Dear Psyche,
Tell your Dad not to despir. Many people do go into hospice for symptom control and then come home again. Of course it depends on your circumstances but it might give you all a bit of a chance to organise things for when your Mum is at home. Will your Dad need someone to help him with your Mum (lifting etc) ? Social services might help? Also you don’t say what age he is but is he up to giving all the meds etc (it’s quite a responsibility) the district nurse should help with this. Do hope things improve for you all soon
chrers
Caroline
Hi Carolihne,
Thanks for your kind words. Dad & my brother & sister went to the hospice last night & came back feeling very reassured that if she can’t be at home at the moment, then the hospice is a better place to be than their hospital’s appalling & shameful Acute Admissions Unit (she was admitted there 2 years ago & it was dreadful).
Mum also seemed OK about it when she got there. Apparently, she started to panic when the ambulance arrived, saying it meant she would never come home again. But the staff at the hospice were very calm and reassuring to them all.
Dad is 6 years younger than Mum (there are advantages to marrying a younger man as Dad is in quite good physical shape). He’s 73. We are hoping that some help with lifting can be arranged when Mum comes back (oh, I do hope she does) as 3 of us had trouble doing it at the weekend & he just wouldn’t be able to manage alone.
He’s OK with giving the meds, especially as I put together a daily medication chart for him, showing him which tablets have to be given in what quantities at what time of day. That worked quite well up to now.
So hopefully, we all slept better for at least one night but of course, there is more worry to come, no doubt.
Psyche
Psyche
I am so sorry things are getting stressful for you and your family.
My Mum went in for convalescence at one point, and she was not sure if she would be able to go home again, but she did.
I think it is difficult when doctors tell the patient there is nothing they can do, or that there is rapid spread, as in your Mum’s case. When my Mum asked if she would ever improve and the doctor said no, I think she gave up fighting after that. I am sure the hospice staff have a much better idea of how to treat the patient, both physically and emotionally, than the normal doctors have.
You just have to keep being positive, for you and for her, right to the end. The end of this journey hasn’t been written, and good things can happen. Stay strong.
Love Ann x
Hi Ann_04,
Thanks for your message. You’re right about the doctors. My brother attended “that” appointment with the oncologist & said it left them all traumatised, not only by what was said but by the oncologist’s cold manner & delivery.
I can’t away to see Mum just yet because we live 60 miles apart but will try to go later in the week. Dad has just come back & said she seems a bit weaker than yesterday & is asleep all the time so he didn’t have any kind of conversation with her.
He said she has been beautifully cared for though, being washed, dressed in a clean nightie, had her hair shampooed and styled - none of those things would have happened if she had been admitted to the truly awful (and filthy dirty) Acute Admissions Unit at the hospital.
Dad tells me the hospice has continued to give mum her daily doses of Xeloda. I’m so pleased about that as we were worried they would withdraw it immediately, even though nobody is yet quite sure whether Xeloda is responsible for her current state. I’m no doctor but I feel that Xeloda has not caused it but that the oncologist’s withdrawal of oral bonefos 2 weeks ago may be a factor. The idea was to give her intubations of bonefos but that has not happened yet. The hospice has taken her bloods today though, to check whether she can have it done.
Has anybody any experience of using Butrans painkilling patches? Mum has been using them for about 6 weeks & I wonder if they can have side-effects that make you sleepy & confused.
The waiting for tests and results to be carried out is awful!
Psyche
The drug in Butrans can build up in the body and cause tiredness and at times confusion. I do hope this is the case with your mum.
Be thinking about you and your family, at least you know that your mum is comfortable and being looked after.
Hopefully her blood tests might show what is happening with her.
XX Irene
Hi there,
My Dad was put on Butrans and it didn’t agree with him at all. He started to halucinate and was very confused he was then changed to Fentenyl patches (spelling?) which worked better. Perhaps they might suite your Mum - worth asking .
cheers
Caroline
Psyche
When my Mum got confused, the doctor tested in case she had a urine infection, as it can cause hallucinations apparently. She didn’t have one, but that is not to say your Mum doesn’t. Worth asking about it. She had bonefos too, so it could have been that.
