My Dementia Experience – 6 ways to ease the journey

I thought this would be an easy thing to write since it’s from my own experience of caring for my Mom. It wasn’t. And I’ve avoided writing it for a while simply because it makes me feel sad to recall that time. But here goes.
A word of warning – before I start I want to mention those social media posts that periodically pop up giving us hollow words of advice about what to expect, supposedly written by the person with dementia. If you feel like sharing it, don’t. If you receive one, delete. Someone (who should have known better) posted one at a particularly difficult time for me and I now have a small doll of that person which I stick pins in. These posts are not helpful. It didn’t help me one bit to know that my mom’s ability to speak, walk, stand, smile and swallow would leave her and that she would have a hideous death – she didn’t by the way so ignore these thoughtless and uninformed, insincere and patronising messages – that is my whinge over with and now we’ll concentrate on some practical ways you can cope with your situation better.
Betty, my Mom, passed away with vascular dementia in July 2016. (I never called her Mom by the way; always Bet or Betty and my Dad was Billy). It’s difficult to say how long she’d had dementia as it doesn’t just appear overnight. But if I think back and remember some of the signs (which I missed at the time) I guess she’d had it around 8 years when she died.
I’m writing this for those of you who may have a loved one who either has some form of dementia already or you think it’s heading that way. My aim is to offer some tips I wish I’d have known at the beginning. It’s definitely not an exhaustive list and I’ve got no medical background and I’m pretty sure I’ll use the wrong words/phrases along the way but if you find something useful I’ll be happy. I’m just a daughter who tried to do her best and had love and support from lots of people.

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1. A different world – Betty’s GP (who was brilliant) gave me the best piece of advice which stuck with me and repeated inside my head many times, “Move into your Mom’s world”. He explained at the beginning, with great sensitivity, that keeping Bet content and safe was the priority and the best way to do that would be to imagine her world. So here are some examples:
a. Don’t contradict – if she told me “I don’t live here” I learnt to say, “I know, but it’s nice for a visit and it’s very posh, don’t you think?”
b. Learn to tell white lies – when I was leaving I’d say “right, I’m just popping to get us some cake, I’ll be back in about an hour, ok?”
c. Don’t give sad news – my Dad passed away 6 months before Bet moved into care and so her memory of him was still there to begin with. She’d ask where he was and I’d have to explain he’d died over and over again. Then my eyes were opened when I watched a TV programme which made me feel so stupid because it’s so obvious to me now that I shouldn’t have said that to her at all. To the person with dementia it’s like going through the same bereavement over and over again. Imagine that. Instead, I started to talk about Billy as if he was still alive. I’d say, “I bet he’s still in that bloody greenhouse” or “he’ll be up the High Street, chatting” – it worked every time until quite quickly that memory became another lost one and she stopped asking about him.
Of course, all of these things dawned on me over several years and I learnt them by talking to the carers and other professionals as well as reading and observing. It may not work for everyone but each one was a revelation for me.
2. Dignity – since no-one has ever come back from dementia to explain what it was like I always worked on the basis that whatever Bet’s likes and dislikes and standards were pre-dementia then we’d work hard to keep to that. So, she had her hair done every week, I gave her manicures and pedicures, sprayed her Chanel No 5, played Ella Fitzgerald, Nat King Cole and Peggy Lee, we watched Poirot and Miss Marple, she ate battenburg cake and garibaldi biscuits, drank Yorkshire tea and showered in Dove shower crème. The carers knew Bet had enjoyed dressing in nice clothes and so they made sure she looked co-ordinated, even matching her jewellery. When the time came for me to deal with Bet’s incontinence for the first time I went into melt down and sobbed my eyes out with the care team. Like guardian angels they made it all go away and whilst the situation arose many times going forward it was done with little fuss and great dignity and respect. And one of the few up sides of this vile disease is that Bet never realised anything about it.
3. Selfcare – never were family and close friends as important to me than then. And it was testament to Bet that I had support from both her life-long friend and her neighbour who went above and beyond the call of duty on many occasions.
Be kind to yourself. If you don’t get respite you won’t be able to ‘care’ properly. If people offer help, take it. If you need help, ask for it. Take a break as often as you can – you’ll never fully relax but you’ll re-charge your batteries. I only had one person ever say anything critical to me about going on holiday while Betty was ill. It hurt me very much because they said it from ignorance of my situation. I hadn’t got the energy to explain. I haven’t forgotten that but I’ve moved on from it now. There will be a few people who will surprise you and let you down. My advice? Move away and concentrate on the steadfast, reliable and trustworthy ones. You know who they are already.
4. Practical things:
a. Make the surroundings familiar with photos, perfume, cushions, music
b. As the eye sight weakens use red crockery which is seen easier and replace knife and fork with a spoon
c. Put the tv on an appropriate channel – Bet never watched soaps so why would I put her through it now!
d. Later on I got Betty a cuddly lion called George – she would spend hours rocking him to sleep and stroking his mane – it seemed to keep her happy and content and now George is safely tucked in bed in my spare room.
e. Cover or remove mirrors – I found this one out the hard way and again, it was so obvious. To the person with dementia their own reflection is like a stranger in the room. Imagine how frightening this must be. I kept finding Bet’s dressing gown hung over her bedroom mirror. I’d remove it and the next time I visited it was back again. Then she told me, secretly, that someone kept coming into her room at night and she was frightened. I was mortified. The mirror was removed. It sends me a bit cold just thinking about it now.
f. Say who you are when you arrive and every time you walk back into the room “hello Bet, it’s Sarah, your daughter”. Because even though I wanted to believe she recognised me I couldn’t be sure. And you’d be alarmed if a stranger suddenly appeared in your lounge, wouldn’t you?
g. Limit the number of visitors because lots of voices all at once becomes confusing and incoherent. Slow the speech down too and use simple language.
h. Make sure you use lots of facial expressions, touching hands, kneeling down to speak at eye level, a gentle voice.

