Cindy

HERE ARE MY TIPS TO HELP YOU UNDERSTAND:

1. Resist making assumptions about dementia or people living with dementia. Ask someone about their experience. Ask if they need help.  If they say yes, ask how you can help them.

2. Remember that we don’t really know what is going on inside for someone with dementia. Some research indicates that there may be more awareness than it may seem.

3. Do your best to include someone with dementia in conversations, plans and activities.

4. Take steps to live a healthy, balanced life.  Eat well, get enough sleep and exercise regularly.  If you are a caregiver for someone with dementia, these steps are even more important.

5. Do the things you want to do early.

I was diagnosed when I was 61. I love to cook and knit. I’m Cindy.

This is my experience. My mother died a year ago after living with severe dementia and being unable to speak for 6 years. I was her caregiver. I started to worry about my own brain about 3 years ago and was diagnosed with young onset dementia when I was 61. I have some problems with memory but that is not the most prominent feature of my dementia. I first started to feel “less firmly located in time and space,” and this has increased.

I love to cook and to knit, but now have trouble following recipes and patterns. Just this morning, I had to throw out a whole batch of buttermilk biscuits. I struggle with planning and carrying out plans. I get disoriented even in familiar places. I fall every couple of months and sometimes have trouble recognizing everyday things.  I have been an avid reader my whole life and now it is unusual for me to finish a book.

I worked advancing Equity and Human Rights for over 30 years and stopped work the day I received the diagnosis. I had been having a hard time keeping up with my workload for several years. I stopped driving and gave up my car a couple weeks ago.

It feels like my life is narrowing and my self is diminishing. But I am fortunate to be surrounded by the love and support of my partner, my family and friends who help me find ways to flourish. I resist making assumptions about dementia and take each day and each moment as they come.

HERE ARE MY TIPS TO HELP YOU UNDERSTAND:

1. Resist making assumptions about dementia or people living with dementia. Ask someone about their experience. Ask if they need help.  If they say yes, ask how you can help them.

2. Remember that we don’t really know what is going on inside for someone with dementia. Some research indicates that there may be more awareness than it may seem.

3. Do your best to include someone with dementia in conversations, plans and activities.

4. Take steps to live a healthy, balanced life.  Eat well, get enough sleep and exercise regularly.  If you are a caregiver for someone with dementia, these steps are even more important.

5. Do the things you want to do early.

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