Aggression, seizures, and little hope 🥲

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Hi guys,

Not really sure why I’m writing this. Maybe for a little support I guess.

My 69 year old Mum had a major stroke on 2nd March. She was in Stroke Rehab for 4 months, on a feeding tube for almost 3 months. Fortunately she has retained most of her mobility, and eats normally now, however the damage to her brain has been very severe.

She has Apraxia of Speech & Ideomotor Apraxia, so everything is jumbled up. She’ll see the sink & go for a wee by the sink because she thinks it’s the toilet, she’ll use her knife to eat her food, she’ll use towels as blankets. She cannot do anything for herself at all. Can’t cook, make a drink, dress, wash. All the signals in her brain are misfiring. It’s worse when she’s tired. The confusion is really severe. And her memory is awful.

Her main frustration is not being able to communicate with us. And not being able to understand us. She can’t read, or write either. Things that she really enjoyed before. She has good & bad days. On the good days I feel she really understands. On the bad days, she doesn’t recognise us.

She came home for just one week from rehab & all hell broke loose. She was fighting Carers, she’d shown aggression in hospital but this was on another level. She was constantly trying to get out of her flat, which was so dangerous as she was on the 2nd floor. She had constant falls so I moved in with her. It culminated in her violently attacking me. She fell in the process and ended up back in hospital for 6 weeks.

She’s been discharged to a care home for assessment (it’s a council run care home & it’s awful. The staff are lovely, but the place is literally falling down). Her social worker has said it’d be unsafe for her to return home. I agree. She’s attacked staff in the home & attacked my sister and I too.

She was NEVER aggressive before. Feisty yes! But a lovely Mum & I miss her terribly. She is so young compared to the other residents in the assessment care home too & Mum sticks out like a sore thumb. She refuses to leave her room & she’s just wasting away in it. She isn’t eating & I think she’s very depressed.

We’ve found a wonderful care home for her to move to that I feel would meet her needs. It’s got a tonne of activities that she can enjoy if she wants, or she can stay in her en suite room which is massive. There’s beautiful landscaped gardens & it’s a light & airy place. Most importantly the staff seem fantastic.

I don’t know if I’m stupid for being honest with her, however I have explained that her doctors & social worker agree that it’d be safer for her to live there. She’s flown completely off the handle and now I’m not sure how to even get her in there. She seemed to understand initially and accept that she needs 24hr care, however upon taking her to view the place, she became extremely agitated & aggressive. She tried to get out of the car & throw herself out whilst we were driving & then attacked my sister & I whilst we tried to stop her from basically causing a major accident.

I just want her to be safe. To be well looked after, where I can see her every day (like I have since 2nd March) & spend quality time with her.

I’m just at a loss. I’m an emotional wreck. I’ve lost so much weight & I’m exhausted. I’ve cared for her whilst she was in hospital, visiting every day, showering her, helping to feed her to get get her off the awful feeding tube, and then by looking after in this assessment care home.

I think there’s more going on in her brain. I’ve read extensively how Stroke can trigger Dementia. She is on medication for seizures too, but still has them when she’s very stressed.

Help!

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Wow :frowning:

That is a lot of factors that will generate huge complexity.

I can’t recall any other threads on here That are as challenging. However a lot of what you have included in your description is included across the whole body of back threads.

The first thing to say is you need if you have not already done so to reach out to the carers organisations in your locality to give you a lot of reassurance that you’re doing the right things, my wife always says the best things that they did for her was to stop feelings of guilt and encourage her to take me time - I suggest that’s your number one priority.

The stroke association helpline stroke helpline and the interactive map on the website can both point you in the right direction but these are not the only help groups because not all of them want to be controlled in the way the stroke association suggests.

The magnifying glass above allows you to search for themes. There are a number of posts about caring for others partners or parents and all contain elements for hope - a very few contain the disorientation but I don’t think any contain the violence. They generally plot a history of improvement over time but who can say in any one specific case that will be the outcome :frowning:

This is certainly a place where you can have a cathartic rant, appeal for a very measured broad reflection on our experiences, just share with people who do really understand because they’ve been through it and that may in itself be some help to you.

I’m sorry that I can’t be more helpful but at least you aren’t alone. We normally direct people to the welcome post) and I will give the link here because some of it are very small amount might be useful as might be the benefits and concessions thread

I’m sure others will be along to share their reaction and advice @Mrs5K & @EmeraldEyes @EMG72 come to mind

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Gosh, i really feel.for you.

