Contributed by Sarah Viola
A loved one looking at dementia and its symptoms from the outside has a much different perspective on the disease than a person who is living with it. As a person progresses through various types and stages of dementia, they begin to view the world differently than they once did. Understanding how people with dementia experience the world around them can help bring valuable insight to their caregivers and loves ones – and assist them in developing a better sense of patience, empathy, and understanding.
A view from the caregiver:
My loved one has lost the ability to take care of himself. I heard this may happen with dementia, but the day I needed to help with simply getting him dressed was when the reality hit me. I feel like I must do everything for him, and it is really starting to weigh on me emotionally and mentally. When I try to do things for him that he can no longer do, he gets angry at me, which increases my frustration. Why won’t he let me help?
My loved one is generally busy and active, yet at times he seems to withdraw and disengage from the world around him. I try to help by getting him involved in his previous hobbies, but he just can’t. He either quits doing the things I set up, or he simply walks away. It is so frustrating for me as a caregiver – he just can’t focus. As soon as I feel like he is content, like I can perhaps get a few moments to myself, he ends up getting into something he shouldn’t. I feel suffocated.
A view from the person with dementia:
I am feeling a little lost these days. Inside, I feel the need to stay busy with what I’ve always done, but sometimes I get lost and can’t remember what I’m doing. Because of this, I jump from project to project. When I get overwhelmed, I just sit and internalize – I go to my safe place where there are no expectations. Deep down I just want to be a productive member of society like I used to be. I want to feel included, but since people often think I am a nuisance and that I can’t do anything, they leave me out of fun activities and conversations. They often talk right through me as if I’m not even present.
My family must think I am helpless. They try to do everything for me, which makes me very frustrated, because I’m not a baby. I can do things myself, but I sometimes get lost between each step in the process of completing a task. If my family would simply tell me what to do next, I could prove that I am still capable of doing things physically for myself. I just need to have my world simplified, with less steps so I can focus on one thing at a time. After I’ve completed something on my own, I feel great, like I matter again!
At Primrose, we know that the effects of dementia can be emotionally and physically taxing on families. You don’t always have all the answers, and that’s okay. Remember to take time for yourself and your family, and know that if you need help, we would be honored to assist you. Just visit our website at www.primroseretirement.com for more info.