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"end stage" cancer care questions

  • 21-02-2012 8:35am
    #1
    candyflossgirl
    Registered Users Posts: 38 ✭


    We recently received the bad news that my mother will no longer receive treatment for the cancer that she has been fighting for a long time. She has been in hospital for several weeks now and her symptoms have begun to stabilise using palliative medicine.

    My mother lives alone and has clearly stated that she wants to go home rather than die in hospital. I have been trying explore what support services and options are available for her because I heard from the nurses yesterday that she will be discharged as soon as her symptoms have stabilised and all the supports she needs (i.e. home help, hospice home care team, meals on wheels, public health nurse) are in place. I spoke to the medical social worker who told me that she would "apply" for the services but that she would be sent home in the next "day or two" regardless of whether or not she is assigned to the services. The only service guaranteed is the hospice home care team as we have already begun the referral process with them.

    Nobody in my family (except my mother) believes that she will cope at home, even with the support being "offered" by the HSE and what family can do. Private nursing care is not an option for financial reasons. My question is this: if my mother changed her mind and told the consultant/cancer care team/medical social worker etc. that she didn't want to go home, that she wanted residential hospice care instead, will they refer her to a hospice residential placement instead? or is that a decision that is made on a medical need basis only?

    Also, up until now I have never thought there has been much point in asking the cancer care team "how long" she has left; they seem to give educated guesses more than anything, and my mother has defied the odds up until now. She is quite ill but at the moment is getting weaker by the week, rather than by the day. Have others found it useful to find out "how long" in terms of dealing with practical issues like those I describe above? If I thought she only had a week or two left to live I wouldn't even be posting here, but her general demeanor and her response to palliative care suggests that she will have at least a few months and the level of energy required to look after her at home would be impossible to sustain for more than a week or two and probably wouldn't be the best for her in the long run.

    Any advice greatly appreciated!
    Tagged:


Comments

  • #2
    Shield
    Moderators, Society & Culture Moderators, Help & Feedback Category Moderators Posts: 9,644 CMod ✭✭✭✭Shield


    You won't get any medical advice on this site, but if you call MacMillan Cancer Support on 04890 708610 from the Republic of Ireland, they should be able to answer the basic questions you have, and put you in touch with local support groups in your area.


  • #3
    samina
    Registered Users Posts: 329 ✭✭samina


    candyflossgirl wrote: »
    We recently received the bad news that my mother will no longer receive treatment for the cancer that she has been fighting for a long time. She has been in hospital for several weeks now and her symptoms have begun to stabilise using palliative medicine.

    My mother lives alone and has clearly stated that she wants to go home rather than die in hospital. I have been trying explore what support services and options are available for her because I heard from the nurses yesterday that she will be discharged as soon as her symptoms have stabilised and all the supports she needs (i.e. home help, hospice home care team, meals on wheels, public health nurse) are in place. I spoke to the medical social worker who told me that she would "apply" for the services but that she would be sent home in the next "day or two" regardless of whether or not she is assigned to the services. The only service guaranteed is the hospice home care team as we have already begun the referral process with them.

    Nobody in my family (except my mother) believes that she will cope at home, even with the support being "offered" by the HSE and what family can do. Private nursing care is not an option for financial reasons. My question is this: if my mother changed her mind and told the consultant/cancer care team/medical social worker etc. that she didn't want to go home, that she wanted residential hospice care instead, will they refer her to a hospice residential placement instead? or is that a decision that is made on a medical need basis only?

    Also, up until now I have never thought there has been much point in asking the cancer care team "how long" she has left; they seem to give educated guesses more than anything, and my mother has defied the odds up until now. She is quite ill but at the moment is getting weaker by the week, rather than by the day. Have others found it useful to find out "how long" in terms of dealing with practical issues like those I describe above? If I thought she only had a week or two left to live I wouldn't even be posting here, but her general demeanor and her response to palliative care suggests that she will have at least a few months and the level of energy required to look after her at home would be impossible to sustain for more than a week or two and probably wouldn't be the best for her in the long run.

