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Elderly mother with dementia

Although my mother is in a nursing home she is experiencing bad pain before passing stool. She shouts during these episodes but I have the impression the nurses here think this is her dementia or her way of getting attention. I know my mum and she tells me that she is having pain .. she is obviously suffering.

Doctors have asked the home certain questions but other than that “check” nobody seems to have a solution to this situation. She receives 2 paracetamol which after 20” + she appears to relax and no longer complains.

I am aware of the medical professions aversion to heavy pain relief but at 95 why should my mother endure any long lasting pain?

Who should I pressurise to get more action (bearing in mind the fact that appointment requests take up to 3 weeks to fix) !?

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Hi Tishtosh57,

A warm welcome to this community, and I hope we'll be able to help you in some way.

It is true that shouting out can happen with elderly people with or without dementia, but it does seem really unsettling for you to think that your mum is suffering. And as you say, why on earth would anyone not listen to you when she is in the final stages of her life and may be in pain?

I think you have to get tough with this. By all means give credence to the idea that the shouting out might at least be partially due to her general condition, but I think you have to insist that they take this seriously.

I can't understand why the home wouldn't be trying to deal with the root cause first, i.e. why passing a stool is so painful. Do you think they may know the reason but aren't revealing it to you?

For example a physical reason for this, but one that can't be relieved by surgery because of your mum's advanced age? I think that might be an outside possibility and I'd certainly be asking more questions from that viewpoint too.

I'd also be asking why she could not have stool softeners or fybogel to help her.

But finally I too see absolutely no justification for denying her any sort of pain relief which will help her, at her age.

It's ridiculous for the Home to speculate that she may be 'attention seeking'. My own mother was accused of this when she began shouting out at intervals, even though that was not caused by any kind of pain. It's of no help to anyone and also achieves nothing.

I'd ask for a meeting with her Care team and ask some searching questions and be really firm about asking for what mum needs. Try for this at the Care Home end if it will be quicker than mum's GP. Homes often have quicker access to GPs than do others.

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So many lovely replies to my plea .. feels better already to k’ow There are other people out there with similar issues.

In the we went to hospital where many tests were done .. some invasive (as mum is doubly incontinent due to not walking). Turns out she had bladder infection ... I think pads and not drinking enough are the cause.

I can say that mum does receive stool softener regularly and her stools are not hard now.

I don’t expect mum to have surgery but I don’t want her to suffer unnecessarily at 95. It seeks though that nobody wants to give strong meds even the hospital started with paracetamol first. I think that was enough to help her .. it was her 3rd dosage of that day.

Now I want to make sure the home take the correct action .. ie when she has pain that they insist the surgery send a team to examine and diagnose then prescribe antibiotics.. this will happen a lot so why don’t they anticipate this?

If I had not suggested hospital that infection could have developed and become sepsis!

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Honestly, this can be a dementia problem. My 101 yr old mum is convinced that she spends all her time in the toilet, passing motions. We know she does not, we have checked but time after time I find her crying when I go in to see her. 'I have one of my tummies today' she says, 'I've been in the toilet all the morning.' I remind her that she has told me that almost every day for three years but she tells me 'it's different today' - she tells me that each time too. I settle her down in her chair, give her a cup of tea (which she assures me she cannot drink in case it send her to the toilet again), she drinks it and settles down to happily watch tv. It is just an obsession. Have you checked to see if her stools are soft, it is possible that she has piles, many old people have which she may feel when she is passing a motion. I took mum to a specialist privately and he assured us that there is nothing at all wrong with her but expect she will tell me the same every day until she dies. Your mum's screaming may have just become a habit. Is it possible to distract her when she is going and see if it still happens?

Good luck with this, it is terribly frustrating - I know each time I visit exactly what the conversation is going to be!

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My mother is doubly incontinents due to mobility issues .. received stool softener do not constipated but dehydrated as won’t drink. Now obsessed with cold and prefers warm drinks. Doesn’t take a genius to realise warm drinks are the way to go. Unfortunately only I wil’ Look after mum as she deserves.

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Such a difficult dilemma for you and your dear mum. I really can’t see why the home won’t help your mother given her age and health issues. She cleary needs pain relief and should have it.

I hope things improve soon. Xxxx

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Thanks I will be asking them to change their habits ie be proactive and call surgery for help.

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Hello Tishtosh57 and welcome to this community.

I see that you have been given some good advice from our members. In the first instance it would be helpful if the underlying cause could be established - why is it that your mother is experiencing this pain before she passes her stool?

From what you say the paracetamol seems to give her relief relatively quickly. Maybe it might help if she could be prescribed this around the time when she normally has a motion. Could you perhaps speak directly to the staff who care for your mother and see if they can do this? Stronger pain killers can unfortunately themselves cause constipation.

Best wishes and please let us know how you get on.

MAS Nurse & Moderator

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My mother hasn't got dementia but sometimes get very panicky when on the commode and when she's passing a motion she sometimes calls for me and i have to hold her hand until she's finished. She doesn't complain of any pain but just seems frightened by the whole experience for some reason.

