Tag Archives: gbm caregiver

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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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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GBM caregiver thoughts and update – 39 months past diagnosis

I’m enjoying being a Scentsy consultant because its something I can do mostly from home and it brings in a little bit of income. (and it brings in a lot of my favorite product! lol)  I’m thankful to have some busy work to do this morning as I sort orders and organize parties. I’ve always been one to stay busy, so not being able to leave the house due to Mike’s health is a huge struggle for me. At one point in our marriage, Mike was deployed to Iraq for a year so I was raising the kids alone that year, I worked full time, and attended college online full time…since then I have learned to find a healthier balance of not always having to be so busy, but I still don’t do well staying still for long.  I’m constantly tempted to continue my college education online again, but with our teenager having a baby coming soon, I just don’t know how much I can handle at a time.  Life is guaranteed to be busy for awhile. I’m so guilty of taking on too much and then being overwhelmed.  I’m thinking maybe I actually haven’t found that healthy balance because as I typed that I thought “I should do it, I should sign up for classes online!”  It’s hard because I know I need to be here to take care of Mike now and he can’t be left alone, but I also struggle with all the uncertainty in my future.  Looking back, none of my “future” plans have ever worked out the way I intended them to.  I can’t help but feel like I should be doing something now to plan for the future…but I don’t know how to plan for the unknown and try to set a foundation for anything when my entire life is on pause in a way as unsettling as the sole provider having a terminal illness… Mike has always been the financial stability in our family, even when I did work full time.  Being a military family and moving often, that’s just how it played out for us.

Mike is doing well.  I’m amazed daily at the fact that he is alive and he has been out of bed every day for at least 4 hours for the last couple of weeks. Some days he’s up for an entire 9 hour day.  He does have some days when he sleeps until evening, but he hasn’t slept all day for days in a row lately like he has before.  His confusion is bad some days, but he has never forgotten who are are, so I know it could be worse.  Just last night he was trying to convince me to buy him a motorcycle even though he hasn’t driven in years.  He had a fall earlier this week and feels like he bruised a rib.  There is no keeping him still though, he is determined to walk around in the yard every day.

As much as I might get sad or frustrated with the situation, deep down, I always know that it is an honor and privilege to take care of my husband.


Glioblastoma Survivor 2015 – September

I don’t want to ever feel like I glamorize brain cancer, or that I make it all look like it was all rainbows and butterflies. I focus on the good in life, so its natural for me to want to share the good, but I try to be intentional and honest in sharing the reality of the bad days of brain cancer too.  If you have read my posts you know that I have such a thankful heart and that I do feel honestly blessed, even with this hard life we are living.  I try to share the hard stuff, but I never quite feel like I can find words to even scratch the surface of how hard the days can be. I don’t usually blog unless I feel something really heavy on my heart, and this morning I have that feeling. Someone needs to read this.   I’m not exaggerating when I say that some days I have thought that the days are impossible.  Psalm 30:5 helps me in those times when I feel like life is just darkness and I need to cling to something to get me through the darkness.  God promises us morning after mourning.  I’ve experienced many seasons of darkness and mourning and have eventually seen the joy of a new day or new morning of joy. I hope that makes sense in the way I worded it.  I know that there tends to be a theme throughout my blog and that I tend to share the same things more than once, but I just share whats on my heart when I sit down to write.  I know that people don’t always read back to previous posts, so I write about what I think someone needs to read today.

I know how it feels at diagnosis to realize that only about 2% will live to see 3 years. The odds have always been against us, from the moment we were given the diagnosis.  I’d love to say that it is because of prayers Mike is here, but I’ve also seen mighty men of God who were surrounded in prayer die from GBM.  I’ve seen a child cry out in prayer to God asking God to save his Daddy in front of a church full of people in agreement.  I don’t know why those prayers weren’t answered, and I don’t try to have all the answers on healing.  I’ll be honest, there have been times that I’ve thought “Wow, if God didn’t heal that mighty man of God, then we don’t have a chance.”  I learned really quick that being worthy or not has nothing to do with it. God’s plan is not something we will ever understand. Dying from brain cancer means that there is the joy and peace of heaven ahead for that person.  There is sorrow for us who remain on earth, but pure joy for those who enter the gates of heaven.

