The joy and sorrow of caring for someone with dementia

Mum, aged 11

Mum, aged 40

A lovely lady recently contacted me after reading my latest book Submerged Secrets. She wanted to tell me about her experience of taking care of her mother, who suffered with dementia. Far from being negative or forlorn, this reader focused on the laughter that her mother’s diagnosis brought with it. When your mom forgets you are her daughter, it can be deeply upsetting. To approach these difficulties with humor helps to chase away the sadness.

My mother, Judith, also has dementia. She can no longer remember the word for shoes, so she goes off in search of her “feet” when it’s time to go out. She sings along to songs with all the wrong words. And she slices an onion in the same way she would core an apple. These are funny and sweet moments that make up for the times when the disease causes her moods to pivot to a darker place.

I became a part-time carer for my mother in early 2024, shortly after she was diagnosed with both vascular dementia and Alzheimer's disease. Her condition is progressing quickly and we lose a little bit more of her each day. She no longer remembers her career as a mental health nurse, but she can still usually recall the names of her four daughters (and most of her grandchildren). The character of Francesca in Submerged Secrets was heavily influenced by my personal experience. Just like my mother, Francesca is forgetting pieces of her life, and her family is doing everything possible to support her at home.

​If you care for someone with dementia or Alzheimer’s, it can feel very lonely. Going out is often a huge challenge, because people with dementia do not like change. Even something as mundane as going to the local store can give them anxiety.  I never realized how hard this task was until I started doing it, and I admire those of you who care for someone on a full-time basis. You are angels on earth.

In times of struggle, our faith becomes our refuge. God sees the sadness, laughter, frustrations and anger. What’s more, He understands every tiny emotion you feel. You might sometimes be resentful, especially if your relationship with the person was strained before the dementia set in. You might find yourself longing for the freedom of your old life. You might be despondent to see a once vibrant person fade away before your eyes.  Dementia is usually far harder on the person doing the caring than the one suffering the disease. 

Mum, aged 78, with her four daughters, L-R Elisabeth, Joanna, Judith, Deborah, Katie

​There is no blueprint for dealing with dementia. We simply do our best and hope it is enough (spoiler - it is!) If you are a caregiver, always try to remember you are a blessing and a gift to those that rely on you. You do the Lord’s work.

With love,

Elisabeth
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