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My mum, Jill and… something exotic!

My mum, Jill and… something exotic!

At a recent two day dementia workshop organised jointly by Dementia Oxfordshire and University of Warwick, a number of carers were asked if they could spend a few minutes describing their experience of caring for someone with dementia. 

One carer, Debbie, decided to write a letter about caring for her mum and read it to the event audience. We now have her permission to share it with you plus a song she wrote about her experience.

 

Good afternoon, everyone.

I’m Debbie and have been asked to speak from my viewpoint as a carer to my mum, Jill, who had mixed dementia from the age of 76 to 90.

In the fourteen years of caring, I saw her go from a beautiful, vivacious, kind, clever, well-read, polite but outspoken lady who was a great cook, fabulous seamstress and amazing knitter, to a bedbound soul who watched TV all day and night (when she wouldn’t allow me to switch it off as she was in the middle of a very interesting programme at 2am!).

Mum never lost her sense of humour or her ability to do crossword puzzles and answer quiz questions on TV shows. She was prone to commenting on the hideous dress the weather girl was wearing or she would remark loudly how she didn’t think much of the newsreader’s hairstyle today!

Being a carer to mum, Jill Foster, diagnosed with dementia.

She adored Doc Martin, Inspector Morse, Columbo, Heartbeat, and Agatha Christie’s Poirot. I can’t tell you how many times she rewatched the same episodes and yet each time they were new to her.

She was a huge fan of Ben Fogle, so it was always a highlight if he was on. I would peruse the TV magazine with her and announce,

     “Ben’s on tonight mum!”

     “Ooo yes, we love him, don’t we?”

It’s true we both loved Ben. Then I would ask her what she fancied for her lunch and she would always say,

     “Oh, I don’t know.”

And then,

     “Get me something exotic.”

 Or,

     “Surprise me.”

I’d cycle out and buy some lunch, cook it, present it on a tray, sit her up in bed, pop a cloth around her to catch the spills. She’d have a few mouthfuls and announce,

     “I’m not really hungry. I don’t have much of an appetite. You don’t when you are lying around all day.”

I’d try to encourage her to eat a bit more, but she would cast it aside.

Two minutes later.

     “What we got for pudding, then?” mum would ask. “Something nice?” she would say with a grin and then, “Get me something exotic!”

I’d go back downstairs and bring up the cream cakes. This was the lady that two minutes earlier had no appetite, yet she would polish off 2 or 3 cream cakes if I was silly enough to leave them within her reach. Many a time I’d go back downstairs to make us a cuppa and come back to enjoy my cake, which had miraculously disappeared!

I think dementia causes the sufferer to crave lots of sweet things.

It also causes the carer to go without!

Before mum was bedbound and when she could still stagger about, she would spend her day pottering in and out of her kitchen. Each time she would eat a jam tart until a pack of six was simply diminished to 6 silver foil cases abandoned on the work surface.

When I’d arrive and say,

     “Where have they all gone?”

She was adamant that it wasn’t her that had eaten them.

It was funny how before dementia struck her you wouldn’t hear her swear, yet once she had it, if she or anyone else was upset about anything she would simply say,

     “Oh, tell them to f off then.”

She used the f word almost with glee!

Her other catchphrase was,

     “Well, does it matter?”

When we had to take her to the memory clinic in Greenwich c. 2015, the professional lady sat opposite her and said,

     “Right, well you have dementia.”

     “Who says I have?”

     “Well, you have, as the tests prove it.”

     “Don’t be ridiculous, that’s rubbish, I’m normal!”

The lady was a bit taken aback at mum’s reaction and so she said,

     “Oh well, if I ever get it, I want to be like you, as you’re not at all bothered about it.”

Mum replied,

     “That’s because I haven’t got it.”

(She really believed she hadn’t and I was quite proud and amused at her attitude.)

Anyway, the lady obviously had to do her job and ploughed on,

     “Is it ok if I ask you a few questions then?”

 Mum nodded.

     “I suppose so.”

     “Do you know where you are?”

     “A hospital.”

     “Yes, and which floor are we on?”

     “Well, does it matter?”

Mum rolled her eyes at me.

     “Well, I guess not,” answered the lady.

My mum always put her point across very well.