I know how it feels to have the diagnosis in your family and to have to wonder if this will be the last summer, Christmas or birthday together.  I know how it feels to want to climb in bed and pull the covers over my head and not to want to face any of this.  I know how it feels to think “Next year at this time life will be different and he probably won’t be here.”  Mike was never expected to live this long.  I’ve always tried to find a healthy balance of facing reality and trying to prepare myself for the worst while also having a healthy hope for the future and for healing and restoration.  I have already chosen a funeral home, cemetery, casket and prepared his dress blues.  Trust me, I don’t take this time we have had for granted. I realize what a gift each day and each good moment is. We have experienced 41 days of radiations, 2 years of constant chemo and weekly doctors visits knowing that we would never ring that bell in the cancer center like so many patients do after completing their treatment plan, (Glio famililes, you aren’t alone!) decadron, anger, weight gain, then 100 lbs of weight loss, seizures, falls, ambulances, swelling, incontinence, hospital stays, feelings of isolation, confusion, short term memory loss, sleeping for days, Mike not even speaking a word for 8 days at a time, and all kinds of daily battles that I can’t even put into words.  I have been home bound with my husband for weeks and months at a time, not even being able to drive my kids to school, go grocery shopping, or take them to appts because he couldn’t get out of bed and couldn’t be left alone.  Hospice has brought us some calm in the storm. So when you see my posts about being happy, blessed and thankful, know there is so much history behind why I’m so happy and thankful for a good moment.  Please, if you have a good moment with your loved one, be in that moment…grab a camera a capture it.  Don’t let the reality of this diagnosis steal a single moment that has the potential to be a moment of joy.

This last week we spent a week at a beach house with a pool in the Outer Banks and it was so amazing. We are so thankful to The Semper Fi Fund, Dreams for Veterans, and Seaside Vacations for their roles in making the week happen.  Mike faces so much confusion, pain, and scary days, so seeing this spark in his eyes and pure happiness on his face says more than any words than I can come up with. For years we felt like we didn’t deserve to request a dream, so we never did request the dreams that Mike initially had in mind.  Initially when I brought up the idea of submitting for a dream, Mike talked about how he always wanted to see Montana (so random, lol!) or go to a Saints game and have a meet and greet with Drew Brees.  Meet and greets require travel, so now that Mike is at the level of functionality and comprehension that he is at, travel isn’t a good idea for him.  Once he reached hospice I was inspired by seeing a few other families who made their loved ones dreams come true.  I realized that I wished we had requested it earlier and I wished that we would have done something when he was more able.  I also realized that his dream at this moment is simply to spend quality time with his family, so we requested to spend time in a house at the beach. I realized that requesting a dream wasn’t taking advantage in a bad way and it was silly to feel like we didn’t deserve it.  All summer he has wanted to get out and do things, but he doesn’t last long once out of the house, so I knew he needed a get away that would allow him to rest when needed.  I did some research to find a house with a pool because I knew that we wouldn’t be able to leave the house much and the kids would need to have an outlet for their energy.  I always feel guilty asking for anything, but I told myself we do deserve to try to squeeze a lifetime of memories into whatever time we have left.

Glioblastoma Survivor 2015

Seaside Vacations - Dream Foundation

Seaside Vacations - Outer Banks

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If you have airline rewards, but not quite enough for a flight, you might want to consider donating them to The Dream Foundation!

http://www.dreamfoundation.org/giving/


Valentines Day – Handwritten Engraved Necklaces, photos of our GBM warrior, and a detailed update

Our Valentines Day was nice. Mike felt okay for a few moments, but not for long throughout the day.  The girls and I went to a florist and picked out a couple of flowers to make a bouquet and I had Mike give the kids these gifts that we had made back in September.  He has lost his ability to read and write, so these gifts of handwritten engraved necklaces, a keychain and wooden “I love you” boxes are very special.  Kayla actually had to wait until this morning for Mike to sit with her for her to open her gifts because he wasn’t feeling well last night and she wasn’t here when the other kids opened theirs.

I don’t remember where I bought the boxes from, but the necklaces came from the following link: https://www.etsy.com/listing/156050883/custom-handwriting-necklace-with-the?ref=shop_home_feat_1

This is the flower the girls picked out for me…

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And I picked out my favorite flower….

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We ended up with a nice little bouquet.

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Most days Mike really has to muster up the strength to have even just a few good moments.  He often sits with his head in his hands in between those good moments.

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Kenzie wanted Red Robin for lunch, but we haven’t been able to go to a restaurant since August.  Mike doesn’t leave the house at all anymore.  About a month ago he left the house to go for a ride to the Krispy Kreme drive thru, and that is when we realized its just too hard and the enjoyment isn’t there.  Red Robin is just a half a mile from our house, so I ordered to go and brought it to them.  Mike wasn’t feeling well enough to sit at the table, so we all joined him in the room.  Most of the time he is in our bedroom still, but there are times that the adjustable hospital bed is needed to help him sit up.

