Friday, January 2, 2009

dementia from a care recipient's point of view

I found a terrific website the other day.
Carol Bursack, found at, a US author, is a self-trained former caregiver with a highly praised book on caregiver's personal stories. There is much value in telling our stories, as it gives ideas, support and encouragement to those fulfilling the role. Most of us have little experience, have many issues to resolve, and understanding what has and has not worked empowers us to make better choices.

I read a great article on a site maintained by Carol. It was all about training for dementia caregivers. The article speaks of the training that Jacqueline Marcell took, to better experience the signs and symptoms of dementia, exacerbated by caregiver stress, can lead to major health issues on the part of the caregiver and the care recipient.

The training included wearing coloured goggles, head phones to alter sound, and had her wear shoes filled with popcorn, and wrapped her knees to simulate the impact of dementia on the senses. The pain of arthritis and other chronic diseases, is huge to the care recipient. It results in frustrations and anger issues as the dementia also impacts on the emotional well-being of the care recipient.

While caregivers cannot ameliorate the physical, social, psychological or emotional impact of being a needy, vulnerable senior who is used to being an independent person, they can understand what is going on. Setting your own anger and emotions aside gives you a better understanding of what the senior is experiencing. There came I time when my non-swearing, God-fearing Christian father began venting, banging his hands on his table and raging at the life he was leading. I learned, simply, after his comment, "It's all gone to hell!" to simply agree with him.

"Yes, Dad. It's all gone to hell. The tumour is mixing you up. You had a good run, though. You did a lot of good for a lot of people."

I also learned to reconfirm that he was not "stupid" as he kept saying, but that the brain tumour was eating away at his brain cells. He would say, "It's all mixed up in my head!" And it was.

There are some simple tools to help you determine if someone has dementia. For example, this page: 10 warning signs, gives some suggestions for you to look for. Of course, a diagnosis from a geriatrician is the best tool, but sometimes you have to nudge your loved one, and/or their physicians to accept reality. Once you have a clear diagnosis you can make a plan and learn about what you might face. Help is out there. My mom died at home, while dad I kept company in his LTC home room. It was brutal and I did not have to be alone.

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