Maintaining a relationship when your parent has dementia – a real-life story
Our specialist ageing parent “agony aunt” Lesley Trenner has been talking to people about the emotions around caring for family members living with dementia. Here she tells how sisters Jean and Diane are taking this journey and offers tips to others with the same challenges.
When your parent is diagnosed with dementia it can be very scary. Stories on the When They Get Older website describe the conflicting feelings that arise and, as someone who supports family carers, I often hear heart-rending accounts of family rifts, carer stress and isolation, and the dilemmas around juggling eldercare with work and the other demands of daily life.
So it’s good to know that some families do learn to cope and find ways to maintain a meaningful relationship with their mum or dad. As an example, take a look at this video of Jean and Diane’s story.
It’s refreshingly honest and funny and unusually upbeat about the possibility of holding on to loving feelings when both parents have dementia. Jean and Diane have some great advice about how to do this.
The sisters do acknowledge that in some ways they have been “lucky”. They come from a strong, supportive family and have always loved and admired both parents. They had each other to turn to when the going got rough. Their parents did not develop the most severe forms of dementia and were happy with their care home when the time came.
Many families aren’t so lucky. You may be trying to support a parent or relative with dementia when circumstances are more complicated and stressful without the support of family or friends. If so, I offer some tips for coping at the end of this article.
Jean and Diane’s story
Jean and Diane’s parents had been married for 63 years. The sisters describe their father as “the best Dad in the world” and their Mum as “just lovely”. After growing up in a very happy household, Jean and Diane both got married, had children of their own and are now grandparents.
Ten years ago, they started noticing changes in their Mum. She was hiding cutlery under the bed and had mood swings. Jean says they had never heard much about dementia but knew something wasn’t right and finally a diagnosis was made. Carers came in for three years and the sisters visited regularly to provide extra support. Then they started getting phone calls from the neighbours saying that Dad had started wandering. He deteriorated quickly and was also diagnosed with dementia.
Jean thought her parents would be better off in a care home but Diane resisted. She thought this would mean that the family had “given up on their parents”. They continued muddling through and coping with a series of domestic crises in their parents’ home, whilst also providing childcare for their grandchildren. Jean and Diane’s husbands could see that they were wearing themselves out.
Finally, Mum fell down the stairs and had to go into hospital and Diane accepted that her parents were no longer safe in their own home. They went to visit local care homes and found one which, although not high end, had a lovely atmosphere. Fortunately it could accommodate both parents.
Jean and Diane describe how dementia changed their parents but that “underneath they were still Mum and Dad”. They continued to bicker with each other, Dad played the mouth organ and Mum flirted with “anything in trousers”. Dad died a few years ago. They have told Mum that he is “in Scotland” as it would be too upsetting if she knew the truth, although she says he’s been away too long and is “in trouble” when he gets back. Mum is still in the care home today and Jean and Diane continue to visit on a regular basis.
Jean and Diane’s tips for coping when a parent has dementia
- People with dementia can still be happy, but in a different way. Loss of memory can be a blessing in disguise – for example they may not realise they aren’t well or in residential care (their Dad thought he was living in a lovely, free hotel!)
- Family support is key – look after each other
- Seeing the funny side is important. Laugh whenever you can – laughter is better than tears
- You may have your own strong feelings about what should happen but at the end of the day it’s about what’s best for your parents and how to keep them safe
- Focus on the present. Try not to worry about what will happen to them – or to you – in the future
Tips for coping when you don’t have a supportive family
Jean and Diane are obviously close – in the video you can see them finishing each other’s sentences and hear them talking about looking after each other in old age. They have supportive husbands and children. But they also say, “If I had to cope on my own, I’d probably have had a breakdown by now”.
So what happens if your family is at war about care for your elderly parents? Or if you have a complex relationship with one parent or the other. Or if your Mum or Dad becomes aggressive towards you, or doesn’t recognise you? In these circumstances, many family carers experience conflicting emotions and find it hard to be patient and loving.
Here are some tips that have helped others:
- Look after your own mental and physical health. Ultimately, if you aren’t well, you can’t look after anyone else
- Do whatever you can to get a complete break. Even 10 minutes sitting quietly and focusing on calm breathing can help
- Ask for help. Badger social services. You have a right to expect some support from others, even in a dysfunctional family. Try friends and neighbours too
- Consider life coaching for family carers (details below). My clients say what a release it is to be able offload feelings, talk honestly without being judged and make difficult decisions in a “safe space”
Whatever your situation, try to remember the good times you had with your parent in the past. And keep your sense of humour. People with dementia can say funny things. When I told my mother that my sister (aged 50) was coming to visit she said “Oh no, she’ll only mess the place up with her toys”! Jean and Diane were able to laugh about how their mother “nearly killed them” swinging a heavy ornament.
Finally, remember that this is a phase of your life that will pass. There is light at the end of the tunnel.
Dr Lesley Trenner is an Ageing Parent specialist with extensive qualifications and experience in life coaching. Lesley provides one-to-one help for people who are struggling to balance work and care, or cope with mid-life, family and career challenges. Sessions are available face-to-face (London) or on the phone. Email Lesley or call 07919 880 250 for a free introductory chat. You can also visit her Facebook page.
This article was published in September 2016.
If you found this article useful, you may like to read our other articles on families caring for loved ones with dementia. Just search the site for dementia to find them all, including:
- Balancing dementia care with a full-time job
- Juggling work, family and dementia care – a real-life story
You can also find more of Lesley’s wisdom in her column “Ask Lesley”