Posted by: ayrshirehealth | September 3, 2014

Happily confused? by @k8macdonald

Pigeon holed

You ask someone, what the first thing they think of when they hear the word Dementia and most would probably say ‘memory loss’, this is correct of course, but scratch at the surface, take time to look a little closer and it’s the tip of the iceberg.Iceberg head

This is a snapshot of my experience of caring for my 82 year old Gran, before she went into residential care.

It’s easy for people to label someone with the dementia tag and they then slot nicely into that pigeon hole, but Gran is not dementia and dementia is not Gran…..Govan

….born in Govan in the 1930s, worked in the Labour Exchange at Glasgow City Council, married, moved to the coast, became a mum, graduated and worked as a teacher for many years, moved to the Middle East, graduated again in her 60s, a trained counsellor, founder of a children’s Charity in the Middle East – a formidable woman.

A formidable woman

Gran now has Frontotemprel lobe Dementia and I am witnessing the steady decline of the formidable woman, who feared nothing and had always lived her life her way. Roller coasterThis is the most challenging part so far for Gran, but also for Mum and I who have been on a roller coaster journey over the past 5 years.

At the moment we are hoping that Gran’s illness progresses from the mental torture she is currently in too….well….being “happily confused” as one of the nurses told Mum and I recently.

Can we ever be happily confused?

Directions 2When I pick Gran up from her lovely care home, we negotiate the introductions to staff that I get every time, the “See that man in the chair, that’s Dr So-in-So, he was seemingly very well known”, the “how’s my face, have I got it on?”, the winter coat going on, even though it is warm outside, the hiding of the biscuits in her room, “because people steal things here”, the opening of the purse, the closing of the purse, the opening of the purse, the closing of the purse

….we finally arrive at the lift, I always forget the code to open the doors, I traipse back to the nurses office, lift doors open, I punch in the code to get out of the front door and…. daylight, fresh air, Gran inhales, her eyes adjust to the brightness.

“Where are we going?”

“It’s Dobbies Gran, is that ok?”

“Yes I don’t mind where we go, it’s just nice to be out and about….I’ve decided that when I leave the care home, I’m going to come back on a voluntary basis and join the staff team….at the end of the day, I’ve got my own life to be getting on with.”

“Where are we going?”

“Gran, we’re going to Dobbies”

“Kate”

“Yes, Gran?”Tea and cake

“I fancy Dobbies, can we go?”

“Yes, Gran, of course”

Mr Dementia

HALT, STOP, WAIT A MINUTE, this is the easy stuff with Gran, the tea and cake outings, but it’s always just a thought away that Mr Dementia has stolen all of Gran’s short term memory and made a run for it.

I have illustrated below a typical week before full time care was a reality and shows how bad things got for Gran and the challenges I faced trying to cope with a lady who had (and still does) have zero insight into her illness;

loneliness / nightmares / anger / frustration / bitterness / a safe for meds / refusing to shower / £1200 a month phone bills / falls / lots of chocolate biscuits / social work visits / 4 carers a day / fluid refusal / “I want to die” / “leave me alone, I’m fine” / not getting out of bed / “I’m moving abroad and you can’t stop me / Memory Clinic appointments / befrienders / removal of driving license / losing money / tears / fall-outs / getting into a stranger’s car / arguments / more tears / feeling trapped

“Kate, I fancy going to that place with the goldfish and the tiffin…what’s it called”?

“It’s Dobbies Gran and that’s us just arriving”

This week’s blog was by @k8macdonald (Kate MacDonald) who is Personal Assistant to Professor Fiona McQueen, Nurse Director, NHS Ayrshire and Arran

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Responses

  1. A very brave and moving piece of writing, from the heart. I hope everyone reading this takes time to reflect on how many more unsung heroes there are, out there, taking care of and loving a relative who has a diagnosis of dementia …… thank you for sharing your experience.

    • Dear namcyandshelagh, thank you for your reply at 8.29am (hot off the press!) to my first ever Blog.

