Dear Nonprofit Organization:
First, thank you very much for existing to help families like ours. It was a shock to hear when my husband was 55-years-old that he had Mild Cognitive Impairment. We had never even heard of this. The first place I turned, having received no information from the doctor, was the internet, where I was lead to the Alzheimer’s Association.
In the over two years that have passed since the diagnosis, Steve and I have been involved with a few different nonprofit organizations through support groups, or just being educated.
Although you have never asked for my feedback, I feel it is time to share some information with you so that you can improve how you interact with caregivers.
- If there is something you need from us, please ask. Do not beat around the bush and expect us to guess correctly.
- Please don’t tell me you feel sorry for me. It makes me feel worse, not better, that my situation is so bad compared to other situations that you feel sorry for me. If you feel the need to say something like that, maybe you could instead say that you feel sorry for everyone in the situation.
- If we are doing a project in your group, and I ask you questions, either answer them politely, or tell me that I can do whatever I want in a polite way. Please do not, in front of other members of the group, say that you ignored my e-mail because you weren’t going to answer all my questions about the project. I believe I asked three questions, by the way.
- Have you ever wondered why I don’t attend your support group? It’s because you squeeze 12 or more caregivers into a room that holds eight people, and you have an empty conference room down the hall.
- If you need me to speak at your event, please tell me what time you need me there, and don’t pad it. You can see that I arrive on time. Please give me specific information such as directions and the location of the event at the facility. I am working hard to make sure that my husband, who has MCI, and I are there, prepared and on time. You can help by giving me specific information. And when you don’t, please don’t have an attitude with me when I ask for information.
- If you tell me that you are going to meet me or my husband somewhere, please be there, or call and tell me that you won’t. You have my cell phone number. Let me know that if you are going to be at the meeting spot only until a certain time, and then I won’t look for you there after that. If we should proceed to someplace else if we don’t see you, tell me that too.
- If you have a table at an event and I stop at it, talk to me. There is probably a reason that I am stopping. Send someone to work at the table who has personality and compassion. Instruct them to say something like, “How are you doing today?” You claim to be a resource for caregivers. Treat them with kindness. You may be the only person all month who asks me about me.
- Don’t ever, ever use the word “pathetic” to me, about any aspect of my life again.
- If I am in a support group you are running, I have absolutely no interest in hearing about your children or your latest vacation. As you tell us frequently, “It’s not about you.”
- Newsflash: “Still Alice” is fiction! Stop telling me to read it! I have and hated it! The author does not have Alzheimer’s and I don’t care how many people she has worked with, she has no way of knowing what is actually going in in someone’s head.
- In the support group, you tell me I should feel how bad my situation is and I should feel the pain of it. Why in the world would I want to do that?!? That sounds ridiculous.
- I participated in your walk and raised money for your organization. Many people made contributions via your website. Please stop bothering them.They do not like receiving your requests for money via phone calls, e-mails and letters in the mail. Because of your contacting them obnoxiously, they may not contribute to you again. And shame on you for contacting people I wrote down as emergency contacts when I came to your facility when what you want from them is a donation!
- If you are giving information to my husband that I need to receive, please put it in writing, either via e-mail or something you send home with him. He has a memory impairment, remember?
- Please stop telling me to solve every problem with money, such as going to a spa to take time for myself. You have no idea about my financial situation.
- This is not our entire life, and that’s why I tell you we have a teenager. Do you realize you have never once asked about our son or tried to connect me with someone else raising a child while dealing with their spouse’s memory related diagnosis?
Yes, all of these things and more have happened to me. I hope you have not only read this, but take this letter to heart and share what I have said with your staff. I am sure people here on caregiving.com will have many more ideas to share with you.