She "says" shes in pain

JoannePat

Registered User
Jan 24, 2019
205
0
Hi all,

What do we do for the best?

I can't be at my mums care home 24/7, I keep being told "she had a good day yesterday", "she slept all night" "blah, blah, deblah".

Yesterday we visited my mum and she was in pain and locked (muscle seizures). She can't speak more than three words. But she can wince and contort her face. She was also knackered.

When I spoke to the care manager this morning to express our worries, she said my mum only complains about pain when we are there. She said they know about the muscle problems because she is having physio and the physio is working on her back to try and get some movement, although we are all agreed that she won't walk again.

I have asked if my mum can have some sort of relaxant and/or pain relief. The care manager is going to speak to the dr tomorrow and find out.

So now I have ranted, does anyone else have this situation - that the patient only complains of pain in front of them?

Jxx
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
Hi all,

What do we do for the best?

I can't be at my mums care home 24/7, I keep being told "she had a good day yesterday", "she slept all night" "blah, blah, deblah".

Yesterday we visited my mum and she was in pain and locked (muscle seizures). She can't speak more than three words. But she can wince and contort her face. She was also knackered.

When I spoke to the care manager this morning to express our worries, she said my mum only complains about pain when we are there. She said they know about the muscle problems because she is having physio and the physio is working on her back to try and get some movement, although we are all agreed that she won't walk again.

I have asked if my mum can have some sort of relaxant and/or pain relief. The care manager is going to speak to the dr tomorrow and find out.

So now I have ranted, does anyone else have this situation - that the patient only complains of pain in front of them?

Jxx
I don’t have the same situation but our GP asked me whether my husband was in pain. He is not generally but he does have the muscle and ligament seizing up that can happen with dementia and he is in pain when it happens. I would be asking the doctor and a lot depends on your mother’s individual situation. I do hope you can get help with the pain because even if it is only when you visit that is very distressing.
 

Louise7

Volunteer Host
Mar 25, 2016
4,683
0
When I spoke to the care manager this morning to express our worries, she said my mum only complains about pain when we are there.

Well your Mum isn't actually complaining about the pain, you are seeing it from her body language. We had a similar situation when Mum was in hospital after a fall. She was fully mobile and walking unaided prior to admission and it was recorded that she was unable to stand up after the fall. It was clear to the family from seeing Mum sitting in a chair and attempting to walk that she was in a lot of pain but the consultant dismissed this. We kept on telling the medical team that Mum was in pain and eventually, weeks later, they half-heartedly started to fill out a checklist to monitor for signs of pain but still didn't give adequate pain relief. They even noted in Mum's records "daughter thinks she can gauge Mum's pain better than anyone else but we have a checklist". To cut a long story short, when her pain relief was eventually doubled Mum stood up and walked again. The medical team recorded that this was due to 'fluctuating dementia' and it was implied that the family were making it up about Mum being in pain. We subsequently discovered they had missed a fractured spine :confused:

So it may not be simply a case of your Mum only complaining of pain when you are there, it could be that the staff are not monitoring for pain and spotting the changes in her body language which indicate that she is in pain, which family can see when they visit. It's awful to see someone in pain and for no-one to do anything about it so hopefully the GP will prescribe some pain relief for your Mum - you might have to be persistent!
 

JoannePat

Registered User
Jan 24, 2019
205
0
Thank you for taking the time to reply!

@Grahamstown it is distressing to see her in pain.

@Louise7 I have bought it up on more than one occasion to the supervisors and manager and they have all said that she only does it when we are there! this morning I wrote an email and hopefully now it will be acted on. I will keep on top of it.

It sounds like you and your family went through a terrible time.

Why do they think they know our family members better than them? I know that the carers are heaven sent and do a marvelous job, but I know my mum and I know when things are not right.

Jxx
 

Jale

Registered User
Jul 9, 2018
1,137
0
Mum frequently holds one of her hands and says she has broken it/fell over/trapped it in the door - I know that she cannot have done any of the these things but I do know she has arthritic fingers so it is possible that on some days she does have pain. However when the tea and biscuits come out her hand remarkably "heals". I think she does do this more often when we are visiting but whether that is a conscious decision I wouldn't have thought that she had that capacity now
 

love.dad.but..

Registered User
Jan 16, 2014
4,962
0
Kent
At dad'a NH the staff recognised signs of pain in dad through his body language and tbh I feel it is unlikely that your mum is not displaying those signs to staff when you are not there, more likely they are not good at looking for them! Dad when in moderate stages had phantom pains which was more to do with he couldn't express how he felt and that was how he tried to communicate that he knew something was wrong with him dementia wise but could not understand what that meant or why he felt as he did. His stomach was often the seat of 'pain' but it was really reassurance he was after and needed because his situation frightened him. I don't think this is the case with your mum...muscle spasms are extremely painful.

