Today is the 4th anniversary of Mum’s death. It is also 3 years since Keeping Mum was published. I have decided that I shall not be keeping up this site any more because I have too many other things to do (books to publish, speeches to make, dogs to walk, walks to take!). I hope there is enough on here to keep any new visitor occupied for a while!
If you are a carer, however, and need help I am still here for you. Please email me on marianne.talbot@conted.co.uk .
I shall also be keeping up my Twitter feed and Facebook page, because there is often news to relate, so please befriend me on Facebook or follow me on Twitter. I look forward to being in touch with you!
When my mum was diagnosed with Alzheimer’s disease, I decided I couldn’t put her into a care home. Instead, for five years, I looked after her in my own home. My book, Keeping Mum, is a chronicle of the fears and frustrations, the love and the laughter, and the tears and the traumas of caring for someone with dementia.
Marianne Talbot
Please come and join me on Facebook and Twitter and share your experiences of working with and caring for people with dementia.
Please watch my short introduction to Keeping Mum: Caring for Someone with Dementia below
My mother, who is a very fit 83, has lived with her partner for 12 years, but they have been in a relationship for 42 years. He was married. Lived in Scotland, my mother London. They worked in the same industry & however wrong, fell in love, after my father killed himself & he helped my mother through the early days, then years after his death. Obviously his wife & 3 children, now all in Theo 40′s, knew nothing, even though they travelled on conferences each year, he’d stay with us in London every few months & he never failed to ring my mother, every night at 10pm exactly, wherever they were. Sadly about 15 yrs ago, his wife died & then eventually he moved in with my mum. Last year as he became more forgetful, Drs test proved he had dimentia – a devastating blow, but one my mum & he dealt with. His eldest son offered to take a look at his finances, as he kept losing cheque books etc – the end result – he signed over financial power of attorney to his 3 sons, which seemed sensible. Three years ago he had s massive heart attack, but recovered. However, at 84 & quite low due to lack of energy etc, he was frail in physique & forgetful – but similar in most ways. My num had to go into hospital for a week to have a new knee fitted & it was decided that he’d stay with his eldest son for two wks while she recovered. Promises were made of visits to my mums – but sadly, two days after he went with his son, he was put into a care home & my mother, their friends & my sister & I have all been refused contact by his family. Told by them & care home that we can’t even talk to him or even write. I did sneak in once & my husband has managed to get in to see him – he still maintains, as ever, that he’s coming home soon & he loves my mother – but obviously, as they’ve said – he will forget us soon & my mother has to forget him! Pretty impossible & so sad. His memory is poor & he doesn’t seem to realise time – or how long he’s been there – but he isn’t bad enough yet, to be in a home & his wishes & rights are being ignored. Is this legal? Is there anything we can do?? I’m sorry for the long txt but it’s a complicated story!
Many thanks
Juliet Leche
Dear Juliet
I am sorry to have taken so long to reply. I no longer visit the site regularly, though I have said that anyone is welsome to email me.
I am so sorry to hear about your Step-Dad. I bet his dementia was a devastating blow. I am so glad he and your Mum had twelve good years together before it started (and the rest, but that must have been so frustrating too).
I can’t believe the situatoion in whch you have all found yourselves. How terrible for you. How especially terrible for your MUm. Is there no chance you can sneak your Mum in to him? This is a completely new probl;em to me, and I can’t imagine how I would feel.
I also am totally at sea about what to recommend. I do suggest you contact Age Uk and/or CarersUK to see if they could recommend anything.
I do hope you can do something – I feel for your poor Mum. Let me know what happens.
Marianne
You’re site is a mine of support and inspiration, thanks for doing it – I’ve just ordered your book and look forward to it arriving. I look after my mum from a distance and am exploring ‘keeping’ her
Dear Collette, I am glad you are enjoying the site. Sorry to have not replied for so long, but I no longer keep it up regularly. I hope you find the book helpful! Marianne
Dear Marianne,
I too have just finished reading your book. My ‘piglet’ has vascular dementia and at present is okay in warden assisted housing, with local authority carers 3 times a day, with me on the bedtime visit.
I so recognise some of your frustrations in my limited time of caring, thank you for sharing your experiences it has helped in many ways.
