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Steroids made such a change for the better but now lowering dosage!

Ton3

Registered User
Dec 2, 2019
12
0
Hi All

its been quite a while since i posted and boy what a change over that time. My MIL was found by my wife on her bedroom floor at the end of Aug 2020 had a stay in hospital for a few days due to a severe UTI and then came home, was ok for the first few days and then bang she took to her bed and just slept and slept, when awake refused food and drink, it was a nightmare. Getting a GP to come out was even worse and has continued like that throughout the whole of lockdown. The end result was my wife moved in to take care of her mother full time and i go round each day after work (luckily from home at present) which is 20 min walk away so not far and I stay over from Fri evening - Sun each week. MIL started to accept ensure plus drinks and gradually became more awake but had no capability of standing or walking, we eventually managed to get a hospital bed in her lounge but we had the difficult task of getting her downstairs as all agencies said it was not their responsibility? eventually we managed it and we contacted a local care group and then got a social worker involved who managed to get MIL assessed for CHC and we were successful in getting that passed and 2 carers 4 x a day coming in to assist with daily hygiene needs and changing as MIL double incontinent by now. MIL was angry and very rude to not only my wife and myself but towards the carers and this went on for months getting worse by the day with her swearing and trying to hit them. We changed care providers as a big part of the problem was all carers were of various nationalities with English not being their first language plus masks on MIL found it hard to understand them and she didnt like when the male carers tried to wash or dry her in intimate areas. The new provider understood the issues and luckily we now have an all female team whom all speak English as their first language so MIL understands them a lot more.

now as this seems a terribly long thread which I apologise for I will jump to the steroids, MIL was diagnosed with so many other things recently that she was put on Steroids and OMG what a change almost overnight, she became so much more friendlier seemed happier, laughed a lot and was very alert and even started eating again infact everything we put in front of her goes down a treat and drinking, tea, coffee, Hot choclate you name it, we just couldnt believe it. In the last month or so she has been like a different person and not one word said in anger from her lips even the carers noticed a change in her behaviour, We even managed to get her out of bed and into a recliner chair for a few hours at a time.

Sadly the consultant treating her conditions has said she cannot stay on steroids and we have to wean her off of them, well since this has started her dark moods are beginning to slowly but surely rear their ugly head and she is giving my wife a bit of a hard time again.
I just wonder really if a person has dementia and is at the point where their life consists of being almost constantly in bed, cant use a commode and has no interest in things other than being nasty to others around her wouldnt it be better that she is given steroids and has a happier but maybe shorter life rather than take her off of them and prolong the agony of dementia? Maybe I am being selfish and thinking of my wife and others who are at the sharp end of her tongue and moods.....
Does anybody else have experience of steroids and the mood enhancer they seem to be in some Dementia patients?
 
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Banjomansmate

Registered User
Jan 13, 2019
2,721
0
Dorset
I don’t have any experience of your problems but agree totally with your reasoning, to me that is a no brainer. Have you tried saying that to the consultant? Do they realise the difference the steroids make to her quality of life ( and everybody else)?
 

Ton3

Registered User
Dec 2, 2019
12
0
Thank you Banjomansmate for your reply, my wife has spoken briefly to the consultant about how the steroids have improved life for all concerned however i have suggested she has an in depth talk with him to really press the point home about just what a difference it does make. I just dont know at the moment what that means for the consultant in him continuing to administer if you know what i mean? I had not heard of the effect of steroids on some dementia patients so we were both just so amazed when the change happened and I am wondering if the medical world of dementia are either fully aware of it or looking into the conection?
 

Louise7

Volunteer Host
Mar 25, 2016
2,989
0
Hello @Ton3 Sorry to hear of the difficulties you've been having during lockdown. Was your MIL on any pain relief prior to being prescribed the steroids? From experience with my mum I've seen how pain can result in behaviour changes such as reduced eating/drinking, deterioration in mobility and also becoming angry with a low mood. There was a complete change once adequate pain relief was provided (although not steroids). However my dad, who does not have dementia, was recently in terrible pain and various tests/blood tests were conducted to try to find the cause. The GP felt that inflammation was the cause, possibly arthritis, and prescribed a steroid (prednisolone). The change in dad since he started taking this is fantastic - he is pain free and says he feels like a different person. Is it possible that your MIL has been in pain, or maybe even suffered an injury when she was found on the floor in August? Pain can be difficult to identify in those with dementia so it might be worth raising this possibility with the consultant if pain relief hasn't already been tried previously.
 

