Emergency Meds in Respite

[Misstickle]

I care for my 81 year old husband who has severe COPD/emphysema and is on oxygen 16/24 hours.. He's just gone into respite care for 2 weeks so I can get a much needed break. As on previous occasions I'd put his emergency steroids and antibiotics into a separate bag from all his other meds, clearly labelled "to be taken in case of emergency should my husband ask for them". I was told by the senior nurse in the home that they would not be able to give them to him until they had spoken to a Doctor. I pointed out that my husband knew exactly (sadly from previous experience) that as soon as he felt he had the start of an exacerbation/infection coming on how important it was to start on the emergency meds immediately. I also pointed out that it could possibly take hours for them to be able to contact our Doctor should it be a night-time or weekend for examaple. Her response was that "I could lose my job if I gave them to him before speaking to his Doctor" . My response to that was that my husband could lose his life if there was unnecessary delay to starting them! The last exacerbation he had resulted in a blue-light ambulance trip to hospital when it transpired he had pneumonia and sepsis resulting in 5 weeks in hospital. So we certainly know how time can be of the essence in starting this emergency treatment. What is wrong with the world these days - why can't commonsense be brought into the equation? All healthcare providers seem to want to do is spend their time literally ticking boxes on lists rather than listening to the people who are actually suffering. I fully understand the need for accurate and diligent records to protect both carers and the people being cared for, but things have got to a ludicrous stage when the patient isn't actually allowed to be put first. There was also a problem with his Aromorph medication. They said they wouldn't be able to give it to him whilst he was there as it only said "to be taken as directed" on the bottle rather than what the actual dosage was. Had I not been able to get to our surgery to get that sorted out my husband would have had 2 weeks without a vital medication. Fortunately I've got a couple of days to recover from all this additional stress before I go away for a week. I'm 78 years old, because I have a small pension in addition to the State pension, I get paid absolutely nothing for doing literally everything for my husband 24hrs a day, and the only thing we do get is 5 weeks a year for respite care. I then get all this hassle when I'm supposed to be having a break from it all! Sorry to be ranting so much, but I am so appalled and livid about it all I just had to get it off my chest somewhere! From this forum I have learned so much about my husband's condition, which helps in my care for him. I've also learned that there are always people so much worse off, which stops me feeling sorry for myself and I've also learned that there are still a lot of kind, caring and sensible people around. Thank you for keeping me sane!

[sassy59]

It does seem as if common sense no longer exists but I hope your husband will be fine in respite care and not need his rescue meds. Can you phone your GP and explain whats been said?

Enjoy your break and try not to worry. You deserve your holiday. Xxxxx

[beech]

I’ve “liked” your post out of support for you, but I definitely don’t like that you and your husband have to put up with this nonsense. Unfortunately the need for timely medication, often in a regime peculiar to a particular person on an as needed basis rather than strictly by the clock seems to challenge the “jobsworth” approach you are encountering.

I’m afraid I’m not sure of the answer to this other than seeing his GP to get an official letter perhaps to go in his notes with their instructions about his medication.

I used to encounter the most frustrating ignorance in hospital with both medics and nurses about my mother’s Parkinson’s medications - it was shocking that those who specialise in healthcare couldn’t understand the importance of timely and self-administered medications in a chronic condition 🙄

And respite is supposed to give you a break from worrying and working - I hope you can get some rest away from all this caring, not that it is easy to put it to one side x

[wheezyof]

The rules are so strict. However I'm sure the staff at the respite centre are pretty prompt with contacting doctors etc. Your husband will be fine. Enjoy your well earned break. (As for ranting, feel free to let it all out here any time) xxx

[corriena]

The world is to risk advers. 😕

Enjoy your well earned break 😊

[mrsmummy]

Many care homes provide a locked drawer for each person's use. My neighbour had a locked drawer in her bedroom in which she kept her purse, etc. Could he keep them there, under lock and key but close enough so that he could access them if needed without asking for their help?

