How to best support loved ones who are recovering from SAH?

[Chris Struth]

Hi there,

My mum is 48 and had a SAH on the 19th of March 2014. She had the coil operation on the 20th of March and was discharged from hospital on Monday the 7th of April. Whilst in hospital my mum also had vasospasm, seizures and hydrocephalus. A lumbar drain was used to deal with the hydrocephalus and she is on keppra 500mg for the seizures.

I was so pleased to have mum home and have been doing my best to look after her but she has had a constant sore head since she's been home. She tells me that the pain isn't getting worse but some days she can barely do anything apart from sleep or hold her sore head. The pain relief she has is codeine 30mg but this doesn't seem to have much impact. She finished her nimodipine course at home and then restarted her blood pressure tablets.

I know that I am lucky to still have my mum with me without any major physical problems but I feel so helpless to see her in so much pain! She's been home for a week now and thought I would see some sign of improvement. This Wednesday will be 4 weeks since her SAH, and I know this is still really early in her recovery!

How can I help her? Any tips for dealing with a sore head? She doesn't think she needs a doctor but when do I phone for advice? I have an oximeter, blood pressure and heart rate monitor and home and all of these things are fine. She's eating breakfast and dinner and drinking fluid - I've even got decaff tea bags!

Some advice would be great! I want to look after my mum - I don't want her to get unwell again!

Thanks,

Chris

[Super Mario]

Welcome to BTG Chris.

If you are in any doubt about your mum contact her doctor, they should be able to give her something stronger or a combination of painkillers to help with the headaches. She must drink plenty of water, a couple of litres at least a day, by keeping well hydrated will help the headache.

Sleep is something that I think we all did in the early days, I know I spent more time asleep than awake, the brain has to heal. Recovery can be a very long slow process but of course each person is different. There may be times when she seems to take a backward step in her recovery too.

The majority of us were sent home with little or no information and that in itself is scary as we don't know what or what not to expect.

The Brain and Spine Foundation http://www.brainandspine.org.uk/ have some very helpful leaflets and you can also get support from Headway, they have a helpline you can ring. https://www.headway.org.uk/home.aspx

You are obviously a very caring and loving son/daughter and your mum is very lucky to have you to care for her. There are many members on here who will be only too willing to give you support and advice so no doubt there will be other replies. If you have any more questions please feel free to come back and ask, we are a friendly bunch..

[Winb143]

Hi Chris,

I feel for you and Mum but do not show her you are worried.

It is a long haul but she will get there with your help and become your Mum as she was before op.

I have just started arguing with my family so I know I am getting there. lol.

I had coil fitted but slept a lot and that was due to hydrocephalus also.

Eventually I had a shunt fitted as all I did was sleep.

Your Mum needs rest, water and as my surgeon said No Stress.

I wish you all well and be happy around Mum as she has got through the worst the bleed.

Now you better get some rest. Good luck to you All.

Regards

WinB143 xx

[victoria conway]

Chris

My sympathies - it's already been said in other replies but lots of water does help. Like your Mum I had the hydrocephalus and also a severe lack of sodium issue. In hospital they made me get through 3 litres of water a day and I went on doing that for weeks after I came out and found that helped reduce the headaches (but not eliminate them). They do go on for quite some while though. I wish I'd kept a diary back then, but probably wasn't up to it so can't tell you exactly how long. In any case a whole lot longer than a week after coming out so your Mum is not abnormal.

As for sleeping - you just have to and that's that. Our brains have had a huge battering and rest/sleep are really great healers. The only bit of advice I got from anyone on leaving hospital was to "listen to my body" - can't say that helped me too much at the time as it seemed a bit nebulous. But, in hindsight, it's what you have to do. Even now, after nearly 3 years, I sleep when I can no longer do anything else.

Re the doctor, I would think that, since your Mum has resumed medication she was taking before, it is worthwhile checking all that out with the person who prescribed those. Also, just registering locally that the SAH has happened. It doesn't always get noticed. I went to the doctor only because, after a couple of weeks, out of the fuzziness, I thought I must need a "sick note" for work (think they, bizarrely, call them "well notes" now - probably took a committee of x people y weeks to change that!). Whatever, I think a trip to the doctor might help.

I wish you both well - it's a tough time - largely because we don't know what to expect - those of us who have suffered the thing and the folk who care. Come back here too - there is a long way to go and those of us who have been through it have a lot to offer. Meanwhile - watch your Sleeping Beauty, whom you obviously love!

[kpaggett]

I know for me, my needs changed day to day. It was so helpful when my husband just asked me what I needed regularly. Sometimes it was darkness or someone to fix lunch or putting off laundry a day. Just ask and you will get your answer.

~Kris

[Skippy]

Hi Chris

You sound like an angel child hun - it is very difficult to see your parent in a situation where you feel helpless, but you sound like you're doing a great job. Like the others have said, plenty of fluids does help enormously with the headaches but they do take a while calm down after an SAH - it was a good three to four months before mine calmed down.

Make sure she rests and doesn't try to do too much - let her know that its ok to let others look after her for a change - that was the hardest thing for me - letting go and letting others help without feeling like I was a burden.

If you get worried to the point where you don't know what to do, then feel free to call the GP - its what they're paid for.

At this stage of her recovery sleep is the best thing - its the only time the brain can really rest - like most of us on here, all I did for a good few months after was sleep. Stay positive and cheerful and just let her know that everything is being taken care of and she needn't worry about a thing.

When she feels up to it - get her to have a look at some of the stories on here - it certainly helps you to realise that what and how you're feeling is perfectly normal and common after a SAH.

Take care hun