Tag Archives: duke university

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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Glioblastoma Update

Mike is such a fighter, he always has been.  He perseveres even on the hardest days and he is steadfast in his fight for life.  I know that hospice can be a wonderful resource but Mike refuses to consider letting hospice come in at this point. I understand and I fight right along side him even on the days when I feel like we are flying blind and I have no idea what to do.  (Do we call an ambulance, do we call a doctor, which doctor – oncologist or primary care, do we wait it out at home, what if something happens and I wish I would have taken him to the hospital, but what if he gets admitted and wants to come home – he felt like a hostage last time he was admitted)  I feel like we are being propelled at a million miles a minute some days and I have no idea where we are going to land.  Its a scary feeling.

We opted to not do Avastin at the last appt and to instead focus on trying to get his blood pressure lowered.  Avastin is contributing to his dangerously high blood pressure and he is having a lot of swelling.  We will see the doctor again and possibly do the Avastin infusion this week.

Since the Duke trip he has not left the house for anything other than to see the doctor and once for church (which ended up being way too hard for him.)  Even though we’ve had some bad days, we have had some really great days too. The great days aren’t over.

I have been working on some custom jewelry for The Creative Bond and it has been such great therapy for me.  I will have more Brain Cancer Awareness jewelry ideas that I will be adding.  I will be adding a keychain too!   I’d really appreciate everyone heading over to “like” the facebook page to show support and share it with friends. 🙂

I don’t know if this Etsy shop will be something that I will do for awhile, or if its just a temporary distraction from everything else that is going on.  But for now its something to do that is giving me a distraction and giving me a creative outlet.