Medication support

I've read a lot of the posts on here with interest. Whilst comforting that I am not alone, it's concerning that there are so many issues and a lack of support when people are discharged from hospital. My partner suffered a brain haemorrhage as a result of an AVM in October 2015. He was discharged from hospital just before Easter and we've just been left with no support apart from friends and family. He is independently mobile, albeit with some left sided weaknesses and balance issues, and can make a cup of tea, his breakfast etc but cannot remember to take his medication, even though he has reminders set on his mobile. This obviously frustrates me and we've had a few fall outs as a result. Has anyone any advice on ways we could try to help remind him? Also, we've started (with the advice of the GP) to reduce some of his medications - specifically carbamazepine. He was only given this as a form of sedative to settle him when he first arrived in the rehab unit in January. He's constantly exhausted and struggles with motivation to get up and then complete basic tasks which I've tried to encourage to establish a daily routine. I feel I'm constantly nagging him to do things. It's really draining and I'm becoming an emotional wreck which isn't helping him at all. I'm sure I'm not alone but I'm beginning to panic, as I'm returning to work in just under 3 weeks time and I need to be confident he can remember to take his medication. He will refuse external help, so would be interested to know if anyone has been through the same and how they dealt with it?

15 Replies

oldestnewest
  • Hi Gemma,  I don't know if it will work for your husband but we have a big desk diary and I write down hour by hour what needs to be done.  My husband is quite obsessive now about looking in it  (in fact he does it so often it drives me mad but it does seem to do the trick). If you get one with times printed on, you could try writing his medication needs in the diary.  It's worth a try.  Best of luck, thinking of you.

  • I don't know if this will help but, I bought a tablet dispenser from bettaware which I put a sticker on from Monday to Friday. It has seven units with four flip tops on each. I dispense the tablets into each part so I can tell if I have forgotten to take them. 

    I leave them with my mugs so I see them when I make a drink. It might be worth a try.

    I had a SAH so have similar memory problems. Best wishes to you both, try to be strong, your husband will appreciate what you have done, are doing, for him as he improves. My mum was my rock but she lived in Coventry and I lived in Hampshire so she had to leave me here after 6 weeks. She made me cook a full roast dinner to make sure I turned the gas off etc! She still visits me once per month for the weekend but she phones me every night, these days it's facetime, so things feel brighter when I see her everyday. 

  • Gemma, my husband suffered a brain injury at the end of 2014 and, when he was discharged from the rehab unit (too soon I believed) it was into my care.  However, I very quickly learned to be very vocal and pushy on my demands for support. If you don't have an Occupational Therapy referral shout very loudly to get one.  You might be lucky and have some community OT with brain injury specialists, but if not, even generalists will be able to help. They have lots of experience in the sorts of strategies people need to remember things, build a routine, re-build their lives.  I eventually also got access to the 'social inclusion' unit and they were able to help my husband find activities he could do - but only after OT had helped him relearn how to plan going out.

    Hope that helps.

  • Just tagging on to say that it actually helped that the 'coping/managing' ideas weren't my ideas, they were from a 'professional'.  Somehow that made them more valid!

  • Hey, I got interested in OT. Could you elaborate on the subject? Im obviously not familiar with it and once I move to the UK I will be looking for any kind of help I could get. Thank you in advance. Iwona

  • Iwona, I think this link will give you some basic information - here's the first paragraph from the page also : 

    nhs.uk/conditions/occupatio...

    Occupational therapy provides support to people whose health prevents them doing the activities that matter to them.

    An occupational therapist can identify strengths and difficulties you may have in everyday life, such as dressing or getting to the shops, and will help you work out practical solutions.

    They can work with you to identify goals that can help you maintain, regain, or improve your independence by using different techniques, changing your environment, and using new equipment.

  • Hi Gemma,

    This is a serious piece of kit that both alarms and flashes and will NOT shut it's face until tablets have been removed !

    unforgettable.org/lockable-...

    There is also a discreet, vibrating version for 'out and about' scenarios and other prompting ideas if you have a scout about the website. Is it possible you can text him from work with a reminder ?

    6 months on from a brain injury is still very early days in terms of recovery, so you and your partner are  doing really well so far. Fatigue and lack of motivation are common problems, especially depending on the location of the injury in the brain. Have you been in touch with Headway yet ? A great source of help and advice. There may also be a local group you/partner  could attend. I agree that aftercare can be sadly lacking  - one to see your GP about.

    Is there a relative, friend or neighbour that he would tolerate welfare check/help from in your absence ?

