Specialist help for insomnia

Discussion in 'I care for a person with dementia' started by MimiLexis, May 23, 2019.

  1. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    Hi all

    I had to put the phone down on the memory team this morning as they could not advise me who to ask my GP to refer dad to for his serious sleep problem. He has suffered for at least 3 years now with not sleeping and we are at the end of our tether.

    GP is contacting CCG for help in getting go ahead to scribe Melaronin but if this does not help we will be no further ahead in dealing with his sleeping issue. Dad currently takes following meds:

    Artovastatin - for the heart
    Donepezil - Alzheimers
    Loperomide - for his Divericular Disease

    Both statin and donepezil side effects can cause insomnia and he suffered with insomnia before taking these meds, the statin he only started approx 8 months ago.

    Do I need to get dad referred to a Neurologist or someone else? Please can someone help me as the memory team keep telling me all they do is diagnose Alzheimers/Dementia but anything else GP needs to refer to someone. I asked for guidance in who he needs referring to for his sleep problem but all they said is someone and that's down to the GP to find out. They are as much use as a chocolate teapot!

    Many thanks in advance
     
  2. nitram

    nitram Registered User

    Apr 6, 2011
    18,649
    Male
    North Manchester
  3. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,362
    Female
    I'm not sure from what you've said if you have yet spoken to the GP about this? I would have thought the GP would be able to prescribe treatment, or refer you to whoever you need to see.

    I am not sure what the sleepstation does but I suspect they would need the person to engage with the process in a way someone with dementia is unable to do.
     
  4. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    We have had Zopiclone scribed for dad several times over the last year but he is only allowed 2 weeks max script as it's highly addictive. This is a short term not long term help and adding more drugs I do not feel comfortable about hence why I have asked GP to scribe Melatonin but GP not allowed to scribe this as it's a specialist initiation drug according to the CCG guidelines. My previous post goes int the saga behind that.

    GP is not specialised in Alzheimers and have wrote to memory team who have wrote back for GP scribe but he cannot due to the guidelines!

    GP does not know what specialist or where to send dad to in order to get the script scribed. I have spoken with someone who advised a referral to a neurologist, since dad was diagnosed 3 years ago no one has checked on him or even doing medication check of his donepezil....I just think it's disgusting and I an writing a letter of complaint to memory team. I need help and no one can help me...GP knows nothing about Alzheimers and memory team say they diagnose and nothing more....shocking!!
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,552
    Female
    London
    But it's the truth - they diagnose, prescribe Donepezil if appropriate and should check his progress now and then, that's all. Everything else is down to he GP, so it's not helping getting angry at the Memory team. You're kind of fixated on the Melatonin as the cure but it rarely works, and if the guidelines forbid a prescription, you might just have to accept that, and explore other possibilities for the insomnia.
     
  6. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    #6 Palerider, May 23, 2019
    Last edited: May 23, 2019
    You sound very fed up and dissapointed and concerned. Zopliclone you are right is not an answer, and in many ways it shouldn't be used. Can you say why you think melatonin will help? Its important because any doctor will ask you the same thing,to see if they confer with you, and not because they disagree necessarily. Its important to realise no doctor will prescribe outside of their ability, and that includes specialists. However if the psychiatrist from the memory team has suggested melatonin (and you have seen this advice or been given it verbally) it may be trialled. To help yourself you need firstly to calm down take a step back, and then speak to the memory clinic about getting it prescribed by their psychiatrist if that can be done. When you have calmed down the best aproach for you is to call the memory clinic and ask to speak to your dads psychiatrists secretary, tell them (calmly) what has happened and ask if his psychiatrist will prescribe melatonin.

    You mentioned seeing a neurologist, why has that been suggested or where did that come from?
     
  7. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    I am not blinded to the fact Melatonin may not help, like with anything what works for some may not work for others. We want to try it and speaking with other carers this is where you learn of what works for others the same as what does not work too. Why should we not try this for dad whom has suffered a very long time with no sleep? I would prefer more natural supplements than pharmacist drugs any day! All I want is help with knowing what type to get how to start the dosing process etc but no one is helping me at all...nor has the GP told me to buy it over the counter.

