Hello 👋 looking for advice

Hi,
My mum had a large bleed on her brain back in October last year. Physically you wouldn’t know, mentally she is really struggling and she now suffers from full blown seizures (which have been under control since November.) Depression is really taking a hold and I can’t get her to take medication for it.
I’ve tried to chase up neuro psych for help. We haven’t heard from her neurologist since she left 1st hospital in November. Chased up drs for help with her eating and constantly feel like I am getting no where!
Can anyone tell me if this is normal? I want to make sure she has the proper support and care and I want to make sure I am doing the best I can for her but I have no idea where to start. She lives with her husband but I work full time and would prefer to able to care more for my mum and the guilt of not being there for her every day is eating away at me.

Hi @Lorna25, welcome, though I’m sorry to hear your mum’s had a stroke.

Unfortunately stroke aftercare can be spotty and in some postcodes almost nonexistent. Don’t give up, keep in contact with her GP asking them for advice, try contacting the neurologist’s secretary to see when your mum’s follow up appointment is. Try speaking to the stroke association to see if they can offer any advice.

Depression following a stroke is not uncommon, stroke has a massive effect on the person and their loved ones. Try not to feel guilty, give the support you are able to offer, but don’t beat yourself up if you have to leave the bulk of her day to day care to her husband, she’ll understand you have to work to support yourself (and family, if you have one).

Best wishes

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@Mahoney thank you. I actually made this profile for her hoping she would be able to use it for support. My mum has always been a worrier and always put others before herself, so she still tries to put me before herself. She has started saying she wants to speak to someone that understands what she is going through, is there any online meetings she could try? Xxx

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Hi @Lorna25 sorry to hear this about your mum. Welcome to our forum. You could try this

It is fir anyone:
Or telephone the stroke .org I had support from emma who rang me once a week for the first few months she was amazing and still checks in on me now and again 10 months on.

I wish you lots of luck and patience and hope your mum recovers quickly and feels in a better place soon. Loraine

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Here for you
As @Loshy mentions the stroke association offers a telephone support service, (see above link) where the SS can have a chat with someone to offer support, once a week for a few weeks. The zoom meeting @Loshy mentions looks good too, thanks @Loshy.

Depending on where your mum lives there may be a local stroke support group, some meet in person, others via zoom.

It’s definitely worth contacting the stroke association.

Best wishes

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Hi @Lorna25 - as @Loshy says, there’s the Here For You service, run by the Stroke Association. Your mum could be paired with a trained stroke survivor who would ring her regularly. It was introduced at the beginning of the pandemic and is designed to support people who have recently had a stroke.
I’m a volunteer and the people I’ve supported have had very different needs. Some have been on their own and just need a listening ear, whilst some have been aiming to return to work. Some like to ask questions and others are reassured that what they’re experiencing is perfectly normal.
I think the value of the service is that the volunteer understands what it’s like to survive a stroke, even if their circumstances aren’t exactly the same. I know I’d have benefited from it when I had mine.
Wishing you and your mum all the best.

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Thank you :blush: I will say to her, she does need reassurance. That sounds like a brilliant service!

Thank you again xx

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It really is @Lorna25 good luck. Once your mum talks to someone at stroke.org she will feel reassured. It was such a relief for me. They really are great. Loraine

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Hi @Lorna25 ,

I concur with advice already given. The Stroke Association has been one of the best helpers for us. GP not so much and they tend to have little to offer and usually end up referring you back to the hospital, or at least that is what happened with us.

Wrt seizures, we had the same and we were told that these are “norm” for stroke survivors. I am pleased your Mum’s seizures are under control.

The same happened with Mum and we were offered some seizure management medicine. It was a huge bottle of liquid and on top of all the medication Mum was on at the time, we felt it might be too much. So we decided not to take it, but either through natural healing or something else the seizures have now more or less stopped (touch wood).

We found that Mum’s sodium level had gone really low and it seems sodium is one of the minerals that transfers messages in the brain (electrolyte or something) and so the low sodium level may have contributed to the seizures. We were advised to add salt to Mum’s diet (I know mostly we are advised to reduce salt) but in our case more salt was needed.

It may be worth getting your Mum’s sodium levels etc. checked. The GP or district nurse can arrange for blood tests.

Also, what you are experiencing is pretty normal or as normal as can be in this type of situation. Don’t worry and don’t feel guilt. Your Mum has help available both from family and community nursing if you don’t already have it. Your GP has to be able to help.

Also, if you have not done so already, it might be worth registering with your GP as a Carer. It seems if you are registered as a carer they can offer help and advice and there may be local carer groups that can help.

Hope your Mum a speedy recovery and wishing you all the best as a carer. Believe me, you are doing a great job even though you may not think it.

ManjiB