Saturday, 4 April 2015

Denying Degeneration. #atozchallenge - Care for the Carers

Two days after her 73rd birthday my Mum took her final breath. She had Alzheimers and Motor neurone disease. For her final 3 months I was her main carer. A privilege I am grateful for and will cherish forever. This years #atozchallenge theme will focus on being a carer / care-giver.



Remember to care for the carers.  


Denying Degeneration




One of the symptoms of Alzheimers/Dementia can be denial, it is also a defence mechanism. 


Mum didn't know what Motor Neurone Disease (MND) was. Dad waited till after she died to find out. 

I tried to inform all of their friends that she was dying. Explaining MND wasn't as easy. They just told everyone she had bad knees.

Every Monday my parents had lunch at an Italian pension club. In her final months Mum couldn't walk far without assistance, so each week we arrived a bit earlier to park near the front door. 

Once inside, her dignity and strength kicked in and she'd march across the room to her table. I walked beside her offering balance with a discreet touch. 

When I tried to pack her walking frame or wheelchair into the car she would protest and refuse to use it. It was easier not to bother. 

The final lunch for the year she had no choice. The only strength left in her legs was her pride, and I couldn't keep my promise of never letting her fall if she didn't do it my way. It was either stay home or use the walking frame. 

We got there two and half hours early so no-one would see her arrive. When she spotted a few of the old men playing cards she bowed her head and covered her face with her hand. Once seated she made me hide the walker. 

By the end of lunch she was exhausted. The room was still packed with 100 or so people. It was time to leave which meant going public with her mobility aid. She tried to deny needing it and wished for invisibility.

Words of support, a few sighs and some gasps escaped from the mouths of people nearby when I began to help her up. The surrounding tables started to say their goodbye's, she got lots of kisses and well wishes.

As I slowly wheeled her across the room people began shouting out  season's greetings to her. She smiled and tried to hold her head high.

In the distance someone started clapping. Soon the whole room broke out in cheers, a few sang out their farewells. People started surrounding her and following us out. They knew. 

Confused at first, she nodded and waved back. As the cheers got louder and longer she stopped feeling embarrassed, and smiled like a movie star. 

I didn't know where to look. I tried to smile and laugh. I turned my face away from her and covered my eyes with my hand. I was just so proud of her... and breaking.

The first lunch for the new year was scheduled for February. I knew she knew, they knew she wouldn't make it. Yet somehow so many people didn't believe it. 

***

A lot of the club members couldn't make it to her funeral, and offered their apologies at the first lunch back. I reassured them all there was no need to feel sorry. The farewell they gave her was perfect. It was filled with joy and best of all it happened while she was still alive to enjoy it. 


***

My parents are undeniably private people. I often wondered if I was doing the right thing by telling everyone she was dying.  

I did it for her, so her friends could tell her how much they loved her, I also did it for them and me. Witnessing other peoples love for her bought me so much joy. And If everyone else knew she was dying than I couldn't deny what was happening to her either. 


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14 comments:

  1. Well, this is so poignant Ida, thank you for sharing it with us. I can imagine her smiling like a movie star!

    It is easier to deny degeneration of anything; it takes brave soul to face the truth - and tell it.

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    1. Thanks Susan, I told her I'd share some of our stories and write about how to approach palliative care in the home. The truth can be hard to face, but living with lies and false hope can be torture.

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  2. Poignant indeed... but I think it did good.

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  3. Hi Ida - it sounds as though you absolutely made the right decision. And what a wonderful story ... so amazing to have that as part of your love for your mother, and to see the many who loved her too ... I'm not surprised your Dad didn't want to know .. but our ends are so difficult .. with thoughts - Hilary

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    1. His denial was quite charming at times and devastating too. I'm proud it is a part of her story.

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  4. What a wonderful story. How beautiful to have her moment of shame turn into something so affirming.

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    1. Spot on Susan. That was how it felt, from shame to joy in an instant.

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  5. Ida, I just got your comment about rereading my D post... Iread this one several times because it made me so teary... it is sooooo lovely... I gave it to my mom...she is the only one of her 9 sibs without Alzheimer's .... She is the subject of a research study...now that she is 86 she is getting forgetful but certainly within the norm for her age. Lucky us!

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    1. haha too all the re-reading (as if there isn't enough to read at this time of year.) You and your Ma are indeed lucky. What a fascinating case study, the only 1 out of 9... I can't even imagine how pleased with herself and how sad for siblings she must feel all at the same time.

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  6. Hello there.
    It's sad when we lose our dear loved ones to sickness, ill-health and eventually death. The Bible can be a great source of comfort during such difficult times with the promises found at Isaiah 25:8; Acts 24:15 and Revelation 21:3-5. Wishing you the best.

    Entrepreneurial Goddess

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    1. Thanks for well wishes and sharing E.G. - If 'no death' means the dead live on in our hearts than I can see that as a source of comfort.

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  7. What a lovely story Ida. I am so glad that everyone was able to express their love that way.

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  8. This was so poignant. Smiling like a brave lady... I can so imagine that. Kudos to her for been brave at that moment.

    P.S. How are you been? Long time...

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    1. Heello dear. I love this time of year for the catch ups - I will never forget that smile. I'm ok - looking forward to checking what you have been up to.

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Feedback and your own stories are welcome.