I blew it. BIG TIME!! As a caregiver I've tried to not burden Mr. B with some of the frustrations that I go through in this journey. That's the main reason that I started this blog. I wanted a place to vent without it impacting Mr. B.

But today I messed up. I was venting to Mr. B that I was sure there was talk behind our backs about how much of an imposition it was for people to drive us to his appointments. This week has been especially hard because he ha needed to go every day to the treatment center for IV hydration. Like a bolt of lightening, Mr. B jumped out of his chair and as fast as his walker would take him, made a bee line to our bedroom. I immediately knew that he was upset when he said that he needed to be alone. I started to follow him and he slammed the bedroom door closed. By the time I got to the door I could hear him sobbing loudly. I felt TERRIBLE for causing him this kind of emotional pain. What kind of an idiot am I? I held him and told him that I was sorry at least a dozen times. I said that I would work on my fear of driving so that I could take us to the treatment center and then we wouldn't have to rely on others for that. How could I be so insensitive?

There is so much to learn on this journey of being a caregiver. So much of it is uncharted ground with no road map to guide me. I know that I will be travelling blindly at times and will make mistakes. I just hope that by sharing my mistakes I will help other caregivers to not make the same ones.
Willa
6/29/2012 02:40:28 am

Shelley,
Please try not to be so hard on yourself. As caregivers, we will make mistakes. The important thing is to be able to talk to our husbands after we make them. My husband feels incredibly guilty about "putting us through this" and my response is always that he didn't choose this so he shouldn't feel guilty. We've had ups and downs in this short journey (he was diagnosed last year). I've made many mistakes too.

I wanted to thank you for sharing your feelings so eloquently. My husband is also fighting with a very agressive myeloma. We have tried all of the drugs currently available and he isn't responding to them. He now has a fungal infection and I'm worried about pneumonia. Your last blog entry described my feelings exactly and it was good to know that I wasn't alone in having them. You see so many postive stories in blogs, newsletters (which is great for those who are doing well) but you don't see too much on the people struggling with the agressive myeloma. It made me feel very alone until I read your entry. You write so well! So know that your blog is making a difference to me and my family. My thoughts and prayers are with both of you. Keep strong.

Fellow Canadian,
Willa Schwarz , caregiver to David

Reply
Shelley
6/29/2012 03:43:36 pm

Thank you, Willa, for your kind words. When I started this blog, I was expecting that this journey would take 5 or 10 or even 15 years. So I thought that having a blog was a good way to record the events as they happened plus give me a safe place to unload my feelings. Little did I know that my husband would have a very aggressive form of MM. So although I'm happy for those patients that are doing well on treatments, I'm also a little jealous that we are not seeing any of these positive results.

I'm glad that you shared that your husband also has an aggressive form of MM. It helps to know that I am not alone in this solitary journey. Because I really do feel alone on many of the days. As caregivers, we are the ones that see our spouses 24/7. We see how they can change from hour to hour. We see their tears and hear their cries of pain and it's heartbreaking for us.

But I had to giggle when I saw that you wrote that I shared my feelings so eloquently. Writing has always been a very painful thing for me. In school I hated English. If I had to write a creative story about the picture on the blackboard, I simply froze and I would stare at the empty page for hours. So it was no surprise that I made a career decision to go into the accounting profession. I'm much more comfortable around numbers than around words. LOL

Reply
willa
7/1/2012 09:10:35 am

This agressive myeloma is very difficult to deal with. We are about to try the only medication that he hasn't had yet and it will be our last option if some of the new drugs aren't out soon. The battle continues.

It was funny to hear that you didn't like writing. I am an accountant as well and writing is not my strong suit. I agree that numbers make much more sense!

Take care and know that there are others out there like us. Stay Strong.

Shelley
7/1/2012 02:42:49 pm

Willa,

I will be thinking of you and David as you try this new treatment. Please keep me posted on how things are progressing.

And please keep posting comments. They are a real encouragement to me.

Thanks!

Reply
6/29/2012 05:17:58 am

Dear Shelley,
We all make mistakes as we navigate through the world of MM. Thank you for being open about how hard it can be to care for our loved one, while dealing with all the situations it presents. There will always be lessons for all of us to learn along the way, to be sure. Sharing does help others!

Reply
Shelley
6/29/2012 03:47:21 pm

Linda,

I just hope that I can remember these mistakes and not repeat them again. The price that was paid was too dear. Seeing my husband's reaction totally broke my heart. I don't want to be responsible for causing him that kind of pain again. :-(

And you are right! Sharing does help others! But mostly....sharing helps me. :-)

Reply
Peggy
6/29/2012 03:06:11 pm

Sending you a big warm hug.

Reply
Shelley
6/29/2012 03:48:34 pm

Thank you, Peggy.

Hugs gratefully accepted.

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Mary
7/2/2012 04:07:38 am

Shelley, I hadn't seen any of your blogs until today. Thank you, from the bottom of my heart, thank you.

Reply
Shelley
7/2/2012 01:50:45 pm

Welcome to my blog, Mary! Are you also a caregiver?

Reply
Mary
7/3/2012 05:32:53 am

Shelley, I am. At least I try to be.




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