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Five Important Steps Caring for Dementia Sufferers

What my experience with Dementia has taught me and what I wish I had known from the beginning.

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When my gran was first diagnosed with Dementia in 2018, I didn’t handle the diagnosis very well at all. I was irritated with family members who recognised her symptoms for what they were because I felt like they were slapping a label on her and putting her out to pasture.

Here was this fun, sociable, independent lady who was being told, ‘actually, you can’t live your life the way you want to anymore. We’re going to uproot your life, move you back to be closer to us and you’re just going to have to make your peace with it.’ – that’s how the scenario played out in my mind anyway.  I felt her anxiety and frustration pulse through my veins, and rather than face it head on I would shut down any conversations on the topic, desperate for it all to go away.

It wasn’t until the start of 2019 when the changes in her behaviour and her inability to do simple tasks could no longer be ignored that I had an epiphany.  I could continue to bury my head in the sand, or I could wise up and turn my attention and focus on how to help my gran maintain some semblance of independence and happiness for as long as possible.

It has been demanding, frustrating, fulfilling and full of love, sometimes even laughter, and it has struck me how much I have learned and what I wished I had known when we took the first intrepid steps on our Dementia journey.

Be Open to the Definition of Reality

My gran has been an absolute stickler for time in her later years. If we arranged to go out for lunch, she’d have her shoes and headscarf on 45 minutes before we were due to leave and would pace around the hallway getting more and more agitated that none of us shared the same sense of urgency to get ready.

As her Dementia began to take hold, it became obvious she was having difficulty understanding what day of the week or time of day it was. This would often result in phone calls at 3:00am asking where we were and who was coming to pick her up?! It didn’t matter that it was pitch dark outside, she was up and dressed and so should everyone else be!

When her hallucinations started that was a whole other ball game. One afternoon I spent 20 minutes debating with her that the cushion on her recliner chair was not in fact, her cousin Moira.  She was adamant it was and could not understand why I was being so awkward about it. 

I would find myself staring at the pattern of large poppies on the cushion, tilting my head to the side and squinting my eyes to try and see what it was about this object that resembled a face, but my attempts failed.  To me this was a cushion, plain and simple, it was a useful object that provided padding for our backs, that’s the reality of it.  But it wasn’t my gran’s reality, to her Moira continued to visit and although gran thought it was nice of her to call in, she was never sure what the point was when she never spoke.

Which leads me nicely on to my second topic…

Get Comfortable with Lying

The hallucinations were becoming more frequent and causing a lot of angst for gran.  She had started acting odd about going to the bathroom and I later discovered it was because a man was (allegedly) standing at the toilet door and making her feel uncomfortable.  Of course, I could not see this man, but clearly, he was becoming a nuisance to gran.  I started to ask her if she would like me to chase him off.  She would turn her head sharply towards me, eyebrows raised, and a look of sheer relief would wash over her face.  “Would you, please?”  she would respond. So, off I would go and tell the man to go home, we didn’t need him here.  She would follow me out to the hallway a few minutes later, tap me proudly on the back and all was well again.

As Dementia symptoms worsen, you’ll get used to the fact that once you’ve nailed a routine you don’t have long before it’s upended again, and you need to revisit your strategies. Eventually, chasing off the man didn’t work for us anymore, and I had to adapt until I found a response to placate her.

I started to tell her I could see the man too and she would relax. I would have this creeping sense of guilt about lying to her and I’d like to say it was purely down to the goodness of my heart and wanting her to feel less uncomfortable about going to the bathroom but that wouldn’t be entirely accurate. I had also said it because if I had to have the same repetitive conversation much longer, I might pull my own ears off!

Regardless of how cruel it had made me feel to be dishonest with her, the fact was that my little white lie had brought her some solace and she felt validated.

Be Creative Making Memories

I consider myself to be creative and try to put my creativity to use with the way I care for gran.  I see the benefits of making activities fun through her level of engagement and energy. 

We have been learning to play the ukulele and while I’m sitting playing her favourite tunes, gran sits with this beautiful baby pink ukulele on her lap just randomly strumming the strings and singing her songs, quite contented.  Even on days where she is finding it truly difficult to focus or string a sentence together it is incredible to see the shift in her consciousness when a familiar piece of music is played.

My next pursuit is to start a scrapbook that she can use to recall special events and times spent with loved ones.  We went through all her pictures together and I got to hear all about the stories behind those frozen moments in time which I intend to incorporate into the scrapbook.  My goal in creating this book is that gran will find comfort in seeing old familiar faces and when we get to the stage where she requires 24 hour assisted care, her caregivers will have a way to get to know the real person behind the Dementia.   

If whipping out a ukulele or a glue stick isn’t your thing then perhaps consider doing something simpler like using your phone camera to film conversations you have while you’re reminiscing, these are great little treasures to look back on when you need a little reminder of happier times.

Build a Strong Support Network

When I started documenting our journey on Instagram and sharing my experiences, I connected with many inspirational caregivers from all over the world.  I love the fact that we are all rooting for one another and celebrate the strength and commitment we all have to show up each day and do the best for those we love.

That also extends to those that are silently propping us up in the background.

Whether it be a partner, close friends, family members or colleagues, don’t underestimate the value of having a strong support network to pick you up when you are physically, mentally and emotionally exhausted.  It will happen.  No matter how fit and healthy you consider yourself to be, this disease will try to bring you down with it.

The bond I have built with my family has been so very special to me.  We’ve travelled this road together closely over the last two years, we’ve bonded over the difficult situations we’ve found ourselves in and we have a great respect and understanding for each other’s limitations.

The bond with my partner has been one of the most important to me.  When I made the decision to be a carer for gran, I must admit I made that decision selfishly – it was my decision, that was the way it was going to be and there was no discussion about it.  My partner accepted this.  Through this entire time, he has stood by me, understanding my responsibilities, not competing for my attention and just helping me to recognise when I need to take a beat and reset.

I appreciate not everybody will be in the position I have found myself in, but you should never underplay the important role you have found yourself in.  Embrace the ability to open your heart, share your struggle and ask for help.

Purpose and Empowerment

There are certain behaviours I have witnessed with Dementia that make me want to cry and laugh all at the same time.  I experienced one of these behaviours recently and this actually became the catalyst for writing this piece.

I had been sitting talking to gran when she suddenly got up from her chair, picked up her walking stick and started to move it around the floor. I asked her what she was doing, and she casually replied, “I’m hoovering”.

I felt a smile appear on my face and my first instinct was to laugh and correct her. However, as I continued to watch, the reality (that word again!) set in that she was completely unaware she was not, in fact, using a hoover.  I started to feel a crushing sadness that I had wanted to laugh at her.

A few moments later she looked up at me and said, “Right, now that’s all done!”.  She was so pleased with herself and feeling accomplished, and it struck me that this is all that really mattered.

In the end we all want to feel a sense of purpose.  It drives us forward, keeps us motivated and makes us feel valuable and that’s exactly how she felt for that small moment in time.  Rather than take that away from her by correcting her actions, I told her what a great job she had done and how clean and tidy the room looked and she was delighted.

Follow our journey on Instagram @lucybandthebigd

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