I wrote a brief blog on mum and put in care plan booklet to advise visiting carers as they seemed to miss the point of mum having dementia and thought she was just confused. (http://robstickunwired.wordpress.com/2012/11/29/oh-mother/)
Am not sure if you have the links from your book on this site, but would be very useful. Some links have been changed though and could do with updating (sorry).
Regards
Dear Rob,
I am sorry to hear about your piglet. I am very glad though that the book has helped. I understand about professional carers missing the point about dementia. It can be so frustrating can’t it?
Do you mean some links on this site need updating? I am sure you are right. I work full time, and have to do this around the edges. I am also, to tell the truth, not terribly tech-savvy!
I hope you get more visitors to your blog as a result of the link’s being here.
Marianne
I really found this amazing article , “Keeping Mum”, exceptionally pleasurable
plus the post was in fact a wonderful read. Thanks,Camille
Thanks for taking the trouble to write Camille.
Just what exactly seriously inspired you to write
“Keeping Mum”? Iseriously enjoyed reading the blog post!
Thanks for your time -Sherrie
I am glad you enjoyed it Sherrie. Can’t say I was ‘inspired’ so much as driven by desperation!
Dear Marianne,
I have just finished reading your book and it has been a blessing to be able to recognise someone else in the same situation you find yourself. I laughed and I cried.
My mother was diagnosed with vascular degeneration about 18 months ago. In honesty I think she had begun to decline a year before that but she was insistent that she could manage on her own. Once diagnosed things seemed to suddenly be worse, or maybe the diagnosis made me realise how bad things were.
She still lives on her own (I live 30miles away so not too far) and I have 3 regular carers that have been coming in 4 times a day for the past year. They are marvellous and I enourage them to take her out for coffee and walk and drives should they wish. I visit each week sometimes for a day sometimes for two but I do work and it can be difficult. I know it will not be long before I need to look at something more long term, possibly with us although our home isn’t really suitable for her and I would really need someone to live in. I do know at this stage I don’t want her going in to a home. I feel tremendous guilt that I don’t have her living with us (that is my husband and I, married 18 months) and my husband is marvellous and supportive. At present she is very happy in her own home and much more relaxed than when she comes to stay with us, but how long for I don’t know.
I have LPA but was concerned to learn that I should be paying the carers (they are private) NI etc. At present I just make a bank payment each week for the hours they do. Obviously I have a book which they fill in each day with their hours, what has happened, how Mum is and what she has eaten but there are no other records except the bank statement. All receipts are put in to the book also. Mum receives Attendance Allowance but the council said they have closed the file on her as we have private carers.
I am pretty worried that I am going to have to back date NI payments etc. At present they work out the hours between themselves and they are all so lovely to Mum. She is healthy and happy and safe and at present that seems to be the most important thing to me.
Am I in danger of breaking the law?
Dear Marissa,
I am very glad the book has been of help to you.
I am sorry to hear about your Mum. I think it qwuite likely that a diagnosis jogged you out of your denial. It is very easy to deny the fact that things are getting bad.
That’s a very difficult decision you have to make. She will almost certainly have to go into a home at some point and you probably need to take that on board as soon as possible. This does not mean she needs to go into a home straight away but think very carefully before you bring her to live with you; especially with a marriage of only 18 months. I am extremely glad to hear your husband is supportive. I am very glad Mum came to live with me, but I was always glad I hadn’t had to involve anyone else in caring for her.
It sounds as if you might be in danger of greaking the law. Worse, thougn, you might be doing down your carers who will need their NI payments to get their pensions etc. I suggest that you ring the Carers’ Uk helpline (0808 808 7777). I’m sure they’ll be able to help you. You might also try AgeUk (0800 169 6565 ) It is sad but true that self-funding people often get the worst advice because they do not have social services to guide them.
I am very pleased that things are currently working out – good carers are crucial. It is lovely to hear that your Mum is the most important thing!
Good luck and let me know how you get on.
Marianne
My spouse and I absolutely love your blog and find almost all of your post’s to be precisely what I’m looking for.
Do you offer guest writers to write content available for you?
I wouldn’t mind publishing a post or elaborating on a lot of the subjects you write about here. Again, awesome web site!
