Brain Injury \health & bowel nerve damage

[Lilers]

My husband was diagnosed with Atrial Fibrillation and Heart failure in June 24.

March 25 saw a decline in brain health.

Anxiety, depression, bowel and bladder issues.

June 25 an MRI showed front lobe damage.

A neurologist confirmed he’d had a stroke last year but there were no symptoms till this year.

His mental health is very poor and has continued to decline. There is Nerve damage to bowel and bladder.

The Dr has suggested imodium which does help stop the runs. The actual feeling is still there though.

With the brain injury it’s impossible to get him to act on advice, he’s not difficult he doesn’t know why.

I can’t currently get him out of the house. At all.

I’m looking for info on how to help when he’s too scared to shower because of the pee\poo feeling.

Info to help him when anxiety strikes and he’s pacing, standing staring.

Physically he’s escaped (apart from the bowel\bladder probs.

He’s lost weight, doesn’t want the family to ‘see him like this’.

Can anyone relate? Offer information? Advice on nutrition? How to address his mental problem?

Thanks

[EmeraldEyes]

Welcome to the forum @Lilers, I’m so sorry you are both going through so much, it must be so hard for you both

I don’t have any personal experience of this myself but my father-in-law had Alzheimer’s with the same “toileting” issues as your husband. While he wasn’t so bad, my m-i-l did start getting him the leak proof underwear which he was somewhat happy with. Certainly gave him some confidence and comfortable going out about. Unfortunately as his condition progressed we had to resort the adult nappies, which he got free on the NHS.

These might give him enough confidence to get out more, but he can try them out at home to begin with until he gets used to them.

Do you have children? Babies often have toileting accidents in the bath. You get the baby out and flush the waste down into the sewer and rinse…both bath and baby And if he were to pass a solid stool, that can just picked up with tissue and flushed down the toilet. In the shower it’s certainly not an issue because the shower water will just flush any waste away, so he really has no reason to be concerned there. The thing is to not make a big deal out any such accidents; the more you can reassure him that it’s not an issue, the more he may be able to relax a little.

Is he still under an OT (occupation therapist), this is just the sort of thing they normally deal with on a daily basis, maybe you could get in touch with them.
You can also phone the Stroke Association helpline: 0303 3033 100 they can be a great source of advice and support for many of your issues.

The other thing I can advice, based on my own personal experience post stroke. Protein powders are a good body builder. I lost too much weight after my stroke and started using my son’s protein powder (he was into his body building back then) to help build myself back up again and it worked a treat. I just made it into a milk shake, but it can added to foods too. Certainly worth giving it a try for a few weeks and you can pick these up from your chemist or local supermarket. And protein is a good brain food he very much needs at the moment

Lorraine

[Helen-G]

Welcome to the group.. it must be awful for you both. I have bladder problems caused by my stroke and get horrendous runs caused by medication ( this is easing as my body is building tolerance) i
What have the incontinence team said and are they coming up with personalised solutions. YOU need to to be getting support too x let us know how you get on

[Lilers]

Thank you for your response.

We’re waiting for a referral to see the continence clinic.

Mostly the incontinence is a feeling not actual. His bum always feels like he needs to go rather than having to actually do anything. He’s terrified of soiling himself.

I did get him into a male tena lady thing once but it did not help with reassurance.

The brain damage affects reason, problem solving, decision making, etc.

We can see a cbt\emdr lady but I can’t get him there because of the fear. Something he can’t explain stops him.

[Lilers]

We haven’t seen an OT. The stroke happened in 2024, not discovered till 2025.

Seen a neurologist, phsychiatrist, cardiologist (the stroke was caused by atrial fibrillation and heart failure.

I give him a high protein smoothie In the morning. Banana, full fat yoghurt, full fat milk, marvel, complan, pea protein, inulin, physilum husk etc. Hell have porridge, eggs etc through the day. Evening is veg, protein, meat etc.

The wee\poo is primarily a feeling. The diarrhoea is caused by the peristalsis so imodium slows that down. Because of the brain injury though he can’t take in that it’s mostly a feeling not a reality. His perception filters can’t differentiate between thought and reality.

[tsp]

Hi, I’m sorry you’re going through this.

I have bowel problems due to a spinal injury, I take Fybogel daily which helps prevent any accidents. Get a referral for your husband to your local incontinence team…they’re called different things in different areas…there are options available….good luck

[Lilers]

Thank you for your response.