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As far as whats going on with Mike these days…well, he has some really great moments still, and I’m so thankful for that.  That is what I dwell on day to day – the good moments.  But in all reality, he has some really bad moments too.  I’d say the pain is pretty well managed, so that is an improvement.  Its just the random brain shutdowns that are difficult. (for lack of a better way to explain it)  He can be doing so well one moment, and then have problems the next. For instance, last night all of a sudden he said “I can’t see.” When those things happen, (its not the first time his sight has gone)  I go into comfort mode.  I do whatever I can to help him have peace.  These moments are scary for him I’m sure. I tend to try to get him to the bed and try to get him to sleep when the scary things are happening and I hope that he can wake up feeling better.  We also wanders like an Alzheimer’s patient.  Other things that go during that brain shut down mode are speech, and sometimes the ability to stand or sit up. Sometimes he experiences just one of these things, sometimes all of them together, along with the Alzheimers/dementia type of behavior.  The hardest moments are when he’s having the dementia behavior along with the physical inability to physically be steady.  There have been times that he refuses to stay in the bed, yet he isn’t safe trying to get up.  This doesn’t stop him from trying though, and he has had falls.  Its really hard to describe, but my hope is that by trying to share our experiences I’m giving someone some insight and that it will help someone else in their care giving journey.  Sometimes the fact that we know that it is “normal” within the realm of GBM patients helps us as caregivers to get through the hardest moments and helps us know how to better help our loved ones.  I don’t have an answer on how to get him to stay in bed, but the biggest relief is when I can make sure he isn’t anxious, scared or extremely agitated.  There are medications to calm our loved ones so if you are experiencing this, just share the details with your doctor of what is happening, and they should be able to prescribe something to comfort the patient.


Grey Matters Keychain – Brain Cancer Awareness

I created this “Grey Matters” keychain for Etsy Shop and absolutely love it!  I will be making a necklace too, but I can’t seem to find the time for ALL the homemade jewelry and personalized necklace ideas and things I want to make.  The funniest part is that I spend just as much photographing my creations as I do creating them!  I’m loving this crafty therapy!!!  The fact that I’m able to sell my items in our new Etsy Shop makes it possible for me to continue to buy supplies and to continue to create!  I’m so thankful and have been spending a lot of time in prayer, just in awe and feeling blessed.  It’s a good feeling.  Mike is really proud of me and my favorite part of the day is when he wakes up and asks what I’m doing and I can say “I’m working.”  Then I get him a cup of coffee and he sits with me while I work on orders and package them up for shipping. This week he says I’m like Santa’s elf and he makes comments about it looking like Santa’s Workshop. I think thats mainly because he sees me with the hammer stamping out letters.   Kayla and I are about to have a late night working on some orders, so I have to run.  This is such good crafty therapy for me.  I just wanted to share this item because I love it. I love the thought of spreading brain cancer awareness, and specifically glioblastoma awareness.

Whatever I do, I do it with my whole heart and one blog post seems to overlap the other when I’m posting to either The Creative Bond or The GBM Blog.  This topic relates so much to GBM and to our daily life.  There is a giveaway going on at Mom Explores Virginia Beach right now on any item in the Etsy Shop, so if you are interested in a keychain or necklace, go enter the giveaway!

**Update, I’ve decided to not pursue the Etsy shop at this time so I have closed the shop.  I don’t have time for it.**

Grey Matters

Grey Matters


Fundraiser

We have been so blessed each year around this time (each October our year resets and the medical bills swarm in until about January when we meet our cap) by an online fundraiser and The Semper Fi Fund helping with medical bills. One of my closest friends set one up again and I wanted to share the link here.  Even if you don’t donate, check out the gallery of photos of my amazing family.  I love the photos on there, I feel like they sum up our family perfectly!

Today Mike is doing well.  I’ve found the most perfect channel for him, its called “Velocity” and its all cars, all the time!  Anytime there is a 70’s model Chevrolet Chevelle on there he gets really excited because that is what he had in high school!  They seem to come on the Mecum Auto Auction show quite often.  Its really fun to see him get excited.  There are quite a few shows that restore cars too.  He really enjoys those shows.

Right now he’s watching a Christmas movie.  Happy Saturday everyone!

Click here to see the fundraiser!