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It’s true that mum often tells le when she passes water or defected and I tell her to relax as she is wearing pads. She forgets that she is immobile.

I know when she cries that it’s pain not emotional

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I can relate to this as we had the same with my sister. She would howl with pain in her tummy and we even called an ambulance a couple of times. She went into hospital for extensive tests but they couldn't find anything wrong. This went on for some time but did stop eventually. We were told it could be the dementia but were certain it wasn't. In hindsight it actually was and it was a phase of this terrible disease. The same as her obsessions and need to be sat on the toilet every 5 minutes. If all investigations reveal nothing wrong then it actually could be the dementia. X

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In some cases I realise worry causes her to be upset because she is incontinent due to mobility issues. Not because she is not aware of her toilet needs.

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I am wondering if your mother may be dehydrating, and therefore passing very hard stools, it is a very common occurrence in the elderly, and is possibly the easiest to check for. There are other possibilities, but worth asking the staff to check first, your mother is bound to get agitated if she always gets pain, and this can be mistaken for dementia agitation. I used to nurse in a geriatric unit, and this was often the reason.

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Her stools are not hard ... they give regular softener. I think it might be internal hémorroïdes so when they start the treatment that will help pain in anus.

My mum had bladder infection though so that’s where the abdominal pain came from.

Now I want the nursing home to be more proactive!

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It might help your mum if you asked about a daily Microlax enema or glycerin suppository. If it is used first thing in the morning it will work in conjunction with normal peristalsis. Otherwise a faecal softener might help eg Macrogol twice a day or maybe Docusate.

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Yes she receives softener

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I forgot to say that if your mother is in the residential category she is entitled to a district nursing assessment. They would be able to advise on a strategy to manage this and prescribe as necessary. They can also refer to the continence advisor. If she has nursing status then consider asking the staff to refer her to the continence advisor themselves.

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I'm no expert, but have been looking after my mum now for over 2 and a half years and have first hand experience of this.

It seems obvious that the first thing to do would be to actually check mum's stools to see if she is genuinely constipated.

Obviously, constipation does not just cause pain during the act of passing the stools, but also prior to passing, where pain/discomfort will be felt in the 'tummy' as the fecal matter goes through the motions as it were.

My mum had to take Lactulose every day (dosage prescribed by Dr) when she was suffering terrible constipation caused by opiate pain relief.

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She does get that .. this turned out to be a bladder I rection .. caught early !

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Hi Tishtosh57,

This May be a long read but I hope it helps. I see you’ve had some good advise already but can I also add some.

I am a nurse in a hospice and have also supported an uncle with dementia in a nursing home he recently Died in August 2018 so I know what you are experiencing.

Firstly I advise you to find out if the care home the GP involved with your mum or a local hospice near the home offer end of live support for that area.

I’m not saying your mum is at this stage of her illness but having dementia makes it difficult for her to express her feelings and any pain she is in. I am saying this because now there are guide lines to ensure a patient with dementia has access to adequate pain control even if it cannot be fully explained as to why they have pain.

People looking after patients have a duty of care to ensure they relive their symptom by whatever analgesics they can. Pain isn’t always voiced and you have to look for other signs of pain in the patients, my uncle started grinding his teeth and his limbs became difficult to move and constricted.

I was lucky as I had knowledge and the support of the hospice at home team in our area, they visited nursing homes in the area for patients that are referred to them.

We were able to get my uncle prescribed low doses of oramorph and then eventually he had a pain reliving patch put on. After a short time he stopped grinding his teeth and his limbs were relaxed and his whole presence was more comfortable ensuring he was much more comfortable for the last few months of his life.

Most areas now have the support of these end of life teams and most GPs and nursing homes should know how to access them. Everyone is entitled to a pain free and more comfortable journey on the way to a good death however long that journey is.

Please make more enquires about your mums pain and her bowels as constipation is treatable and is also a main symptom that need controlling.

Please also ask about end of life care in your mums area it’s never to early to start planning and discussing these matters with your mums nursing home, that way when the time does come you are not panicking over these things at a time that’s upsetting and traumatic for you and your other family members.

I hope you find this helpful feel free to contact me if I can help. Remember to take care of yourself also.

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PS to my previous reply.

Can I also say that agitation and increased restlessness is also a symptom of end of life care that is recognised and needs recognition and treatment to relieve the symptom.

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Very helpful and I will talk with the home about her treatment in general

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Gosh,what a terrible dilemma and also dreadfully upsetting.

I had a lot of problems with getting help for my partner who I care for at home,and I felt he was being neglected by the medical profession.

In my experience rather than talking to doctors,and in your case also the nursing home, it is always more productive to put ones concerns in writing because speaking verbally its often forgotten and shoved under the carpet,but if you write,they have to respond and more often will put concerns into actions.

I did this and now get a huge amount of support and frequent visits from district nurses and support workers.

The written word opens many doors.

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