Caregifters Walk-a-Thon

I walked around my neighborhood yesterday to participate in this event. I was disappointed that Nicole wasn’t able to come with me but she is still having too much pain from her site change earlier in the week.

I was in some ways relieved that she didn’t come with me. This is something I hate to admit but I was embarrassed. I am not embarrassed by Nicole but by people and the way they look at me or act around me. I don’t think a lot of people in my neighborhood know about Nicole’s illness. Even if she was walking she would have been dragging her oxygen behind her.

I got a private message on facebook from someone I grew up with and while we use to be best friends and she has helped me through some difficult times we haven’t had that in many, many years. She had forgot to wish me happy birthday and apologized for that saying she was going through some stuff but it was trivial compared to what I go through. She also said “I think about you every single day and I wish with all my being that I could help… to no avail…” This really got me thinking…

I have seen a lot of people who I thought would stand by me since Nicole’s diagnosis that have walked along the wayside. I think there are several reasons for this. One is that they are uncomfortable around me. I have seen what happens when you tell someone you have a critically ill child, no matter what their age. Sometimes it seems that they can’t get away from you fast enough.

I also think that some people are uncomfortable because it is too hard to be around me because of my life/circumstances and I’m sure it gets depressing. I guess some of this is my doing as I talk so much about Nicole and the trials we face. Her medical issues encompass so much of my life. I try very hard to stay positive but sometimes it is hard to keep a positive spin on things that can end or be so negative.

My friend really made me think about what she said. What if some of my friends just don’t contact me or maintain a relationship because they don’t think that there’s anything that they can do to make things better. I know this feeling better than anybody having an ill child and not being able to make her better. For my friend and any others that feel this way… there are a lot of things you can do and I think I will use November which is Family Caregiver Month as well as Pulmonary Hypertension (PH) Awareness month to educate people.

I think another reason people are uncomfortable is because they assume that since I have so much going on, I am so busy, etc., etc., that they don’t want to “bother” me. I can tell you in most cases it isn’t a bother. I have no objection to you stopping by (except for you seeing my messy house), calling me on the phone, shooting me an email, text, private message on facebook etc. Don’t just assume that I am too busy and don’t want to be bothered. This is my decision to make as to whether I am too busy and have too much on my plate.

For November, I want others to know how difficult of a burden that we carry as caregivers. Everyday, I watch Nicole suffer in pain and with her struggle to breath something most of us (me included) take for granted. There are so many little things that you can do to make life for a caregiver easier but they mean so much. My next door neighbor will bring my garbage and recycling cans up for me twice a week when they come (unless I beat him to it and then I do the same for them) and frequently, but not all the time, he will bring my mail to me. This is something so little but it means a lot to me. It is hard to understand if you have never been a caregiver.

In closing, and trying to stay on a positive note, I have come to realize that while I would give just about anything to make Nicole well, I can’t do this… but what I can do is to make her life easier in any way that I can. If this means I do some things for her that she could do on her own than so be it. If people want to judge me for that fine… I can’t change their opinion but I would ask them to come and spend a day in my life before you do.

Profile photo of Jane

About Jane

My name is Jane and I care for my 19 year old daughter, Nicole, who has several congenital heart defects, Eisenmenger's syndrome and pulmonary hypertension which is a rare, life-threatening, incurable and progressive lung disease that causes blood pressure within the pulmonary arteries to become higher than normal. She also has several other health issues that are not as severe. I have two blogs one is "A Day in the Life" which chronicles Nicole's diagnosis and our everyday life. My other blog is "Let's Get Organized" which chronicles my struggle to get the clutter out of my house and get organized.

3 thoughts on “Caregifters Walk-a-Thon

  1. Profile photo of Bette

    Hi Jane,

    It’s sooo hard to move beyond wondering what others think. I know when we would go to a restaurant, many times I would jump to the conclusion and think we were “in the way” – six of us with a wheelchair. Or, at church, wondering what others would think as I tried to park the wheelchair in a small aisle where people would have to turn to their side to fit by us.

    So important to remember what you do Jane. It’s such a relief to know (really know) the impact you make for Nicole every day. That knowledge can push the other thoughts aside.

    I’m so glad you walked on Sunday. I thought of you! – we walked too. Caregivers coming together, spread the word about what is most important: Continuing to care for someone we want good things for.

    Thinking of you today (as I do every day) – and hoping Nicole is beginning to feel more comfortable.

    Reply
  2. Profile photo of ejourneysejourneys

    Hi, Jane — Getting over what other people think — or what I imagined them thinking — was a big hurdle for me, too. Thank you for walking and for everything you are doing to raise consciousness — and to educate people about caregiving and about PH. Thank you for being visible.

    I agree — a lot of people who aren’t caregivers don’t know how to respond. Maybe we can create an etiquette guide. :-) When a couple of long-distance friends messaged me saying they were sorry they couldn’t do more, I let them know that just being in touch with me and being there meant a lot. Many don’t realize that a little can mean so much.

    Reply
  3. Trish

    Jane, You have a lot of wisdom in this post. You’re so right that it’s your decision to make if you’re too busy and I hope people start to realize that for you. I think it’s wonderful that with everything you have going on, that you walked for CareGifters! You give so much to Nicole and you’re involved in this site as well as the PH org – you are helping others in huge ways. I hope you know what you do helps all of us. I have great admiration for you – big hugs, Jane!!

    Reply

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