5. The care team – this relationship is so important – I’ll be blogging about this separately in the future. Suffice to say they were my ‘rock’ and some are friends for life. If you do one thing at the start tell them all about your loved one. Write it down, email them a bio, tell them who is in the photos, introduce them to your visitors. The more they know, the better they will be able to provide the personal touch and have a nice rapport with your loved one. Do as much as you can to help them do their job well. I promise they will notice and appreciate the efforts you make.

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6. Appreciate every stage – I’ve found it so hard to explain this part so I thought I’d do it this way, with some examples.
I used to get impatient with Bet when she’d repeat the same phrases dozens of times in half an hour – as the disease progressed I’d have given anything just to hear the sound of her voice again, saying anything.
I got upset when Bet couldn’t walk without using a stick anymore – further down the line I would pray she could have just stood up again, unassisted let alone walk.
When she couldn’t remember my birthday anymore and I cried knowing I’d never get another card with her writing on it I wish I’d just focused on the fact she could still smile at me and knew my name.
And when she told people I was her Sister I should have looked on the bright side and thought “how lovely, she still knows we’re related”. I did learn to think that way after lots of tears.
When she constantly folded tissues and hid them everywhere I should have been glad it made her feel content. The time would come when I missed retrieving those tissues because it meant she couldn’t move her hands anymore. I still think of her whenever I buy my tissues.
And when she misjudged eating or spilt something I should have thought that at least she can still use her hands and arms and she’s still eating instead of being irritated by the cleaning I’d got to do.
My point is this, whatever you’re annoyed by or upset about there will come a time, further on, when you’ll wish you could go back to that time. Accept what stage you’re at and always look for the positives.
As I said to you at the beginning, since no-one has ever come back from dementia and thrown any light on what it is actually like I always, always assumed Bet knew who I was, could hear and understand what I was talking to her about and could sense how much she was loved.
Conclusion
At the heart of everything you do be patient, kind and caring – like you would look after a baby really.
And when it’s all over and you’ve done your best and this dreadful disease has taken its course you can look back and think you did everything you could to make the most of a bad situation.

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When I remember Betty now it’s not the frail person she grew into. I remember her as she was to me and all who knew her; always, always smiling, full of fun and words of wisdom and I thank God I had the privilege of being in her life for such a long time. She was and always will be my best friend, unconditionally and she’ll be with me every day of my life, I’m certain of that.

 

14 Comments

  1. Every relative and cater should read this wonderful/helpful blog . Brilliant down to earth advice xx Another amazing blog xx

  2. Well done,I worked in mental health and these comments would be valued there. I’ve already told my kids to go along with whatever I say even if it’s about my ex or pets long gone. I asked relatives to make photo albums to give insight into the person, some really good ones were given to us, far nicer than learning about them at their funeral. Very valuable read

    1. Thank you for taking the time to write Jennifer – I’ve been overwhelmed by the messages I’ve received. Which is why this subject is so important; it touches so many people. But with a little more understanding and insight improvements could definitely be made. I plan to write another blog about my experience with care professionals who, in my opinion, are the back-bone of the whole system. Thanks again.

  3. Very true words indeed. I never realised about the mirrors. The hiding of tissues made me smile. I miss her too very much. Even towards the end she would smile and look pleased to see me. She was simply the best. Gone but never forgotten. Love you Grandma xxx

  4. This made me cry – we didn’t do a bad job with my mum (who died in 2014), but this would have helped. Also, we didn’t recognise the symptoms early enough ~ she hid them well! Thank you xx

    1. Kate, I’m so sorry to hear that you also lost your mum. Please feel free to share the blog with anyone else you think it may help. I’m no expert but I’d like to think the love I had for my mom was kind of perfect. I’m sure you have lots and lots of happy times to recall – we all do the best we can at the time and hindsight is a wonderful thing. Best wishes and thank you for getting in touch x

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