Does anybody know what medication a PSP patient should be getting in the final stages? thanks

[llangton]

[teena2]

Hi, The community nurses, once they became involved, left me with a "just in case box" which contained all the things necessary for when Chris reached the last stages. This included a syringe driver and the drugs to help him remain calm and be out of pain. Obviously the nursing staff need to be involved in order to administer these drugs. It was used as Chris neared the end of his life and he passed away very peacefully and out of distress. My suggestion would be to ask every professional that you come into contact with, what can be done to maintain comfort and reduce stress in the terminal stages. Keep asking until you get sensible answers and proper promises to follow through with the necessary care. Do not be put off. Teena2

[llangton in reply to teena2]

thanks for your reply Teena2. My Mam is in a nursing home. Id say she is under 40 kilo now and near the end. But the doctor is only giving her morphine and Midazolam when they think she needs it an not on an hourly or every 4 hour basis. I hate the idea of the nurses making the call as to wheather she is in pain or not. I see her everyday and i know by her face (as she can no longer speak) that she needs a higher dose.

I am so sorry to hear about Chris. I am so glad for you that it was a peaceful end.

My mam is on 10mg weekly patch or Butrans. Could i ask if this was the same for you? I really dont know much about how strong the pain killers are.

thank you

[teena2 in reply to llangton]

Hi llangton, Chris was given excellent care by the GP, the hospice and the district nurses. I only had to discuss his care with the GP and he would work with me to get a good result. The hospice and the district nurses were very on the ball when it was patently obvious that Chris only had a few days to live and they were coming in to see him 3 or 4 times a day. At that stage I could not have wished for better care.

I notice that you have mentioned euthanasia- keeping someone comfortable and out of pain as they are dying is certainly not euthanasia and is everybody's entitlement. It is cruel and wicked to deprive them of this final creature comfort that we can give them. Please don't be swayed by this argument. Chris was a catholic and the priests were very happy with his care in this respect.

I have looked up Butrans on Google and it states that it is a morphine like compound, so she is being given a long acting cover, but quite possibly it is not strong enough. I would advise you to key in Butrans and read up about it. Then go armed to the nursing home with your information and your better knowledge of your mother than any they can possibly have. Ask to have a joint meeting with the manager and the GP to discuss her pain relief and see if you can come to an agreement where it is better monitored and adjusted. Just remember that you know her far better than anyone in the nursing home can possibly do. Please do not be intimidated by them, but also try not to get angry. I say this because I probably would!!

Just as an aside, my working life was as a nurse and I can recall when I was working on night duty we had an elderly lady who was obviously dying and in terrible pain. My orders had been to turn her every two hours, but she was almost screaming with pain and so I refused and told the ward sister the next morning why I had not turned her. We had quite a heated argument over this and the only thing that got through to her was for me to ask her if she would want her mother to be left in such pain as she was dying. When I came on duty the next night her medication had been sorted and she was resting peacefully. She died the next day.. Stick to your ground. Good luck, my prayers are with you.

[llangton in reply to teena2]

thanks Teena2. I had a meeting with my mams GP but after thinking on it was not happy with the out come of the meeting. In other words no change to her meds.

I rang my mams neurologist yesterday to get his advice. He is a specialist in PSP and CBD in ireland. So he offered to ring the nursing home with his advise. The GP from the nursing home then called my sister and gave out. Saying we were going over her head and should have spoken to her first. For me this just confirms that she is not confident in her diagnoses of my mams pain medication. If she was she would have called a meeting instead of having a go at my sister. This was very unprofessional. But yet i have to think about how to handle this as she is treating my mam. And its not about her. Its about the best care for my mam. So i will pick by battles for my mams sake.

[teena2 in reply to llangton]

Llangton, I am so sorry. Try not to be intimidated by those who have power over your mother's care. Stay brave and keep fighting. I am sure we are all behind you cheering you on. As you say this is about your mothers care, not about personal egos. The GP obviously felt very intimidated by the consultant and needed to vent off her anger. One thing I learnt through time when trying to deal with other peoples anger was at the point of next communication to carry on as though the angry outburst had never occurred. It seems to ease the embarrassment for the angry person. She must care, otherwise why did she become a doctor. Keep your chin up.