      When you live the life of being a carer on top of your day to day, you don’t see yourself as ‘brave’ as you just get on with it. I know from the feedback I have received that there are lots of us living the carer role and so I think we should all stand up and give ourselves a ‘well done’ and pass the tissues round when we need them.

      Thank you. 🙂

  2. Oh Kate what an amazing woman your Gran must be, I am in awe of her acheivements in an age when it was not so easy for women to be at the forefront of so many things. Hold onto your love for her.

    • Hi Hazel, thank you for your reply. Gran was and still is (in her own way) an amazing women and has been pushing boundaries her whole life. She would be delighted with your reply!

  3. A Terrible disease so distressing for the family to watch. My Gran had it too. Great blog. Take care of yourself and your Mum too!!

    • Thank you Angela for your reply, I have taken heart from your reply, you obviously know what it’s like, having been there with your Gran. I am so lucky to have such a great Mum, we have been a good support to each other through the hard times with Gran.

  4. Beautifully written. I too am on the Dementia journey with my lovely Dad who has vascular dementia. He is a shadow of the strong, intelligent and proud man he was, but every now and again we get a glimpse of that man. That’s what keeps us all going.
    Your gran is fortunate to have you and your mum at her side through this. Thankyou for your blog.

    • Dear Margaret, thank you for your reply.

      It’s the holding onto the glimpses that is the key, hang in there, you are doing a great job.

      Kate

  5. What a very touching and moving account. It gives me more of an insight into what my aunt coped with in looking after my Grannie. Sounds like an awesome lady.

    • Thank you Margarette, I am glad you enjoyed my account, it came from the heart and yes Gran is an awesome lady.

  6. Oh kate, you moved me to tears as i can just picture you and your dearly loved Gran on that visit.

    I have a very good friend who sadly recently lost her Mum who had Dementia and suffered what you are suffering right now. I hope there is some solice in knowing that your Gran is not suffering, she is happy, it’s you and your Mum and those who love her who are suffering.

    You keep your chin up and when you feel sad think of your lovely children Kate.

    I am sending you big hugs x Karrie

    • HI karrie

      I have been so touched by the impact my blog has had on people, I suppose when people talk of their own personal experiences and open themselves up, people tune into that and put themselves into the situation.

      I have not thought of the suffering side of things, the way you expressed, but you are right, as Gran has no insight into the illness, she will never fully have to absorb the impact of it.

      Thanks again Karrie.

    • Kate, I think everyone is touched by the fact that your are a real person experiencing real life. Sometime we can all become desensitised to real suffering due to the nature of the work we are involved in, otherwise we would be in tears evey day. Thank you for reminding me of this. Take care and enjoy your Gran whilst you can.

  7. It’s all too easy for the person to get ‘lost’ within the reality that is demetia. A book worth reading is Sally Magnuson’s account of her family’s journey with her mum’s dementia – Where Memories Go. Dementia is such a social issue now too aswell as a personal and medical one

    • Thanks you for the book suggestion Marion, I will go and buy it and share it with my Mum as well.

      Thank you for taking the time to post.

  8. Kate, what a beautiful and eloquent piece dedicated to your gran, written with love, compassionate and understanding. Your gran has been and will always be a formidable woman, as are you, her granddaughter who has so movingly reminded me here to see the person, not the diagnosis . Love and light to you and your gran and may you have many more happy visits to the store with goldfish & tiffins.

    • Dear Joanne, what a lovely reply, thank you, I will accept the formidable tag, you gave me!

      It is so easy to focus on the diagnosis and then you loose the person, but as I said in my blog “Gran is not dementia and dementia is not Gran”.

      Yes, there will be many more trips to the goldfish and tiffin establishments!

