Tag Archives: Brain cancer

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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A caregivers poem

We promise to stay by your side, to be your guide.

….Even in the moments it feels as if the entire universe and our plans collide.

A compass in the wilderness.

Even when the task is vigorous.

We have a bond that only we could ever share.

We will do our best to ease your mind and show we care.

We won’t ask you to remember, or ask you to understand.

We will simply be here to hold your hand.

In the morning, joy will come… even though the night is proving to be unbearably long.

We will rise and stand strong.

When life is crashing like a turbulent wave.

When we feel like we’ve spent all of our energy on day to day tasks, we dig deep to that reserve of energy we knew we had to save.

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#CaregiverStrong

Being a caregiver to your spouse is a unique position to be in. Often it means you give up the hopes and dreams you had together. In my case, it also meant I stopped dreaming about my own goals and dreams. My entire focus has become Mike’s health and well being. I noticed this happen little by little…

“I will sleep in the hospital because he is too confused to be alone.”

“I will take a break from working.”

“I will cut up his food because he can’t figure out utensils.”

“I will shower him because he’s uncomfortable letting anyone else do it.”

“He has a hard time separating reality and television, so I will keep the tv off.”

“He needs to sleep, so I will keep it quiet.”

“He is in the bedroom resting, so I will just pull some clothes out of the clean laundry.”

“Loud noises are hard, so we won’t go to restaurants or crowded areas.”

Ultimately it turns into “No one can ease his anxiety or care for him as well as I can, so I will stay home.”

…Am I right? This is a common theme among caregivers.

Caregiver pamphlets always have elderly people on them. Has anyone else noticed that? There is a whole community of us that are younger and are facing struggles that no one can imagine.

There is so much life to be lived. You can still live fully alive, even while devoting your life to someone else.

Don’t. Give. Up.

More to come on this subject.

Just know you aren’t alone. #caregiverstrong

 

 

 

 

 


Featured Blog Post – Dustin

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Rebecca was amazing to sit down and write out a blog post to share how Glioblastoma has affected her life. I almost typed “her story” but there is no way to put “your story” into one blog post. I know she has so much more to share.  I’ve cried so many tears over people I’ve never even met since Mike was diagnosed with Glioblastoma and Dustin and Rebecca made a huge impact on me. As I look through these photos, the tears are flowing again. Rebecca, thank you so much for taking the time to share. I know others need to hear your voice and to know they aren’t alone.