[millicenthatton]

I agree with teena2 my Dad has been issued with such a package, which comes with a drug record book, and has to be kept separate and in a safe place from other drugs. This is only to be given by the Hospice or district team. However I would add that my elderly Mum, Dad's carer, was very distressed by the arrival of this package. She finds it very hard to accept that Dad at 89 is in a very serious stage of the illness. I as his daughter welcome anything that will make his life and suffering easier, however.

[Heady]

Hi llangton,

What part of the world are you, if in UK, try contacting Marie Curie. Your GP should put you in contact with them, if not, just do it yourself. They will help through out this awful time. My thoughts are with you.

Lots of love

Heady

[llangton in reply to Heady]

thanks for your reply. The GP has never delt with CBD/PSP before and I can tell is not sure about the dose to give.My mam is in a nursing home so a palative care team have been called in about a month ago. But her morphine is only given on a breakthrough basis and im wondering how much she sould actualy be on as every time i go visit her she looks in pain (she cant talk anymore)

[llangton in reply to llangton]

oh yea im in ireland

[Heady in reply to llangton]

All I can say is keep pestering them. If you think she is in pain, complain, very loudly! This is not a time to be shy. If your mum is in pain, it is your task to try and get her some pain relief, be her mouth for her, it's all you do. Not a pleasant thing to do, complain at a time like this, but at least you will have the knowledge that you did everything possible for your Mum. Just try to do it out of her hearing, she may well still know what is going on!

Sending you much love and hugs, I'm sure you need some!

Lots of love

Heady

[llangton in reply to Heady]

thanks Heady. She absolutely does still know what i am saying. She will smile if i make a joke.

The other day i made a joke, about, 2 yrs ago when she couldnt cut up her food anymore i started helping and feeding her and how she said i should be a nurse. And i laughed and said i dont think i could stitch up a wound.

But she starting crying instead. Because at the time she was a bit embarrased that she couldnt eat by herself. I didnt mean to upset her.

I will never give up. I dont know much about the drugs But i know my mam and i will be back in the nursing home stomping my feet so to speak until i am happy she is ok.

thank you so much for your reply back.

[Heady in reply to llangton]

Well done llangton! That's all we can do, is never give up! Fight, fight fight! (Would be nice, if for once, somebody else could do it for us, or better still, not have the need!!!)

Polish up them boots!

Lots of love

Heady

[jimandsharynp]

Llangton, Final stages can be subjective unless a health professional deems it so. Have they done that? My dear wife Sharyn began rapid breathing, about one inhale and exhale per second (pretty fast). I called the Hospice nurse, she came and put Sharyn on a low dose of morphine and lorzapan (spelling may be wrong). They did that not to knock her out but only "to make her more comfortable". She was still quite alert and aware of what was going on around her. I think, if it is true final stage, they just like to make it as comfortable as possible on the patient. None of us like to see a loved one struggle. If the patient hasn't been evaluated final stage then there isn't much to be done. At least that's my understanding. Other that what you would normally do to give them the best care you can. Sorry, the end is difficult to go through. You must be strong for family and friends and just do your best. Jimbo

[llangton in reply to jimandsharynp]

I am in Ireland. We have a special neurological clinic for CBD and PSP and they confirmed about 3 months ago that she is in the final stages. She has it 6 years. She is in a nursing home. A palative care team were called in a month ago. She is on breakthrough morphine. meaning she only gets a shot when the nurse thinks she needs it. Yet everytime i call to see her she looks in pain.

I am trying to get to the bottom of how much morphine she should actually be on to be in no pain. I dont want her to be awake just because i am in to visit. She should have as much as she needs to take away the pain even if this means she is mostly asleep.

She is on 10mg butrans patch weekly. thats all. Only 2.5mg morphine injection top up when asked for.

I dont think this is enough but i dont really know much about morphine and how strong it is.

thanks

[llangton in reply to llangton]

I am so sorry about your wife. It is the most horrible disease. But in Ireland we have a law against euthanasia. Its very difficult and stressful to watch some one disappear like that.

[jimandsharynp in reply to llangton]

Thanks for more information. I think my wife was on a morphine dose every four hours and lorzapam every six. Hospice here in the USA allowed me to administer the meds. She was at home and was still aware of us by her side. Jimbo

[llangton in reply to jimandsharynp]

thanks for your reply Jim.