  9. Fantastic blog Kate and so moving. Took me back to my daily ‘struggles’ and laughs with my dad before he passed away (he too had the same type of demntia). Every description touch a wee heart string …. the only thing added to my dads list was the development of the inappropriate behaviour!!! (from a man who previously had so much pride he had to iron a crease in his jeans before going out to cut the grass (and sporiting a shirt and tie too!). Your gran sounds like one amazing lady. Thanks for this … it really was a moving read x

    • HI Jackie

      Your reply made me smile, as I can just imagine your dad cutting the grass, looking immaculate. If Gran was ever to cut grass (not likely though!) I can imagine she would be in her flowing skirt, court shoes, chiffon blouse and painted nails – it was definately a generational thing to never have a hair out of place. Gran still gets her hair done every week and always ‘puts her face on’.

      Thank you for your encouragement 🙂

  10. That was a lovely blog Kate. Thanks for sharing your Grans story. I am sure this will resonate with a lot of people. Well done. Ken D

    • Hi Kate, your story certainly resonated with our experience of supporting our wonderful mum over the past several years since she was diagnosed with dementia. It is a difficult illness, particularly for those closest to the person as they long for how things used to be. I wanted to encourage you that despite all the challenges “happily confused” is moslty our experience of how our mum is and that’s a relief. Just wanted to say thanks to those of you who supported our family… you know who you are 🙂

    • Thank you so much for replying, it means a lot to know that other people are on the same journey and experience the same ups and downs of coping with a loved one with this terrible illness.

  11. Kate, I love your Gran (even though I obviously don’t know her) and I love that you continue to spend time with her and ensure she continues to have quality outings with you. So many people don’t have that.Thank you for sharing this with us.

    • Dear Fiona, the outstings will never stop, although I may have to curtail my extravagent choices of cake each time!

      Gran was always very sociable, in fact she was never in, I am sure she would have loved a chat with you, in fact still would!!

  12. Thank you for sharing this Kate. As others have said, it is a challenging journey. If it is of any consolation, not having insight may actually be a benefit as your Gran may not experience some of the emotional pain that can come when someone realises what is happening, knows what the future is likely to be and is depressed about it. I hope that you and your Mum are being appreciated for all you do in giving your Gran happy experiences that she can enjoy in that moment.

    • Dear Ruth, thank you for your lovely words, you are right in all you say.

      Funnily enough as Gran’s illness has progressed, she has become more appreciate of the ‘little things’ in life and will express that, which is something she never used to do

      Mum and I keep each other going, through the ups and downs and for that I will always be grateful.

  13. Thank you for letting us read about your gran Kate. It’s too easy for people to forget the “person” behind the illness and what a proud and dignified woman she seems. Patience, humour and love are evident in your blog. I hope my granddaughters grow up to be so kind and caring as you.

    • Dear Linda, “patience, humour and love” are actually the three vital cogs in the wheel, when you have a loved one diagnosed with dementia. Not always required in equal measure each visit and sometimes, after being asked the same question 5 times, patience is needed in abundance, sometimes, when Gran recalls a funny story from her past and we have a giggle, humour is número uno and finally, when Gran is low and dis-spirited, it’s love that sees us through. Thank you so much for posting.

  14. Hi Kate!, What a lovely story about an awful subject. You have a wee talent for writing and it is so clealry from the heart. I had a lump in my throat by the end of it and reminded me of ma wee granny way back when the understanding was so much less than it is today. Well done you for being so brave and so eloquent. John Callaghan

    • Hi John, thank you for your kind words. I really enjoyed committing my journey to paper, it has turned out to be a therapeutic process. Thank you for saying I am brave and eloquent, not words that automatically I link to myself, but I will accept them happily, John!

      Thanks again 🙂

  15. Crying at my desk after reading this blog. So very touching

    • Hi Patricia, thank you for your comment, my blog is a mix of sad and happy sprinkled with a touch of humour, which sums up my journey with Gran.

      Kate

  16. Heartbreaking and yet such a powerful real experience.

  17. Kate, thank you for sharing this and reminding everyone that we must always remember the person and not just see dementia

  18. Wow I am overwhelmed by the amount of comments that I have read so far in response to you sharing your experiences of caring for your Gran. It is so important that care providers listen and read such comments to gain a real insight to the worries and struggles that families have. A big thanks for this.


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