I moved into a Care Home two weeks ago and am settling down reasonably well. BUT I am having difficulty with my medication. I have reduced my daily dose of Prednisolone to 3.5mg and intend to stay on this for at least two monthss.. Very occasionally I get an excrutiating headache in the night, which I am assuming is a flare. The only thing which helps are two Co-Codamol Effervescent, dissolved in water. The flares usually occur at night and after taking the tablets I get a good sleep and wake up to find the pain has gone.
The first few days in the home were OK because I was on self-medication, but then I thought that i might as well let them do the reminding as I have rather a bad memory. Then I found that they had removed ALL my medication from my locker, including including some, eg Dulcolax, Dulcolax Suppositories and DulcoEase Capsules. which I use occasionally. I asked forthem back, but was refused.
The nurse obviously thinks I am on somethingt to to do with arthritis and all I can get is a prescription fot Paracetamol alone, which doesn't work.
I have tried giving her a desrcription of what GCA is, without much and I *think* she is getting a prescription getting a prescription for Panadol..
Can anyone suggest what I should do? She says she has spoken to the DR and I asked if I could speak him, but I am not expecting any success.
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Trenny
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Think, if you feel strong enough, or if you have a friend or family member to help you need to talk about your illness with the staff. It sounds as if the nurse is making the mistake that many do - confusing Arteritis with Arthritis.
Have you got your own GP or have you had to change to one that “covers” the Care Home? I think you do need to speak to him personally, if he’s not getting the correct information about you then he’s not going to be a lot of good, although hopefully your notes have been transferred if you’re new to him.
If you can get someone to print off my post it might help the staff understand -
Using you most polite and reasonable voice, and employing your best diplomatic skills, you need to raise a ruckus.
You know your medical history and your current conditions, and you also know that no one should be changing your medication regimen without having performed an in-person examination and having ordered and evaluated the necessary tests.
Be nice, but be insistent. And perservere.
You haven't surrendered your autonomy or decision making authority just because you've entered a care home.
Many thanks, PMRPro. I had been working along the lines you suggest before I received your post. As i was writing this, the nurse in question knocked and came into my room to give me my medication and to ask' if I wanted my Paractamol' I said 'no thankyou'.
She went on to say that she had arranged an appointment with the doctor attached to the home! But it has taken all this time and I am not there yet. I tried to explain that Arteritis was not the same as Artheritis, but I don't think she understood, although it seemed to make an impression.. Has anyone got a short and easily understood description of GCA?
Oh Trenny how awful! I can understand the care home taking charge of all medications because they are ultimately responsible for everyone's health and welfare, but you must be given what helps. Do you have friends, family a, minister? Anyone who can intercede on your behalf? There might even be patients advocates if you search about on the internet.
It is your right to have a private consultation with your GP to discuss the medication that helps. The fact that cocodamol helps, makes me think that it is not a GCA headache because nothing would help, but it should still be investigated. Did you know that there is something called a "codeine headache". Codeine itself can and does sometimes cause a nasty headache. I told a friend of mine that once, she changed her painkiller and her terrible heads went away.
I wonder if the manager of the care home would be sympathetic, perhaps you could show them a description of your condition via the Internet.
It makes me cross that you have made a sensible decision about your care now and in the future and somehow you seem to have surrendered some fundamental independence.
Do they object to cocodamol because codeine is habit forming or do they just administer paracetamol for everything ? I imagine if your painkillers were on your prescription you would be given them, so the first thing is to ask for a GP appointment.
Let us know how you get on. I hope this is only a blip in the care they offer. Respect should be their top priority. Where are you in the country?
Sorry to read of your difficulties. Moving into a care home can be a lot to adjust to without having to worry about your meds. In addition to what others have said..
Ask for a medication review with your GP (the care home cannot change your GP to "the homes GP" without your consent) If along with your regular meds there are some that you only need sometimes,even if very occasionally,ask for these to be prescribed PRN (this means "as needed") This will ensure the care home keep them in stock for you and they will be put on your MAR sheet (Medication Administration Record ),this will allow the staff to give you them when you need them,as long as it's within the dosage on packet.
Trenny, my heart goes out to you, as my Mum was in three Homes during the last 7 years of her life - from 89 to 97, so I'm not grumbling about that!
However, the first two were Care Homes where the staff are 'Carers' not Nurses. The last one to which she had to move was a 'Care Home with Nursing' where there was just one qualified nurse on duty 24/7. The majority of the staff were still 'Carers'. What I'm saying is that the staff in your Home, who don't seem to understand the difference between arteritis and arthritis may be 'Carers' and not registered nurses. You call them 'nurses' but I should check up on that if I were you, then you'll know who you're talking to and at what level.
I agree with the others - discuss this with your GP and help the manager and staff to understand your condition. One of the staff should be designated as your 'named' carer/nurse and be your first point of contact - when she or he is on duty, that is!
Monkeay has a very good point about getting some of your meds prescribed PRN so that you can ask for them at times other than the drug round.
Take care and I hope they are taking good care of you!
Thankyou - that was a thought that had crossed my mind but i dismissed it on the grounds they wouldn't be allowed to give paracetamol either! And nurses not knowing the difference isn't unusual either.
But it is a very valid point - I do hope you can sort this out Trenny.
Many thanks for this. I didn't realise the different types and will make discrete enquiriess.The current situation is that a day ors ago i was told that an appointment had been made for me to see the doctor on Monday, who was coming to the home. I said thankyou and heaved a sigh of relief. This was later amended to the Doctor was coming to leavea prescription. The rest of the day I was given my drugs as usual, but with Paracetamol being offered. Each time I explained that I would ask if I wanted it.
This morning (or was it yesterday?), the ?senior nurse knocked on my door and told me that the doctor wasn't coming after all, but would leave a prescription.
I have remembered (Yes, I do have a bad memory!) that I saw my Parkinson's doctor last week who made several changes to my medication and she was going to write to my GP to give details of the changes. Tomorrow I will 'phone the surgery and make an appointment with my GP and see what happens.
Are you able to request a home visit by your GP, who can then explain GCA to the staff. Or is there a family member who can speak to them, or to your GP.
I think it's only right and fair for you to allow them to control all your medication or none of it. That way they know everything you're taking and there's no question of a problem with two medications not working together. It would be a case of CYA (cover your ass).
I just wanted to add a suggestion to my previous comment.
If you would prefer to dose yourself you then should get a weekly planner. I use one because my memory is shot and I don't trust myself to remember if I've taken a pill or not. They could even set up the pill planner for you each week. But then that way you would be in control of your meds without the concern of missing a dose because of memory loss.
Thank you all for your replies. I'll let you know what happens in a week or two. I really appreciate your support. My main compaint, at the moment, is that I am not allowed to, say, buy an 'off-the-shelf' cough mixture for a cough. In stead I have to ask the nurse, who then asks the doctor for an appointment, which can take several days.
I have just made an appointment for my ears to be syringed (after a week of ear drops). Our surgery don't do this now and it has to be organised privately through the local hospital'. I suspect that they would confiscate the ear drops if they find them. I feel like a naughty school girl, but I want *some *control..
I resolved the issue by buying some effervescent Paracodol and hiding the tablets in my drawers. I also asked my doctor's surgery for a prescription !for a few and hid them among my drawers. As I was prescribed 100, which was far too many, I then worried about how to make them 'official', so handed them in for safe-keeping. How devious can I get! I am now on comfortable terms with the Care Nurse and even gave the night care nurse a copy of Kate's book to read the GCA pages., so hopefully they are a bit wiser!
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hi i'm jenny and new to having giant cell arteritis
