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Thanks for the offer, but...

September 8, 2015

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.

Thoughts and stories from others

  1. March 1, 2016 at 07:18 pm
    Posted by Karen Anderson

    You are not alone, I know the feelings you have, sometimes it is difficult to put one foot in front of the other, but we do it for the kids, and for our husband, who doesn't really realize anything is wrong. My husband (Jim - how ironic?) has developed late stage dementia quickly (over a few weeks) after suffering hemorragic strokes and seizures. I am disheartened that his friends of 35+ years have not made an effort to even call. There are 2 good friends that don't ask what they can do, but show up and do it, just so I don't have to worry.
  2. September 13, 2015 at 07:49 pm
    Posted by Jamie

    Thank you for writing, though I am sorry for what you and your family are going through. I understand how difficult it is. You are doing a good job, keep reaching for help. God bless all of you.
  3. September 11, 2015 at 01:13 pm
    Posted by Angela

    I feel the same I am 50 my mother is 70 she is the arguing one towards me. I feel like I am losing realty or sometimes I indeed want to. She has demintia and lukemia she is starting not to eat , I am failing as a caregiver. Sometimes I think this is a test of my faith; I know I will get through this but I believe all caregivers give their sacrifices and we may not get to live that carefree life and maybe never will after our loved ones are gone but I have to believe in my heart we will be given that wonderful "carefree life" if not here we will in heaven.
  4. September 10, 2015 at 05:38 pm
    Posted by greta

    I am so sorry you are going through this. I am a caregiver as well and have experienced the offers of help that need my direction to make them happen...I have to give my friends some slack because, unfortunately, if the shoe was on the other foot, I may not be of help to them either. I'd like to think I would, and I have certainly stepped in to help in the past, but I'm not sure if I can give much more after what I'm giving to the ones who need my care. In any event, keep your chin up. Give you kids and hubby a hug from me, please. And one for you as well.
  5. September 10, 2015 at 01:02 pm
    Posted by Sheridan Rondeau

    I felt the same way when people gradually but consistently abandoned us when my husband's condition became uncomfortable for them. It was a deep disappointment of course, especially when caregivers like us do need a few whiffs of fresh air and a change of scene from time to time. It's hard enough to stay positive and not let these changes tear us down, I believe that people are fearful and cannot cope with the possibility that one day they could be either a caregiver or the one being cared for. They don' t mean any harm, it's simply easier to turn away.

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