    Any advice greatly appreciated!

    I would ask the doctor. They will give you a reasonable idea. From my experience things can change rapidly and unexpectedly. Most importantly I'm sure you don't want to miss out on any time that's left. My thoughts are with you.


  • #4
    dromdrom
    Registered Users Posts: 321 ✭✭dromdrom


    Hi, very sorry to read your post regarding your mother.Have you rung the Irish Cancer Society? They provide help with pallative care and there is no cost to the family. My wife worked as a pallative care nurse with them and they are of tremendous benefit to people in your situation.


  • #5
    Alun
    Registered Users Posts: 21,418 ✭✭✭✭Alun


    candyflossgirl wrote: »
    Also, up until now I have never thought there has been much point in asking the cancer care team "how long" she has left; they seem to give educated guesses more than anything, and my mother has defied the odds up until now.

    Any advice greatly appreciated!
    Firstly sorry to hear your news, both myself and my wife have been through this 4 times in only 4 years with our parents, so I know how upsetting it can be.

    The reason why the doctors cannot say with any certainty how long she has left is quite simply because they do not know. They're not being deliberately evasive or anything, but the way these things develop can be almost impossible to predict with any certainty, with brief periods of improvement that fill you full of optimism, followed by sudden and serious relapses that dash all your hopes again. When the time comes though it's usually quite quick and sudden, and in my experience at least, pretty unexpected.


  • #6
    Dizzyblonde
    Moderators, Category Moderators, Politics Moderators, Recreation & Hobbies Moderators, Society & Culture Moderators, Regional East Moderators Posts: 12,108 CMod ✭✭✭✭Dizzyblonde


    When my father was diagnosed last year the hospital contacted the local health care centre. They sent a nurse to assess my father's needs (my mother wanted to nurse him at home although she'd had a stroke a few months earlier). The health centre provided equipment and a nurse to call in as often as was needed, and a carer to wash my father and make sure he didn't get bedsores. As far as I know a lot of these services depend on what resources your local health centre has, my parents were very lucky. The hospice people called regularly and kept an eye on both my father and my mother, and when it became too much for my mother to handle and my father's needs couldn't be fulfilled after at home, they moved him into the hospice. The care he got in there was amazing. I can't fault any of the care he got, and the support we all got. I hope you and your mother have as positive an experience during this sad time.
    My advice to you would be to contact your mother's local health centre if the hospital don't.


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  • #7
    Condo131
    Registered Users Posts: 1,441 ✭✭✭Condo131


    Hi candyflossgirl,
    Call the Irish Cancer Society's FREEFONE helpline 1800 200 700 and you can speak, in confidence to a specialist Cancer nurse.

    The ICS offer advice, help and assistance to families undergoing final stage Cancer. It may be worth contacting your local Public Health Nurse (via local health centre). They are snowed under, but you won't get, if you don't ask.

    Take care and mind yourselves too - this is a *HIGHLY* stressful and traumatic time for you and your wider family. .....and DO make that call!

    There are details of many Cancer support centres in this post


  • #8
    Lorna123
    Closed Accounts Posts: 1,116 ✭✭✭Lorna123


    candyflossgirl wrote: »


    Sorry to hear about your mother. I have been through this 3 times in the last 5 years. Both my parents died of cancer and my brother in law. I found that nobody in the hospital was prepared to say that my mother was dying even though it was obvious. While her medical care was excellent I have to say that she was just a number when in hospital, and was just left there to die. None of the nurses cared whether she ate or drank, her food was placed on a trolley before her and then taken away uneaten but nobody offered to feed her as she couldn't feed herself. We decided to take my mother out of the hospital ourselves and had to hire a private ambulance to get her home.

    I have to say that the hospice care was excellent once we got her home. We had 2 Carers coming in each day and I stayed overnight myself for the last week. Like you, I thought that my mother was going to survive for a few months but she was dead within a week of coming home. Once the hospice people put her on morphine that was the end. She never spoke again.