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In Rebecca’s words…
“As I sit here with tears welling up in my eyes as I watch my baby boy graduate from kindergarten, my heart is so full of emotions. The moment is bittersweet. He’s grown up so much in the last few years and he’s looking and acting more and more like his daddy each day. His daddy should be here though. Dustin should be here proudly watching his son walk across the stage from Kindergarten to first grade, but he’s not. GBM took this all away from him. GBM robbed Dustin of all the experiences and proud moments of fatherhood, and GBM robbed Michael of a normal childhood growing up with his daddy proudly looking on. It’s hard to believe it’s been almost 5 years now since Dustin succumbed to that horrible beast. As you can see, the havoc it wreaked on our little family continues on to this day and will for our lifetime ahead. The pain and wounds may ease a little with time but the scars remain embedded in us forever. In what are supposed to be happy, beautiful moments in life like our son’s kindergarten graduation, these wounds reopen and become fresh scars that weep. The most memorable happy moments in life are also now some of the most bittersweet.
Becoming a widow from GBM at the age of 29 gives you a whole new perspective on life that most people never receive until late in life. I would never wish the GBM nightmare we went through on my own worst enemy, but I do wish others could have the perspective I have now.
When Dustin was diagnosed in late November of 2012, our son Michael was only 8 months old at the time. Dustin passed away just 8 months later, barely getting to see Michael complete his first year of life. The amount of suffering Dustin endured was immeasurable. I can only liken it to Jesus’ suffering on the cross. The tumors, the surgeries, the endless chemo and radiation treatments, the grueling hours of physical therapy, and the side effects from the countless medications all took their toll on him. He fought so hard to no avail, and to think he was a healthy elite athlete prior to GBM entering his life. In fact, he had run an ultramarathon (74 miles in 24 hours!!) just 2 months prior to his diagnosis. He was the epitome of excellent health and only 28 years young. GBM shows no mercy and knows no boundaries. It can send the healthiest, youngest and full of life people into heaven way before their time. Dustin wanted so badly for it to be in God’s plan for him to survive through this nightmare. To beat the beast. To watch his son grow up one day. We’ll never understand why it wasn’t. Dustin’s suffering touched so many lives though, and to this day I still receive messages from strangers telling me how much his suffering and story changed their lives. I like to think God used Dustin’s suffering to help others who needed to be woken up to Christ in their own lives. This is the peace I hold onto in making sense of it all.
I’m a changed person from this horrific journey we were forced to partake in. I have learned so much about myself and about life. Life is so short. In an instant life can change forever. You gotta live in the moment and have no regrets. It’s sooo important not to take a single day we’re given for granted, because tomorrow is never promised. In an instant GBM came in and plucked my husband, our home, our jobs, our life as we knew it. It left me widowed with a 16 month old baby to care for and no direction to go. I felt like a stranger in my own life. How could I possibly go on without my other half – the person I loved more than anything and who loved me more than anything, who when anything and everything went wrong in life, was always there to help lift me up. How?? How would I do this? Life seemed impossible now. When Dustin died I felt like I died with him. Or maybe it was because I wanted to die too. My heart literally felt like it was ripped out of my chest and was bleeding my tears. I now understand how people can die from a broken heart. Dustin and I had shared almost half our lives together. How could this be it? How could I be expected to do this alone now? And how could I possibly raise our precious baby Michael all by myself?? WHY?? Why did this have to be this way?? Life is so unfair sometimes.
I could’ve given up. I could’ve allowed GBM to indirectly take my life too. I’ll admit it, I wanted to give up. Grief can make you crazy and make you do crazy things. I probably hit my lowest of lows at that time, but hey, wouldn’t you too? But something kept me going. If it weren’t for my baby Michael, I wouldn’t have had a reason to get up in the mornings. He played a big role in my saving grace. But the biggest role was played by the big man upstairs.
On Halloween night about a month prior to Dustin’s diagnosis, we took little Michael to a trunk or treat Halloween event at a local church. There we received a tiny fortune cookie and in it was a Bible verse. “Trust in the Lord with all your heart” was written on that tiny little piece of paper. There was no way of foreseeing what would happen in the coming months and little did I know the role that little fortune cookie would play in my life shortly thereafter and for the rest of my life. I took a photo and hung the fortune on the fridge that night not really even knowing why. It just resonated with me for some reason.
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(This verse actually is from Proverbs 3:5)
The day Dustin was diagnosed I bawled my eyes out staring at that same little piece of paper. Somehow I knew God put it there just for me. I took it off the fridge and placed it in my wallet where I still have it to this day. It became, and still is, my lifeline to God. Throughout Dustin’s GBM battle I held onto that Bible verse with every ounce of faith I had. I nearly screamed in helpless frustration on a daily basis. A few times I yelled at God for making us suffer this way, begging for his mercy. The mercy I was looking for never came, but instead He kept directing me back to that bible verse and amazingly it strengthened me. One night as I wept next to Dustin’s hospital bed, I remember feeling that I had lost all sense of control. I realized that I was powerless over everything and I couldn’t fix Dustin or the situation. It was the most awful feeling I had ever had up until that point. I remember yelling and pounding my fists on the chair at God to give me something, anything. I suddenly realized He already had. He gave me that verse — Trust in the Lord with all your heart. I suddenly realized I wasn’t completely powerless. God gave me the strength and power to turn it all over to Him and place all my worries, fears, anxieties, all of it to Him. In doing so, I realized there was one thing I COULD control and that was my attitude. I could be resentful, angry, miserable, and sad, OR I could give it all to God and be hopeful and focus on the positives, however little they might’ve been. From that day on, I promised myself and the Lord that I would place my trust in Him and let Him take care of the rest. My burden was immediately lifted. It’s amazing the power God has in your life if you let Him in.
It’s all about casting your cares on the Lord. Without God in my life, I know for certain I would not have been able to withstand the storms that GBM threw at my family, and I know for certain I would not still be here today. I couldn’t have trudged through hell without God carrying me through. He gave me light in my darkness, and I chose to see it. After Dustin died I decided to take Michael around the country running races while pushing him in the stroller to raise money and awareness for brain cancer in Dustin’s memory. We checked a few things off his bucket list too. I wanted to keep Dustin’s spirit alive and I ran with Dustin’s running shoes in the bottom of the stroller so he could be with us the entire way. I ran and still do, because I can. I owe it to Dustin, Michael, and to myself.
I’ll never understand why GBM took Dustin away from all of us so soon and what the purpose was in God’s plan. But I do know that when you trust in the Lord and give it all to Him, he will lead you wherever you are supposed to be. We all have a purpose.
It’s been almost 2 years now since I married Jeff, a wonderful loving man whom God brought into mine and Michael’s life with a purpose. Michael is now a big brother to his little sister Kaia Grace, whom he adores.
Because I trusted the Lord, I was able to open my heart to love and be loved again. Out of the ashes, God has created something beautiful. The heartache of losing Dustin will never end, and I will deal with this heartache as long as I live. It certainly hasn’t nor will it ever be easy. But the beauty of it all is God gives us endless capacities to love and be loved. As I watched Michael, who is now 6 years old graduating from Kindergarten, I can’t help but smile too amongst my showers of tears. Although his angel daddy Dustin is not here physically to witness this memorable milestone in Michael’s life, not only is he always protecting and watching over him from the heavens but he’s so very proud of him. Additionally, Michael is blessed with a second daddy to love him and be loved by him. His earthly daddy Jeff will be there as a father to catch him when he falls, and help guide him through the good, the bad, and beautiful moments of life. I couldn’t be more grateful. It isn’t the ideal life or scenario, and certainly not what I had imagined for our life, but nonetheless I choose to be thankful instead of bitter for every chapter in my book of life, and I’m grateful for all the blessings He’s bestowed on us. The scars of losing Dustin will always run deep, for once you’ve loved and been loved by someone, that love always remains. However, I know for certainty that he is ultimately in the place we all want to be in the end — with our Lord and Savior Jesus Christ — and someday God will reunite us all again. Until then though, we must trust in the Lord with all our hearts and continue to live life to the fullest each and every day, no matter how tough it may be.”

