Jane's story - It's not a bad life

Thinking my life was over 

When we received my husband’s diagnosis of dementia just over two years ago almost my first thought was, ‘My life is over.’  I realised even then that this was a little selfish, after all he was the one with the condition, he was the one who would become less and less able as the months/years progressed and I knew that was bad, ‘But what’, I wanted to scream, ‘is to become of me’? 

Ash and I met as teenagers and at that point we’d been together 41 years.  Throughout that time, we’d played together, loved together, had a child together and he’d been my rock, my shoulder to lean on, always there for me to tell me he was proud of me, to refrain from telling me I’d yet again done something stupid.  Life had had its ups and downs as everyone’s does but, when it was all looked at in close up, he’d been the love of my life for most of that time. 

And now he was disappearing, dissolving in front of my eyes, morphing into someone I no longer recognised and all I wanted was to get back to where we were before those changes set in.  Not to the day, or the hour or the minutes before the diagnosis because the changes had begun to make themselves felt long before that but back to when we were really happy, to when he could make my heart soar, my body double up with laughter and to when he could make me go weak at the knees just by looking deep into my eyes. 

Sinking into despair 

All of that was now gone and I had no idea how either of us was going to survive.  I was at a loss to know how to make life bearable and just assumed that we would sink into despair and stay there until it was all over.  I cried and cried.  In fact I cried every day for three months and at one point I cried continuously for three days.  I cried through a team meeting at work (luckily it was a PowerPoint presentation so the room was in darkness), I cried in front of friends which was something I’d never done in my life and I cried in my mum’s arms even though she didn’t understand why (she was having her own problems at the time). 

Creating a new life 

Then one day I just thought, ‘Enough, this has to stop,’ and mostly it did.  I realised then that I had a choice, I could carry on being miserable while at the same time bringing down all those around me or I could pick myself up and create a new life for myself.  I had to accept that things were never, ever going to be the same again, that we were never going to be a couple again or that we were ever going to be truly happy again but that didn’t mean life had to be awful. 

It did mean however that how my life panned out from that point on was up to me.  It didn’t happen overnight.  There were still drives to work where I had to pull over because I was crying so hard I couldn’t see the road in front of me; grief came over me in waves at the most unexpected times; I still expected to wake up and find it had all been a mistake but little by little I’ve got to the point where I rarely cry; where I have moments of pure joy and I have even more moments where I laugh out loud because I’m having fun. 

The sad thing is that all of these happen independently of my relationship with Ash however at least they happen.  ‘But how?’ you may ask and I’m going to tell you because if you’re at the beginning of this journey you may just be at that point where you think this is the end and it might just help to find it can be a beginning instead only that’s up to you.

Reaching out to friends

Friends help.  That doesn’t happen naturally, at the beginning they don’t know what to say, they don’t know whether you want them in your life or whether you want them to stay away.  I don’t think I knew this at the time I just, again selfishly I think, realised that I needed them, that they would bring some reality into my life, so I rang them, talked to them about things other than dementia and began to ask them to do things with me. 

Two years on I go walking with friends twice a week; I accept as many solo invitations to village events, the cinema, am-dram productions etc as I can; I invite people for coffee; I meet people for lunch and, the big one this year, our son is coming to stay with his dad for a week so I can to on holiday with a friend.  I am, in effect, creating new memories just for me, memories that don’t include Ash and in that way I really feel I’m saving my sanity.

Life is what you make it 

I’ve put other things in place too.  I’ve cleared out the room we used as an office, decorated it, put a tv on the wall and turned it into my sanctuary.  I have noise cancelling head phones so that when the endless quiz shows get too much, I take my laptop through and sit with Ash but watch something I want to watch.   I’ve taken over the gardening and created something new.  All sorts of things just for me.

Escape has become more difficult over the past year and I now find I can’t go out for whole days but that’s OK, I can plan things around that fact.  I also know there will come a time when it becomes very difficult for me to get out at all but I’m planning for that too and I’m not despondent.  After all, life is what you make it and as long as I keep my sense of self, I have a feeling that I’ll survive.

- Jane's husband was diagnosed with dementia in 2017 at the age of 58.  She started writing a blog called Memory For Two to try to focus on the positive aspects of living a life affected by dementia, and to in turn keep her focused on the positive aspects of their life together.  You can read an earlier piece Jane wrote for our website here.

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