How nice of you to write and tell me! Thank you. I am afraid I don’t have guest writers, but you are welcome to write a longer letter. Marianne
Hi Marianne, I have just finished reading your book, ” Keeping Mum” and would like to say how much I enjoyed it, it is so interesting and very informative. My 82 year old Mother was diagnosed with Alzheimers in March this year, she is very much in denial but for now she is coping reasonably well at home. The information and references in your book and your website will be very useful for me in the future, I would like to Thank you for sharing your experiences. Happy Christmas and a Happy New Year, Best Wishes, Judith Lindley.
Dear Judith,
I am very glad you enjoyed the book. I am very sorry to hear about your Mum, but glad she is currently coping. I am sorry I am reading this only now but I did have a happyChristmas and hope you and your Mum did too. Have you looked at the checklists in the book – they might be particularly useful.
Good luck,
Marianne
Hello Marianne, I have just finished your book, I laughed and cried and got very angry in turns, on your behalf, on my behalf and on behalf of the 100+ carers that we at Barnsley Independent Alzheimer’s and Dementia Support (BIADS) are supporting at the moment. Two of our ‘daughter’ carers are reading it now and I have been recommending it to everyone who will listen since I started reading it.
You could have been recounting many of my experiences caring for my Mum long distance at the moment, experiences I had when I first got involved with dementia caring for my friend and neighbour seven years ago with early onset Alzheimer’s in her fifties. Certainly yours are the experiences of many of our carers here in Barnsley now.
Please visit our website http://www.biads.org.uk to find out about us, we formed 2 1/2 yrs ago after breaking away from The Alzheimer’s Society so that we could continue to help our local people affected by dementia without the constraints of a national charity. As former carers and carers ourselves everything we do is to help support our carers so that they can live well with their loved ones for as long as they are able. I wish we could have you here running our carer support group and helping me to develop a ‘training’ package for our carers based on the realities as we know them. I have been lost as to where to start until I read your book, now I just wish I had the time and funding to get stuck in straight away. So many ideas, so little time.
We (carers) are experts of our own experience of dementia and yet have so much in common. Talking to our Keeping in Touch Group (former carers) last month we were saying if only we had known then what we know now……..hindsight eh.
I’d better sign off before I put you to sleep with my rantings. It was very empowering to read the book, it is in BIADS library but we may have to buy a lot more copies as everyone now wants to borrow it. If you are ever passing through Barnsley way please come visit us and meet our carers, maybe try circle dancing or Jabadao!
With many warm regards, Pam Evans
Dear Pam,
Thank you for taking the trouble to email! That’s a very impressive wesbite you have. I am so glad you enjoyed the book, and that your carers are finding it useful.
I am interested in your idea of a ‘training package’. If it could be online I should, in principle, be happy to help. Every year I come to Sheffield to teach a course at the university. Perhaps next year (November) we should arrange for me to come to give you a talk? I should be happy to do so.
Hindsight! Yes, I know exactly what you mean. That’s why I wrote the book. One knows so much more at the end of the journey when it isn’t needed, than one does at the beginning when it is!
Good luck with everything you are doing, and be in touch if the November idea might work out.
Marianne
Have you ever considered publishing an ebook or guest authoring on other sites?
I have a blog centered on the same information you discuss and
would love to have you share some stories/information. I know my viewers would appreciate your work.
If you are even remotely interested, feel free to send me an email.
Hi there,
You don’t tell me your blog site…? I am currently contemplating writing an ebook, but haven’t considered guest authoring (suspect I have too little time to write except for my own site!). But always willing to consider things.
Marianne
Excellent article. I absolutely appreciate this site.
Keep writing!
Hi there,
thank you! It is always nice to know that this work is appreciated!
Marianne
We want care our mother but we live in Bracknell and our mother live bromley and to move with mother area.
Will the council provide bigger acomadation for my 3 children and my mother too.
Dear Adam,
I am sorry to hear about your situation. Is there any chance you could mogve your mother to live with you? I found that worked for me (though I am not saying it was easy, as you’ll know if you have read the book).I do not know wether the council will provide bigger accommodation, but it is worth asking.
I suggest you get in touch with carersUK( http://www.carersuk.org/help-and-advice ) and ask them how to go about asking in such a way that you might get somewhere.
I wish you luck whatever you decide.
Marianne