Tag Archives: speak life

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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“I’m proud of you”

At about 1am after an exhausting day, I finally got into bed to sleep knowing I had to be up by 6am.  Mike talks a lot as I’m trying to fall asleep and he kept saying “I’m proud of you. I love you.” And guess what, I woke up proud of myself.  We have been together for 18 years and a lot of negative words were spoken in those 18 years. A lot of people who know us now would be surprised at the struggles we had. I’m pretty transparent about our lives in hopes to help others. Words are SO powerful.  They have the ability to speak life into someone or totally tear them down and destroy them. Words have healing power. Do we want to build up our loved ones or destroy them?  Use your words wisely and speak life into those you love. Words are creative.  Negative words can creative a slew of destruction including insecurity and doubt. Negative words cause pain. Pain causes destruction. Negative words can destroy marriages and relationships. Positive words can CREATE. How COOL is that when you really think about it?  By what we speak, we can create hope, love, encouragement, excitement, motivation, relationships! I could go on and on.  I think all too often we like to blame someone for their actions against us but we take no responsibility for our words or attitudes towards them.  Our words don’t even have to be specifically against them to destroy a relationship with them.  Negative words are not going to return to us in positive actions for the most part. It takes a whole lot of grace to respond to negativity with something positive. I’m not saying I’m positive all the time. Yesterday was an emotional day for me and I ended up in tears several times. The thing is, I don’t unpack and live there.  Facing the tough parts of life and then focusing on the positive is not only my goal. it’s my survival strategy.

We have a responsibility to speak life into those we love. This is so important for those with brain cancer and their caregivers too. If you are suffering and you have a caregiver, you can breathe so much LIFE into them by thanking them. Build them up with words, tell them they are doing a good job and that you appreciate them. I bet they will be motivated to take even better care of you. If you are the caregiver, you can build up your loved one by using words to show them they are NOT a burden to you. Let them know it is an honor to care for them.

Sometimes with brain cancer, depending on what area of the brain is damaged or where the tumor is located,  no matter what you do, there is anger and aggression.  (It’s not limited to where the tumor is located. Sometimes the brain has swelling and that swelling causes pressure to another area of the brain.  Different areas control different functions, but swelling can cause your loved one to have functionality issues in different areas.)  It’s hard to let those words and actions bounce off us as caregivers. It’s hard to not let that cause damage to us and our relationships.  I personally pray for grace in those moments. I’ve prayed for protection over my kids that in those moments that there is a hedge of protection around them.  I’m trying so hard to lead my example for my kids. If they see me act in patience and kindness, they are more likely to do the same. I learned this the hard way. When I react to some of Mike’s behaviors with frustration, the kids do too.  I don’t always succeed, but I do better than if I didn’t try at all.  I’m human and my first instinct isn’t always to act in love and kindness. This is an interesting graphic about what areas of the brain can affect different functions. It is interesting to see because Mike’s tumor was discovered in his left occipital lobe and he can’t read because the letters don’t make sense anymore.

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Functions of the brain

Proverbs 15:1 ESV
1 A soft answer turns away wrath, but a harsh word stirs up anger.
Ephesians 4:31-32 ESV
Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice. Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you.
I figured I’d also share a photo of me and my grandbaby in our matching LuLaRoe leggings!  I have a whole blog post to share about being a caregiver and taking care of ourselves, so you will probably see this photo again as I’ve just recently stopped living in pajamas and actually getting dressed and taking care of me again. It was totally normal for me to shower and just change into another pair of pajamas each day because I didn’t see the point in getting dressed when I knew I wasn’t going to leave the house.
LuLaRoe Leggings

Here’s my grandbaby rocking matching LuLaRoe leggings. They aren’t just for Mommy and Me, we like to “Grandma and Me”