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Struggling and need some advice please 
Créé par Mary09
05 août 2021, 19 h 27

Hi,
i am struggling right now and need some help.  My mom is battling cancer right now.  She is now pretty much bedridden with back pain.  We have tried everything including nerve blocks and nothing has helped.  She is extremely sensitive to medication it makes her sick to her stomach.  We have stopped chemotherapy because the doctor believes it is not working.  She has scans coming up in two weeks to see how things are and they will decide whether a different chemo could help or she decides to stop treatment.  She is finding it so hard to eat or drink ans is very nauseous.  They have offered to either admit her to hospital or to have a palliative care team come daily to the house.  My mom says she is not ready for that yet.  There are so many doctors involved my head is spinning and I just don't know what to do.  I'm so worried she is not getting any nutrition and has barely anything for pain relief.  I don't really even understand what stage she is at.  The doctor said two months ago that she would have less than a year without chemo and "maybe" two with chemo.  But it didn't work and she's not taking anything at the moment.  I'm trying to be strong for her but I'm overwhelmed with all the doctors and caring for her...seeing her suffer and emotionally trying to accept I'm gonna lose my mom.  I'm an only child so it's just me and my dad.  Thanks for reading. 
 
06 août 2021, 20 h 01

Hello Mary09,

What a tough time for you all. My daughter is an only child, and she has commented on how it might have been so good to have a sibling to talk to when her dad, my husband died. 

I know that others on the forum will come along to read and support you. I think feeling overwhelmed is very normal in these circumstances.  In sorting through and trying to make sense of all the people who are providing care to your mother, you might find it helpful to write to Ask a professional  (part of the Canadian Virtual Hospice as well). 

I am sure your presence is very comforting to your mom (and dad), but you are also probably playing several roles, nurse, cook, clearner, listener advocate, appointment maker - and the mosst important role daughter.  Do you think your mom might find help in the home easier if she knew it would give you more time to be that daughter? 

Warm regards,
Katherine


 
Réponse de Mary09
06 août 2021, 20 h 15

Thank you so much Katherine for your kind words.  Yes I too wish so much I had a sibling to talk to right now.  Although I know from others that just because you have siblings does not mean automatically you have help.  Some choose not to.
i have two sons as well...one of them has type 1 diabetes which is a very difficult condition to manage also.  Plus 4 years ago I was diagnosed with breast cancer myself.  My prognosis is good but some days its hard not to feel I have a front row seat to my future by watching my mom go through it.  This part of the journey is just so overwhelming.  
I don't think my mom will take any help at home... maybe one day she will have to allow nurses in to her home to help care for her but I don't have a clue when that will be.  Next month?  Next year?  I have no idea how long this will go on.  What I do know is myself...I will continue to give all of myself until the end and only then will I feel how much I have taken out of myself.  But I would never forgive myself if I didn't because I just want to be there for her...she needs me more than ever.  I am just so very tired.  
 
Réponse de Lucky1312
06 août 2021, 20 h 40

Hi, there -

My dad passed on November 29th, and towards the end he was not eating or drinking much.  It's a worry for sure.  Get some Boost with extra calories and try to get some of that into her. 

As far as your head spinning, it can be overwhelming.  I was there to help Mom with all the lingo and doctors.  You have the right to know what stage your mom is at, and you really do have to advocate for her. 

Palliative care does not mean she is dying necessarily, but that she has chosen not to have more active treatment.  You could probably use the help of some palliative care professionals in the home if that's what's being offered. 

My strong advice above all else, I think, is to keep her out of hospital if you can.  Dad had a fall last spring and was in hospital for six weeks trying to get his mobility back, but the opposite happened.  He declined dreadfully and couldn't walk at all by the time we brought him home.  

You will be told by everyone "take care of yourself".  While I agree with that sentiment, I know personally I didn't take care of myself during the time I cared for Dad, there simply wasn't time.  Looking back, I don't think we could have done anything differently or done more for him, so we are at peace with our decision to have him pass peacefully at home.

You will find a lot of support here.  I did.  People really do care and you are NOT alone.

Cathy
 
Réponse de Mary09
06 août 2021, 21 h 00

Thank you so much Cathy for your message... I am sorry for the loss of your dad.  
yes I have tried Boost and Ensure..she tries to drink it but says it is so sweet it makes her sick...even if we dilute it with milk.
I also don't want her to be admitted to hospital...thanks for your perspective on this. I'm sure given the choice she would rather be at home.  
i just hope and pray we can find something to give her some relief without having to sedate her too much.  Its so difficult.

thank you again I appreciate the warm welcome.


 
 
Réponse de Lucky1312
07 août 2021, 15 h 00

You could also try making something in the blender, perhaps a fruit smoothie with protein powder.  That might not be as sweet.
 
Réponse de Mary09
07 août 2021, 15 h 28

Thanks Cathy,
I've tried a few things Like that.  I ordered powdered milk which is supposed to be good for extra calories.  Going to try some more drinks with fruit and ice cream this Weekend.  Hope something works.
Thank You!  


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