November 2016 Just surviving isn’t enough.

Life is overwhelmingly demanding for me these days. My business is going awesome which means it needs time. My priority is Mike and the kids, but having this established income down the road is so important to me just in case.  Mike is so toddler like. – only like a toddler in a grown up body. He has the best heart. He wants to help always. I try to focus on how sweet it is that he wants to help and not get mad that he is emptying closets and rearranging furniture. lol He’s exhausting though.  When the baby was a newborn he tried to feed her a Subway sandwich.  Now he tries to hand her a whole pie or a bag of pecans. He just can’t understand.

Tonight Mike was being anxious about trying to feed the baby things she can’t have. Kenzie smashed her finger in the door. Mike was trying to pick up pieces of dirt off the floor and stood up and hit his head quite hard on the corner of a shelf. The baby was fussy on my hip and getting heavy. In that moment I just wanted to be on a beach somewhere.  In that moment I didn’t feel incredibly blessed and thankful for my life. I’m pulled in so many directions at any given moment.

I will say though that Mike is so appreciative. No one will EVER love me like Mike loves me.

I really need a home health aide to help with Mike. It is an out of pocket expense that I think I might be able to do now that I have LuLaRoe income coming in. It’s just hard to pay someone else to do things like shower and dress him when I can do it. This week I did start someone twice a week just for a quick shower and shave. I’m looking for another one also. It’s just mentally draining having to bathe 3 people before myself every day. I start with helping Kenzie get her shower, then I bathe the baby, then I have to shower Mike and get him dressed. I’m exhausted by the time its my turn.

Mike hates that he knows his brain doesn’t work right. He knows there are things he wants to do to help. He will empty the closet and want so badly to finish the job but he just doesn’t have the mental capacity to do it.

So thats where we are. I don’t use the word hope much anymore…what is there to hope for? If this is as good as it gets – “surviving” – That’s hard. I do still hope for a miracle for restoration for Mikes brain and our family. Just surviving isn’t enough. Not after this long. It has been 4.5 years of surviving…we want to live again. Survival mode is tough.

8 responses to “November 2016 Just surviving isn’t enough.

  • Shannon

    God bless you.

  • Nancy

    I can only imagine. Just having my husband have short-term memory loss is hard some days. I hate what this disease does to the people we love. But I must say – you are very inspirational for me. Thank you for sharing.

  • Melissa

    I think you are doing an amazing job! I pray that you are able to get some help to make things easier for you and your family!

  • Shelley Posey

    Thank you for your honesty. I feel overwhelmed myself and HATE the survival existence. It is truly tiring and I don’t have all your responsibility. My heart hurts for you. May God sends his angels to help you.

  • George Duffy

    Great! I finally found someone who is in (almost) the same shoes as me. My wife is 55 months post diagnosis. Her GBM came back once and after more chemo it seems to have disappeared but the oncologist and I know better. She was a vibrant loving wife, mother and grandmother. She could powerwalk my butt into the ground. It all changed one Saturday afternoon when she collapsed in seizure on our living room floor. Thank God it was a weekend and In wasn’t at work. Our “normal” life now revolves around caring for the love of my life. I know what you are going through as well as you know what I’m going through. I too want to escape but then I think, “where will I go?” Thank you for your blog.

    • Joe Beneziano

      My journey just began in November in the same way yours did with her collapsing on the floor with no prior indication. Three years ago we went through breast cancer and I cared for her then. She recovered and was doing great until this beast hit her. She too is the love of my life, married 41 years. I hope we can have some more time together. I would like to keep in touch with you for whatever you can share. Thanks

  • Susan Green

    Thank you, Shauna, for your brave honesty. GBM took my son 2 years ago, just a few months after I discovered your blog. Being his full-time caregiver for 18 bedridden months, while working full time from home, sucked out every bit of strength, physical and emotional, I had. That you have been running your endurance race for 4.5 years is beyond my ability to comprehend. Mike, your children, and your grandbaby, are so blessed to have you! If it’s possible to send strength, comfort, and understanding to someone, there’s a ton of all of them headed your way from me.

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