Pain patches

Discussion in 'End of life care' started by Mike's Mrs, Jan 18, 2015.

  1. Mike's Mrs

    Mike's Mrs Registered User

    Jan 18, 2015
    5
    Hi everyone. I'm new to posting here but have read a lot over the years.
    My mum is sadly in the end stages of AD. She is in a wonderful NH just 20 minutes away from me.
    My almost daily visits consist of me sitting by her bed while she sleeps. There's little or no recognition when she wakes up and our last conversation was over 3 years ago. Food and drink intake is minimal, but sufficient to keep her going.
    She's recently had a couple of setbacks - seizures, UTI and has a recurring sore on her heel which despite everyone's best efforts is now very deep and difficult to heal. She's in a permanent foetal position due to contractures in her arms and legs.
    We recently met with her GP to discuss her pain relief needs as she gave indications that she was in pain a lot of the time. We know it hurts when she's moved, but she gasps and shouts out when resting too (myoclonic jerks seem to be the main cause of her resting pain). Anyway, it was decided that her comfort was of the utmost importance and she now has BuTrans patches - 5mg changed weekly. Having googled these patches I am happy that they will make "life" more bearable for mum, but I have this niggling fear about whether we've done the right thing. The side effects for someone in mums state could mean that she will stop eating or be too drowsy to eat....
    Has anyone else had any experience with these meds? I have such conflicting emotions at the moment. The last thing I want is for mum to suffer, yet I hate the thought that our pushing for the meds could be the thing that contributes to her slipping away.
    I'm sorry, my post which started out quite composed has descended into babble! I can't seem to find the right words for how I feel...
     
  2. lexy

    lexy Registered User

    Nov 24, 2013
    569
    #2 lexy, Jan 18, 2015
    Last edited: Apr 11, 2015
    deleted
     
  3. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    #3 lin1, Jan 18, 2015
    Last edited: Jan 18, 2015
    Hello . Welcome to TP.
    I am sorry to hear about yuour mum.
    When my Mum was in late stages , the last thing I wanted was for her to be in pain , I didnt want to lose her nor did I want her to continue the way she was or get worse , I believe you feel the same

    Mum was on Bu trans patches too. She started off on 5mg which worked well for quite a time. I did have to give paracetamol to deal with breakthrough pain, over time mum needed more paracetamol so I asked for Bu trans dose to be upped . Mum was then on 10 mg with only occasional paracetamol .
    It has been a while since I have read up on this medication but with my mum it did not affect her eating or drinking, the initial extra tiredness soon wore off.
    It gave me peace of mind that my mum was not suffering pain.

    Speaking personally I would have no qualms about this type of pain relief or if needed syringe drivers .

    I hope this helps you.

    It is so hard isn't it
     
  4. Ash148

    Ash148 Registered User

    Jan 1, 2014
    276
    Dublin, Ireland
    Mum recently started on Butrans patches too. Her GP was worried that it would make her drowsy especially as she on a lot of other medication too, but there has been no evidence of this; actually we now have the opposite problem that mum is not sleeping at all - average of two hours a night.

    I would definitely prioritise pain relief over anything else.
     
  5. tuscon

    tuscon Registered User

    Oct 1, 2014
    15
    Hi Mrs Mike
    I am so sorry you are having this dilemma.
    My mum is not at end stages of AD but her GP, last week, prescribed BuTrans 5mg patches. This was because she was refusing to take liquid paracetamol. Her only aches and pains are in her back and legs so I was quite alarmed that morphine patches had been prescribed. The first week she was drowsy but felt sick a lot. She then had a 2 day break with the second patch going on last Thursday evening. By Friday morning she was out of control when I tried to wake her, scratching me, punching and trying to bite. She was staring wildly and crying out for her mother. It was so awful and scared me terribly. I got the carer to take the patch off. She told me to go home and that she would deal with mum. By the afternoon she was calmer, had agreed to get up and get dressed and was having a mug of tea. Today a senior carer told me off for doing that and said that I should have spoken to her GP first. The GP has known my mum for 4 months and I think I am better "qualified" when it comes to my mum's behaviour. That was not her. So now she is back to liquid paracetamol.

