For glioblastoma patients and spouses — ten key things to consider

My husband died of a brain tumor nearly seven years ago. It was a glioblastoma — which is a miserable, and the most lethal type of brain tumor that robs the victim of their life slowly day by day until they are unable to function. There are treatments that can “buy time” but that also wreak massive havoc on the healthy parts of the body.

If you or someone you love is faced with this diagnosis, here are some things to consider — for as time goes on everything that you or they do will be questioned as to whether it was done with sound mind and body.

1. Put wishes in writing for how things are to be handled when they are unable to speak for themselves or gone. As soon as the diagnosis is known, time is of the essence to ensure that they are of sound mind to communicate and enumerate what they want. If you wait too long, those wishes can be challenged by family members and others who feel left out or who want things handled differently. This goes for everything from financial wishes to healthcare proxies to the funeral arrangements to your wishes on how minor children will be raised. The conversations must take place. The alternative can be devastating once the patient is no longer around to confer. Ensure you have good professional advice with this.
2. Discuss the likely progression of the disease and what the caregiving expectations are — and realistic capabilities. Is your home conducive to the care of someone with declining physical abilities? Are all the rooms on one level? Is there a walk in shower? Can a hospital bed fit on the main floor? Can the family handle home care or will it be preferable to move to a nursing facility? Everyone in the family is affected by this disease — not just the patient and caregiver. This goes for children as well — consider the effect this can have on them.
3. What is the family support system like? Do you have a lot of family and friends around who can share in the caregiving duties? Or is it limited to just a spouse and children? These are important considerations for the long term welfare not only of the patient but the caregiver and family. Is there someone to watch the children when there are medical appointments? Or in the event of an emergency? Without adequate support, caregivers tend to burn out quickly and other family members are adversely affected as well. I can’t emphasize enough — make no assumptions. Communication is key. Have a plan.
4. Insist that whoever is in the caregiver role — that they take time out for self care. Agree on this ahead of time so that there is NO GUILT. It is very easy to suffer from burnout when someone you love is very sick. It’s important for the caregiver to take a breather and rest, exercise and eat properly. It’s the equivalent of putting the oxygen mask on themselves first. Otherwise, they can’t help anyone.
5. Agree in advance on boundaries. Who do you want around and when? Is it ok for your wife’s sister or your mother-in-law to stop by unannounced? What about your best friends? It’s really good to have people around — and I recommend it. But set limits. What do you want and how do you want to have it happen? Ensure all involved are in agreement.
6. Establish a “key word” between patient and caregiver so that in any given situation — whether it be at a medical appointment or in a social situation — when that word is uttered it means “I need a break” and to end whatever interaction is taking place — or at the very least take a time out. Conversely, if the caregiver uses the key word it has a similar meaning, only by observation they feel a break is needed.
7. Keep a diary of how you are feeling and what you want to say to your loved ones. This can be written on paper or recorded. (After my husband’s surgery his voice never sounded the same and all we had was a voicemail message of his “real” voice.) Write or record audio letters to them for future birthdays, holidays, etc and have someone file and monitor them somewhere for safe keeping and distribution — these will be incredible gifts that will be cherished by loved ones for years and years to come.
8. Preserve your family’s history and memories. Organize photos and keepsakes so that loved ones will understand what was important and why. Make clear your wishes for who should get what (see #1). Write stories about important items and events and dates — or, even record video of the stories being told. So often the photos and family heirlooms get forgotten during a health crisis and those left behind aren’t sure what is what or their back story.
9. Practice daily meditation. This will help keep both patient and spouse/caregiver grounded and focused. It’s something that can be done together. There are lots of guided meditations available — some specifically geared towards healing. Visualization methods have been shown to have many benefits — and using various techniques can mitigate some of the challenging symptoms that accompany brain tumor treatment.
10. Try as hard as possible to fill every day with as much life and joy as possible. Find the humor in everything. Eat your favorite foods. Use the good china. Don’t save things for a later day that may never come. Enjoy every day as though it is your last. No one is guaranteed tomorrow.

If this list helps even one person then my experience has helped another. And if you’re reading this article because you’ve searched for “glioblastoma” — you have my sincerest best wishes.