Loneliness Awareness Week: Jane’s story

June 15, 2021

My husband is missing, absent without leave, no longer in my life. He began to fade away, gradually at first but with gathering speed until eventually the person I fell in love with over forty years ago is no longer beside me. In his place is a stranger, someone who looks like my husband and sounds like my husband but is, in every other way, a completely different being.

Life will never be the same

This is not a total disaster you understand, just somewhat bewildering. The man who made me laugh every day from the minute I woke to the minute I went to bed has been replaced by a man who is frequently grumpy, often cross, and seemingly at odds with the world, and me, on a daily basis. The man who had more energy than anyone else I knew, who was never still, who was so full of life that friends and family looked on in awe has been dislodged never to return.

The joy of the world, so in evidence in the person who went before, is missing from the eyes of this new man. Everything is a chore, chaos and confusion reign and life, since that diagnosis of dementia, will never be the same again.

A nicer version of myself

There are positives to this new life in which we find ourselves. I’ve given up work so we spend more time together, I’ve discovered the joys of gardening, I have time to walk the dog, I’m learning some aspects of DIY; all good things but, most interestingly, I find I’m turning into a nicer version of myself.  I have more time for friends, I remember birthdays, I notice more, take on board other people’s opinions and feel that I’m better company. So definitely not all bad.

A good day starts with a smile

We have good days and bad days. A good day begins with a smile, with this person beside me in bed reaching for my hand and commenting on something he can see out of the window. A bad day starts with him lying rigid, not knowing where he is and unable to think of what is to come without panicking so then my brain has to kick into action as I think of how I can reduce his stress and, consequently, mine.

I’m not sure this new man is one I would have married all those years ago or be still married to if I had. He isn’t someone I really know so it’s hard to tell but I do know that we’re not a team, that we don’t head towards a shared goal, that partnership working is missing from our relationship and that has taken some getting used to.

Sometimes I want my real husband back so badly it hurts, but at other times I know I’m lucky to have had him at all. I used to be married to a man who thought I was amazing, who always had my back, who was there to put his arm around me and tell me everything would be alright. I keep expecting him to come up to me at any moment and tell me it was all a mistake, that he’s better now and we can go back to how we were but in my more rational moments I know that’s not an option. The imposter is here to stay and there is no way out of this situation, only a way through.

Strengths I never knew existed 

Sometimes having a stranger around the house, someone who doesn’t understand how I think, who doesn’t know how I’m feeling makes this a lonely existence. Friends are always there if I need them but my very best friend has moved out.  The only person I could ever cry in front of can’t cope with my tears; the one I told all my worries and fears to no longer wants to hear and my soulmate no longer exists. I’ve discovered I can be lonely without being alone.

I’ve also discovered however that I have strengths I never knew existed. I can make decisions without checking with anyone else; I can drive long distances without being afraid; I can work things out for myself; I can ask for help when I need it; I can produce a solution to almost every problem if I think hard enough.

Before my husband disappeared, he seemed to love everything about me.  He was proud of me and encouraging in everything I ever wanted to do.  This was excellent for my self-esteem but without his open admiration I’ve had to learn to love myself, to appreciate my own strengths and work on my weaknesses.

Facing the future

So, still not all bad but the one thing that looms is the future. My new partner has just turned 62 which is young for dementia. Life is not what I imagined when, at age 15, I met his predecessor. I thought we would grow old together and we certainly seemed to be heading that way. We had such plans for that future, but those plans have now been assigned to the scrap heap and I’ve realised there is no point in dwelling on them. We are where we are and the quicker I accept that, the sooner I can get on with enjoying what I do have rather than wishing for what I don’t.

In summary, I am without my husband, my best friend, my rock, my shoulder to lean on. However, within myself, I have found depths I never knew existed. I have a level of commitment, determination, and resolve that were hidden, tucked away because they’d never been needed before. I’ve learnt that I am the author of my own destiny, the creator of my own character and through all of this I can sink or swim. For me, I’ve discovered, sinking isn’t an option.

Jane writes a blog called Memory For Two where she tries to focus on the positive aspects of living a life affected by dementia.  She also manages a Facebook page for people who share her ethos that it’s not all doom and gloom.

Photo – Jane and Ash pictured in 1976, aged 15 and 17.

Originally posted on YoungDementia UK.

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