Thinking of you all.
Ann x
Hi,
Interesting what you have said about Butrans. Mum has been taken off it now & is being given some kind of liquid painkiller. I wonder if it will make any difference to her confused state if she is no longer taking it.
She was taken off oral bonefos following “that” appointment with the onc but tonight, she was given the intubation at the hospice as her bloods showed that it was OK to do so.
Dad says she is asleep most of the time but is comfortable & OK & he is very very pleased that the hospice is taking such good care of her & that they are such pleasant, professional people - such a different experience from the hospital & the other healthcare professionals they have had contact with.
Of course, we’d rather she was at home but if she can’t be, then she’s in the best place possible.
Am going to see her tomorrow and will probably stay on from there till end of weekend.
Love to you all,
Psyche
Hi psyche,
I am so glad your mum is more comfortable and being looked after well. I hope you and your dad are able to get some rest . thinking of you.
love nicky
Hi,
Spoke to Dad at the hospice this morning. He says mum is quite “bright” this morning, compared with yesterday. He’s not sounding too great himself though as he’s exhausted and has lost a lot of weight in a short period of time.
Mum had her bonefos intubation last night - I wonder if that might account for her brightness. Don’t know.
I’m off to see her tonight and will be there till Monday.
Thanks all for your kind words and advice.
Psyche
xxx
Hi, saw Mum at the hospice Thursday through to yesterday. She spends most of the time asleep & has become terribly weak & can only speak with a tiny little voice.
The staff are mystified by her sleeping so much, not eating & being so incoherent. Some doctors visited today and asked a lot of questions, including ones about her emotional state.
Her sister died on the same day that Mum had her last follow-up with the onc & she hasn’t grieved or anything but just gone into a decline. I guess it’s a combination of unresolved grief over her sister and her own health situation.
They have started giving her a “mild” antidepressant but I’m not sure if it will help at all.
Psyche
Psyche
Sorry your Mum is not doing so well. Her sleeping could well be as a result of grief. It is easier to block things out that way. Alternatively, it could be the liquid painkiller you said they are giving her. Perhaps they could try a different one.
I know this is a really hard time for you and your family and it is hard to know what to say for comfort, except that it sounds as if she is being looked after well where she is at present. My thoughts are with you all.
Love Ann x
sorry to hear that about your mum, she really is in the best place, im sending you a hug.
take care
love
Carol xox
Hi there,
Sorry to hear your Mum is so poorly. It must’ve been hard for you having to leave them and come home. The liquid painkiller (is it oromorph?) could be making your Mum sleepy, is she getting enough fluids because I think dehydration can also cause problems. The hospice really is the best place (until they get her meds right)(well in my opinion for what its worth). You are doing the best you can. Hope things improve soon
cheers
Caroline
Hi Ladies,
Am off back to parents tomorrow to see Mum at the hospice 4 days in a row. There have been developments. When I last saw Mum (Sunday night), she was sleepy, dropping off to sleep most of the time, hardly eating or drinking or drinking from a beaker with a spout.
Then yesterday, she had a visit from 3 doctors all at the same time, who for the 1st time, started to talk about potential treatments of her painful knee, like radiotherapy. Miraculously, Mum started to come around, being more cheerful, more talkative & eating more. The boost of feeling that something, not just “care” is being done, seems to have helped her rally round. On the neg. side, the hospice staff have not attempted to try her out on her feet, so she hasn’t had a go at walking fo over a week.
Then, today, my Dad and sister were called into a room by a doctor who said that everybody in the hospice was puzzled about why Mum has been sleeping so much & has been confused & slurs her words & they are wondering whether she has had some mets spread to her brain!!!
This is absolutely shattering! Mum has another followup with her oncologist on Monday & the hospice doctors are contacting him, suggesting the radiotherapy on her knee & a scan of her head.
