On the day we got my husband’s diagnosis, it felt like we were being handed a gift, a Gift of Dementia. Unfortunately this gift did not come with a returns receipt. Along with this gift we were given the following information: there is no cure for Vascular Dementia or Alzheimers. That the damage already caused to the brain could not reversed. There was no prognosis to give us, as everyone is different. The doctor prescribed a medication that may or may not slow the progress down. We were told "If you have to have dementia, Vascular is the best kind." Yet almost immediately The Gift of Dementia had began to spread its effect on all the family. The fight had begun, what we didn’t realise was that we would lose little bits of him each day and that our grief and The Long Goodbye had already began.

I lost MY identity. I lost being me. I became invisible.

Prior to my husband being diagnosed I was me; I was a wife, a mother, a grandmother, a friend, a colleague, and I was doing a job I loved and enjoyed. The losses since diagnosis have been many and they began almost immediately, although I didn’t realise until much later. But looking back, I can now see that quite quickly after becoming carer to my husband, I lost MY identity. I lost being me. I became invisible. We married 41 years ago and I made vows that day which included in sickness and in health. But all these years later I was never asked if I would give up my career to become my husbands full time carer. I was never offered any alternative. It was expected of me. I lost the friendships of my colleagues, I lost the joy of meeting new people every day, I lost my salary, I lost the feeling I was able to help people through my work. Someone said to me recently I don’t know how you do it. I replied I wasn’t given a choice. I gave up on me to be there to care for and be a support for my husband. All the individual parts of me blurred into one and people stopped seeing me. All they saw was a carer. Because of Dementia we lost friends, we lost our individuality, and we lost each other. At the start of 2018, with support from Life Changes Trust, TIDE and other unpaid carers who cared for someone with Dementia I was able to find me again, I found my confidence to speak out, to share my experiences, to support and help other carers. Fortunately for me I was not lost completely, however, my husband was not so lucky. He loses more and more of himself each and every day, he just does not realise it. He tells everyone we meet that he is fine with having Dementia and he just gets on with it. Don’t get me wrong I am glad he feels supported to feel happy and that that he thinks he can get on with things but in reality it is the total opposite. It is family that find it difficult to cope with losing him bit by bit, slowly but surely, while still having him with us. We lost our relationship as husband and wife and I can still see the look on our daughter’s face the first time her dad could not remember her name.

Dealing with loss and grieving under any circumstances is devastating. Over the years I saw many families deal with and openly show and share their grief through my work. Grief at time of death is seen as natural and is acceptable. At the time of a death grief is seen as a symptom and cause of other illnesses like anxiety and depression. When your loved one has died you may be offered help, comfort, support and counselling to get you through the grieving process. At time of death it is accepted that you will feel that overwhelming loss. However, when you care for someone living with Dementia you have to cope and deal with losing pieces of someone you love bit by bit, day by day, year by year. While these losses are every bit as overwhelming and emotional, it’s just not seen as acceptable that you are grieving for your loss. We as carers, we as family, don’t feel free to openly show and share our grief. I mean we can’t possibly be grieving for someone when we are still lucky we have them with us. I beg to differ. As carer and wife of someone living with Dementia I often don’t feel lucky. We have to watch our loved ones fade away in front of us, we see the blank look behind their eyes, their smile that doesn't happen very often that smile never ever reaches their eyes. We don’t get offered help, comfort, support or counselling, at least not without having to fight for it. Please believe me when I say we have to fight each step of the way, for ourselves and the person we love. We have to find the strength to have our voices heard.

All these losses are so overwhelming when you still love that person but sometimes you can’t stand to be in same room as them.