[Misstickle in reply to mrsmummy]

The problem with that is that my husband, due to sometimes shaky hands, finds it too fiddly to take the tablets out of blister packs etc, and the staff “would not be allowed” to actually do that for him and pass the pills plus water for him to take, eg , actually administer the drug taking. They suggested I went in to do that for him!! Respite??! Seriously, I know we’re talking about something that hopefully won’t happen, but it’s just highlighting what a mad, sad world we’re living in these days.

[knitter]

so sorry that you are having such difficulties ....but one thing I noticed was that you don't receive any financial help . My parents got the Attendance Allowance to help with their care.....its non means tested .

Could you check with your Citizens Advice Bureau or look online first.

[Misstickle in reply to knitter]

Thank you knitter. My husband is in receipt of Attendance Allowance, but that is for him to spend on whatever he wishes. It would only buy him about 4 hours a week for professional carers. However it helps towards: cost of running the car (too old for free mobilty allowance) : over £400 per annum on stairlift service/maintenance agreement (which he had to fund himself at cost of over £4000) : purchase & running cost of electric mobility scooter: car parking fees for the many hospital/ clinic appointments (he does have a blue badge but we still have to pay to park here): Top-up respite care fees:. The list is endless. Sorry, I’m verging on getting too political here. I’m just basically angry about how elderly people, who have worked hard all their lives end up having just that little bit too much income so have to pay through the nose for everything. As I said in my initial post, I am inclined to rant a bit!

[Badbessie]

Ring the Doctor now.....I am sure they will be happy to inform them of your husband's emergency meds.

[2greys]

As strict as any policy is, they have been prescribed by his GP. They are his property no different than false teeth are. Taking them away from him, without his express permission would be on dodgy legal ground, it could also cause him hardship just from the anxiety caused. He is only there to give you a rest, not because he needs to be there for his own health reasons. If he is fully Compos Mentis there is no reason to treat him like a child, how degrading for him, an affront to his dignity. I hope this situation can be resolved asap.

[Yatzy]

I’m glad you’re able to have a break, Misstickle (like the name!). I think you’re probably extremely tired now and perhaps worrying very much about leaving your husband in the care of others for two weeks. But REST TIME now!

Write a clear list of your husbands drug needs and times, get your GP to provide a note or approve one you’ve written, giving the signs of an exacerbation as usually occurs for your husband.

I’ve dealt with this situation a lot in the past with my father, and now my mother. The care staff can only work to very strict guidelines on drug administration, and there is always a GP on call if your own GP is unavailable Your clear written guidance will help them to decide when to call a doctor. With staff approval, I’d sometimes sellotape the list of urgent needs above his bed head.

My father had complex medical needs. He was never quite in his home routine in respite carewith regard to drugs, but the system worked mostly.

He was always glad to come home! He enjoyed all his home comforts much more for a while.

The attendance allowance is well worth applying for. It is not means tested, except it won’t be available if you have savings above £14,000, though I think this has recently been raised.

Enjoy your well earned break!

[Roysieboy]

Hello Misstickle. This is a good place to rant or let off steam. People on hear do listen and give good replies. The reply about getting a letter from your GP about ur husbands self medication seems like a good idea if the dr will do it. Anyway u have a good respite time off. Good luck to u and ur husband for the future. Best wishes. 👍🤓

[helenlw7]

I totally agree to there being a lack of the ability to use common sense nowadays. Your husband’s emergency pack is prescribed to him - he should be allowed to take it when he knows he needs it! It must be so worrying for you. I think the root of the problem is that people are frightened of being sued! A few years ago I was having problems getting delivery of an injectable med I have for Rheumatoid Arthritis. It is prescribed by the hospital which was sent to another company to be delivered. The person at the hospital needed to speak to me but wasn’t allowed to leave a message on our answer phone because the message said ‘if you need to leave a message for Mike, Helen or Rachel.... ‘ Somebody else might have heard the message asking me to call the hospital! Absolute madness! Sorry for the long message.

[Dedalus]

Hope your GP will be able to call them and get things sorted so that you can enjoy your free time. Hope you have a wonderful time - you deserve it xx

[Ergendl]

((((Hugs)))) Misstickle

[Misstickle in reply to Ergendl]

Thank you - I’ve calmed down now, it helps getting things off one’s chest.