Lee's story

Caring For Jane

It didn’t come as a shock when Jane, my wife of over 40 years, was diagnosed with dementia with Alzheimer’s.  For months previously she had shown classic symptoms – short-term memory loss, difficulty in completing mundane daily tasks, changes in social behaviour – backed up by increasing lethargy, and disinterest in the world around her.

This wasn’t my first contact with dementia.  Both my mum and Jane’s dad had succumbed to this cruel disease, so to a certain extent I was prepared for what was to come. Nevertheless, the formal diagnosis was a painful, dreadful confirmation of what we could expect.

So, as much as I could, I had already taken some key actions to help us be ready for what was to come.  Choosing my words carefully, I had had conversations with Jane about her condition and how it was affecting our lives.  Very importantly, while she still had capacity, we sorted out her will, and together with our son and daughter, Jane agreed that we should put Lasting Powers of Attorney in place for her.  Always a careful and considerate driver, for more than 50 years, her lack of concentration behind the wheel now meant that her driving licence had to go.

Gradually, but then with increasing speed, all our shared duties around the house came to fall on my shoulders, to which Jane didn’t object.  In all honesty this was the easiest way to ensure that things got done, and at first I was happy with this arrangement – but I was wrong.  It allowed Jane to disengage even further from daily life, whereas with a bit more patience from me – such a key virtue for carers – even the challenge, and struggle, for her to think through, for example, the process of making herself a cup of coffee would have been such a valuable stimulus.  By the time I focused on encouraging her to do some of the simple things around the house, it was too late.    

The support of those closest to you, especially the family, is a critical factor in the wellbeing of both the cared-for and the carer – but I’d say that carers sometimes don’t do themselves any favours by not being open with family and friends, and not giving others the opportunity to help out.  Jane and I gained so much from the love, help and attention which we were shown for the duration of her illness … and I don’t think it’s wrong of me to suggest that, for many of them, it was a positive, even life-enhancing experience for those who came to our aid.

On the other hand, I experienced disappointments, and frustrations, in trying to understand, unravel and navigate the support services available from the social care system.  It is a regular claim that social care is undervalued and under-resourced, and in my experience I can only describe it as patchwork, and lacking in coherence.  If there is a master plan to bring together the committed, dedicated support organisations which are ready to provide a comprehensive, and comprehensible pathway to reduce the confusion and minimise the stumbling blocks which I think many carers encounter – well, I couldn’t find it.

So, a four-year journey – though I didn’t know it at the time – began.  Beyond Attendance Allowance, we didn’t qualify for any financial support and, out of a sense of duty to Jane and probably due to my own pig-headedness, I decided to shepherd our dwindling resources and not engage any external carers.  Again, that may well have been a mistake, detracting from Jane’s horizons, and mine.

Jane, bless her, remained serene throughout, even-tempered, perhaps even happy in her own way – and from that point of view I know that I am very fortunate that I didn’t have to live with and deal with the range of health issues and behaviours which many carers face.  Thanks to family and friends I was able to slot in those normal, routine activities – shopping, housework, and so on – and even sometimes find time for the occasional theatre visit or game of tennis. It really can’t be emphasized enough that caring for a loved one needs to start with caring for yourself.

Over the following months there was the inevitable range of questions and emotions bubbling under the surface – guilt, remorse, frustration, anger, they were all there.  I must admit that it was impossible to dispel totally the irrational thought that, miraculously, Jane might get better, and every day I would be on the look-out for signs of improvement – but, deep down, I knew that was never going to happen.

Jane passed away earlier this year, and I miss her terribly.  When somebody develops dementia, a common reaction is “It’s not (for example) Jane” … but, of course, it is.  It may be a new Jane, a different Jane, but it is still the person you love, you cherish, you care for.  Our happiness came in different ways during the four years that she suffered, but there were many instances; indeed, in spite of all the difficult days and the heartaches, I’m sure other carers will empathise when I say that I miss caring for her.  But Jane would be the first person to tell me to make the best of life and find a fresh purpose.  I will follow her guidance and honour her memory by doing just that.  



Editor’s note: Lee is now a valued member of our Carers Panel which helps guide our decision making.