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Caregiver Thoughts on Understanding

Joan Pinard of Massachusetts shared this information she found to help caregivers, and those they care for, understand each other better.

As your caregiver,

lease remember I can’t read minds. I don’t mind doing things for you, but I need to know what you need done.

Please talk to me in a respectful, conversa- tional tone of voice. Do not shout, argue or tell me what I am doing wrong. A simple ‘please’ or ‘thank you’ with an occasional ‘I really appreciate how much you do for me’ will work wonders! Trying to see my point of view is helpful.

Please do not expect me to do things on a moment’s notice. Yes, there are things that must be attended to right away, I get it. Help with the bathroom, etc., are time-sensitive but many things are not.

So, it’s better to simply let me know that you are going to need me to do specific things for you or go to the store to pick up something. I can’t and don’t want to make multiple trips out of the house. If you suffer from memory issues, keep a pad and pen with you and write things down.

Remember, there are other things on my schedule. Work not only puts food on the table and pays the bills, it gives me a bit of a respite. I need to get out of the house. I need time to recharge my battery. Care- giving takes an extremely emotional toll on the caregiver. It’s mentally exhausting and often I feel unappreciated. I will need to connect with friends on a reasonable basis. I’m sorry you can’t come, but truly, it’s necessary for me to maintain my sanity and well-being.

I know you are in pain. I know you are anxious. I know you are frustrated. No need to tell me every half hour that I don’t understand.

Lastly, and this one, really is important to me and ties in with all the others: Please don’t ask me to do something, wait until the exact instant I sit down or lie down and tell me you need something else.

As the person cared for,

caregiver, I want you to know I truly am in pain. I have horrible fatigue.

I am frustrated, tired and angry at my situation. Sometimes I am not going to be at my best.

Sometimes I just need to talk. I agree, shouldn’t constantly be shoving my illness in your face nor should I constantly be in a bad mood. But I need you to understand what my illness is so that I have someone to talk to once in a while.

I understand that taking care of me is hard. I wish I could do more. I do. But please, when you do something for me, please try to be pleasant. Don’t show your impatience. A good attitude will go a long way.

I take many medications that have side effects. I may not be the person you mar- ried or the person you used to know all the time. Please understand that I wish I was my former self too.image127

Take time to understand what meds    I take and why. It’s important because I need you to help, to make sure I am taking the right meds at the right time. I get con- fused and can stare at all my meds forever with a blank look on my face because I’m

trying to remember something and just can’t figure it out.

Help me figure out ways I can be an active participant in our family and friends lives.

I can’t read minds. If you’re feeling overwhelmed or there is something I can help you do more easily, tell me. Let’s talk about it.

Just as you miss the old me, I miss you. Sit with me. Talk to me about your day. Make me laugh the way we used to laugh before I fell ill. Spend time with me. Just because I’m stuck on the couch doesn’t mean I don’t want some company.

I know you are overwhelmed and work- ing hard. Please don’t remind me.

Please don’t get angry if I have to cancel plans at the last minute. By all means, you go, have a good time, but I may not be able to attend.

Thank you, daughters, sons and caregivers for your devotion to those who depend on you!