Change of CCAC to Pallative

They have finally wore me down and I agreed to let them change our file to a palliative co-coordinator. When she called to make an appointment for interview I asked what she wanted to know and she said the purpose of her visit was to discuss with Jim the options available with "the end of life". I blew my top and told her she would not be allowed to use that terminology in my home. I asked if in there profession did they not have more sensitive terminology that she could use. She explained that deling with cancer patients they were quite aware. I told her that this is not cancer and stress produces a decline in the patient and maybe she should do some reading regarding this disease. I don't know how they handle things but I was under the understanding they would explain the services they could offer and give us more services. I am so upset with these "professionals" that have no compassion or knowledge about what they are dealing with. I hope that everyone of them has to deal with a similar situation so they could understand what the clients are going through. This is not what I signed up for.

17 Replies

  • I'm so sorry you are going through this. It's all almost unbearable. Of course it's different for everyone, but I am grateful when the palliative care team brings up the hard questions, including how to define quality of life for the purpose of deciding about his getting the PEG. I want my guy to decide as far as he can. (He has surprised me; I didn't know his wishes as well as I had imagined.) It's easier for him when the professionals open up the topic than it is when I do, although the first time I cringed, feeling it was too soon. I think you recently had determined that a PEG wasn't an option for your husband. How is he doing now? Did you make it to the Shriners' parade? How are YOU? Do you have any support? Love and peace, Easterncedar

  • I agree that this is the way to discuss our options and what is coming but I do think that the terminology is just cold and not the way I would like it approached. these are the professionals that should be able to approach this with sensitivity not cold knowledge. I was hoping that they could bring up the discussion better because they were trained better and were sensitive to the discussion. I am not in denial but want to make it as easy as possible for Jim and not stress him as you must know that stress only exhilarates the symptoms. Also his being able to follow the discussion is already impaired and I don't believe they understand as they are used to dealing with CANCER which in most cases has a definite map to follow. PSP is very different in speed and symptoms as you well know. I appreciate what you are saying just very worried we have a young insensitive book learned person discussing this. We did make it to the Shriners parade and he had a great time with other Shriners who helped immensely. He was so thrilled to be on the float and ring the bell of the boat. It was hard but well worth the fffort. The next day was a total explosion of the bowels and I thanked the Lord that I decided on only one night as I couldn't imagine dealing with that on the road. He was well aware it would be his last convention. I would do it again regardless of how hard it was. Thank you for your concern but I am doing ok at this time. I miss my life but know it won't be forever.

  • Yes eastern, I am surprised with Don's answers as well, but then again he doesn't know what is down the line. I do the research, which scares me to death. Maybe that is why I am having such a bad day. Depressed, lonely, no one but this lovely group of people to talk to about it.


    Auddonz (aka Audrey)

  • It is very difficult to think about....Quality of life;quantity of life. But no matter what health conditions we are in, these are things that we must be prepared to contemplate. We must be prepared for death or what I like to believe, my eternal choice....

    Holdfast, sensitivity comes with experience . embracing all truth leads to much strength!


  • A few year ago we were seen by a palliative care doctor, again insensitive and not fully aware of PSP considered it like terminal cancer a defined timeline and within 6 months of the end. He rapidly changed his stance when I fairly forcibly explained situation and that average life span was an average not fixed. We are on his books but will not be called again, thankfully, unless M deteriorates. The new hospice raised the issues again yesterday without notice during the introduction and care needs assessment, taken completely by surprise, I am upset but M seems to have taken it well and now wants to discuss some of the arrangements. Difficult as her communication is very poor, thumb up or squeeze for replies do not know I have asked all the questions yet as she tires easily. Keep your spirits up best wishes Tim

  • It's shocking that "experts" can't use more appropriate language, it's not exact rocket science is it?

    I think we must be very lucky, our GP, Consultant, and hospice are very good, they have been enormously positive with G, they have tentatively mentioned about PSP but as G doesn't want to know anything about it, they have managed to get answers about end of life care without actually using the term.

    They have asked me what I want to be told and have told them to tell me straight and so they do,mite a bit brutal at times but at least I know what's going on. G asked me the other week "I'm not very well am I" my answer was "not at the moment but we are going to take each day at a time" this seemed to appease her, and her stress levels visibly went down.

  • And that is what I am looking for, sensitivity.

  • Really, I am truly wondering and this is a sincere question: what would be appropriate language? How does one tiptoe around the hard facts before us?

  • I guess it is just me and my need to protect him from thinking about it and giving up. I will try and be more aggressive with facts if that is what you think is needed at this time, We talked about thinks like this when we were both healthy but then didn't have to face the reality of death. I would rather he thought of tomorrow being here rather than when it won't.

  • Oh no, no, please, I really didn't mean to suggest I know what is appropriate for you and your husband. You know best what is right for you both. I'm very sorry if I seemed to be judging your decisions in any way.

    I just don't know that directness must be interpreted as insensitivity on the part of the professionals. For years doctors assumed too much power, and commonly wouldn't talk to their patients about death at all, lied to them in fact. We are moving beyond that, and that seems to me a better way. And perhaps to ask professionals to shield us is asking them to shoulder too much responsibility.