    Obviously, everyone reacts differently and if the patches are helping your mum with her pain, then you have done the right thing. I know how hard it is to make decisions for our loved ones. Fingers crossed for you and hope your mum does not have any adverse reactions. Stay strong.
    Tuscon
     
  6. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,490
    Female
    Near Southampton
    As with all medication, it's a case of balancing up the pros and the cons.
    It is also a case of trying something and changing it if it doesn't help.
    The main thing is to keep your mother painfree but ensuring that she can still eat and drink.
    Best wishes and welcome to TP.
     
  7. Mike's Mrs

    Mike's Mrs Registered User

    Jan 18, 2015
    5
    Thank you for your replies. Mum is noticeably more drowsy at the moment, however, this may wear off as her body adjusts to the new meds. She seems to be less agitated too. We will see how the next couple of weeks go.
    I feel happier about the situation now. It is a time of such mixed emotions. Grieving for someone who is still alive yet hasn't been "alive" for so long is such an awful thing to go through as you all know too. Watching mum deteriorate and suffer. Our only concern is for her comfort and so we know we have made the correct decision in asking for the patches. Whether this marks "the beginning of the end" remains to be seen, but we'll be by mums side for the duration.
    Thanks for making me so welcome on TP. x
     
  8. Mike's Mrs

    Mike's Mrs Registered User

    Jan 18, 2015
    5
    I've had a couple of good visits with mum this week - good in so far as she's definitely much more comfortable and less agitated than usual. The NH staff, however, say she is not eating and is only drinking a tiny amount. They are having trouble getting her other medications into her. Her GP will review her again next week. I am worried that he will refuse to prescribe more of these patches and that she will end up being in pain again. It's a never ending vicious circle of trying to do what is right. Who has the final say in what should be done? Us or the GP??
     
  9. lexy

    lexy Registered User

    Nov 24, 2013
    569
    #9 lexy, Jan 21, 2015
    Last edited: Apr 11, 2015
    deleted
     
  10. Snoopedog

    Snoopedog Registered User

    Jan 31, 2015
    1
    Anyone familiar with the transdermal patches?
     
  11. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    Hello Snoopedog. Welcome to TP.
    Their are a few different types of these pain patches. Butrans , mentioned above, is one of them. My mum also had a patch , think it was called Deponit to prevent Angina.

    My mum couldn't swallow pills , so had to have meds in patches or liquid form .
     
  12. Bedelia

    Bedelia Registered User

    Dec 15, 2011
    158
    My mum has been on the patches since last August. I think it took a few weeks for her to adjust to them - she had more or less stopped eating solid food for about 4 months prior to that (liquids only) and had become bed-bound. There were days when she also drank very little, and in the first week or two of her being on the patch, she had a lot visual hallucinations and I thought she was slipping away.

    But by the end of September, she had started to eat tiny amounts of solid food again, and is now back to a relatively regular intake of food as well as drink. She is also on regular top-up paracetamol, as I felt that "as needed" top-up wasn't enough and she was sometimes in discomfort as the patch wore off.

    So now she is on the transdermal patch and 3-4 doses of paracetamol per day and is quite comfortable.

    She does sleep a lot, but is not as comatose as she had been at some times in the first couple of weeks of having the patch. So I would say if it keeps your mum comfortable, that's the priority. I don't think it will make her too sleepy to eat/drink in itself (although she may gradually accept less in any case). When I asked about top-up pain relief a few months ago, I was told that a dose of injectable morphine could be given if the pain was severe, but that would sedate her too much to eat, so that would be a last resort. Mum currently seems fine on the patch + paracetamol.
     
  13. terryjcm

    terryjcm Registered User

    Mar 26, 2015
    1
    Butran and side effects

    New hre. My mom has dementia and 3 weeks ago she fell and cracked her hip. In a rehab home since and not doing as well as hoped. They started with Fentanyl patch but she turned into a zombie sleeping and unresposive. They changed to Butran patch lower dose and she became responsive. It was a week long time release and now on the last day she is unresponsive again and not eating. How do we know if it's the medicine or her dementia progressing? Can a pain medicine drastically advance dementia? Not ready to lose my mom.
     

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