I am hoping someone can clarify what palative care is. My partner, Daz and his family are against them due to things that happened to family members in the past. They think palliative care will lock Daz away and he will die within a week of them taking over. I don't agree, I have never heard of this sort of thing happening and when I said so I was knocked down with story's of them locking his auntie and uncle away. I always thought palative care was done by the hospital. Why are Daz and his family so against their help. Daz thinks if he gives in to palliative care he is done for, his words not mine. I just don't understand this as I have only had good experiences with them, when my dad and step dad died. He also thinks he has a mark against his name because he was fighting them when he has his seisure. He stil thinks they caused his behaviour by jabbing him with needles and hurting him even tho I have told him he was being difficult and wouldn't let them do what they needed to do and that's why he had to be jabbed with needles. He doesn't believe me and would rather listen to his Mum who wasn't even there at the time and believe it was the hospital staff that was the cause of it all. This is not true. I feel like I am in a soap opera or something.
14 Comments
GHT
Contributor
I can't throw light on exact nature of palliative care. What the word conjures up for me and possibly Daz and his family is this: that palliative care involves an acceptance that the illness can't be cured but rather managed. If they of this view then it will be confronting if they aren't in a place of acceptance. You had a good experience with your relations but they may just hear that they died. It is so tough wanting to help when it is possible they are not in same mental place as you. Also I wonder how much Daz's view is impacted by his parents view? I wish I had answers rather than questions. I guess I am just trying to offer an outsiders perspective. Feel free to ignore me if this isn't helpful Best wishes GHT
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Super Contributor
Palliative care is not always for people that wont survive. Palliative care can offer services and assistance that will make life easier on the carers and the patient. I hope the family seek out information and they find some peace. It is a difficult situation for you all. THoughts are with you. Julie
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GHT
Contributor
Dear Jules Your knowledge of palliative care is probably accurate. My point was about perceptions rather than reality. If Dazs family have a probably outdated view based on prior experience or even prejudice then that may be what Gee Gee is up against. I agree that everyone in the situation needs support. My point is simply about recognising not everyone is on the same page based on their beliefs about what palliative means to them and thus how open they are to it.
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Not applicable
Hi My experience and understanding is it also helps with pain relief which is a big thing when your cancer is advanced. I have lost my father to lung cancer and a boyfriend to specialised lymphatic cancer. Good luck
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Super Contributor
GHT ... I get where you are coming from. I am just writing my perspective and what I know from my close friend that tapped into palliative care. They were able to offer assistance with pain relief (as stated above) and also with a hospital bed in the house, which helps to make life easier for all concerned. Often the perception prevents people from accessing something that really could be helpful. Julie
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Occasional Contributor
Hello , I can't really comment on how his family think or feel but as a fellow cancer sufferer I can understand Daz's feelings about palliative care. To me palliative care means dying. Even if palliative care means pain relief , the fear even if irrational is overwhelming. I remember you writing about how Daz gets confused and only today I spent one hour in a shopping centre sitting down on a bench confused and even a little angry before a few tears and walking home to be told I look pale. I have told my wife that if it eventuates I want to die at home. I think what you are dealing with here is the irrational but to the patient it seems very real. Maybe all you can do is be honest and open with Daz and continue supporting him. I am sure he appreciates what you are doing even if it doesn't always seem so.
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Occasional Contributor
Thanks everyone for you comments. Daz has come to terms with dying but his parents haven't. Their problem with palative care is an outdated one and I really hope Daz reconsiders and accepts their help and stops listening about the so called bad things that happened in the past. Time will tell I guess. Regardless of what happens I will be there for him in any way I can. Even if his mum doesn't want me there.
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GHT
Contributor
Dear Gee Gee Daz is so lucky to have you supporting him. I agree with Paul that I feel sure he appreciates you even when he doesn't say so or gets confused and says things that make you wonder if he does. Bless you GHT
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Contributor
Some people prefer the term 'supportive care'. Not only is it about pain management but also managing nausea, vomiting and any other discomfort the patient is suffering from. In the later stages it also involves assisting with showering/washing and pressure area care (when the patient can no longer turn themselves). Basically it's about keeping the patient as comfortable as possible. Most people believe this care is only provided in a hospital but there are actually a few other options out there such as hospices and your own home. Wishing you all the best.
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Contributor
Hi Gee Gee and Daz...Sorry to hear that you both are still having hurdles put before you on your travel through this horrid episode we are on (mountain after mountain...but we will try..). I have been on Palliative care now for about the last 7 months out of the 9 months after being diagnosed.My heart sank to my feet when I first learned of the term of "Palliative Care" but have found there IS so much more care and resources avilable to you.I have been (and my family) VERY PRO-Active in researching and avaluating any and all avenues avilable to assist me, and have benefitted,I think, from some of these.I have been able to keep a closer eye on any or all health and personal information and record these myself,as to learn more and keep a closer eye on things that affect my body (blood levels,eating habits etc)Palliative care has given me access to Medical Oncologilical Pahrmacists, dieticians,health workers, Legal advise,Travel advice and many more.I have recently been changed over to a "new" Chemo and having my health information available to me has help me evaluate how my body is reacting to the new drug. Pallative Care has been good for me, but I do know of others that find it hard to adapt to it. I hope this helps.Always in our Thoughts PS I am only in Palliative care when Radiation/Chemo is administered,usually now about once every three weeks, but I have found them very easily approachable to any enquiries or advice I need. Greg & De
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Occasional Contributor
My sister has advanced small cell lung cancer that has metastised to her brain. She is off a property in the central west and has been placed in a unit in Sydney. The care she is receiving is outstanding. From her arrival she has had specialised physio, spiritual guidance, massage therapy, pain relief at her fingertips and specialised care e.g a hoist machine to get her from bed to commode as she does not feel comfortable with a bed pan. I do not think she could have this same quality care available if she was at the property. She is hoping to get back home but I am realistically thinking this May not be possible. What are others thoughts?
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Super Contributor
Lell Palliative care to my knowledge can help with equipment at home for those that want to stay in their own homes. My friend had a hospital bed at home and other bits and pieces to make it easier for her carer husband and more comfortable for her while at home. They also offered care to wash etc... Sounds like your sister might live a little bit further out than most but might be worth talking to them to see what they can help with. Julie xo
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Occasional Contributor
Hi Jules, Thank you for your comments on pallative care. Unfortunately her journey finished today. We were called to be there with her but she passed before any of her brothers or sisters or her mum arrived. The main comfort was her husband and three daughters were there. Very sad day.
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Super Contributor
Hi lell So very sorry for your loss. Xxoo Julie
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