
Written by Margaret Tait, carer for her husband.
How do you come to grips with the fact that the love of your life has dementia?
Your life as you know it changes dramatically and the person you relied on is not there. I miss him. I miss his jokes and his laughter. I miss the affection.
As his dementia progresses, he is becoming obsessed, leading to bouts of frustration, anger and emotional outbursts. I now have to check on everything around the house. Turning taps off, seeing if he has changed the timer on the pool filter (again), emptying the rain water tank. This has now become part of my daily routine. Some days he will do something quite remarkable, quite normal, and I begin to think that things are improving.
Getting a comprehensive assessment with the Aged Care Assessment Team (ACAT) whilst my husband was in hospital was probably the best thing that happened. This is despite me being of the opinion that I should be the one to support him through this; why would I have him assessed?
While waiting for the ACAT approval, we accessed the Commonwealth Home Support Program (CHSP), a subsidised program which enabled us to get help immediately with gardening and cleaning services.
Accessing social activities through the package is amazing. This year, we have arranged for a carer to take him out for two hours a week to places he remembers from childhood with visits to museums and history centres. He is also going to golf for three hours a week which he looks forward to. When he comes home after these outings, he is more alert and quite talkative. I am also more relaxed because I have taken this time for me. Some quiet time, not for reflection, but to immerse myself in sewing, reading a good book or having coffee with friends.
Sharing meals with friends and family has the same effect, so these have been an important part of our lives. A little glimpse of normality.
Any change to our everyday life is causing him distress. Recently having new floor coverings installed was a major disruption, so much so that I had to cut back. Rather than having the whole house done, I could only do part of it. Holidays are also now a thing of the past. Going to unfamiliar places causes anxiety.
I am learning to compromise. We have always made decisions together so I struggle with the fact that I now have to make all the decisions and do things behind his back.
Walking is a part of his regular daily activity and this is one obsession which does not change. Obsessive behaviour is now the norm but the subject at the centre of his obsession is changing from month to month.
And so it goes. Each day brings new challenges, and sometimes surprises, but I love him dearly. I will do everything in my power to keep him socially active and at home for as long as I can.
And I will take the time to smell the roses.