    Our GP said he does not know where to refer dad hence why he wrote to memory team wanting them to initiate prescribing like they did with donepezil but we have since learned that this os not their remit. I get this but to offer no guidance in directing me when you diagnose Alzheimers and dementia, along with the GP wanting me to ask them who can help I feel totally let down by both GP and memory team...if neither can help then who can?!

    Neurologist can look more into his sleep problem and see if there is an underlying reason for it other than he just cannot sleep or due to his Alzheimers. I'm not the expert here and I'm doing all I can...I have had to give up work 2 weeks ago as dad needs me more at home now and my priority is dads mental health and well-being.

    I have also learned today that our local authority have a Geriatrician whom could be of more help for dad. The GP is clearly struggling to cope with his needs and he has no insight to Alzheimers whatsoever so a geriatrician sounds better for his needs.

    Sorry I bothered you all, I will work it out
     
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    #8 Palerider, May 23, 2019
    Last edited: May 23, 2019
    No you shouldn't be sorry not at all, clearly things have reached boiling point for you and you might not believe me but I do understand as well as many here. I think if you feel melatonin should be trialled and there is a agreement from your dads memory team then it should be prescribed. Sounds like as usual certain professionals are passing the buck, its not uncommon when no one wants to take responsibilty. It might be worth speaking to your dads pharmacist, funnily enough they are also gatekeepers to accessing medication as well, and often can influence things as they make the recommendations on the basis of being pharmacists, they are also far more informed than doctors on meds. I have to go for a while, but there are a few more things I don't have time to write now....bare with me
     
  9. Bod

    Bod Registered User

    Aug 30, 2013
    1,113
    Zopliclone, work of the Devil!
    FiL was put on this, for some people it may work short term. Others it makes them worse, unless the dose is so high that falls are happening.
    For us, the answer was finding out why he was not sleeping, hunger, 2 slices of toast at bedtime, kept him happy enough to stay in his room most of the night.
    He'd been having bad sleeping for years, GP put him on repeat Zopliclone, it just made things much worse, got him off it altogether, things calmed down.
    Find the cause of his insomnia, then the cure will come, is he too hot/cold, bed uncomfortable/ in the wrong place, outside noise(or too quiet) try a night shirt instead of pyjama's.
    Just because he's had the bed for 40 years, and insomnia for 20 don't over look the obvious.

    Bod
     
  10. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    Thank you and much appreciated Palerider
     
  11. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    Thank you Bod, appreciate your input and yes I don't like the effects Zopliclone have on him. Just going to pray we get him in with a geriatrician and take it from there along with letting the pharmacist advised me kn dose for Melatonin...let's see if it helps, nothing to lose eh!

    We have made all the adjustments to dads needs in his bedroom... he stays there all night and never gets up to potter about or anything, he just is so exhausted each morning with not sleeping. He loves his bedroom and he has electric blanket that he loves, he has had that for so many years now. I did panic when it packed in as I was worried I would not be able to get the exact same...it's a simple switch on etc and many have fancy electric settings now but thank goodness I managed to source the exact one phew! Lol
     
  12. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    #12 Palerider, May 23, 2019
    Last edited: May 24, 2019
    Its ok, its a journey none of us want, but we are here doing what we do, sometimes we do it well and other days we feel despair and a range of emotions. I have checked for myself the prescription of melatonin, as far as I can see there are no interactions with his meds that you have listed, provided that is all of his meds -have you missed anything?

    There are some more things to think about, such as pain, this might seem odd, but for some people in old age lying still can become painful often undiagnosed osteo arthritis (OA). Its good practice to give someone with dementia good basic pain relief such as paracetamol.