Sadly i have a good idea of the trauma you’ve been enduring. My num had a major stroke in February and spent 5 months in hospital. I understand that if you’re the kind of daughter who will be there no matter what, it’s utterly exhausting. It’s life shattering for the patient AND for you. So, please be kind to yourself. Take time away where possible. Get support from friends and call in some favours.

And it sounds as if you’re doing all you can.

Dementia and cognitive issues causes by stroke are different but stroke can cause dementia. But I’m no expert - the Stroke Helpline might help on that note.

I know this may sound harsh but can you ask the social worker for an assessment to look at mum’s mental capacity again?

Can you chat to her GP, who may make an exception and go and talk to your mum about the new care home? I actually managed to get a GP to do a home visit for my mum last week so it’s always worth an ask. Explain the trauma it’s causing the family and you need their help. That’s what they’re there for.

A very different case, but my auntie has had dementia for years now and a few years ago she had to be sectioned in order to get the right treatment then discharged into a wonderful care home. I’ve learned that you need to ‘unlock’ the system to get things moving in the right direction. Your mum’s social worker should be able shed more light. Make the social work for you - don’t be shy about pushing if they’re not being proactive.

All the best to you and your mum, and do keep us updated.

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@JoCet Hi & welcome. My heart goes out to you & your family. That is so much to be dealing with & i’m not surprised you’re exhausted.

As @EMG72 has said I would ask for another assessment of your mums mental capacity & getting the GP to speak with her is a good idea. You can’t do all this yourself & your mum may take it better from someone independent. Are they able to give your mum something for the aggression? Has she had a dementia assessment?

A different situation but my mother in law had dementia & she flatly regused to go into a care home byt in the end that decision was taken out of her hands and she went kicking & screaming. It was heartbreaking to see her like that but it was absolutely the best place for her to be as she needed 24 hour care that we just could not provide.

Take all the help & support you can get. It’s essential you take time away from her too as you need to look after yourself. You’ll be no use to anyone if you collapse with exhaustion.

Can you chat to your GP about support they can provide you & also what can be done to help with the overall situation? You have to push gor the help you need. They who shout loudest and all that.

You almost have to grieve for the person they were (that may sound strange as they’re still alive) & then find a level of acceptance of how they are now. Very very difficult.

Not sure if that has been any help but know we are here if you need to offload.

Sending you much love & strength.

Ann xx

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(Now this is just the kind of post @BakersBunny should be tagged into…when she’s finished running around after you of course @SimonInEdinburgh :wink: :laughing:)

Hi @JoCet and welcome. I’m so so sorry you are having to go through all this. Sadly it does sound as though your mum might have some form of dementia but the memory clinic would have to test her for that.

Do you know if dementia runs in the family or not? My neighbour had the angry, aggressive Alzheimer’s, my mum had the very happy kind and my father-in-law had the anxious and depressed variety. I suppose its down to which parts of brain the stroke has affected. Unfortunately it take years rather than months for damage to repair and the more permanent damaged parts of the brain are less likely to recover at all.

This is going to be a long hard road for you and with that in mind, you need to take all the help and support you can get. Don’t turn any of it down.

Forget about feeling guilty, because you are doing the right thing for both you and your mother, and she would thank you for that if she could, wouldn’t she?

Definitely worth reading the Dementia leaflet below on Sundowning. She’s had a lot of disruption, upset and fear over the the past months since her stroke and her mind just can’t handle all that, its overwhelmed. Her brain has enough to contend with trying to heal the damage done by the stroke.

So it really is best to keep information and life simple as possible for her, details to a minimum and, as you’ve already learn’t, some things are best not being told at all.

Do activate the child proof locks on your car! And she’d be best to ride in the back seats, on the opposite side to the drivers side.

And get yourself a seatbelt guard to stop her from undoing her seatbelt when you are out with her. I had some hairy experiences, at the beginning with my father-in-law in the passenger seat. I learnt fast that’s for sure.

The care home you’ve found for her does sound wonderful. But do double check that they can manage her level of aggression. The last thing you want to have to do is move her a couple of months later if they insist. We had to do just that about a year after my father-in-law been in the care home.

