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The Dementia Diaries.
The day you say goodbye

This has been the hardest article to write in this series, but maybe the most important. Because those of us who have to care for a dementia patient dread and yet often pray for this day. Few, if any of us, want our parents or loved ones to die. But the torment of watching them fade away to nothing is a pain from which we want relief. 

My goodbye started with an emergency call while I was away on a business trip. When I left, Mum was ‘healthy’ in body if not mind. Twenty-four hours later she was floored by a chest infection which responded to anti-biotics and then re-infected, this time as pneumonia. Suddenly, the calls to the nursing home shifted from ‘she is responding well’ to ‘we are calling emergency doctors’. The only comfort was that Mum was semi-conscious and being cared for with kindness and dignity. But that did not take away the cutting pain of telling the doctor to use morphine which might reduce her time, screaming down the phone to my mum that I loved her, hoping she just might still hear me, the tearful calls to get flights changed and the agony of waiting in a hotel room, waiting for the final call to come at any minute. It took me 20 hours to get home. It took mum another 6 days to decide to go. Eventually, at 4.00 in the morning the nurse said she was going.

Now there is no formula for those final hours. As I stood at my mother’s bed, holding her hand and telling her she was safe and loved, I was a mix of willing her to take her last breathe to make it all stop and terrified of the second that I felt her soul go. When that second comes, just for an instant you are the child again – frightened, alone and not knowing what to do. For some of us there are tears. For others quiet shock. For all of us a deep sadness.

Likewise, there is no formula for grief. After years of seeing mum decline into a life of anger, fear and bitterness all of which was directed at me, I went into a few weeks of almost unseemly relief. I did not have to walk in and see the strong woman who had borne, loved and raised me struggle with a brain that no longer worked and a body which barely functioned. After that shock phase, reality sets in. That is when my pain surfaced and it is raw. I cry every day, hide it away and tell myself to be strong and not bother others. The next phase will be anger. That has begun and I can get into a state of fury at the things she said to me. Beyond that lies resolution when I will begin to accept all that has happened and even look back without crying. One day I will reach acceptance and remember her with a smile.

People vary in how long it takes to get through these stages. Research tells us it is anything from two months to two years. You will take your own time and path. The only words of wisdom I can give are the few things I look back on and think ‘Thank God I did that.’ For the most part they are simple and include:

  • Ensure you have no regrets

  • Be kind to your loved one even if they are not kind to you

  • Say what you need to say even if you think your parent does not understand. Believe that at a soul level it is getting through to them

  • Tell them you love them and keep on saying it even when you get no response

  • Forgive, for with dementia, they really do not know what they are doing to you

  • Be kind to yourself. You cannot cure dementia, you can only care through it

And finally, just keep going. It is the cycle of life around which we all must travel. Simply do your best.


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