I try to remind my husband and my kids that I can do a great deal for myself. I actually try to do as much as I can while I can. I know they want to be helpful and I love them so much for that. I have quite a few friends and family members that offer to help or cook for me and I appreciate them as well. I know that it can be strange on my bad days for the people that love me. That is because I may feel pretty good on Monday and then on Tuesday I am completely knocked down. So the help I didn't need Monday, I need on Tuesday. It's like a roller coaster. You just learn that nothing is predictable.
My family will come and sit with me and talk to me and play with the kids. I enjoy them. However, I see in their eyes that they are worried and concerned and sometimes uncomfortable. I find myself trying to comfort them or convince them that I will be okay. I have even had to tell them that they will be okay. It has become so complicated when it it is actually quite easy,
We get that you are worried. We get that you want us to be okay We get that you want to be helpful. We just don't always want to be "sick" in your eyes or needy in your eyes. We want you to enjoy our good days as much as we do. I know that this journey is hard. I know that it seems like there is no happy ending sometimes. But the truth is as long as we can do things and go places and have fun, let us. Don't feel like you have to protect us all the time. I will be honest, most of us that are dealing with these incurable diseases are pretty tough and have a great deal of life left in us.
I see how my mom looks sometimes or we will be on the phone and she sounds so sad. I ensure her that even if I am in a bad moment, I will come out. I just ask for prayer and positive communication. We usually end the conversation with me making her feel better about me. Now that can be overwhelming. Only because I can not assure her of anything I am not sure of. I can't give all my energy in to trying and convince my loved ones that their feelings for my situation are valid or invalid. We have to respect one another's positions in this battle. I encourage my sons to journal what they are feeling. I am not always able to comfort them like I want to on the worst of days. But we can go back over their journal when I feel better and we can talk about it. They get it.
My words of advice are simple. Feel what you need to feel but respect what I feel as well. Try not to put the person that is sick or depressed or grieving in a position where they have to comfort you for how they make you feel. It just isn't fair. I encourage support groups for caregivers and people that love anyone that is in a battle at the moment. You need support just as much as we do. There are many people out there who are feeling the same way as you are. They want to do more and help more and understand more.
In the meantime, relax. Even though we are going through, we still love to laugh. We still love a good hug or kiss or just a high five. Stay connected with us. There will be so many days that we NEED YOUR HELP. Then there will be days that we just NEED YOUR PRESENCE. Be there when you can and do not make a big deal when you can't. We actually understand. So as a person that is watching the fight from the sidelines, you offer support. But you never create pressure. Take our good days and help us enjoy them. On the bad ones, you will begin to instinctively know we need help. We love the people that care for us and look after us but try not to make us feel like we should be taking care of you.