We have fibogel, isn’t it a laxative though?

Our GP has referred us to the continence team but I can’t get him to leave the house, at all, at the moment because of the brain injury causing fear. X

[EmeraldEyes]

Have you tried just getting him to step outside the door?

I know it will be slow progress, baby steps, but from there maybe walk to the end of the drive, eventually the end of the street. I know that the wee/poo is more of a sensation, but type of underpants may give a sense of security to venture outside his front door, even if it’s only to the end of the drive.

Another good place you to check out is the Dementia Support Forum. Your husband’s issues are very much the same as those on there. And I suspect the majority of members will be partners, carers, loved ones who are on there and with far more lived experience of such conditions to better support and advise you. Worth giving it a try🙂

Dementia Support Forum

[Mrs5K]

@Lilers Just popping by to say hi & welcome to the community. Sorry to hear of your husbands stroke & the issues he / you are both going through.

I had the opposite feeling with bowel/bladder in that I got no feeling so accidents were common. Incontinence pads / pants were the order of the day but it foes also take some mindset changing as you still don’t want to have those accidents rven if you are protected. You may find that the situation settles over time but maybe start building the confidence up bit by bit i.e. if he goes outside for a couple of mins then build that time up. Hopefully then when he realises he has done that without any accidents it might improve his confidence to go further.

Hope the continence appointment comes through quickly.

Best wishes

Ann

[Jbob]

Hi and welcome, sorry to hear you and husband are having a time of it just now. It seems there are many complex issues for you both and you could do with help/ support.

For the reluctance to leave the house would it be viable with GP/ Social Services support to arrange online CBT/ counselling to try and make some headway with that over riding fear, I fully understand how the brain injury is complex,would also seek support and possible adaptations to allow bathing to become easier perhaps even home carers assisting you both. If done correctly this should promote both a feeling of dignity and safety, secondly support to take the load from you as carers can be burnt out. You need to be able to look after you as well

Anxiety is a terrible thing and does untold damage can your GP do a house call and see if husband could perhaps have some anxiety medication to stop these symptoms or at least reduce the feeling for your husband. Sorry if this sounds repetitive and you probably are trying to wade through everything but don’t be alone in this and hope you both get all the help you need and continue on the roud to recovery too.

[Anna_Moderator]

Hi @Lilers

Welcome to the community, I’m sorry to hear what you and your husband are going through at the moment, it sounds very difficult for you both.

I’m pleased to see you’ve had some great responses from the community, I’ll also second what @EmeraldEyes has said about giving our helpline a call, they have a wealth of knowledge and may be able to point you in the right direction for more support. I would also say that anxiety is very common when you’re going through a stressful time. We have some information about anxiety on our website which may be helpful.

I hope you’ll find this community helpful., if you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

[Lilers]

Thank you.

It’s the mindset that’s at the root of the issues. The brain injury is such that you can say something, he will listen but he is unable to act on it.

[Lilers]

I’ve got him as far as the road with this method.

Sadly every day is like groundhog day. X

[Lilers]

@Anna_Moderator thank you for your response.

I had a full blown meltdown yesterday. I can’t do this anymore. I rang our mental health team and reported myself. Safeguarding team contacted, the lot. I don’t know what’s happening now. Lots of words were spoken but I didn’t take in what they meant.

[Bobbi]

@Lilers

This event is traumatic, isolating, paralysing. It affects his whole being.

All of this is also true for you.

The first duty of anyone, yourself included, is to take care of one’s own personal safety and welfare. When one is secure and grounded then and only then are we in a position to help another.

All of this is nevertheless a phase in an evolving sequence of events. If handled carefully you will both emerge back in control of your lives. Seek and accept any help offered and be sure that things will get easier.

You are not alone, you are heard and others do care. You will both find your way through this to something better.

It might seem trivial but try to smile, giggle or laugh. Life can be a huge joke at times.

keep on keepin on

[Lilers]

Thanks for your response.

I have a good support network. I don’t see how his brain injury can be improved though. X

[EmeraldEyes]

Right now your first duty of care in to yourself, as @Bobbi has already said. And that goes for all carers who may read this, because who would look after their loved one if they are seriously incapacitated as a result.

You did the right thing, it doesn’t matter how much support you have around you, because at the end of the day its still just you and him, without a break.