    Kind regards,

    Angela x

  • I borrowed one of those pill dispenser thingies  from local nhs dept  :-) no need to purchase  x

  • A freebie from the NHS  Moo ! Nice one ! : ) x

  • free to borrow - I sent it back after a few months .... but good service nonetheless :)

  • Hi 

    After my CVST in Oct 2014 - when I had very bad memory issues - my sister came to stay for a few days. When she had to leave - and it had become clear that I was unsafe to be left alone to take medication - ( I once couldn't remember whether I had taken meds given me or not - even within seconds of her handing them to me - NOT was the case - found them months later at the bottom of the washing basket) - she arranged carers to come in twice a day - simply to ensure I had taken my meds. Nothing more - other than a general chat and sometimes a short evening walk... this happened for a couple on months by which time I had arrangements for community neuro rehab to visit ( wasn't automatically put in place - have to ring to get help) and one thing that they lent me ( sent by post ) was a device ( can't rememberr the name sorry) round pill dispensser - bit like an automatic cat feeder - that rang / buzzed/flashed when needed to take pills - think someone else here described something similar. Pharmacist assisted setting it up and I just borrowed it from the " assisted technology ??" department. Maybe better that someone else talks to him about these things - could be one of those "too close" things - like learning to drive from your dad ? :-)  

    Hope you find the help you need when you go looking for it ... 

  • Hi Gemma, welcome, and I would agree with all the wonderful replies above. Wish I'd known about the pill dispenser when I was in such a terrible state after leaving hospital. I was very fortunate to have a partner who could come home several times a day at first, and a brilliant community neuro team visitor. Managing medication was a nightmare for me too but in a different way to your husband. I would be reminded to take medication by the fast onset of severe pain, but as the pain relief never lasted through the required intervals, was in danger of taking too many tablets rather than too few. This caused all manner of problems. I started with a similar system to the diary suggestion from exhaustedwife but it deteriorated as I was taking responsibility (or trying to at least) for it myself. Eventually after a double dose one day, it went out the window and I changed to a sheet of A4 paper with the pills set in pre-drawn boxes with the times of the day written above. This was combined with alarms on my phone - but the pain I was in acted at the best reminder. Phone alarms only work if your phone is strapped to you. I use my phone alarm as a reminder for other things now - six months on, but it frequently fails if I'm in one part of the house and the phone is somewhere else. The dispenser that angelite suggests sounds like the best idea. I'm wondering if your husband is ready to join the little community here? It may help with his frustration if he realises that's we've all been through where he is now? It gave me such hope. Through reading everyone's posts I realised that things Do move on, even though there are lots of days it doesn't feel like it. It helpe me to understand its not going to stay in one place.......that things do slowly improve. Also, check with your community neuro team if they run any brain injury rehabilitation groups. I've attended this and hope to move to my local Headway Group very soon now that I can go out unaided.best of luck with everything x

  • Hi 

    Like others have said it is early days.

    As for reminders I have found throw every possible thing at a problem and see what works. I have learnt theres usually no one trick that works for everything. 

    Your chemist can supply tablets in a "nomad" system. This gives four times a day per week dosage. I tried the pill box method but kept forgeting to fill it up....blasted memory !!!.

    As for remembering to take them I use routine plus reminder on phone and even a white board to tick when taken.

    Outside help is there.....just shout loud and often....they will get sick of hearing you and begin to help. Social services , ot and gp are good starting places.

    I am sad to say that it was only after me and my wife seperated that help was thrown at us. On the plus side we are happily back together and getting through it.

    My bi was 17 years ago so I would hope things have improved in support.....but I have a feeling they have not.

    The biggest battle you may both face is accepting any changes in your husband. Hopefully this may not need to happen and it is still early to know for sure.

    Good luck and remember as soon as someone asks if they can help the first word is YES then follwed by HOW.

    Pax

  • gemma 1806 you need to go to your gp and get him reffered to a psychiatrist thats what my wife did because she couldnt cope.

    i became noise intollerant and we had noisy neighbours, my wife used to dread coming home just in case they annoyed me and id let rip.

       it was at this point the gp suggested a mild anti depressant, i told what he could do with it and how far up to stick it and it was at this point he offered me the choice of carbamazapine or epilim, both of which are used as a mood stabilizer but are mainly used for epilepsy, im on 1000mg twice a day.

      remembering to eat and take my meds is a problem.

         all the symptoms your partner is showing is natural for someone with a bi, the mood swings aggression inappropriate sexual and verbal comments both in and out of doors, the only thing im awre of is i cry for no reason......only because i can feel the tears running down my cheeks.

    besides a psychiatrist you also need to find your nearest headway group

             good luck and welcome

                   steve

       if need knoledgeable answers before an appointment come on here first

  • Hi i was diagnosed with a brain tumour in october 2015 now removed i am being accessed the extent of the brain injury i have as a result. I can so relate with your husband I am knackered but its not motivation thats the issue its the Brain injury. I have been doing as much as i can on the days when feel a bit better but apparetly this was the worse thing i could do. I am now seeing a neuro health pyschologist who is helping me with fatigue and my memory problems amongst others but she also put me intouch with headway the helpline sent me some stuff on memory and fatigue really good i think would be useful. I got my neuro heath psyhc cant spell through my nurse specialist did ur husband have someone assigned to him in hospital she has been more useful than gps and consultants appart from the surgery bit lol xx

You may also like...