Tips for Frustrated Dementia Caregivers

By Valerie
November 12, 2010

When I was 34 years old, my Nana Cumming died after very slow death from Alzheimer’s disease.

I was 36 weeks pregnant at the time and was unable to travel back to Ontario. In many ways, I said “goodbye” a long time ago.

I remember grieving most when her dementia was progressing and she was having difficulty remembering who we were. Her death was a mix of emotions — sadness, relief, the finality of life. She was my last grandparent to die.

Caregivers and families don’t always give themselves permission to grieve the loss of an aging loved one while they are still alive.

It’s very common for family members and the person affected by dementia to experience grief and fear when a diagnosis is made.

Families are faced with the gradual loss of their aging loved one and the person affected by dementia is often very fearful of loss of self, memory, independence and relationships with our loved ones.

As the dementia progresses, the feelings of loss and fear may actually intensify. We all handle grief very differently.

Some of us are in denial and have difficulty accepting the diagnosis. Others are physically impacted and the loss manifests itself by loss of appetite, difficulty sleeping or a lack of concentration.

Many caregivers say to me, “I am so angry. Why did this happen to my Mom? Why am I having to caregive when I should be enjoying my retirement?”

The majority of caregivers usually experience guilt; feelings of not doing enough or guilt in enjoying personal pleasures when they know their aging loved isn’t able to anymore.

Accept your feelings: They are normal for anyone faced with such a situation. Healing comes with acceptance.

Find a trusted confidante or join a support group: Sharing our experiences can help combat our feelings of loss. For the Caregiver Support Group in the Comox Valley, call 250-334-9917.

Take Care of Yourself: If you read this column before, you know my mantra, “Provide care when you are caregiving, work when you work and play when you play.” Don’t cross the line if you can.

Live it Up: Just because an aging loved one has dementia doesn’t mean end of living. Focus on the abilities that remain rather than dwell on the losses.

The last time I saw my Nana Cumming I was shocked by her personal appearance and demeanour. She smiled when she saw me and I could see her trying to place me within her memories.

As I held my tears back, I reminded myself that I was bringing her joy in that moment, even if she wasn’t going to remember. Today, I continue to celebrate her by cherishing memories of her mouth-watering trifles, her love of quotations, her beautiful penmanship and her fondness for us, her grandchildren.

I’m going to hold on to those memories for years to come.

Wendy Johnstone is a gerontologist and is the founder of Keystone Eldercare Planning. Her column runs in the Comox Valley Record every second Friday.

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“You are amazing! What I tried to do in 2 months, you did in 1 week. You’ve helped us navigate the system, made sense of Mom’s disease, and gave back her independence and control. Thank you for making such a difference in Mom’s life and giving us, her family, complete peace of mind.”

– Mike G., Nanaimo, BC