Ton3

Registered User
Dec 2, 2019
12
0
Thanks Louise7 you have probably hit the nail on the head as MIL was in severe pain since her fall and the hospital said she had a spine fracture but that it was an old injury and not due to that particular fall, the only pain relief given was paracetamol no matter how much we asked the GP for help with this. The steroids you mention are the exact ones MIL is on and this all came about because MIL had a terrible eye infection and due to the GP not coming out simply issuing eye drops and ointment for months her eye ended up bleeding and she went as an emergency to the eye hospital and they found issues that joined them up with Rheumatology dept and between them they diagnosed several diseases and now MIL is on the steroids and just starting home injections of some immunology drug (put on hold due to another UTi and antibiotics needed) so yes i will tell my wife to mention about her mums pain before the steroids were given.
 

Louise7

Volunteer Host
Mar 25, 2016
2,989
0
@Ton3 A fractured spine was what my mum had, and we were also told it was an old injury. As in your MIL's case, mum was initially prescribed just paracetamol but when eventually given codeine the difference was amazing. The family were repeatedly told by a consultant that mum wasn't in pain and that the symptoms were due to dementia so it unfortunately took some time to finally get some adequate pain relief. Hopefully the GP/consultant will listen to your wife and consider alternative pain relief for your MIL as it isn't good to be on steroids long term. Good luck, let us know how you get on.
 

Weasell

Registered User
Oct 21, 2019
1,282
0
Thank you @Ton3 for starting a very interesting thread.
Pain relief and dementia are interesting subjects, but with this one you and @Louise7 have made this post of interest to many!
Is the medication taken at breakfast time?
 

Ton3

Registered User
Dec 2, 2019
12
0
@Ton3 A fractured spine was what my mum had, and we were also told it was an old injury. As in your MIL's case, mum was initially prescribed just paracetamol but when eventually given codeine the difference was amazing. The family were repeatedly told by a consultant that mum wasn't in pain and that the symptoms were due to dementia so it unfortunately took some time to finally get some adequate pain relief. Hopefully the GP/consultant will listen to your wife and consider alternative pain relief for your MIL as it isn't good to be on steroids long term. Good luck, let us know how you get on.
Louise7
We also gave MIL Codeine but she has terrible trouble with Bowel movements and has been compacted for such a long time, we are back on Movicol, suppository, and have Enemas ready!!! And also when she was on Codeine she was not worth a light and seemed to be knocked out. Now tonight she has turned her food away and is obviously in discomfort with trapped wind. We tried wind tablets and on steroids she could swallow them now she is back to not knowing how to and just chews everything. We will have to see what consultant says.
 

Ton3

Registered User
Dec 2, 2019
12
0
Thank you @Ton3 for starting a very interesting thread.
Pain relief and dementia are interesting subjects, but with this one you and @Louise7 have made this post of interest to many!
Is the medication taken at breakfast time?
Hi Weasell
Thanks, The steroids are given first thing in the morning, this seemed to make for a lovely day but now with the reduced amount not so much.
 

silkiest

Registered User
Feb 9, 2017
267
0
Hi @Ton3 steroids can be an absolute boon in a lot of conditions but unfortunately long term use can cause a lot of serious problems so I understand why the specialist wants to cut them down. They dampen the immune system so people on long term steroids were part of the group advised to shield from COVID. They can cause thinning of the skin and excessive bruising which is a problem when people are less active as the risk of pressure sores is increased. They can also precipitate diabetes or severely upset the blood sugar control of those who already have it. Unfortunately many medications come with increased risk on long term use so it is an absolute minefield trying to negotiate the safest path for people with more than one long term health problem. Short term they can be mood enhancers but they have also been known to make dementia worse - saying that my mum with Alzheimers is on long term prednisolone but the specialist has lowered the dose as much as he can without exacerbating her mobility problems.
Maybe its time for a very frank discussion, ask the specialist what their specific concerns are and how relevant they are to your MIL at her age and stage in life versus her quality of life.
 

