Carol’s Story
As part of our Making Every Memory Matter Together campaign, which aims to raise awareness about dementia and its signs, promote early detection, and foster community support, we would like to share Carol’s story with you.
We understand that living with dementia can be challenging, yet it also shapes fascinating narratives that are often filled with wisdom, resilience, and insight.
Here, Tim, Carol’s partner, gives us a small snapshot into her dementia diagnosis, along with some of the little things that make a big difference.
Carol is 68 and has been diagnosed with moderate mixed Vascular hepatic dementia.
We both remain positive and enjoy spending time with our family, in particular the grandchildren, as they make us both smile and laugh. When I asked Carol what makes her happy, she replied, the grandchildren of course and sometimes you!!
Carol enjoys her time at Memory Matters as it allows for normal conversations with others who understand.
My words of advice to anyone caring for someone affected by dementia are to just take one day as it comes.
We would like to thank Tim and Carol for sharing their thoughts with us, and encourage anyone affected by Dementia to get in touch and write their story. Often, it can be a meaningful way to reflect on your journey, celebrate your strengths, and perhaps offer guidance to others. There is no right or wrong way to share your experiences, and you can choose to write as much or as little as you prefer.
If you would like to get involved, please email maddy@memorymatters.org.uk
To conclude, Tim asked us to share this with you.
If I get dementia, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things.
1. If I get dementia, I want my friends and family to embrace my reality.
2. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
3. If I get dementia, don’t argue with me about what is true for me versus what is true for you.
4. If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.
5. If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.
6. If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
7. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
8. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
9. If I get dementia, ask me to tell you a story from my past.
10. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
11. If I get dementia, treat me the way that you would want to be treated.
12. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
13. If I get dementia, don’t talk about me as if I’m not in the room.
14. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
15. If I get dementia, and I live in a dementia care community, please visit me often.
16. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
17. If I get dementia, make sure I always have my favorite music playing within earshot.
18. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.
19. If I get dementia, don’t exclude me from parties and family gatherings.
20. If I get dementia, know that I still like receiving hugs or handshakes.
21. If I get dementia, remember that I am still the person you know and love.”