Keeping Mum: Caring for Someone with Dementia

Both my parents had dementia. Dad had stroke-induced (or vascular) dementia. Aged 80 he had a massive stroke whilst walking to the shops. His dementia happened in an instant. Mum had Alzheimer’s. Her mind fragmented over a number of years.

Mum and Dad on their wedding day

Mum and Dad on their wedding day

Dad didn’t have an enduring power of attorney (EPA). We couldn’t access his bank accounts until he had been made a ward of the Court of Protection. I became my Father’s ‘Receiver’ , meaning I ‘received’ his income and spent it for his benefit. But I had to do it all under the direction of the Court. A nightmare!

I am a firm advocate of for lasting powers of attorney (LPAs are the successor document to the EPA).

Mum aged 84

Mum aged 84

Mum developed Alzheimer’s in 1999, just before Dad died. Mum had an LPA, thank goodness but the question of her care was a major one. Having thought long and hard I brought her to live with me. At first we had a lovely time. But as you can imagine it became much harder.

Keeping Mum: Caring for Someone with Dementia

Keeping Mum: Caring for Someone with Dementia

In my book I describe the love and laughter, trails and tribulations of caring for someone with Alzheimer’s. I also offer lots of practical advice on property, money, social services and support.

Here is what Liz24 said about the book on Amazon:

“This book was amazing to read, all carers will relate to it. Marianne’s experiences resonate so true and she’s very brave in the issues she tackles head-on. Great job!”

You can learn more about the book and buy it here

18 Responses to Keeping Mum: Caring for Someone with Dementia

  1. Hello,
    I have just finished reading your book ‘Keeping Mum’. I found it very entertaining and witty, and I do appreciate that Alzheimer’s is a difficult subject.
    My mother had Alzheimer’s, she was diagnosed in 1996 and died in 2002. I lived 150 miles away and I did my best from afar, visiting when I could and dealing with the bureaucracy, guilt, worry etc. She eventually went into a special needs unit in a residential home after a short stay in hospital where they didn’t have a clue and she went downhill. From comparison with your book, my mother was quite badly affected by the disease to the point where I applied for CHC funding after her death. Having appealed to the local SHA, a subsequent review by an IRP and finally the Ombudsman, the process came to an end in 2014 with a judicial review the only other option which I clearly could not afford. The whole process was a total waste of time, no-one accepting any liability, insisting all the way through that my mother’s needs were purely social rather than health. So I have decided to put it all on a website, my-dementia.co.uk, warts and all. One positive thing that did come out of the review process was that I got a full copy of all my mother’s case notes…….and I was shocked to learn how little I had been told about my mother’s care from day 1. I am retired and I write websites for a hobby. The site is half finished and should be up and running in a couple of months. It will be quite different from other sites, it will tell it as it was and there is a lot to tell.

    • Marianne says:

      Hi Peter,

      I am sorry to hear your mother had Alzheimer’s I know only too well how difficult it is to care from a distance. I totally sympathise with the ghastliness of applying for CHC funding. I am sorry, but not in the slightest surprised to hear your tale. Do let me know when the website is up and running. I will give it whatever publicity I can.

      Marianne

  2. Julia Baldwin says:

    I have just finished reading this book. It made me laugh, cry and provoked much thought. Thank you Marianne for your helpful hints and tips.

    • Marianne says:

      Hi Julia,

      I am so glad you enjoyed the book – I am sorry you felt the need to read it – has someone close to you got Alzheimer’s?

      Marianne

  3. Janis Broadhurst says:

    I’m in the midst of reading your book and its brought back so many memories of looking after my mum. So many simaralities, long distance caring, having mum live with us, relationship with children, knowing the words to songs by heart to name a few.
    My lovely little mum is no longer around but each time I turn a page she’s here again, making me smile driving me bonkers and testing my patience but more than anything giving me experience to help others.
    I bought your book for a friend whose mum is in early stages of dementia and I know she’s going to appreciate every word you’ve written. Thank you so much for making me smile😊

    • Marianne says:

      Dear Janis,

      I am so glad the book is helping you to remember your Mum with a smile. That’s ho I remember my Mum now. All the traumas and tears of caring recede into the distance thank goodness. I do hope the book helps your friend.

