Tag Archives: Christian blogger

The caregiver life, hopes and dreams

You can’t imagine the frustration of wanting to leave the house but not being able to on such a long term basis. This summer I have had more freedom than I have had in a long time. Lately with my oldest and the grand baby not living here I’ve had many opportunities to leave my son in charge at home and leave the house. It’s been amazing, but tomorrow school starts and I won’t have the same freedom and backup like I’ve had over the summer. Over the years I shelved personal hopes and dreams. I had to come to a place where I was completely content having my life revolve around being home and taking care of Mike. As school starts tomorrow I find myself reminding myself that home is where I belong and that I can have complete contentment right here at home. It just takes some rebalancing and centering of my thoughts. I have taken on some work days with a photography company, starting hanging out with new friends, going to church again and have gotten a taste of life outside the house. It’s bitter sweet enjoying the freedom but it being limited. 

Its one thing to have kids and find a babysitter, but I find myself with no options for a “sitter” for my husband. (If there was an emergency I have people who will drop everything and be here. I’m talking about just wanting to leave the house) I know there are private companies, nursing homes, adult day cares – but for one reason or another they are not the answer for us. His comfort, our finances, etc.

I need to blog more on the daily life of caregiving. I think people don’t realize the intensity of caring for someone who can’t care for themselves. Mike was up at 3am hungry. He can’t even pour a glass of milk, make toast or a bowl of cereal. So yesterday morning I was up at 3am and took the opportunity to shower him. He can’t shower himself and he often refuses to shower in the moment. He always says “later” but later never easily comes. So I showered him, dressed him and fed him. Then I let him lay back down. I spent some quiet time with God thanking him for the blessings in my life (because there ARE so many blessings.) I prayed for peace over the house and an ease to take everyone out to church. I loaded up the wheelchair and we went to church. While we were out I decided to push our luck and try a fun outing. Mike started to complain of feeling weird, overwhelmed, exhausted, and head hurting but we went for it anyways. We ended up having a beautiful day out of the house.

There are so many dynamics to being a caregiver to someone who has brain issues. There is awkwardness when a waitress asks a question and he doesn’t understand. I have to keep in mind that he gets confused with utensils easily so I either have to cut up his food or order him something that won’t confuse him.  There’s the blindside and the fact that there is a likely chance he will swipe anything off the table that is to his right. The fact that many places do not have family restrooms and he isn’t stable to walk well on his own often. The physical toll of lifting him when he can’t stand. The physical toll of lugging around a wheelchair and getting him in and out of the van and in and out of the wheelchair. The fact that he can’t be left alone ever…at home or in public. If I were to take him somewhere alone I can’t leave him at a table or in a church service to go to the bathroom. That many times places just aren’t really handicap accessible. Don’t take this as complaining; it’s just awareness. There are family members out there of caregivers that have no idea what they really go through and I barely scratched the surface. Many are completely bedbound. As hard as life is with Mike, I am passionately thankful for th me aspects of our life that are blessings.

I will continue to be so thankful for his life. Many others like John McCain don’t have the chance to live 6 years after diagnosis like Mike.

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As I was scrolling through photos. This one came up. This was a day I was able to leave the house and was really excited to come home and tel Mike about my day. He wasn’t mentally there for conversation that day and slept the entire day. This is the norm. He spends most of his time in bed. I try to stay lighthearted about it so I laughed about him rolling over and going to sleep when I tried to talk to him. I might get mad at our situation but I never get mad at him or take it out on him. This isn’t the life he would choose either. I hope something in this blog touches you in some way. I hope it brings awareness or comfort depending on your situation.

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Because May is brain tumor/brain cancer awareness month…and because I look back at the last 6 years since diagnosis and say “Look what the Lord has done.” 

We aren’t any more worthy than anyone else and I don’t understand why I’ve seen so many amazing people lose their lives here in earth to Glioblastoma and why Mike is alive – I do know many lives have been touched and I knew in 2012 to start my blog so people could follow because I felt that God was going to use our situation for something big. I just felt like there was a bigger picture all along. I accepted the prognosis. I prepared, I planned a funeral, we made sure all affairs were in order. We found peace. I have gone through some lows and have been exhausted too, but 90% of the time in the past 6 years I’ve held strong.

Mike’s surgeon specifically told me not to even bother with a second opinion. That’s a huge part of my memories and a huge part of knowing God was in this from the beginning. I’m a people pleaser and I had to learn to stand up and fight back. To be an advocate for Mike and not accept just whatever I was told. His surgeon was amazing and I know every person we dealt with had a purpose for our lives. But I remember by discharge I already knew I was taking him to Duke and I had kinda asked the surgeon his thoughts on a second opinion at Duke or MD Anderson before starting treatment – he said no, not to even consider it. To contact a local doctor – which by the way, there is no a treatment that will cure GBM – chemo and radiation is just a way to buy some more months of survival. God put us on someone’s heart before Mikes surgery even happened!! She gave me a heads up on GBM and told me about how amazing Duke was before we had a diagnosis, I ALREADY knew that if I heard “GBM” that we were going to Duke for more options. She told me she knew Duke gave her extra precious months with her husband before he passed away. The Brain Tumor Center at Duke gives hope and options sometimes when other doctors don’t. Sometimes they just can’t, but I was told to get there fast (before starting any other treatment) for the best chances of having options. 

GBM is a horrible diagnosis. But it wasn’t a death sentence for Mike. Even if he would have died within that first year, GBM brought Mike into a place of eternal life. And not only Mike! So many lives have been led to God through this. CA71A330-7CDC-4F1F-A466-28CF909484E8