My name is Alison and my husband Pat was diagnosed four years ago, aged sixty, with mixed dementia, he has Vascular Dementia and Alzheimer’s. I wish to share my experience with you, about ‘Being Me’. Before Pat was diagnosed I was me: I was Alison; a wife; a mother; a grandmother; a Brownie Guider; a friend; a colleague; a Registrar, I met people every day when parents came to register the birth of their babies (I even registered the births of both my grandchildren), other times people came to register the death of their loved one’s and I also met couples when  conducting their civil marriage or partnership ceremonies. I was also a Member of the Executive Committee and Exam Workshop Coordinator for the Association of Registrar’s of Scotland.
There were many different sides to Alison, but they all made up ‘Me’.

Now, I constantly feel overwhelmed of what is expected of me, not as a wife as I made “in sickness and in health” vows forty years ago, but by the expectations on me to take on the role of carer. I gave up my work ‘Me’ to care full time for my husband and the rest of the individual ‘Me’s’ seem to have blurred into one – ‘Carer Me’. People do not see Alison, they see a carer.

Finding new versions of ‘Me’

I lost a few individual ‘Me’s’, however I also  gained additional ‘Me’s’, for starters I gained the worried all the time ‘Me’. I’m worried about my husband’s progression along the Dementia Road and worried about my own health. After having had regular contact with consultants and access to a dementia link worker, we are now back to being seen only by our GP and this worries me.  Worried about our finances and sorting through the world of entitlements to allowances and benefits. I’m worried about our family and what the future holds. I have these worries as my hubby no longer worries about anything.

I also gained the anxious ‘Me’ and the angry and sad ‘Me’. I’m anxious that I’m saying or doing the wrong things that will trigger an angry outburst from my husband and I’m anxious that if we are out and about he will say inappropriate things. I’m angry and sad that I have lost the man I have been married to for forty years. I’m angry that most of the time I only get to see his confused, resentful face, whilst others get his happy face. I’m angry when he makes horrible comments to me to and I’m angry when I’m told to remember it’s not him, it’s the illness. This is very hard to do, trust me.

Please don’t get me wrong, there are still glimpses of his old self and I grab hold of those moments and add them to my memories. Those moments keep me going in the darker times.

The most important ‘Me’ I have gained is the grateful ‘Me’. I am grateful for our new home and neighbours and I am grateful to my family and friends for sticking with me through this. And yes, I am grateful for this illness called dementia, because although it has changed our world it has also  brought me the opportunity to find support and make new friendships. Through these new connections I feel I have a better understanding of all the changes in my husband and I try not to focus on what we have lost as a couple, but to keep moving forward together for as long as we can. I am  grateful to other carers’ as although our journeys on this road may be different, we all understand and just get it without need of explanation. We understand that sometimes we just need someone to be there, not to fix anything, or to do anything in particular but just to let us feel that WE are also cared for and supported.

Getting the ‘Old Me’ back

When I started out on this road I didn’t realise what was in front of me: how tough some days would be; how isolated and alone I would feel; how all the pressure of caring for my husband 24/7 would be so overwhelming and emotionally draining. I lost all of ‘Me’.

Fast forward to 2017 I was asked to return to guiding, after almost 25 years I had left my role as a volunteer leader behind to care for Pat in 2015, but now, one night a week Pat goes to our daughters and this gives me an hour and half of ‘Me’ time.  I share this time with other leaders and twenty four Brownies. It did take me a few weeks to stop feeling guilty, but the relief I feel is immense. I can breathe properly again as for that hour and a half I am ‘Me’.  The worries and anxieties are put on the back burner and I  enjoy being part of a team again, having normal conversations, smiling and BEING ME.

These special moments whether at home with family, at Brownies or going on the (now annual) weekend trip to Glasgow to see Strictly Come Dancing with my daughter and friends, may be few and far between but when they happen, I can see and remember what being ‘Me’ is all about. In these moments I’m not ‘Alison the carer’ but just ‘Alison’. I am Alison, including all of the separate parts of me: wife; mother; grandmother;  friend;  Brownie Guider; and former colleague.

The Girl Guiding Motto is “Be Prepared” and although I am not sure that anyone of us can ever be prepared for what we may have to face in the future, I will continue, as I have always done, to promise that I will do my best and to think of others before myself. However, I know that it’s also ok to think of me and to take time to just be ‘Me’. Taking those first steps to finding ‘Me’ was difficult but with support, determination and working together, there is no limit to what we can achieve. Please take the time to find your own individual ME.