Just what is good support. We thought we were being very supportive of my mother-in-law with my father in law when he had Alzheimer’s. Until the day she learnt she had pancreatic cancer, then the whole truth came out. It had to didn’t it?!

The trouble is your support are not mind readers, so if you are putting on a cheery confident happy face in front of them, your public face, but not telling them exactly what is going on in your head, your giving them a false impression. People will hold back for fear of offending you. The last thing they want to do is give you the impression they think you can’t cope or are not doing a good enough job caring for your husband. You know, there’s a very good reason why mother nature gave women a cut off age for having babies and this is it!

What age is he, could he already have onset vascular dementia/Alzheimer’s and the stroke has escalated it, strokes are common in people with dementia. The more I re-read your post the more I’m inclined to be believe that is the case. The articles below will explain better than I can, the 3 stages of dementia, early, middle and late stages of dementia. But ignore them if you already have too much to take in

The main question is, do you have someone to advocate for you because there is a lot to take in going forward and you could really do with a second pair of ears to catch what you may miss, to understand where you don’t maybe. It is both a stressful and very emotional time and some hard decisions have to be made, what’s best for both of you.

Keep talking Lilers, we are good listeners here with a lot of useful advice to support or point you in the right direction. And again, give the Stroke helpline a call, they can even match you with a volunteer caller for some one to one chat with a fellow carer. Don’t just “take” all the help and support you can get, actually use it to your to advantage, otherwise its just a waste of lip service

https://www.dementiauk.org/information-and-support/types-of-dementia/vascular-dementia/

https://www.hopkinsmedicine.org/health/conditions-and-diseases/alzheimers-disease/stages-of-alzheimer-disease

Lorraine

[Lilers]

Thank you for your response. You have talked sense.

After my hissy fit yesterday I have somewhat lost my voice today and have a sore throat.

I’m overwhelmed with advice but will get through it all. The MH lady who came to our house yesterday said for me to contact my GP. Say I’m not coping and get referred in my own right to the MH team. I tried. The doctor said I had to ring 111 option 2. Get referred that way. I declined. I’ve rang them twice before and they’re lovely but I know they’ll send me to the local hospital. No thanks.

The help I want is education. What to do when he’s really anxious? What to do when he’s stuck and scared to get in the shower because of the pee\poo feelings. What to do when he’s reluctant to get up. What to do when he won’t eat\drink because it makes him go to the loo.

Fix his nervy bum, then I can get him to appointments, to CBT \emdr .

I’m ok today. Still stressed but ok.

He’s passed the dementia test 95\100. His brain is damaged but it can be patched up a bit. X

[IreneFC]

@Lilers What a dreadful time you are both having. I cannot imagine what it must be like to be you . It’s such a dreadful time. Sending much love and good luck

[EmeraldEyes]

This post is going nowhere so you can come to it when you feel up to it. That’s what I used to do in early post stroke recovery. If I came across a good or lengthy post, I save it so I could read it in short instalments. Because we can’t cope with a lot of information all at once

@Lilers

The doctor said I had to ring 111 option 2. Get referred that way.

So, isn’t that what you need to do? I know you’ve already called them, but maybe now you need to call them back and say you’ve been instructed by your doctor to call them and get referred.

@Lilers

He’s passed the dementia test 95\100.

That score alone is not conclusive, I don’t think there is one carer out there who believes those results at all. You know what I said earlier about your public face, your public persona, well that shines through ever time when a psychiatrist sees a client with dementia. My father-in-law fooled his every single time until my husband and I started taken him. But even then he was trying to put his best foot forward. The trouble is psychiatrists don’t see their clients at their worst. Their worst is first thing in the morning and in the evening.

Here’s a little video about distracting a baby getting his shots, I’ve seen a lots of these on TikTok now. And @Rups might have some suggestions about Anxiety too. But in the meantime, as far as I can think, the key is distraction from the thing that is causing anxiety, but that’s if its only one thing and how do you distract him from everything at once. Not telling him certain things could help, I know it got that way with my
F-I-L but when needs must. When we needed to get him to the doctor, it literally was a case of “lets go down to the end of drive”, and while there “lets go for a little drive”, “just pop into the surgery with me while I pick up a prescription”. But it was exhausting, draining, having to think up ways to hoodwink him into doing what needed to done.

https://www.youtube.com/watch?v=jSeO62o6V2o

Lorraine