I asked the professional quietly what was the next step and she said nothing now, you are on your own, there’s nothing more we can do to help. I was staggered as I thought I was going to get some helpful advice. I felt upset, angry, and abandoned. However, we went home and continued with humour and love, getting us through the years.

Mum never knew she had dementia, which could be a hindrance if she was in hospital without me there, as everyone assumed she didn’t have it and would address her as if her memory was fine. This led to pills not being taken and incorrect information about her medical history being given.

The other thing that always amused me was when I asked her if she needed any shopping. There was the standard reply from her basic shopping list of old.

     “Milk, butter, cooking fat, lard, flour, sugar, cheese, eggs, and bacon.”

It never changed except to add on,

     …”Oh, and something exotic!”

Caring for someone with dementia can be very wearing, sometimes sad, as the person you once knew is buried underneath a new and different personality.

Sometimes it is infuriating when they are adamant they haven’t moved something and then you find it in an unusual place.

But in general, I have found humour, love and kindness were the way to get through the days.

Being a carer to mum, Jill Foster, diagnosed with dementia.

 I have written a song in memory of my mum, Jill, and the journey we had together where our roles reversed and I had to look after her as she looked after me when I was a child.

I find writing poetry and music is a therapy for me to express how I feel.

I wrote the lyrics and then commissioned David Luke to write the music and perform it.

You can hear an audio recording of Debbie’s song ‘Hold On’  (lyrics by Debbie Reynoldson/music and performed by David Luke©) at the link below.

Thank you for listening.

 

Mum, Jill Foster

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6 thoughts on “My mum, Jill and… something exotic!”

  1. Debbie I really associate with this. Much of what you said I remember happening when my mum had dementia although very different from your dear mum. You write with sensitivity & insight about dementia. I imagine many a year will be shed reading this & also a giggle! We’ll done Debbie your mum had a wonderful, devoted daughter.

    Reply
  2. Beautiful ❤️
    I know Debbie and I saw how much she did for her Mum. And how painful it was at times!
    She kept going and was exhausted and frustrated at times, but she was always there . Looking for solutions problem solving and loving her Mum. I enjoyed meeting her Mum Jill and we had a few laughs!
    Let’s hope going forward we can make progress with treating this horrid disease.
    Love Helen xxx proud to be Deb’s friend!

    Reply
  3. Debbie a really nice read and shows how well you knew your mum and how you understood the place she was in mentally during the years she had dementia.
    My mum suffered with dementia for a number of years but since she was in South Africa we only saw her once every two years. In the beginning she knew who we were but got very confused. I remember when she was packing to go and stay with my brother and all she packed was the remote control for Her tv and her favourite mug! Luckily we were able to find some clothes before she went. We saw her 6 months before she passed away and I was pleased on one occasion when she said “Your my son” so there was some recognition. All the best

    Reply
  4. Lovely Debs,
    My Mum also had dementia, but sadly I saw her only 3 or 4 times in the last few years of her life as she was in NZ and though my visits were 6 weeks long at a time and seeing her daily I didn’t have Each time I saw her she had lost more of herself. That in itself was upsetting, but like you also amusing. Not just Mum but the other people in Mum’s home were quite funny. There are so many questions I would have liked to have asked. So many more conversations I would have liked to have had. But like you I had a happy childhood and my Mum was special. Hold onto the good times and memories. Feel pleased that you could give something back when she needed you most. Love your song. xxx

    Reply
  5. Debs this is so beautiful a lovely written piece and song,on you and yourmums journey with dementia your love and kindness and patience shines ~ she would be so proud pure love I felt it

    Reply
  6. Debs, you documented your journey with your mum so well for all your friends to share on fb and your humour always shone through. I feel you have prepared me for the eventuality if my mother ends up with dementia and I’m sharing your story with my daughter so she knows how I expect to be treated if I get it! You did a wonderful job caring for your mum and you should be very proud of yourself, as I’m sure she will be now, looking down from her heavenly place. Well done for summarising 14 years of care so beautifully here and for writing such a thoughtful song, simply beautiful. Now, I’m going to make a list of ‘exotic’ things so that, should I ever request it, my carers know what to get! Jill was very lucky to have you for her daughter. XX

    Reply

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