Words of Wisdom: Tips for Caregivers

What words of wisdom do you have for caregivers of someone diagnosed with a brain tumour?

Be sure to take time out for yourself. Do something daily that you enjoy. Going for a walk, indulge in a hobby, coffee with a friend. The one you are caring for will appreciate you are thinking of yourself as well.
~ Traci

Patience is essential! Try to remain calm. Don't hide your fears, but don't transfer them either.
~ Nathan

Recovery may be slow, be ok with that and NEVER GIVE UP!
~ Nicole

Write out the questions you have and bring that list with you when meeting with your health care team! It can be overwhelming and emotional during those meetings and so it's great to have something to go back to. Also, don't be afraid to ask those questions. We're all in this together, whether you're the one diagnosed or the one supporting that loved one.
~ Amanda

2 things.....

  1. The best advice I got from a friend was to buy a small notepad that would fit in my purse that I can write absolutely everything in from appointments to questions to phone numbers to symptoms. Everything to do with his care. So many times I was asked for information and I had it right there. 
  2. Accept help. Ask for it when you need it. It gets easier as you practise it. You need a team of people. People genuinely want to help but don't know how. If you are someone who wants to help, offer specific things you can do such as laundry, lawn, respite not call me if you ever need help. The caregiver is too exhausted or busy to do that. Just show up!

~ Susan

While you have that note pad writing down all your questions, concerns, and symptoms you noticed for next appointment... also write down all the happy moments, sad moments, times of frustration and times when your heart is bursting with love and gratitude. It's necessary to be able to see the light as well as the darkness, to be able to see joy in the hard journey.
~ Kristin

Take care of yourself too so you can be there for your loved one, with patience, understanding and someone to talk to.
~ Tammy

Accept help so you can take a break.
~ Ally

Never stop asking the dumb questions. 
~ Olivia

Sit beside them and cherish the time you have to care for them and love them. Just love them with a heart full of compassion and tenderness, understanding that some days they have zero energy and must rest quietly but still need someone to hold their hand but don't have even enough energy to request this.
~ Maureen

Y.O.L.O. (you only live once) that's how we roll...
~ Laurie

It's ok to ask for help. It's ok to cry!
~ April

Take one day at a time. Don't let the thought of what could happen overwhelm you. You've made it this far, you'll be able to make it through more if need be. And the strength in you will most certainly reflect in your loved one who is going through the journey. 
~ Komal

Be gentle with yourself. 
~ Cheryl

Find an outlet.  It's an emotional journey so whether its writing, painting, tai chi yoga etc. to maintain your emotional equilibrium
~ Kari

You matter too. While this awful disease is hardest on the patient, it affects the whole family in 100s of ways. Stay strong carers.
~ Chloe

Allow your feelings of exhaustion, anger, sadness/frustration to be validated. Remind yourself: you resent the disease, never the person.
~ Danielle

Caregivers are allowed to feel frustrated, sad, bad. The patient isn't the only one whose life has been turned upside down. Don't feel bad for feeling bad. Caregivers need caregivers too.
~ Deena

My brother told me "if you're walking though hell, don't stop to look at the scenery'. For caregivers it's very important to be patient and understanding, even when strange things happen (I have absence seizures and sometimes do things that make sense to me but to not anyone else and I don't realize when it happens until after I've done it).
~ Ralph

Always find something positive to focus on even when you (the caregiver) and/or the brain tumour patient are having a tough time getting through the day.
~ Lisa

If today is bad, think about the possibility of tomorrow

Be patient and supportive with the 'new' person the brain tumour survivor might become...and join a brain tumour support group to interact with others in similar situations.
~ Karin

My husband (Steve) is my caregiver, and he is loving, supportive, and patient as he realizes that things have changed. He does everything and anything that I need, and now that I have taken on more tasks of my own...he supports me when I am in need. If I am having a rough day, he'll take on more than I can handle to make sure that everything is done for that day and that I feel safe and loved. We need more people in the world who will take on more than they are able when their loved one is in need... Try your best to be positive and take things one day at a time, one step at a time and you will see the light of day, the improvements, and the time that you have put in for your loved one who has been diagnosed with a brain tumour.
~ Bekki

Speak up and ask for help, yell if you have to. Surround yourself with supportive people and let the negative ones go. Take time to grieve the 'old' normal and find something positive in the 'new' normal. Without our support team of social worker and occupational therapist, family and good friends - we could not survive as a couple without them. You are not alone.
~ El

Accept help of any kind, as you need to rest and look after yourself in order to take the best possible care of your loved one.

Look after yourself...it's critical! If you're not well...you can't look after anyone else...so make time for YOU!
~ Shelley

Be a loving patient caregiver but not at the expense of your own health! Ask for help when you need it.
~ Jen

Love and care and when you're loved one cant fight their battles you do you damned best to do it for them.

Recipe for successful care is love and patience. If you make a mistake it doesn't mean you are a bad caregiver. Remember to take care of yourself just as much as you take care of the patient. Also remember you are not alone. Thanks for all you do. Big hugs.

Keep moving on
~ Carly



Please note Words of Wisdom are direct quotes from patients, survivors and family members and are offered as insight into others' experiences with a brain tumour only. They are not meant as advice, always consult your health care team with any questions.

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