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• adele12

  

  • 20 posts
  April 18, 2012 12:24:54 PM WATime

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  So Mum's GP eventually turns up and increases her pain meds and that was all that happened. Social Worker was supposed to come down but didn't end up making it. Looks like that ain't going to happen until May. This looks like it is going to be an on-going saga til then. Mum still getting charged for her prescriptions ($13.00) everytime. Being penalised because she isn't mobile and has great difficulty seeing the GP. Wouldn't be an issue if she was mobile and wasn't on so many medications (15). Nothing changed despite asking for help.

  Things getting missed, Mum's bed linen not changed for about a month, Mum calling me 15 times a day (not an exageration).

  Getting tired of wasting my breath... :(

• Glenys

  

  • 162 posts
  April 18, 2012 3:00:46 PM WATime

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  Your frustration with this situation is palpable Adele. Would really love to help in any way we can. I'm not certain if your frustration is with the lack of assistance provided for your mum when she is in great need, or if more based around the tremendous emotional strain put on you by the situation. Why is your mum ringing 15 times a day? - is she in pain?, unable to do things?, or ringing more as an outlet to express her own fears and concerns? In either case, avenues to divert this from always landing on you so heavily are available. Have you discussed this with any of the team or support services previously mentioned? Are you getting help for yourself?
  
  It's very good you are able to express your frustration in writing, even if this doesn't provide the practical help you are crying out for. You could start a 'blog' to regularly write down your thoughts here on the site.
  
  If your parents have financial concerns, discussing with the Social Worker (by phone or appointment) would clarify if assistance is available. Breast Cancer Care WA (9324 3703) can provide Breast Care Nurses and Counsellors to discuss your concerns with, and possibly provide financial assistance in certain circumstances. The Cancer Council (13 11 20) can also assist with support and financial difficulties.
  
  Please discuss your concerns with one of the services available. The Breast Nurses at Breast Cancer Care WA are Denise & Heather. I would urge you to consider discussing with them if you are not able to get the help you need from the Palliative Care team, GP, Peggy Briggs or Sara Graham. Perseverance will be the key to getting through all of this.
  
  Sincerely hoping for some easing of your distress Adele. Please look after yourself and let us know how things go from here. xx

  The Click Breast Care Nurse 

• adele12

  

  • 20 posts
  April 22, 2012 12:43:15 AM WATime

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  Hi Glenys.
  I met with a Pallative Care Doctor and a Cancer Care Co-ordinator about a month ago. They were going to speak to the medical team who look after Mum. It is my understanding that they did contact them. Mum's GP came and saw her but other than that nothing else has improved. The pallative care doctor and social worker were going to come down and see Mum but cancelled and apparently won't be able to make it until May. I was asked to be there when they came down but they don't seem to realise that I have to find money to put fuel in my vehicle to get there too. I have been trying to put myself there when they are but it is difficult when no one calls me back telling me what is going on. I didn't even know that the pallative care doctor and social worker were going to travel there, I recieved information from Mum. Frustrating.
  Mum has been telling me that she rings me so often as she has no one else to talk to. One of the HACC ladies has barely any time to talk to her let alone cleaning the house. Then the other HACC lady tries to get Mum to walk up to the lounge when Mum can barely get around. Dad is frustrated when HACC come as they don't have a regular time. There are also other on-going issues which Dad is reluctant to speak to the Community Nurse about. HACC is in place to provide assistance with Mum's showers but the problem being Mum has been showering herself and on opposite days to them coming. Lack of communication on both sides and even though I get in the middle and try and sort it out, it gets lost in translation.
  I am so worried for Mum and Dad so much so it is making me physically sick. I am supposed to go and see Mum and Dad on Monday and are dreading it. It is a very oppressive atmosphere. Thanks so much Glenys for your reply, numbers, thoughts and support. XX
• Glenys

  

  • 162 posts
  April 22, 2012 8:33:55 PM WATime

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  Hi Adele
  I am so glad you have stayed in contact - I do understand from personal experience how immensely frustrating & overwhelming situations like this can be (as I'm sure others on the site may also relate to).
  
  I do very much believe solutions are attainable. Firstly, the right services need to be contacted and made aware of the extent of the situation; secondly, seeking help for yourself is essential.
  
  My recommendations:
  1. Outline all your concerns in writing and send via email to the Rural Cancer Nurse Coordinator Peggy Briggs (Peggy.Briggs@health.wa.gov.au). She is then able to forward on to relevant persons. Please include your mother's details (name, address & date of birth), & your name & contact details.
  2. Contact the Breast Cancer Care WA nurses (Heather or Denise) on 9324 3703. They are able to discuss your concerns directly with you, which will help lighten the load and possibly provide other avenues of support & counselling. Financial assistance may be available for you to cover fuel costs.
  
  Your parents are very fortunate to have you in their lives Adele. Your love and caring are wonderful rewards for them. I know you feel an enormous sense of responsibility toward their situation, however I’m sure they would agree that you aren’t responsible to resolve all of their issues. They do still have involvement and accountability in decisions made and actions taken. Ideally, independence for your parents should be maintained as much as possible, however compromises may need to be made along the way to find workable solutions. When and how this needs to happen is something you all really need to have professional guidance with. Also to help ensure your efforts are not made in vain & to protect yourself from 'burn-out', gaining professional guidance for yourself is vital.
  
  
  Sending warmest wishes that the pressure will ease for you soon Adele. Love Glenys xx

  The Click Breast Care Nurse 

• adele12

  

  • 20 posts
  April 23, 2012 2:24:10 PM WATime

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  Hi Glenys
  Thanks for your replies and support.
  
  As suggested I have emailed Peggy Briggs and did my best to describe my concerns.
  
  I am currently seeing a Counsellor and take antidepressant medication. I have had depression for a great deal of time but still struggle especially now.
  
  I have been out looking at cars for Dad, as he is determined to get one and take Mum to see the Palliative Care Doctor at the local regional hospital. Trying to humour him and buy some time, hoping that some kind of small miracle will happen. Hoping things get better soon before he makes a not so good decision.
  
  Unsure what to do. Yeah I know I can't resolve all of Mum and Dad's issues but 'tis difficult to be a bystander.
  
  Once again, thanks so much for your help. Much Love, Trish/Adele XX
• Cynthia

  

  • 124 posts
  April 24, 2012 12:24:29 PM WATime

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  Glad to see you have followed Glenys' lead and contacted Peggy Briggs. Hopefully the timing issues can be sorted out and things run more smoothly from now on. I guess your dad is doing what he thinks is right ( as the male and family patriarch) to help your Mum. You are doing a wonderful job as a daughter in this very stressful situation. Good thoughts go to you and your family. Keep strong (-:

  the Click Researcher
  

• adele12

  

  • 20 posts
  April 26, 2012 3:06:18 PM WATime

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  Thanks all for your support and advice. I have been in touch with Peggy Briggs an army of medical professionals are scheduled to see Mum and Dad next week.
  
  God, I hope it helps. Feel like a dobber but what is going on is not working.
  
  Up to 10 or so phone calls today and a 1 hour conversation today with Mum. I am already exhausted, need to go back to bed. :(
• Cynthia

  

  • 124 posts
  April 26, 2012 5:43:57 PM WATime

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  Glad to hear it Adele. Now have yourself a good sleepin xx

  the Click Researcher