    When my father was dying of cancer I felt that I could not cope with caring for him in the family home so I allowed him to go into a hospice, thinking that this would be a long term stay for him and that he would be looked after in the best possible way. My experience of the hospice was that while he was definitely kept comfortable he was dosed with medication if he complained about anything and only survived for about 10 days before he died. I was told before he went into the hospice that he was not ready for this yet but as I couldn't cope I said that I wanted him to go in. To this day I am sorry I allowed it. My mother fared better in her own home with the palliative care than my father did in the hospice. I was grateful that my father was taken in at the time but in hindsight dying at home would have been a better option.

    All cases are different but of the 3 that I experienced it appeared to me that the deaths were hastened by morphine as soon as the palliative care took over. No doubt people dying of cancer need this treatment but I felt that I let my father down as he wanted to die at home and not in a hospice and I always felt guilty about that afterwards.

    Same with my brother in law. He was told he was being brought into the hospice to regulate his medication, but he was dead within 3 days of going in there.

    My advice would be to pull out all the stops for your mother and then you will have an easy conscience when the dreaded time comes.


  • #9
    The Princess Bride
    Registered Users Posts: 18,581 ✭✭✭✭The Princess Bride


    Condo131 wrote: »
    Hi candyflossgirl,
    Call the Irish Cancer Society's FREEFONE helpline 1800 200 700 and you can speak, in confidence to a specialist Cancer nurse.

    The ICS offer advice, help and assistance to families undergoing final stage Cancer.

    There are details of many Cancer support centres in this post


    Ask for the free booklet " A time to care- caring for someone seriously ill at home".
    Your mother's GP and the home care team will advise you-write out a list of all the questions you have before you meet with them again.

    Take care you.


  • #10
    candyflossgirl
    Registered Users Posts: 38 ✭candyflossgirl


    Hi everyone and thanks so much for all your input and support. In the short time since I posted my original question my mother has sensibly agreed to go for residential care so we are trying to sort that out for her, and the hospital are facilitating that. I am not sure how to quote individual texts here as I am relatively new to boards, but I am going to follow up on all the supports Irish Cancer Society, etc. that have been mentioned. I think a combination of residential care for the time being and then the end few weeks or days at home would be best for her, and for us, like Lorna123 suggested, you have to feel right about the decision made don't you, you have to live with it for the rest of your life.

    As far as finding out how long she has left, I am not sure that we are going to ask directly, this story seems to be unfolding as we progress through it. I think it might be scary to know that it's only three weeks or a month or something like that, whereas we can see from how she feels on a day to day basis that she is getting weaker and that feels like a much more natural progression. We'll take each day at a time and try to get the best out of it.

    Thanks so much XX


  • #11
    snowey07
    Registered Users Posts: 373 ✭✭snowey07


    Hello Op , hope you and your mum are coping ok

    dont forget to also take time out for your self too. This is an awfully stressful time and people say and do things that they mightnt mean. Many families row over nothing . If it gets too much dont be afraid to ask for help even if it just means you get to sit in a cafe reading a paper for 30 minutes on your own


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  • #12
    candyflossgirl
    Registered Users Posts: 38 ✭candyflossgirl


    Well I just wanted to say thanks again to everyone for all the advice in relation to my original questions; a lot has happened since my last post and the system kind of took over and I didn't need to organise anything much in the end. Thankfully she got a lovely spot in the hospice this week and they seem to be taking really good care of her so hopefully she will relax a bit when she settles in. It's so hard, it must be so hard knowing that this is where you will die I feel so sad about it and for her I hope I can be strong for her and help keep her spirits up. While she fully accepts she is going to die she has said she doesn't want us talking about it to her so our usual family routine where we all poke fun and tease each other and joke about the messes we find ourselves in just doesn't work here. It's quite strange but I guess over the next few days we will find a new way of dealing with it. Anyway, I am rambling on and keeping myself away from precious sleep-thank you all again people xx


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