Back in 2015 I started to lose my husband. At least the husband I knew and recognised, the husband I loved, the husband I shared my life with, the husband I made memories with, the husband who had always been my friend and supporter, the husband who worked hard for our family, the husband who I laughed and cried with, the husband who I could chat to, the husband who made choices and decisions, the husband who was kind and loving, the husband I could share my worries with. That husband I lost and I continue to lose a little bit more of him each day. Gone is the man who was thoughtful, funny, kind, helpful, caring, loving, respectful, a husband, father and papa. That man has gone and will never return, and yes we grieve over losing him. In his place is a stranger. Someone who still lives with me and outwardly still in some ways looks like my husband. But a man whose personality and behaviour has changed so much he is no longer recognisable to me as my husband. I now use many varied skills learned over the years at any given moment in my role as a carer. Skills in dealing with a man I love but no longer recognise. A man who has no filter and will make inappropriate comments. A man who has tantrums, angry outbursts. A man who says the most hurtful things, tells lies, has periods of sulking or going in huff. A man who continually repeats words and phrases. A man who can change from placid to angry in a split second. In each and every one of these moments I have to find the strength to have patience. I need skills for solving problems, finding solutions, listening and supporting most times day and night. I know compared to some I am lucky that I can still have him at home, but it feels like I have a stranger living with me who no longer asks or cares if I am OK. No longer asks if he can help, no longer interested in our family life, or what we are doing. All these losses are so overwhelming when you still love that person but sometimes you can’t stand to be in same room as them. Over the years since diagnosis I have began to feel hate and anger, not towards my husband, but towards Dementia. Each day that passes, Dementia steals another piece of him that is lost forever. Each day I grieve for another bit lost. I continue to watch the person I know so well just disappear. Gone are normal conversations, gone are discussing and making plans, gone are making decisions together, gone are laughs, gone are our shared memories. I have had to let go of the picture of what we thought and hoped our future would be like. Each loss breaks my heart a bit more, each loss gets more and more difficult to cope with. Losing the person you love and care about while they are still with you is heartbreaking, exhausting, devastating, overwhelming, upsetting, and you find yourself grieving each and every day. The time I can spend with our family is so precious to me. Although they support me and I could not cope without their support, I feel I am not able to share most things with them. It feels to me like all I am doing is complaining about their dad. So now for the most part I cope alone, I now cry alone, I have to make all the decisions, and make all the plans for daily living, I have all the worries and anxieties, I constantly worry that I am failing him, that I am not making the right choices. Dementia does not just affect the person with the diagnosis, it also affects everyone around them. It is a continuous feeling of loss and because my husband is still young, that sense of loss may very well continue on for many years to come. That is the reality of how Dementia affects families 24/7. This is our family’s truth. This is our family’s reality. I have lost my husband, our children have lost their dad and most heartbreaking of all is our grandchildren have lost their fun loving, kind, helpful Papa. The one we knew is lost to us, we won’t ever be able to find our original. Caring for someone who has dementia is a daily struggle. It’s a constant fight to get support, to get access to services unless you are in crisis. It’s overwhelming, it’s sad, it’s emotional, it’s draining, it’s demanding, it’s challenging. When I do get opportunity to get out and about and meet anyone and they ask me how I am, it is easier just to reply I’m fine. I don’t have the energy to tell the truth and to have to deal with their look of “oh I didn’t realise things could be that bad. He looks normal and at least he is still at home with you.” So even at this moment in time where Dementia is more openly and widely discussed, to be grieving while your loved one is still alive is not acceptable to most people. My symptoms of anxiety, high blood pressure and depression are not put down to grieving for the man I am losing, they are put down to my struggles as a carer. At the moment grief has no place in our lives until our loved one dies.

If you recognise yourself in this experience and would like to contribute to one of our focus groups on this topic, register below or get in touch with carers@lifestorynetwork.org.uk

Join us:

Newmains Community Trust Wednesday 28th of August 10am-1pm (followed by lunch) OR Wednesday 28th of August 6pm-8.30pm

East End of Glasgow Thursday 29th of August, 10am-1pm (followed by lunch)

Glasgow City Centre Thursday 29th of August 6pm-9pm

Aberdeenshire Tuesday 10th of September 10am-1pm (followed by lunch)

Other sessions TBC