What I wish I had known as a family carer

Looking back, I think all I had on my list when my mother was diagnosed with Alzheimer’s in the last few years of her life, was “how do I complete the Attendance Allowance form” because I knew nothing about dementia then, and just blindly dealt with the more practical issues as they arose.

Some people have this approach from the start, others like to learn as much as they can about dementia.  I was the latter type, deep-diving into dementia studies to help me feel more in control of what was taking over my mum’s life, not to mention mine.  It felt reassuring to be aware of what may lie ahead; to psychologically prepare myself for my mum’s changing behaviour.

Older and wiser, my list would now look like this;

• The importance of smiling – always
• Never argue with a person with dementia
• Avoid asking questions of a person with dementia
• Always offer choice but no more than A or B.
• Who can help me as a family carer
• Where are there dementia-friendly activities locally
• Practice Mindfulness – appreciate what they can do today and don’t worry about tomorrow.  Take one day at a time.  Enjoy whatever time you have left with them
• The vital importance of self-care.

Anyone who is or who has cared for someone with dementia knows it can be the most challenging, but (at the same time) most rewarding, job you are ever likely to hold.  When my mother was diagnosed with Alzheimer’s, I distinctly remember a conversation I was having with her one day, about how keen she was to try out the swimming pool in the Care Village where we had just moved her.

We were dealing with various skin infections associated with her Alzheimer’s at the time, so swimming was out of the question.  I had to break it gently to her that this was the case but also incentivise her to stop scratching the lesions on her skin so that we could plan future swimming sessions together.

Then I had that ‘lightbulb’ moment as it dawned on me that our roles had switched; I was now the ‘parent’ and she was growing more needy in a child-like way.  I suppose I always knew that day was coming, but it still takes you by surprise.  I feel this is the worst thing that dementia does – it robs you of more of those precious years with your parent behaving as a parent, with all that priceless wisdom to impart to you during the golden years of their life.