I'm caring for my father, 83 who has renal carcinoma. He has a partner (who does not live with him) but i am doing most of the practical stuff which I don't mind. The main thing is watching him deteriorate in front of my eyes. He's not on any cancer treatment, as his wonderful and compassionate oncologist suggests it would be too risky. So it's now just a waiting game, and that is what I am finding the hardest. I feel so sad a lot of the time and my friends don't understand how to be with me through this. I feel quite emotionally abandoned by some of them.
Are there any carers out there who can relate to feeling so alone or who can offer some tips...or even know of any carers support groups? I rang Carer's Vic but they don't have groups.
Many thanks for listening.
A valuable resource can be the local palliative support team. Their role is often misunderstood, as often the word "palliative" is interpreted as meaning at the very end, or in the process of, passing on. Most doctors or nurses would use the term "terminal phase" for this end phase: although this is may be a part of a palliative care teams role, it is not it's central focus.
I would describe palliative care as being aimed at improving the everyday quality of life for a patient( and their loved ones), when the duration and destination of the journey can no longer be significantly altered. If the surgeon can't offer an operative intervention, if an Oncologist can't offer a chemotherapy intervention, then the goal becomes making the very best most of everyday as it comes. Palliative care is not about withdrawing medical care, but about refocusing the goals and nature of resources available. Rather than clinical interventions, the goals become refocused toward improving a persons daily quality of life, which whichever assistance can be provided. This can include areas such as access to expert advice and education in pain management, access to allied health staff and mobility devices, and counselling and support with regards to the emotional,spiritual and psychological journey the patient and carers go through.
To access such programs, you can talk to them directly (ie does not need to come from a GP/hospital staff member). Palliative care programs are directly funded by their health networks, and thus access is not constrained by medicare restrictions or access to private insurance.
To give an example, in the Eastern Suburbs of Melbourne, the Palliative Care Program is with the Eastern health group (http://www.eastpallcare.asn.au/contact-us/locations.html). They have a family Support Officer available, who can assist carers of patients who are on their program (if anyone knew of a current local support group for carers/families in this area, i would think it may be this person!)
A person must however be accepted as a client(ie your father) to access resources. The referral can be completed by a carer such as yourself, family member (ie not just a GP/Oncologist etc, but certainly can be). The number is listed on the linked page above.
I hope you can access support soon, and best wishes for your journey as you travel this path with your father.
Unfortunately the Eastern Palliative Care team won't take Dad on as he is not showing enough symptoms of illness. But we were referred to a counsellor. She was not helpful to me, but I'm on a waiting list for another one. They don't run face to face support groups for carers which is what I'd really love to be a part of.
Thanks so much for your in depth response. It was really lovely of you.
Hi Kirri, I was in a similar, but not the same, situation as you when my husband was going through chemotherapy. He never got particularly unwell, but still needed practical support and help at times. I can remember feeling very alone, too, as he was the person I was most used to turning to for support. Your comment about being the strong one all your life really struck me- it sounds like you do need to find a 'safe' place to fall apart occasionally (as everyone does.) This is a great place for that. Unfortunately it is an online, not face to face community, but you can be sure that most people on here would have a good understanding of what you're facing and feeling.
I had the same experience as you with some of my friends, too. Some of them just dropped away, and others I had to leave behind because they were causing more trauma than friendship tolerates. This is unfortunately quite common too, and actually the 2 posts on this forum with the longest response threads both dealt with this topic. You're definitely not alone. love and hugs, Emily
Another resource: Here is a list of current support groups for Carers around melbourne. As you can see, there is a focus on carers of people with mental health issues on this particular list, as the list is provided by ARAFEMI and that is their focus. However, it also lists many general groups with a focus on supporting carers with chronic illness, which may offer an avenue for sharing with others experiencing a similar journey.
I just reseached carer's support groups and came across this:
They seem not to have a particular focus on people caring for people with any particular illness. They have a youth section as well, and seem to have heaps of resources, as well as social activities. Might be worth checking out!
Thanks so much Emily.
Your message just made my day! I really feel you understand (as have the other posts too thanks everyone else too) and I will definitely read those posts. I can only imagine what you went through. It sounds like you've gone through the worst of it and have learned a great deal as a result. Thanks again, hugs & love back, Kirri
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