Look what the Lord has done!

I had an opportunity to hang out with Revival Worship Movement at the Chesapeake Jubilee this past weekend. If you know me or have read this blog, you know I can go on and on telling our story. I have a lot of words to say! There are SO many layers to it and it’s actually 22 years in the making. It all started with a prophesy 22 years ago when God said “I will turn the heart of one around. Your prayers regarding his life will come to pass.” We’ve seen physical healing, family healing and heart healing. As I stood there during that worship song, I realized God didn’t want me to beef up our testimony with lots of words this time. This time I was just to share briefly enough to say “Look what the Lord has done!” I don’t think I’ve EVER summed up our testimony in less than 2 minutes, even with a random person at the grocery store. It was a simple message of hope. Thanks to Terrance Howell and Revival Worship Movement for giving us a chance to share what God has done.

Untainted Love by Revival Worship Movement is available for purchase at the following links!  Amazon  Google Play  Itunes  Spotify Tidalshauna


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


April 2016 – Great Wolf Lodge, Williamsburg

Sometimes you just have to step away from everyday life.  We spent a few days at Great Wolf Lodge in Williamsburg.  Between the wheelchair for Mike and him not being able to last long or be left alone, the baby, and Kenzie wanting to play – I couldn’t have done it alone!  I’m thankful that I have family that helps.  He struggled with not feeling well and wouldn’t have been able to walk around so the wheelchair was a must, but he wanted to be where we were. When I was in the water with the kids, I’d often look up and see him there in his wheelchair with a big smile and waving at us.  Great Wolf Lodge is the perfect getaway for us because Mike can go back and forth between napping and the fun. It’s pretty close to home and the hospice company is able to set up a backup plan close to the hotel if he needs medical care while we are there.  As long as I have enough people around to help, the kids can just have fun all day and Mike can pop in and out of the fun as he feels up to it.  I already can’t wait to schedule another trip to GWL!

Look at our crew!

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