The information provided on this page, and website as a whole, does not, and is not intended to, constitute medical advice.
Advice from Gray for Glioblastoma supporters
What People Are Saying about Anticipatory Grief:
Kate Snedeker talks about her experience with grief on Jenna Palek’s podcast, Fun on Weekdays. Edited by Grieveleave.
“ [… ] the person is still there and you are slowly starting to lose the person that you knew to begin with. [… ] You are grieving that, the things you have already lost in the person, but you are also grieving the future of your life without the person. You really are going through all the emotions of grief, all the stages of grief before you lose someone.”
— Kate Snedeker on Fun on Weekdays Podcast
“Some ways I have experienced anticipatory grief include inability to get out of bed, unable to eat or being overly hungry, physical sickness (nausea), grief brain (forgetfulness, mental fog, reduced attention span and a sense of disorientation, lack of motivation to exercise.”
— Gray for Glioblastoma
“You can’t fix grief, there is no fix. You just have to feel the grief, and it’s connecting with other people who are grieving so you don’t feel like you’re crazy for feeling the way you do.”
— Rebecca Feinglos on Instagram live with Kate Snedeker
“Remember that the aggression is not actually them. Sometimes walking away and taking a deep breath helps”
— Olivia, a Gray for Glioblastoma Supporter
What People Are Saying about Aggression and Delirium:
“ Speak in an encouraging voice, deep breathing and calming exercises.”
— Danielle, a Gray for Glioblastoma Supporter
“Started doing support groups with patient and caregiver which has helped a lot”
— Joelle, a Gray for Glioblastoma Supporter
“Create a scene for them to escape to. For my dad, I would hug him and this took him scuba diving.”
— Sammy, a Gray for Glioblastoma Supporter
“Our dad does 25 mg seroquel cut in half to help delirium, though puts him to sleep hard.”
— Joelle, a Gray for Glioblastoma Supporter
What People Are Saying about Funerals:
“It’s ok to tell people what you need or don’t need.”
— Rachel, a Gray for Glioblastoma Supporter
“For my dad’s funeral, I let other people speak- I don’t remember much of that day but I knew I couldn’t say anything even if I tried my hardest.”
— a Gray for Glioblastoma Supporter
What People Are Saying About Aphasia (a language deficit that affects a person's ability to communicate):
“Print out a sheet with 10 different things they often want such as Breakfast, Water, Walk, Toilet, Nap, etc.”
— Audrey, a Gray for Glioblastoma Supporter
“When my dad was trying to say something [and couldn’t because of the aphasia], I would ask questions such as, does it have to do with pain? food? position? and wait for a nod yes or no.”
— Brekke, a Gray for Glioblastoma Supporter
“You do not have to engage in conversations that make you upset/uncomfortable. Sometimes people say silly things because grief is such a taboo topic in our society and some people don’t know how to act [...] Your mental health is the most important.”
— a Gray for Glioblastoma Supporter
“It can be very overwhelming, take a couple extra days off after the services to grieve and regroup.”
— Abbey, a Gray for Glioblastoma Supporter
“Talk about the good times and what made your dad him.”
— Liv, a Gray for Glioblastoma Supporter
“Aphasia is a loss of language not IQ!”
— Vanessa, a Gray for Glioblastoma Supporter
“Don’t feel forced to do or say anything. If you want to speak, speak from the heart and remember you do not owe anyone anything. You don’t have to explain why you are acting or feeling a certain way.”
— Jadyn, a Gray for Glioblastoma Supporter
“Just because they can’t remember something or someone doesn’t mean they don’t love it or them. It is what they have and not who they are.”
— Sarah, a Gray for Glioblastoma Supporter
“[life] will change, but the grief is still going to be there. Let yourself grieve. Feel the feelings.”
— Kelsey, a Gray for Glioblastoma Supporter
“Accept who they are today and hold on to the memories of who they were yesterday.”
— Chris, a Gray for Glioblastoma Supporter
“If the person says something kind of silly and has a good sense of humor, laugh together.”
— Mel, a Gray for Glioblastoma Supporter
“Everyone is different, but I didn’t even cry. I was so numb.”
— Kaitlyn, a Gray for Glioblastoma Supporter
“Accept support from others. Feel the energy in the air. Ground yourself and take in the moment because it is a lot to process.”
— a Gray for Glioblastoma Supporter
“Aim small, miss small. Use flash cards, basic instructions, yes/no.”
— Chris, a Gray for Glioblastoma Supporter
“If he was cremated don’t pay to have his ashes brought to the site, it saves a lot to just pick them up!.”
— Hattie, a Gray for Glioblastoma Supporter
“Don’t guilt yourself if you just need to get through it. Be as selfish as you need.”
— Marlee, a Gray for Glioblastoma Supporter
“Make plans for afterwards. Coming back to to an empty house was something we didn’t want and having people come over after really helped. We laughed, we cried and we reflected on the day.”
— a Gray for Glioblastoma Supporter
What People Are Saying About Experiencing a Loved one with Memory Loss:
“Honestly, laugh about it and have fun with it.”
— Darla, a Gray for Glioblastoma Supporter
What People Are Saying About Changes in Your Loved One:
“Go with it. Don’t try to correct them. It can confuse or aggravate them more.”
— Britt, a Gray for Glioblastoma Supporter
“Drink water, give yourself and others grace. Don’t have expectations of other people's grief.”
— Jeanette, a Gray for Glioblastoma Supporter
What People Are Saying About Changing Seasons:
“Still include [your loved one that is fighting or has passed][and their traditions]. Our angel on top of our xmas tree is a picture of my little brother.”
— Britt, a Gray for Glioblastoma Supporter
“Appreciate what is ‘left’ of them. Appreciate the little things. When my dad was nearing the end of life, I spent a lot of time laying next to him and holding his hand while he rested. Sometimes he would squeeze my hand and that became such a light to me because it reminded me the dad I knew and loved, and who loved me, was still there.”
— Kate Snedeker, Gray for Glioblastoma Founder
“Don’t get frustrated, it [could] make them feel sad and frustrated.”