Is this pain?

JackyS

Registered User
Mar 14, 2010
175
0
Cheshire
Hello all, hope you can help. Mum has just turned 93 and was diagnosed with vascular dementia and alzheimers about 7 years ago. She's been in a care home for about 4.5 years and we moved her a couple of weeks ago to a nursing home, because she'd suddenly become bedridden and the bed sore she'd apparently developed a few weeks earlier had become "stage 4" so her nursing needs were severe.
She can't move, can barely speak and eats and drinks only pureed food which has to be spoon fed to her. She's skin and bones.
But she hasn't settled in the nursing home and tonight she's managed to say a few words to me that i could make out - along the lines of "please help me", "I want to go home", "I don't like it here" and "I just want to be with you".

All truly heartbreaking and I feel I'm failing her.

The nurses in the new home all seem lovely and they have spoken to the GP twice over the last few days to up her meds - she's now on max dose of co-codamol plus morphine for the once a day bedsore dressing change and (as of today) additional low dose (2.5ml?) of morphine before they turn her.
But Mum was very agitated and very distressed again tonight. Is that pain? Or could it be something else (e.g. unfamiliarity with the new nursing home, new faces etc)?
My friend has said her Mum went on to morphine patches which helped a lot. Should I insist on them?
Oh God, please will someone help - I can't bear to see her suffer like this. It's just awful (well, you all know this already, don't you!?) and I don't really know what to do. x
 

nita

Registered User
Dec 30, 2011
2,651
0
Essex
I know how you feel because my mother too was bedridden and in pain. Does your mother have any medical condition that could cause the pain? Mine had severe arthritis and chronic pain in all her limbs. She too was distressed when turned and I was advised to give her oramorph half an hour before repositioning or a change of pad. This didn't always work. At times her distress was worse than others so I think some of it was down to how her dementia affected her.

The things you say your mother is calling out struck a familiar chord with me. That is exactly how my mother was and it is truly heart breaking.

My mother's case may be different because she already had suffered from chronic pain for 7 years before developing Alzheimer's. She was on a variety of pain-relieving drugs including a Fentanyl patch, oramorph and pregabalin (an anti-epileptic drug also used for nerve pain). Despite this, her pain was never fully controlled and I think her inability to endure it was partly due to her dementia and how that affected her.

Another thought occurred to me as you say she is so bony - is she on an airflow pressure relieving mattress as this could make her more comfortable? My mother started on a Piezo one but the district nurses later upgraded this to a Barios one.

As another person mentioned, have you spoken to a palliative care nurse or specialist? Can the CH involve them in your mother's care.

Does your mother have CHC funding, by the way, as it sounds as though she may be eligible due to her distressing symptoms.

I think her distress may also be due to her new unfamiliar location. How was she before the move? It may be that she will settle in a while. My thoughts are with you.
 

nita

Registered User
Dec 30, 2011
2,651
0
Essex
Of course, the pressure sore could be causing pain - is it a sacral sore, at the bottom of the spine? Is it possible to ask her a direct question - "Are you in pain?" "Where does it hurt?"
 

JackyS

Registered User
Mar 14, 2010
175
0
Cheshire
Thank you both so much for your replies. Yes, Nita, I have asked her directly if she is in any pain - but her answers are not clear. Sometimes I say does anything hurt and she replies "no". But at other times she does seem to be answering yes.

I will call Admiral nurses for advice tomorrow (and thank you for that suggestion) and check what airflow mattress she is on. It is a sacral sore and probably not helped with her incontinence now. And she has a very twisted spine and has suffered badly with back pain for a long time.

I'm wondering if I should press for morphine patches as I understand that they provide ongoing pain relief - but I do understand that the doctors can't jump straight to full pain relief - they need to step it up gradually until they know its working so that they don't over-prescribe unnecessarily. It doesn't make it easy to watch though.
xx
 

Soobee

Registered User
Aug 22, 2009
2,731
0
South
Your post reminded me of my mum. I could not always tell if she was in pain or not and I used to worry that she couldn't tell me. I am sure that you are doing everything you can.

In my mum's case, she had two long-term grade 4 pressure sores, MRSA, was immobile and had contraction of her hand. She had tried pain patches previously but they caused her more confusion and constipation so she was not on anything other than co-codamol for pain. She often whimpered or cried on movement so I think that your mum's home are being very positive and proactive in offering morphine when moving her.

It seems to be a balancing act between effectiveness and over-medicating.
 
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JackyS

Registered User
Mar 14, 2010
175
0
Cheshire
Thank you Soobee and I'm sorry to hear that you and your Mum went through this too.

Yes, I'm sure you are right about the balancing act and I have been impressed that the home really seem to be monitoring Mum well and trying to get her pain under control.

I suspect my real problem is the guilt and fear that I feel. I just think there must be a better way of helping her - and its my job to find it!
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
She is obviously having a lot of problems with being immobilised and a pressure sore can be painful, so definitely explore this. Asking about a pressure mattress would be a good idea too.
However - is she like this when you are not there, or does she save it up for you and she is OK the rest of the time?
If she is OK the rest of the time it could be that seeing you is a trigger for this feeling of "needing to go home" which is so common in dementia.
 

JackyS

Registered User
Mar 14, 2010
175
0
Cheshire
Thanks Canary. I go see Mum regularly - usually at least twice a week and, since she moved into this nursing home a couple of weeks ago, I've virtually been every day - but this level of agitation and indicating she doesn't like it there is new.
I guess some of it could just be the unfamiliar surroundings and faces (although I have brought the same bedding and put up the same pictures as in her room in the Care Home). But the nurse also suggested that, as Mum's pressure sore starts to heal, it can get more painful?
It's just so hard to know what's what and I'm really worried we're all missing something which could help her settle and feel more comfortable. I hate to think that she's lying there, immobile, unable to communicate effectively and in pain.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Ah, I didnt realise that she had only been there a couple of weeks. I think this sort of reaction is par for the course for any PWD who has been faced with change - and thats without any pain thrown into the mix!

It sounds to me like the carers are trying to make sure that she is not in pain and as long as no-one is dismissing any thought that she might be in pain, then I would let it ride and see whether she settles down again. I think it takes a good 6 weeks to get over any sort of change.
 

Patsy Petal

Registered User
Sep 12, 2016
3
0
West Country
Thank you Soobee and I'm sorry to hear that you and your Mum went through this too.

Yes, I'm sure you are right about the balancing act and I have been impressed that the home really seem to be monitoring Mum well and trying to get her pain under control.

I suspect my real problem is the guilt and fear that I feel. I just think there must be a better way of helping her - and its my job to find it!

Hello JackyS - I've hooked up again after a long break and came across your posting. Oh how I sympathise with you. I feel exactly the same about my husband who has end stage dementia and now has Butec patches. I also feel there must be a better way and am struggling to find it. I cared for him at home until four years ago and have since then visited him for a few hours each day to ensure he gets the care he needs. Now, he's sleeping 24/7, has little appetite and it's difficult to get fluids into him. He has also become more agitated when receiving personal care, probably because he's even more confused and frightened. The care home doctor seems to have no interest in his comfort and well-being - he just said that it will be downhill from now on. I think his pain is now controlled but the side effects are awful. I hope you found a way through it all. We want so much for those we love and it sometimes feels a lonely battle.