So now were are terrified - both of the outcome & the appointment with the onc. My brother, who attended her last appointment, where they were told there had been rapid spread, said the onc was absolutely awful, brutal & insensitive towards my parents, to the point of callousness & offhandedness.
If the onc refuses to sanction the radiotherapy or the scan, what can we do about it? Can we insist or will he just overrule us?
Help!!!
Psyche
PS We haven’t told Mum what the doctor said. Having started to rally round, this could send her right back down again.
Psyche
I agree with you, it is best not to tell your Mum about the unconfirmed thoughts of the doctors. I found with my Mum, it was when she asked the oncologist whether she would ever improve and he told her she would not, that she just gave up and ‘switched off’ and died within a week, although he had also said there was no further deterioration. By this stage, she was having trouble eating, as her spine was so bent.
As you say, your Mum has started to rally, probably with the ‘good’ news about her knee. The mind is a fantastic thing. I remember hearing about a religious man, in India I think, who could produce, and reduce, a tumour with the power of thought. Amazing! You really need to give your Mum as much positive input as possible. Perhaps you should speak to the doctor before allowing him loose on your Mum. They can do untold damage mentally, and some can be so insensitive. I had an argument with my Mum’s GP, because his view was that he should always tell the patient the facts, even if this meant they sank into depression. Heartless!
I don’t see why the oncologist would not allow the scans. He is there to treat the patient, not just ‘care’ for her. This means he needs all the facts, which he cannot have without the scans. Put up a fight, if you need to. It’s not his Mum.
Good luck to you all.
Love Ann x
Hi Ann_04,
I agree with you that the mind can be a powerful tool. We are pretty sure that a lot of Mum’s going downhill fast is due to her emotional state, not just her physical state.
She is pining to go home but as no physio has turned up at all to help get her on feet, she is stuck at the hospice for, we don’t know how long. Although everybody is very nice of course, so far, they have just been on hand to wash, dress, do “toilet” stuff & hoist her into a chair but nothing that might help to rehabilitate her so that she can come home.
The focus of our dread is the “unknown unknown” if you know what I mean, not helped by our dread of the oncologist & his reactions. He has become a bit of a demon to us now, as although everybody applauds his qualifications & knowledge, the man has no bedside manner to speak of, is abrupt to the point of rudeness & delivers bad news in the most absolutely negative way possible.
My sister & I have decided to go along to the appointment as well. It will be a bit cramped in there but maybe when he sees an army of supporters behind Mum, he might think twice about trying to duck out of giving her any scans & treatments. I hope so. Don’t want us to be ejected from the hospital by security or something, just because we are trying to press home our point.
Thanks for your encouragement about putting up a fight. We will do our best!!
Love Psyche x
Psyche
I do so feel for you. I know it is very hard to stand up against these doctors when you are feeling vulnerable. I am sure you can, though, if you stick together. Let us know how you get on. Good luck!
Ann x
I do feel for you all too. i really hope you can get your Mum home again if that is what she wants but just make sure that her meds are sorted out adequatly first. It is truly aweful to push to get someone home and then find that you arn’t properly able to control the pain once you have them there. Keep pushing to get help from the physio and the occ - they should be popping in to check on your Mum surely? As Ann says it is very hard to stand up to these medics but don’t let them fob you off regarding the scan unless they have a very good reason not to do it.
cheers
Caroline
Hi Carolihne,
I guess our fear is that he will say it’s not worth doing anything because of the rapid spread - nd yet, I read posts from ladies on this site who say that their “markers” have gone up & down, sometimes drastically. Doesn’t “up” mean spread or growth? If their oncs are treating them when this happens, I don’t understand why Mum#s is so reluctant - unless of courrse, it’s down to that old chestnut of age.
Mum is elderly. She has never been a little old lady who sits in a chair watching daytime telly though. She was fully active & independent up till about August. If it wasn’t for her terrible knee pain, which means she can’t walk at all because it’s too painful, she always said she felt OK in every other way.
Thanks to that onc’s insensitivity & unwillingness to do much, he sent her mental state crashing right down.
Thanks,
Psyche