Today I'll look into some things regarding dementia. I felt like I wanted to get on YouTube to look at things less "clinically" and find some stories that might help people understand what others who are dealing with dementia are doing, how families can be coping, and how dementia can impact families.
The first one I found was one called Hat's Story. https://www.youtube.com/watch?v=8MhAn54w6t8. In it, the daughter explains how her mom was diagnosed fairly early with a form of Alzheimer's. They talk about the challenges it has brought on, but you can see the pain visibly in the daughter as she adjusts to a long period of time watching her mother become someone different. If you are in a caregiver situation, or if you KNOW someone who is in a caregiver situation - watch some of these videos like this. It will help you understand what others in the situation are doing, but also help focus your empathy for the person sitting next to you in your cube who is taking care of someone diagnosed with dementia.
While I'm Still Sue - Early Onset Alzheimer's. https://www.youtube.com/watch?v=I79IUV1n_L4
The story of Sue who is 55 who was diagnosed with early onset Alzheimer's. In it you can see how Sue struggles with her diagnosis and disease. In some of the scenes you can visibly see her struggle with what she wants to say, etc. The son is also captured in his role as he takes on more and more caregiver responsibilities. For her, the condition has progressed quickly; someone once gregarious now just a shell of her former self. We can all relate to watching someone who was represented by one image in our heads changing before our eyes into someone we don't recognize. There are some very interesting things they have done to adjust that were highlighted in the video; a travel paper, some of the feelings, etc.
Consider how off putting that might be when someone you love becomes someone you may not "like" as much. Different forms of dementia can do different things to people. Then imagine that you were once an independent individual living your life the way you want and then starting to see quickly that your independence is challenged (things you can and can't do). Now consider what the learning curve is for those who jump into a caregiver role.
All of these points are really just a way to help us have some framework to understand what it might mean when we learn that a co-worker or friend is a caregiver. We often understand what it is to be a new parent for example (ooh, getting any sleep? tough to keep them entertained...etc.). But do we all know what it means to be a caregiver until we have been intimately exposed to it personally? How can we change that.
A Love Letter: https://www.youtube.com/watch?v=K0m9B9810ms
This is a story of a man taking care of his wife. She's in the later stages of her dementia, but he tries to still show up for her even though she doesn't always know who he is. Dementia can be so difficult because it can take years, and all the while change us into a shell of our former selves. For the caregiver or loved one, I can't judge. Some cannot commit to that level of care and support throughout and others can, but they all deserve to live too. Every situation is unique, but they're invariably tough. These are sweet stories where people remain committed to caring for their loved ones. In the video, one of the men says, "It's like losing someone but you haven't lost them."