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Mother had sub haemorr is very disabled


Guest ella
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This is my first experience of this site. Im just curious to know other peoples experiences and any advice as I feel totally isolated and find medical advice is absolutely minimal. My mother had serious sub ach haem 2 years ago , had coiling is in wheelchair in a nursing home. She has recently been showing strange behaviour but everyone is ignoring it. I feel sure she has dementia (sorry about spelling!) I would like to make contact with anyone who has had to deal with lack of appropriate care for people like my mum, Ella.

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Hi Ella

Welcome to the site, there are a couple of people on here that's Mum's have had SAH's Hannah's the only name that springs to mind at the minute.

I think you just have to keep pointing out about it. Its the people that know us are the best judges I find, my husband was like that with me.

Hope we hear more from you

Take care

Louise.

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Hi Ella,

Like Louise has said, Hannah is probably the best person here to advise you, so hopefully she will find your post or you could private message her from the memberlist, which you will find at the top of the page. I'm sure that she wouldn't mind giving you some advice.

Can I ask what age is your Mum? When you say that you think that she may have dementia, what sort of signs is she displaying?

It always seems to be a case of having to really pursue the medics to get the help that's needed, as Hannah has experienced with her own Mum.

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Guest Hannah

Hi Ella,

Welcome to the site, I'm sorry to hear that you are having difficulties at the moment.

My mum is in her late 40's and had her SAH 7 months ago. Apparently the bleed itself wasn't classed as very severe, but the complication of vasospasm is what has caused the damage. She has been in three hospitals over the last 7 months and the support and information that we have had has varied enormously.

At one of the hospitals there was so little information that I called my mum's orignal neurosurgeon at a different hospital and asked if I could meet with him, which I did. The only advice I can give here is to make a polite nuisance of yourself with those in charge at the nursing home and any previous medical professional that she has been in the care of.

The difficult part I have found from being a close relative during the past months is the lack of knowledge of what the final outcome will be. Her original consultant used phrases which were of no help at the time but with hindsight I could have read between the lines. Phrases such as "The patches shown on her CT scan show that there will always be some neurological damage" and "in someone where the SAH had happened in the optimum conditions we wouldn't be advising working within the first 6 months, in your mum's case it will be longer"

I couldn't put these in context at the time having no knowledge of brain injury, but now I can start to see what some of the lasting consequences might be. Had you been given any indications from doctors about how you mum might be expected to progress after her SAH?

Obviously I am not qualified to give medical advice but I would be interested to know why you think you mum may be suffering from dementia and her age. If you have read any of my other posts you will know that my mum also had hydrocephalus which is a common complication from an SAH, whilst reading up about hydrocephalus I came across a phrase that went something along the lines of 'In older people hydrocephalus is sometimes misdiagnosed as alzheimer's'

Before my mum left her first hospital the neurosurgeon spoke to Dad and I and told us to keep a close eye on my mum and report any changes in personality/temprement etc... There are some things that will only be noticeable to you rather than the nurses - if you feel that you mum's mental health has declined in some way, chances are something has changed. You will know your mum best and you really need to pursue this robustly with the staff at the nursing home, even if it turns out to be nothing.

If you get nowhere with the staff at the nursing home you may want to call the Brain and Spine helpline who may be able to give you more information about routes of information - 0808 808 1000

I hope this helps in someway, please feel free to PM me

Take care

Hannahx

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