Pain relief such as paracetemol could be held by the care home for as and when it is needed. A muscle relaxant would also help. We can never know another's pain threshold or degree of pain and surely whilst not over medicating the care home should give her benefit of doubt to try to make her more comfortable? Could you arrange to visit if the GP visits to discuss directly?
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
Hi all,

What do we do for the best?

I can't be at my mums care home 24/7, I keep being told "she had a good day yesterday", "she slept all night" "blah, blah, deblah".

Yesterday we visited my mum and she was in pain and locked (muscle seizures). She can't speak more than three words. But she can wince and contort her face. She was also knackered.

When I spoke to the care manager this morning to express our worries, she said my mum only complains about pain when we are there. She said they know about the muscle problems because she is having physio and the physio is working on her back to try and get some movement, although we are all agreed that she won't walk again.

I have asked if my mum can have some sort of relaxant and/or pain relief. The care manager is going to speak to the dr tomorrow and find out.

So now I have ranted, does anyone else have this situation - that the patient only complains of pain in front of them?

Jxx
Yes
You know your PWD best - they have known you all your life so don’t back down - PWD have difficulty expressing pain& sometimes it’s only to a loved one they open up! xxx
 

Mydarlingdaughter

Registered User
Oct 25, 2019
205
0
North East England UK
My Mum also has pain spasms that staff say only happen when I visit.

They are giving her pain relief, before she was admitted to the home she was on a palliative care plan with district nurses visiting at home, as she has osteoporosis fractures. Hospital and GP had prescribed oromorth but she s=refused to take it once she knew what it was, but the amount of pain she was in was too much so she started to get "pain Patche' with mophine in.I appreciate they dont want to over medicate due to the effect on her cognition. The mortphine could affect her heart disease and appetite loss. However all in all the improvement since going in to care is amazing. For the first time in years her skin is warm to the touch, she has Gained weight, over the last 10 years I lost count of the amount of times I really believed she only had days to live. Now she is much more settled.
I cant really see what the home would gain by lying about how often Mum is in pain, but it is a bt worrying isn't it?
 

JoannePat

Registered User
Jan 24, 2019
205
0
Just a quick update and thank you to everyone who has taken the time to respond.

The GP has said she can have paracetamol.

When we visited yesterday she didn't have any pain until it looked like we were leaving. There was a carer on hand who distracted her and she was fine!

I am dealing with a shed load of emotions at the moment, my dad thinks that she is going to get better. I can't tip toe around him any more, so this morning I was straight with him. I have tried to do it nicely and i have tried explaining everything calmly, but this morning I just lost it. i know it is his wife, but she is my mum too. In the end i just said, dad, she is never going to be sitting up the table eating and drinking on her own, she is never going to greet you at the door and she is never going to come out of the NH, unless you are able to look after her.

I am sure lots of you are reading this and shaking your head at how i dealt with him, I am sorry, I couldn't help it. I felt like he was fooling himself.

I know I did wrong and now I have to live with that too.......
 

Jessbow

Registered User
Mar 1, 2013
5,677
0
Midlands
Just a quick update and thank you to everyone who has taken the time to respond.

The GP has said she can have paracetamol.

When we visited yesterday she didn't have any pain until it looked like we were leaving. There was a carer on hand who distracted her and she was fine!

I am dealing with a shed load of emotions at the moment, my dad thinks that she is going to get better. I can't tip toe around him any more, so this morning I was straight with him. I have tried to do it nicely and i have tried explaining everything calmly, but this morning I just lost it. i know it is his wife, but she is my mum too. In the end i just said, dad, she is never going to be sitting up the table eating and drinking on her own, she is never going to greet you at the door and she is never going to come out of the NH, unless you are able to look after her.

I am sure lots of you are reading this and shaking your head at how i dealt with him, I am sorry, I couldn't help it. I felt like he was fooling himself.

I know I did wrong and now I have to live with that too.......
Wasn't wrong at all. On the assumption that your father still has capasity, sometimes straight forward ''no messing' talk is needed.

There is only so long you can *pretty up* a desperate situation. Maybe give him a ring in a bit and have chat, might make you feel a bit better.

Dont beat yourself up, many of us have been there
 

JoannePat

Registered User
Jan 24, 2019
205
0
thank you @Jessbow , I will call him. He has capacity, and you are right i just couldn't pretty it up any longer. He has emailed the NH with some questions and hopefully they will help. He seems to take news/advise/help from other people. Then he tells me like I hadn't already told him! :mad:
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
Just a quick update and thank you to everyone who has taken the time to respond.

The GP has said she can have paracetamol.

