Thanks for the offer, but...
I wanted to go for a bike ride with the kids, but we couldn’t.
I got invited to go to a movie with some girlfriends, but I couldn’t.
I feel as if we are isolated while sitting among others because Jim cannot carry on a conversation, and he can no longer be left alone, and he can’t come and go easily.
I understand being uncomfortable because it is so hard to understand him, but the kids and I still want friendships, companionships and conversations. It is so lonely to sit in a group setting of some sort (social gathering) and to be ignored, looked at with pity, contempt and worse of all, talked around.
As a social person, I fight each day not to get mad at my “friends” who have disappeared, or who just don’t know how to have a relationship with us anymore. I know they care, and they wish they could do something, but we need more than prayers.
We need help and not just words. We need solutions and true friendships that will sustain us through this most difficult time. We need actions and people showing up. But, I know, it is so hard to show up. It is hard for me to show up and I don’t have a choice. I have been pleasantly surprised by the new friends we have found and I have been bitterly hurt by the old friends we have “lost”.
How will I feel when all of this is over and they “show up” again? Maybe they won’t show, and I won’t have to ignore the fact they weren’t there when we needed them the most. Yet, I get it. What do you say? What do you do without overstepping?
Let me tell you…You just show up. You say you have no idea what to do, but you want to do something to help. You mean it. You don’t take “we don’t need anything” for an answer. You show up with a bottle of wine, a weed whacker, or shrill determination to actually sit with the patient for a few hours so everyone else can get a break.
It is much easier to just throw out shallow words instead of sticking by definite actions. But, that is what is needed.
I have many people offer to help. Honestly, I am extremely grateful, but right now, I am so overwhelmed and forlorn I could not possibly coordinate the tiniest bit of something right now. I wish I could take each person who has offered and tell them exactly what I need them to do, when I need them to do it and how I need them to do and let them at it. But I usually just thank them for their offer and promise to get back to them when I need something and they never hear from me again. And often, I don’t hear from them. After all, they have done their part by offering. It isn’t because we don’t need help. It is because I have no idea how to follow up or how to conclusively tell them exactly what we need.
Six years ago, I was able to plan a two week vacation for our family to Yellowstone and Glacier National Parks. We didn’t stay more than one night in each locale we visited. I spent months planning our trip. It was wonderful. At that time, I was so frustrated with Jim, and soon after, we started figuring out something was wrong. Now, I don’t think I could successfully plan a weekend away.
I am only adequate enough in my mental state to think of the day and hours ahead. Planning months ahead, being able to count on Jim’s ability to participate, and being able to be that organized is almost laughable. I sometimes wonder if I will ever be able to be that capable. Right now, I don’t feel adequate enough to do much, I am just thankful I am keeping the kids clothed, at the practices and lessons, and fed.
Life has a way of laughing at you when you need it, but I am asking for a break.
Can I please have a chance to enjoy the “good life”? No worries, no decisions, no sadness, no grieving, and certainly no worries about finances or changing clothes, wandering and agitation. What is that like? Has it really only been a few short years? It seems like eternity.