    Can I refer you to the NICE guidelines given below:

    https://cks.nice.org.uk/insomnia#!scenario:1


    Best of luck
     
  13. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    Hi Palerider

    Chiropodist has not long left, she comes to our home to tend to dads feet...it's a blessing when it's so difficult to get him to leave the house these days. Thank you for posting that info and yes we are going to give it a bash...I will speak with the pharmacist and get it started tomorrow. Not sure it will have any effect either because I have tried several things and no joy but I want to try it as it is one thing we havent tried.

    Nope that is all the meds dad is currently taking, yes I have been thinking about paracetamol, years ago people would take aspirin daily...how long should I give it to him for? Or do I space it out like every other day or so? Would it be best taken at night? I fill his dosset box so it's easy to incorporate it for him.

    Thanks for your advice again, I really appreciate it and it's so hard sometimes when no one seems to want to help. GP receptionist today was so nice, she was concerned about me as a carer and said I must be cared for too.

    I have applied for a carers assessment and the lovely chap called me today to advise about a back log but he would post the form to me personally through my door this evening on way home from work and he did bless him..there are some real nice helpful people about indeed! Receptionist advised I should ask for respite assistance so I can get away for a break so I will ask about that when the time comes for me to have an appointment with the advisor.

    It's a blessing when you are informed about things that you had no idea about...its about helping one another and support is exactly that, we all have something we can give to help one another in order not to suffer and struggle alone.
     
  14. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West

    I forgot, there is one more reason why your GP won't prescribe and thats because it can bought over the counter, did your GP say this to you?
     
  15. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    Dad is under no psychiatrist or specialist for those who suggest going to them to scribe etc, he has no one and has had no one since diagnosis in 2016. He has his/our GP that's it. Memory team have no input after diagnosis and scribing him donepezil, they reiterated that to me this morning...we have no one checking on him or anything since 2016 and to me that's real sad.

    Things needs to get better in terms of seeking help and having someone in the know to turn to in times of need and I have to try.
     
  16. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    ;)

    Seriously, your on a tough journey and you do need to take care of yourself, maybe you can remind me of that in a months time;). You seem much better now you've got over what was worrying you. Let me know how you get on, these days I'm online alot......if you still have problems on the melatonin drop me a line. I can't see how it will help, but more imprtantly your like us all looking after a loved one who won't get better. As for the paracetamol, speak to your GP just to make sure they happy with recent bloods, but paracetamol 1g before bed. You rest now, without you -your dad would be stuck ;)
     
  17. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    Awwww thank you, you really have been very kind and helpful...you don't know what that means right now, a lot!

    I will relax and unwind now, going to look through some blanket patterns, I love to crochet and I'm making a blanket for my granddaughter who is due in October!
     
  18. Lynmax

    Lynmax Registered User

    Nov 1, 2016
    168
    Oh, Mimi, l love to crochet as well! I sometimes need to relax my brain to stop fretting about my mum ( typical middle stage Alzheimers issues) or my eldest child ( going through a toxic divorce in the US) or my own health and I find crocheting is just what I need. Today I sat in the garden, listening to an audio book and crocheting a door stop for the Sale Table at my WI group! A blissful afternoon! I even managed to ignore the phone, I knew it was Mum as she had already called me several times before lunch time - she constantly dials 1471 to call back the last caller which was me! I sneakily texted my sister and said it was her turn to phone Mum!
     
  19. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    The GP had not said that only that it needs specialist initiation. Health supplement stores don't stock it either...Holland and Barrat advised me it's a script supplement so their not allowed to stock it...I found this strange if it's a natural supplement why cant they. I'm off to the pharmacist today to get dad started on it...pharmacist said they will help with dosing and assisting me
     
  20. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    Oh bless you! It made me chuckle as it took me back to dad when we got him a mobile phone a few years back, he kept calling 999....we had a firm telling off by the police in the end and we took the phone off him...it just wasn't to be!

    Crochet is a beautiful thing, I love how it transforms so quickly and I will definitely be on the lounger in the garden over the next 2 days enjoying the weather and relaxing that's for sure!
     

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