When we visited yesterday she didn't have any pain until it looked like we were leaving. There was a carer on hand who distracted her and she was fine!

I am dealing with a shed load of emotions at the moment, my dad thinks that she is going to get better. I can't tip toe around him any more, so this morning I was straight with him. I have tried to do it nicely and i have tried explaining everything calmly, but this morning I just lost it. i know it is his wife, but she is my mum too. In the end i just said, dad, she is never going to be sitting up the table eating and drinking on her own, she is never going to greet you at the door anfor being honest then so am I!
d she is never going to come out of the NH, unless you are able to look after her.

I am sure lots of you are reading this and shaking your head at how i dealt with him, I am sorry, I couldn't help it. I felt like he was fooling himself.

I know I did wrong and now I have to live with that too.......

Stop feeling guilty... I’ve done the same thing with my mum about Dad not coming home. It’s a fact that needs to be faced, but you will probably have the same conversation another half a dozen times!

if you think your a horrible person then so am I
 

JoannePat

Registered User
Jan 24, 2019
205
0
Thank you @DesperateofDevon , i know you are not a horrible person, I see how much you help other members on here.

Why oh why do we carry this guilt around?

I spoke to him yesterday and again this morning, I can tell he is still in shock/denial about everything, and like you said, I will have to go through it again and again.

Heres to another day

Jxx
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
Thank you @DesperateofDevon , i know you are not a horrible person, I see how much you help other members on here.

Why oh why do we carry this guilt around?

I spoke to him yesterday and again this morning, I can tell he is still in shock/denial about everything, and like you said, I will have to go through it again and again.

Heres to another day

Jxx

my inner jukebox is playing the magic roundabout theme!

It gets wearing but I now am able to accept that no matter how much I explain Dads situation to Mum - she will ask the same questions today, tomorrow & next week.
I find that the saddest bit really- is it hope or denial?
Bit of both

sending hugs x
 

JoannePat

Registered User
Jan 24, 2019
205
0
Thank you for your hugs @DesperateofDevon , it means alot! Sending them right back at ya!

We visited my mum yesterday. She has taken another "turn", she now has a tremor in both hands, it only seems to effect her from the elbow down, if that is possible.

She still doesn't know who we are, I don't suppose that will ever change.

So now, not only will my dad not accept her condition, he is blatantly lying! I left the room for a few minutes and when I came back he was grinning from ear to ear. He said - mum just said that the lady outside is reading the new da Vinci. Did my dad forget that my husband was sitting 6 feet away. I looked at my OH and he just shook his head.

Later on I spoke to OH and he said she didn't say a word while you was out of the room!

So frustrating. It means if my dad ever conjures up the guts to visit her on his own, anything he tells me will be taken with a huge dose of salt.

Jxx
 

love.dad.but..

Registered User
Jan 16, 2014
4,962
0
Kent
Thank you for your hugs @DesperateofDevon , it means alot! Sending them right back at ya!

We visited my mum yesterday. She has taken another "turn", she now has a tremor in both hands, it only seems to effect her from the elbow down, if that is possible.

She still doesn't know who we are, I don't suppose that will ever change.

So now, not only will my dad not accept her condition, he is blatantly lying! I left the room for a few minutes and when I came back he was grinning from ear to ear. He said - mum just said that the lady outside is reading the new da Vinci. Did my dad forget that my husband was sitting 6 feet away. I looked at my OH and he just shook his head.

Later on I spoke to OH and he said she didn't say a word while you was out of the room!

So frustrating. It means if my dad ever conjures up the guts to visit her on his own, anything he tells me will be taken with a huge dose of salt.

Jxx
Just a thought..is your dad also displaying early signs of dementia?
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
Just a thought..is your dad also displaying early signs of dementia?
Actually I thought the same, it’s a possibility; my Mum has very convincing conversations with non existent persons! Those conversations are very real to her.
It could be delusional, grief & stress bring on those symptoms sometimes.
Or he just confabulates!
 

JoannePat

Registered User
Jan 24, 2019
205
0
Yes, we have considered my dads mental state. I hope that it is the "lose" of my mum.

When we visited her yesterday it was the first time I have seen him admit how bad she is.

Again, the tremor is even worse. She can normally put the drinking straw to her mouth but she couldn't even do that yesterday.
 

JoannePat

Registered User
Jan 24, 2019
205
0
Another update! I have just spoken to the CH about my mums tremor, and apparently, she doesn't do it when she is one to one with people. Its because there are several of us in the room (3 including my husband who spends most of the time working on his phone, so just sits quietly)!

Due to my dads complete lack of understanding on how to talk to her and how to react, I have said i will go in on my own on Thursday for half and hour and see how she reacts.

I am royally Peed off with CH, dad, and myself!

Large gin anyone?

Jxx