Those of us who are living with dementia go through endless ups and downs. We have good days and bad days. There are times when we struggle to put a sentence together and times when our true selves shine through. Our caregivers roll with the punches to figure out what we need and how much help to offer in order to provide the best care they can.
It is easy for caregivers to become overwhelmed and lose sight of who their loved ones are, how they are feeling and what is most important to them. Understanding a dementia patient’s unique perspective can help ensure you are doing all you can to address both their physical and emotional needs. These eight simple requests are what I want my family, my friends and the public to understand about me and other people living with this disease. I hope that you will use these wishes to guide you in your journey as a dementia caregiver.
- I have been diagnosed, not defined. See the real me.
“I am not a diagnosis or a statistic. I still have feelings, thoughts, dreams, hopes and plans. There are many things I can still do. I am not sitting in a wheelchair in a nursing home staring out the window—not yet. I am a vibrant, loving person. Always remember: I have Alzheimer’s, but it does not have me.”
- I cannot do this alone; please help me.
“I need you to help me find ways to succeed at helping others and do something significant with my life. I sometimes need help understanding things, but that does not mean that I cannot understand. I sometimes need help expressing things, but that doesn’t mean I have no thoughts and nothing to say. Help me when I need it, and let me do all I can while I still can.”
- I am worthy of respect.
“I need to feel that what I say and do matters. I still have much to offer the world. In many ways, I have more to offer than someone who has not yet read the final chapter of their life. I am just as worthy of respect now as I was before.”
- Please comfort me.
“I am scared of the unknown. I do not know if I have six months left to communicate or six years. I worry about going to bed at night and whether I am going to wake up even worse tomorrow. My brain has betrayed me, and I can’t get away from it. It is a scary thing.”
- I crave compassion. Love me regardless.
“I need to feel loved, needed and that my life matters. I don’t want to feel rejected because of my diagnosis. I need people to meet and accept me as I am right now. It is important to understand that I may not understand. I do not have any idea why I forget some things and remember others. It’s not intentional. I just don’t have the ability to realize what I am doing wrong.”
- I am still here; keep talking with me.
“If you really want to know how I’m doing, then ask me. Know that I will be honest with you. Please don’t talk about me like I’m not here. I don’t need people to raise their voices when they speak to me, but I do need people to look me in the eye and communicate on my level. I need you to talk plainly, and sometimes I will need you to repeat yourself. Please do not ask me question after question. Please appreciate the fact that I am still trying, and that I want to express myself and feel a part of things as long as I can. The day will come when this disease will silence me. I want to be involved in life as much as I can, while I still can.”
- Understand my limitations.
“We all know what it’s like to forget. Understand that what is happening to me is so much more than just forgetting. I have lost the timeline of my life. I have no yesterdays and no tomorrows. I only have now. I cannot recognize things, even when they are right in front of me. I struggle to choose my socks in the morning. I struggle to even remember where my sock drawer is. I struggle to remember your name. Please be patient. I know this is hard for you, too. I wish neither of us had ever heard the word ‘Alzheimer’s.’ I need you to accept this and get through this with me.”
- I will hurt you. Please forgive me.
“Remember that I have dementia. I will say things that do not make sense. I will say things that might hurt you. I hate that I do that, but I cannot help it. I have a disease in my brain that is affecting what I say and how I say it. Sometimes, what I want to say is not at all what comes out. I cannot find the right words, or any words at all. Sometimes I end up saying or doing something that upsets or confuses you. Please always remember, I never want to do that. Please blame the disease when this happens, not me.”