could best use my skills and life experience to help people who were coping with difficult feelings and other issues related to eldercare like shattered family relationships and a strained work/life balance.
Becoming responsible for an ageing parent or elderly relative is at best a significant change and at worse a trauma that can have a knock-on effect on your career, relationships, physical and mental wellbeing.
Friends don’t understand unless they’ve been through it. Counselling may not address the specific challenges and while there are a number of useful websites and help lines, I think there is a huge support gap for the “adult child” as their relatives grow older and become more needy.
Coaching had given me a confidential place where I could talk about complex feelings, solve problems and find ways of coping
So, that’s how I got here! Supporting people – often but not always women in their middle years - who are looking after ageing relatives.
How to cope
Becoming a mother to my own mother has been, and is, a strange and disconcerting role reversal. I’ve experienced sadness, impotence, guilt, more guilt, resentment, confusion and fear. Since hearing other people’s stories about the challenges they’ve face with their parents I’ve realised that the questions are numerous and the answers are different for each individual. For me there are several key ways to cope with whatever is thrown at you:
- Expect a roller-coaster of emotions. Don’t judge yourself too harshly. Like they say on airplanes – fix your own oxygen mask before helping others with theirs.
- Information helps, and so does being organised but there’s an awful lot to learn and to do!
- Be polite, assertive and persistent with the professionals. The system is complex and sometimes you’re the only person fighting your and your parent’s corner.
- Try to enjoy the good times with your parent. If these have all but gone, hold on to good memories.
- Talking things through in a neutral environment really can help you and your family to work out what to do, how to cope and how to do the best for your relative.
Dr Lesley Trenner is an Ageing Parent Coach based in London. Lesley has 12 years’ experience working with individuals and organisations undergoing change. She has a particular interest in the challenges presented by mid-life career and family changes and in supporting people with ageing parents. Email or call 07919 880 250 Lesley for a free introductory phone chat.
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