      Marianne

  4. Rachel says:

    I think I need to read your book. I will buy it for my brothers as well…..we are going thru an extremely challenging time having a father with alzheimers. watching him fade away and watching my mother watch him fade away.

    • Marianne says:

      I am so sorry to hear about your father. I know how challenging it can be. Your mother is caring for him? Do they live close?

      • Rachel says:

        Hi..they live a short drive from me . My mother is not able to care for him as she is struggling with her own health challenges. We moved them to assisted living a year ago and now have someone staying with them to look after my father. As you know, it is heart breaking. I know he’s in there and I believe there must be a way for us to bring him back. I have just changed his diet and I hope it will help.
        It’s a very ugly disease.
        I look forward to reading your book and I thank you for responding to my post:)

      • Marianne says:

        Yes, I feel for your Mum – it must be hugely distressing for her. And for you and your brother. I am glad you live reasonably near. That helps. Also glad you have someone living in, that helps a lot. But it certainly doesn’t stop it being heart-breaking. Diet is very important, and so are other things to make the best of what is happening. But I am afraid that if you think there is a way to bring him back you will find yourself failing time after time. That isn’t good for you. Far better, I think, to glean whatever you can from the situation as it actually is. And there are good things to glean from it, as I hope I have made clear in my book – I hope it makes you laugh at times, wryly perhaps, but even so….

  5. Rachel says:

    He is becoming physical with his caregiver….pushed her twice. Now they want to sedate him even more…I think he is already on too many meds…likely a part of the problem. He had a heart attack in July and had declined dramatically since…again, probably because of all the new meds

    • Marianne says:

      Yes, that’s very difficult. It must be extremely difficult for your Mum. Have you visited any homes? The time might come (for your mother’s sake apart from anything else). At least in a home the meds wouldn’t be needed to keep people safe.

  6. Frances says:

    I’ve just finished reading your book – for sheer interest – before posting it off straight away to a friend who really has immediate need of it, I think. Thanks for writing so candidly and helpfully about so many aspects of being a carer/looking after a “piglet” (I love that acronym).

    What I want to ask, though, is what became of your website? When I type in http://www.keepingmum.org.uk I get a totally unexplained page of hints about selling a house, but no indication of how to get to other parts of the site which sound likely to be of much more use to my friend. Is it available under a different url?
    Thanks

    • Marianne says:

      Hi Frances,

      I am so sorry – I stopped updating the website ages ago, and presumably they have pulled it. I wrote a book a year in the three years following Mum’s death, and rather dropped some of the balls I had set spinning. I am glad you found the book helpful, and hope your friend does too. I am sorry she is in immediate need of it.

      Marianne

  7. Dear Marianne,

    Thank you so much for this book. I was beginning to feel isolated in the situation with my mum and looked for a book and found yours. It is such a big help, thank you. Mum still lives in her own home ten minutes drive from me but I feel completely responsible for her. I work from home part time but it is becoming a strain keeping that going. Recently life seems full of appointments with mum and form filling. I could do with getting together with others in the same situation but have very little spare time to do so. Your book helps me not to feel alone and that the way I feel you felt too.

    Thank you, Ruth

    • Marianne says:

      Hi Ruth, I am so glad the book has been helpful. It is good your Mum lives only ten minutes away (but I bet it sometimes feels like ten hours). Please feel free to use the ‘contact address on my website to be in touch directly – happy to be at the end of an email for screaming purposes (though have you tried CarersUk – they have a chat site where you’d be able to talk to active carers:http://www.carersuk.org/forum

      Marianne

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