Providing free online community support to people affected by breast cancer

Forums » Supporting People with Breast Cancer

• adele12

  

  • 20 posts
  March 25, 2012 3:35:41 PM WATime

  Report

  I did what I could do talked to doctors, breast cancer people and what has been done - zilch! Mum decides she wants a shower today, that was fine and I don't mind helping her. I just wish that she would help herself and take her pain killer before she does these things or she could have had a basin wash which was she was thinking of doing initially but then changed her mind. She is finding it very difficult to use her walker, so I get the wheel chair out. Dad freaks out because he sees her getting around in the wheel chair. This all because she didn't take her PAIN KILLER. I have told her time and time again, medical people tell her but she chooses to be in agony. I can't help her. Supposed to be spending quality time with her and while I am here it is all about medications, cancer, the hospital experience and the pain. Then there is Dad's worries, fears and 200 problems. Quality time pfffft. No wonder I feel overwhelmed and alone.

  This post was edited by adele12 at March 25, 2012 3:35:41 PM WATime"
• Glenys

  

  • 162 posts
  March 26, 2012 12:07:27 PM WATime

  Report

  Yes, it’s no wonder you are feeling overwhelmed and alone Adele! It's difficult enough to see someone we love in pain, without the immense frustration of also watching all our efforts to help the situation go in vain, especially when the 'plan' to manage the problems seems so clear and logical to us. Often they’ll say they 'don't want to be a burden to anyone', and yet their actions cause so much distress, angst, worry, pain and frustration to those around them, the 'burden' is significantly increased!

   

  Unfortunately the best plans are only useful if the person receiving the care agrees to it, and then actually follows the plan. As I’m sure you have already learnt, the level of support and care cannot be increased if the initial care offered is declined, or not fully utilised.

   

  What can you do? Three things:

  - Firstly, stay in touch with the Cancer Care team. Let them know your frustrations. Often their hands are tied if the care is declined or the treatment plan is not followed, but if they are informed of the situation they are in a better position to look for solutions and step in when appropriate. This is also an avenue to allow you to express your feelings and frustrations. As I know your mum is in rural WA, contact the Rural Cancer Nurse Coordinator (Peggy Briggs) on 0429 208 625 or email: Peggy.Briggs@health.wa.gov.au to ensure all avenues of support have been utilised.

  - Secondly, as difficult as it is, we have to accept (to a certain degree) it is a person’s own right to refuse care. If it is truly their wish to not have additional supports and medication, then this cannot be forced upon them. However, understanding and exploring reasons behind these ‘wishes’ is important. Some aspects that may lead to a person refusing care are: desire for independence, fear, anger, denial, depression, or lack of faith in medical system/doctors/medicines. Any of these may play a powerful role in preventing a person accepting help. Finding avenues to discuss with your mum (or for health professionals to do so) may help to identify if obstacles can be overcome.

  - Thirdly (and most importantly) seek support for yourself and other family members (your dad if he would accept this). Being overwhelmed with the situation will add enormously to your own stress, and may lead to strain on your relationships with your mum, dad and others around you. Breast Cancer Care offers counsellors and breast care nurses you can talk to (08 9324 3703); Breast Cancer Clinical Psychology Service provides Clinical Psychologists (08 9224 1629); Cancer Council 131120 also has support & counselling services. Many of these services are provided free of charge.

   

  My heart goes out to you in this very difficult and frustrating time Adele. We are always here for you to discuss things with, and express your feelings. Perhaps you could start a 'blog' to allow this, and also keep us updated with how you are going. Look after yourself.

  Glenys xx

  This post was edited by Glenys at March 26, 2012 12:07:27 PM WATime"

  The Click Breast Care Nurse 

• Ness

  

  • 81 posts
  March 26, 2012 5:21:57 PM WATime

  Report

  Hi Adele - so sorry to hear you are having a frustrating time with your visit. I am sure Glenys' tips were helpful!
  : )
  I can only add that it is a stressful time when loved ones are unwell and it is hard for them too. Family can be funny in that we let our guard down with them and all our negative thoughts come out! We often 'cop the worst' from people who love and trust us. Maybe you're that person for your mum and dad? Maybe it's a generation thing too as I know my folks can be the same!
  Hang in there love and know that you are doing what you can - just being there for your mum is probably better than any medication she can be given anyway - as tough as it is on you!
  x

  The Click Project Coordinator
  

  Daughter-in-law and niece of breast cancer "thrivers"!

• adele12

  

  • 20 posts
  March 28, 2012 1:45:29 AM WATime

  Report

  Thanks for your advice Glennys and support Ness. I have talked with a couple of members of the breast cancer team, it did help but it is taking time for things to happen as a result of that meeting. They really are awsome. I was able to speak to Mums old GP, who was actually treating her while she was here. She is a really good Doc and such a nice person.

  Mum and Dad have been accepting help and I guess when they do refuse it is because they have lost faith in the medical system, a few bad experiences. It is a very frightening place to be. I can only imagine how Mum must feel. She feels the doctor and other medical staff have written her off. Guess she feels cast aside at times, like people are pulling away from her. :(

  Yeah I guess I am doing my best in directing them towards the help, they have to make the step towards it.

  I am seeing a counsellor too which does help. Think being back on the antidepressants also helping.

• adele12

  

  • 20 posts
  March 30, 2012 1:04:49 PM WATime

  Report

  Thanks so much for your kind and helpful words. :)