    I have older friends who have been really frustrated because their children won't let them talk about their final arrangements, which makes them feel infantilized and disrespected, and prevents them from having their wishes in place. I know other folks who want to believe they will live forever. Whatever makes people happiest is the best way. Only you can know what is best for you and your husband. For me and my guy...

    My sweetheart, about two years after diagnosis, one day announced, quite formally, that he had something to say and he didn't want to hear anything to the contrary. I said okay. And he stated that he was going to beat psp. So I agreed that that's what was going to happen, and that together we would work to keep him fit until a cure was found. That was our program for the following two years. It was a good attitude. It was helpful. But now he is in a palliative care system and there are decisions that need to be made while he can still make them, so I have been supporting the professionals when they raise the difficult issues, and my guy is dealing with that quite well. We just saw a counselor this week, and he said he was in a good frame of mind overall, but would like to see her again in a while. We are easing our way. I don't think he will stop fighting as far as he can, no matter what is said. He's a stubborn man.

    Well, that's where we are. Life is hard.

    I appreciate the conversations we have on this site - life and death and diapers and birds and medicines and music and everything. I know I am not alone. Thanks to you, Folliott, and everyone reading this, for being here.

    Peace, Easterncedar

  • Language that has been used with G is, she will need extra care, which will be more than I can deal with on my own, that it's not her fault it's due to this disease (although she doesn't know anything about it). The GP and consultant have asked that if there was a situation where G gets a chest infection how/where would she like to be treated. Then they moved onto the fact that she is of an age when things might start to go wrong so gently asked if she would ever want to be rescusitated, these questions haven't upset G as she thinks they are age related not PSP related.

    G knows she's not well and she finds that upsetting, I say "no you're not well at the moment, so we'll just take one day at a time" therefore not shutting the door on life and leaving hope that tomorrow is another day.

  • This does seem to be the "official" phrase. Several professionals have said the same thing to us over the years. The first time it was mentioned C was mobile, talking, speaking etc. I told him that he had a long time until the end of life but we had to talk about it because it was going to happen to all of us and it was better to talk about it now when we were all able to do so. I said this in front of the professional at the hospice and she said I was correct and she had already discussed what she wanted with her husband. I don't think we talk about it enough in the UK. It is a natural progression. I am a very fit 64 year old but my sons know what I want when I am nearing death, how I want my send off ( I do change this every so often) and where I want my ashes scattered. Colin and I both want to be scattered in the local park. I've told the boys they may have to put my ashes down their trouser legs and shake the ashes out like in the old war films as I'm not sure how visitors would feel and the gates are locked at sunset so they couldn't do it in the dark.

    We are both Christians so have no fear of death, but having sat with others as they have left us, some with medical interventions and others not, we know how we would like the time, before we go, to be.

    I think the more we talk of these things, the easier it becomes. Palliative care staff are dealing with it all the time with people who have many different life limiting illnesses, hence their apparent insensitivity and maybe they should be reminded that with many this is the first time they have had to think about death of a loved one, but I do think it would be a lot easier if were all more open.

    Of course, when the time comes, it is hard for those left behind and we all have to grieve in our own way but if those left behind knew our wishes and carried them out at least they would be comforted by the thought that they had done their best.

    Our time hasn't come yet so today is for living, the sun is shining at last and the birds are singing. We are off to the park.

    I'm sending you a big hug, or big squeeze as our grandson called it, and hope something happens to make you smile today.


  • Oh, I love that plan for scattering the ashes. It's illegal to scatter ashes in most places here, even in cemeteries, although folks do it, of course. Would the theme from The Great Escape be appropriate for the service?

  • I would love to spread my ashes over my daughters. Think they catch me digging a hole next to her. Oh nuts, I would have to get someone to do it for me, hah. I hate the idea of being cremated but it is more cost efficient and have to think about that. I am going to sit next to my honey on the sofa and just try to destress, if that is a word?

    Audrey (aka auddonz)

  • Our mum's first referral to hospice was met with a derisory reply saying she wasn't ill enough to be considered (they had no knowledge of psp). We then self-referred to another hospice and, reading through your posts, I realise how lucky we were with our Mum's pallative care. We were able to speak with the community nurse before she met mum to tell her not to mention end of life. Initially mum went to the hospice to have her hair done and for massages (she was unable to take part in activities). The hospice arranged transport and my dad was able to go with her if he wanted to. When mum became too poorly the community nurse visited at home as and when needed, but always kept in touch by email (dad didn't want mum to go for respite). Mum's palliative community nurse was a fantastic advocate for us when we were having problems with GP/Care agency/social service, and I don't know what we would have done without hospice support in mum's last few days.

    Mum had pallative involvement for four years before she passed - they were respectful of family wishes, never mentioned end of life in front of mum, and treated her with dignity and respect at all times.

    Folliott I fully understand the shock of being told your loved one is now palliative care and I think we've all wanted to bury our heads in the sand and pretend it's not happening. Anger, frustration, upset, helpless, guilt......just a few of the words to describe how we feel on the incredibly horrendous journey that is psp. But try and give the hospice team a chance.

    Thinking of you


    Auddonz (aka Audrey)

  • I did get my point across and she did present as a little more sensitive but I am not so naive as to think we are anything but another case and number in their files. I think they are young and book learned not life learned and sometimes need to be understood and made to understand we are not just numbers but people with families and lives.

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