Glioblastoma (GBM) patient caregiver

Posted by tealover102 @tealover102, Aug 20, 2017

I am a 76 year old, total caregiver for my husband with GBM as we have insufficient funds for hiring anyone else. . It's been 8 mos. since surgery, then chemo and radiation. He wears an Optune device and has had 2 Avastin infusions. Currently the gliomas are growing again and steroids are helping with the brain swelling. His anger and negativity, the sole emotions he displays, are wearing on me and I am reaching out for support and understanding.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Scott, Volunteer Mentor | @IndianaScott | Aug 20, 2017

Hello @tealover102 Nice to e-meet you here. I am Scott and I was the primary caregiver for my wife during her 14+ year war with her brain cancer.

You are in a good place here at Connect! You will find many fellow caregivers here who have been through or are on the journey also. We are an open group with good listening, broad shoulders, and along the way many hints and tips regarding what we each have learned along the way to help with some of the demands of caregiving.

We were in a smaller town and finding any affordable resources to help was also a profound challenge for us. Is your husband a veteran perhaps? The VA does have some good programs. Perhaps something like Meals on Wheels could also provide some relief. I know caregiving takes up 99.9% of a person's time and many things fall by the wayside as we focus on the overwhelming needs of our patients. At least it did with me. My Neatnik ways were the first to fall by the wayside with me!

I was fond of saying I was married to one woman for 41 years, but married to many different people as her condition changed due to her tumor. I tired to tell myself to remember it was the disease at play, not my wife. That only worked part-time I will say. I also kept a pillow in our living room that I frequently took to punching and crying in when I was overwhelmed. I found Connect one of the times I was overwhelmed by the isolation of caregiving. It was a wonderful discovery for me and I hope it is for you as well.

You may want to also check out the discussions in the Caregiver discussion group. You can find it by clicking this link --
https://connect.mayoclinic.org/group/caregivers/
Above all know your fellow caregivers here UNDERSTAND!

I send strength, courage, and peace!

tealover102 | @tealover102 | Aug 22, 2017

In reply to @IndianaScott "Hello @tealover102 Nice to e-meet you here. I am Scott and I was the primary caregiver..." + (show)

Dear Indiana Scott,
Thank you for your wisdom. We are married 56 years, but I rarely see the husband of even a year ago as this tumor has robbed his personality. I sleep now with a pillow to hug as my husband, John is now in his own bed. I can only pray he remains pain free. I have Hospice waiting in the wings until treatments run out.

Scott, Volunteer Mentor | @IndianaScott | Aug 23, 2017

In reply to @IndianaScott "Hello @tealover102 Nice to e-meet you here. I am Scott and I was the primary caregiver..." + (show)

Good morning @tealover102 Thank you for the kind words -- reminds me of that old saying 'we grow too soon old and too late smart'! 🙂 Your comment brought me the memory of how difficult it was when we had to introduce the hospital bed in our room for my wife. She needed, but hated, cursed, and certainly rebelled against, the rails on the side of a hospital bed. I know what you mean when you say hugging your pillow -- it was the first time in our lives we slept apart for any reason other than my business travels in the old days. In the early days of that change she'd always let loose with a choice few words as she described that second bed --

While not a happy thing, it is good you have the hospice option available. My wife chose home hospice care and it was wonderfully patient-centered care for her in her final months. They were amazing in all aspects, but especially in pain management for her.

Peace!