Ton3

Registered User
Dec 2, 2019
12
0
Hi @Ton3 steroids can be an absolute boon in a lot of conditions but unfortunately long term use can cause a lot of serious problems so I understand why the specialist wants to cut them down. They dampen the immune system so people on long term steroids were part of the group advised to shield from COVID. They can cause thinning of the skin and excessive bruising which is a problem when people are less active as the risk of pressure sores is increased. They can also precipitate diabetes or severely upset the blood sugar control of those who already have it. Unfortunately many medications come with increased risk on long term use so it is an absolute minefield trying to negotiate the safest path for people with more than one long term health problem. Short term they can be mood enhancers but they have also been known to make dementia worse - saying that my mum with Alzheimers is on long term prednisolone but the specialist has lowered the dose as much as he can without exacerbating her mobility problems.
Maybe its time for a very frank discussion, ask the specialist what their specific concerns are and how relevant they are to your MIL at her age and stage in life versus her quality of life.
Hi Silkiest
MIL was on 40mg down to 30mg and now on 25mg and the downturn in her is almost immediate. I agree it's time to discuss with her consultant what the options are if any regarding her quality of life. MIL was diagnosed in 2018 with mixed dementia, vascular and alzheimers but she refused to believe it and carried on as if nothing was wrong, up till her collapse/fall she was still living independently and taking care of herself as she always had done, the drastic downturn in her condition came as a shock to us and sadly she had point blankedly refused to put POA's in place so an added worry now for us.
 

silkiest

Registered User
Feb 9, 2017
267
0
Hi @Ton3, I'm sorry to hear MIL won't consider POA's, maybe you could look at the paperwork yourself and get it ready incase she changes her mind. My mum denies dementia but is aware she is starting to struggle with bills etc and has agreed to help because of that.
The drop in dose from 40mg to 30mg is large if she has been on them several months. I would be asking to go back up to 30mg then maybe try reducing in 1mg steps over a longer period of time. The tablets are available in 1mg and 5mg so unfortunately it would mean more tablets for the in-between doses. My mum is down to 7mg but it has taken a long time .
 

Ton3

Registered User
Dec 2, 2019
12
0
Hi @Ton3, I'm sorry to hear MIL won't consider POA's, maybe you could look at the paperwork yourself and get it ready incase she changes her mind. My mum denies dementia but is aware she is starting to struggle with bills etc and has agreed to help because of that.
The drop in dose from 40mg to 30mg is large if she has been on them several months. I would be asking to go back up to 30mg then maybe try reducing in 1mg steps over a longer period of time. The tablets are available in 1mg and 5mg so unfortunately it would mean more tablets for the in-between doses. My mum is down to 7mg but it has taken a long time .
Thanks Silkiest
My wife has been told to reduce by so many MG by a certain date Dosage will be15MG and stay like that till told different. Re the POA I just am unsure who needs to sign or witness it if MIL was to have the clarity to agree?
 

lollyc

Registered User
Sep 9, 2020
207
0
Thanks Silkiest
My wife has been told to reduce by so many MG by a certain date Dosage will be15MG and stay like that till told different. Re the POA I just am unsure who needs to sign or witness it if MIL was to have the clarity to agree?
This may sound a little left field, but when I had a dog on long term steroids, I was told that giving them every other day minimised the risk of side effects, without much detriment to their effectiveness. No idea if it's the same in people!
I agree that a sensible discussion with the consultant may be the way forward. I think sometimes the medical profession assume that the family will want to do everything to extend life, but can actually be quite open to a "quality, not quantity" conversation. It must be better for MIL's general health to be eating, drinking and happy, than angry and unco-operative.