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.