Sundowning is a term used for changes in behaviour that occur in the evening, around dusk. It is common in people with dementia, who often experience a strong sense of confusion, agitation or anxiety at this time. It is sometimes known as ‘late day confusion’.
(https://www.dementiauk.org/wp-content/uploads/dementiau-uk-sundowning.pdf)

Even if it turns out she doesn’t have dementia, its still no harm to read through the Sundowning. I am not an expert! I can only speak from my own personal experience of stroke and having Alzheimer’s in my family. It is always best to expect and prepare for the worst and hope for the best for the sake of your own mental health.

Which brings me to your mental health. You are the most important person in all this. I don’t know how old you are, but your mum is in her twilight years, you however, have your whole life still ahead of you and you need good health to really live it. You have to look after yourself, your health matters. And you did the right thing by writing it all down here. This is what we do here for others when we’re not looking for help for ourselves, its called passing it forward…and we are a good sounding board :wink: We are here for the carers as well as the stroke survivors. You are a carer for your mum therefore this is exactly where you need to be to offload right now.

But your heart and mind do need a day off now and then to give them two time to recover, regroup and recharge. And you both could do with some peace and quiet from it all. Give yourself a break, time away from your mum, because you’ll be no good to her your if you wind up in the bed next to her. So don’t for one minute think you are being selfish. And as in @Mrs5K example with her mother in law, sometimes you have to be cruel to be kind, but really it just seems that way. Your mother is still in there, she has her lucid times, and it must be hell for her at those times when she can’t even express herself. It’s her stroked mind that’s preventing you from seeing, hearing and understanding. But that still may get easier as her brain heals more, only time will tell.

Stay strong and keep on talking here :people_hugging:

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I honestly can’t thank you all enough for your kind responses & your advice. Thank you for sharing your experiences too.

I feel like I’m grieving. I feel immense guilt too. Mum always used to say ‘don’t you dare ever put me in a care home’! It was always said in jest but I know she really meant it. But we just couldn’t cope at home. She was incredibly unsafe & I wasn’t safe either. I’d never forgive myself if she hurt herself at home.

Mum was always a loner. Very happy in her own company. So I worry now too that moving into permanent care, she will be forced to interact with others. It’s all such a mess. I just want her to be safe.

Dementia doesn’t run in our family, Stroke & heart issues do. Mum’s Mum, brother & sister all went through similar to Mum, however there was no aggression. Mum was a heavy smoker, with high cholesterol, and although we don’t know if it contributed, I’m certain it did. We found out in hospital that she has heart disease too. Thankfully she’s forgotten that she’s a smoker, so at least we don’t have that to contend with anymore. Small mercies hey!

Selfishly, I worry now for me. I’m 44, and it’s made me face my own mortality and future too. I’ve always taken my health for granted. I have my cholesterol checked regularly, and I don’t smoke. Although my blood pressure was very high, I’m on medication for that now.

Doctors and Mums Social Worker haven’t been able to carry out a mental capacity test because she can’t communicate, which to me seems absurd. It’s clear to us as a family that Mum lacks capacity. I’m pushing for this now with the help of the speech and language therapy team.

I’ll look into Sundowning. Thank you for recommending that I do.

I’m in contact with a wonderful lady from the Stroke Association. I’m very grateful to have someone to talk to. And I’m waiting for therapy for myself too through my own GP.

I don’t know how the heck we’re going to move Mum into the new care home, but, it has to be done. Wish me luck!

Jo xx

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So WISHED!

Despite the struggles it sounds as if there are realisations so now a trajectory & thus progress.

Yes post stroke often causes a reassessment of mortality from knowledge that ‘normality’ can change in a heartbeat.
Your wise to watch risk factors but after that don’t obsessed about stroke because there are a million other ways life can be altered that your unaware of and as just as (un) deserving of attention because they will be as traumatic and are as (un) likely.

Let us know how you get on and there are posts on here about the transition to care and you can always ask more questions :slight_smile:

Caio
Simon

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Its very difficult not to feel guilt but please try not to as you have no choice in this. As you say she wouldn’t be safe at home & the issues that would cause would be so much worse.

Stroke does make you rhink about your own mortality but as @SimonInEdinburgh has said there are many things that can come our way none of which we can change so we just have to live our life to the fullest whilst we can.

Good to hear you’re serking help for yourself. That’s really important. You will be grieving even though she’s still alive. A strange situation but in my opinion the grief is a necessary part of being able to move on.

Best wishes to you all

Ann

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