Wendy Mitchell author

Wendy's story (part three): 'It’s about being around to support, but not taking over.'

Following her dementia diagnosis in 2014, Wendy Mitchell has published a new book. We're delighted to share this account written by Sarah, Wendy's daughter.

Mum’s diagnosis of dementia has been devastating for me, as well as my mum. I never thought I’d be having to deal with this in my 30s.

However, this is the hand we’ve been dealt and I feel lucky that we are talking openly and honestly about the future, as I know not all families do.

Looking for support

A few months after Mum’s diagnosis, we realised there was no pathway or helpful service that seemed to be kicking into action. Mum ordered lots of information from Alzheimer’s Society online, and I did the same. Mum does not want me to be her carer - I may be a Nurse, but I am her daughter first and foremost - so I wanted information on how to help someone with dementia to live independently.

With all good intentions, I started off trying to put her coat on etc., which she quickly put a stop to! If I start doing things for her, she will lose the ability to do them herself. Now I try to take a step back: if she can do something, regardless of how long it takes, then she does it herself. If she needs my help, she will (usually!) ask for it. It’s about being around to support, but not taking over. And even more so, it’s about just ‘being with’ and making sure we do normal things and have fun!

Wendy with her daughters Gemma and Sarah
Wendy with her daughters, Gemma and Sarah

Power of attorney

Knowing mum’s wishes for when she ‘goes over the edge’, as she puts it, is so important. If we had not gone through the Power of Attorney for health and discovered mum’s wishes, I know I would have said yes to antibiotics if she got an infection. I would have said yes to anything to prolong her life because I can’t imagine life without her.

But I would have been making those decisions for me, not for mum. Once mum ‘goes over the edge’, she does not want to be here. It has taken me a long time to even begin to get my head around all of that.

Being flexible

I’m not talking about doing yoga or pilates. As well as the general deterioration of dementia, mum has good days and bad days. This means that I don’t quite know how she is going to be on any given day. I just have to go with the flow and take it one day at a time.

Sometimes I find that easy, but we all have good days and bad days of sorts. So, on good days we laugh a lot and things seem to happen smoothly. On bad days, we just get things done and wait for the next good day to come around! 

Quote from Wendy Mitchell's memoir

Read more by Wendy

Wendy's book 'Somebody I used to know' is available now from Alzheimer's Society's shop. You can also read her blog on living with dementia, 'Which Me Am I Today?'.

Buy Wendy's book Read Wendy's blog

5 comments

Add your own

I so wish I'd read this when my mum was ill, before she "went over the edge." Now I befriend a lady living with the early stages and I completely agree with all you say ... independence, enabling, supporting and most definitely not taking over, unless requested.

I also didn't know of any services that would automatically kick in - they are few and far between, but might be worth mentioning that my befriending is done under the auspices of the Alzheimer's Society - not really services I know, but my friend says it gives her a bit of independence without her daughter (who is wonderful, but is family with all that entails.) One thing my friend has said to me, often, is that she feels she can say anything to me as we don't have 'history.'

I have learned so much from Wendy's blog - it should be required reading for anyone affected by dementia - family and friends as well as the person themselves. So pleased to have made your acquaintance in the virtual world at least.

NOthing important to comment except that these sort of blogs and stories are of immense comfort to me. Wal is in early stages we are 80 and 87 but he comes from that generation of stiff upper lippers.

I have Vascular Dementia, im 66 now. Like your Mother I too have taken the choice of NO intervention. Including a D.N.R.
The Alzheimer's Society has really helped support my Son with my decision. I have shared your story with him and he nows sees that others too want to keep that control. Thankyou. Youve really opened my Sons eyes.
I wish your Mother Peace x

Husband Robert diagnosed with Alzeimiers and vascular dementia also has frontal lobe vacancy epilepsy and blind spot 1 - 1▪ 5 inches in diameter medcation Merbamtine 20mg daily and Diazepam bd I would be happy to recieve any information Thanks

Hello Dorothy. Thank you for getting in touch.

You might like to contact our Helpline if you're seeking information, support or advice on dementia: https://www.alzheimers.org.uk/info/20012/helpline Our online forum Talking Point is often found to be a useful resource for support and information: https://forum.alzheimers.org.uk

You may be interested in a service called Join Dementia Research. This helps people to take part in suitable dementia research studies and drug trials. When you sign up, you can put in some details and the service will find out whether there are any studies that are suitable for you or your husband to take part in. You can register on behalf of someone with dementia if it is in their best interests. If you’d like to talk more about the service, please call our helpline on 0300 222 11 22 and you can arrange a phone call with one of trained Join Dementia Research advisors who can tell you more about the service. You can find out more information at http://www.joindementiaresearch.org.uk

We also have a library of publications, booklets and factsheets that may be helpful: https://www.alzheimers.org.uk/info/20033/publications_and_factsheets

Leave a comment

Your email address will not be published. Required fields are marked with *

The content of this field is kept private and will not be shown publicly.