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Rook

New Member: Rook

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My lovely Mum had a catastrophic brain haemorrhage (no cause identified) while visiting me in Denmark. When she reached five on the Glasgow Coma Scale the hospital decided to operate to remove the excess blood.  I was told that if she survived surgery at all she'd be completely unable to understand language or to speak and would be totally paralysed on her right hand side.  


11 weeks later she's just about to be discharged from hospital in the UK. Her speech - apart from being a little hesitant - is almost exactly as it was before the bleed, and she's recently started being able to twitch her right leg a little.  She's teaching herself to write with her left hand and recently wrote cards to the hospital staff in Denmark who saved her life and who looked after her with such kindness in those first few weeks.

 

I'm posted to Denmark for work and Mum lives alone in the UK.  My office has let me work from the UK to be with her up until now, but have said I need to return to Denmark very soon. Mum will need carers to come in look after her once she's out of hospital and we're both pretty anxious about that. I'm going to be travelling back to the UK to be with her and to help her with her physio exercises as much as humanly possible.

 

I know she's already defied the odds but I'm still greedy - I'm hoping that one day she may be able to walk a few steps. The posts on this forum are so helpful -  they remind me not to give up hope for her but also to be realistic that this is a marathon of a recovery and not a sprint. 

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Hi Rook,

 

I had an SAH4 and hear that's a pretty bad one.  I remember nothing apart from cooking a curry and all apart from my Family gave me doom and gloom outcome.  Anyway that was in 2009 and in 2010 I had a shunt put in to drain the brain/Hydrocephalus.

 

I was told I'd never walk and they told my hubby and daughter to put me in a home.  But they never and once I awoke after the shunt from cuckoo land.  The physios gave me a balloon to hit in the end !! ...Do not give up on Mum.  I started by turning my ankles and it has taken all this time for me to walk 250 yards but it gives me independence to shower myself sitting down.

 

Keep Mum happy and never give up and see how she gets on. Music and singing helped me .  Drove hubby mad though xx Good luck to your Mum early Days yet xxxx 

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Hi Rook

 

I'm sorry to hear about mums bleed but glad she made it and came back to the uk and that she is due for discharge.

Several things need to happen,  are the hospital aware of mum is living alone?

 

Ask if a care package has been or is being put in place for mum to have carers come in several times a day to get her up and take care of private functions and to ensure she has all the help she needs as you have to return to Denmark to work. 

 

Is there anyone near mum at home who could be of assistance to her when she does go home,  like meals on wheels. Rehab appointments which she will need help to go to i.e. ambulance service this should all be sorted before mum is allowed home.

 

The district nurse  carers and all the support you can get which can be arranged at the hospital mum is in, don't let her go until this is all sorted and details are correct for mum wishing you both well 

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Hi Rook,

 

So sorry your mom had such a bad time.  She sounds like she is making remarkable progress.  I am glad you are "greedy" I would be hoping my kids would be and keep pushing until I recovered as best I can.   Best wishes for you mom and her recovery and also to you as you try to keep up with your own life.

 

Please keep checking on this site there are so many amazing people here just for the purpose of supporting people as they navigate some of life's most difficult roads.

 

Jean

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Hi Rook

 

some good advice here and sending my best wishes to you and mum.

 

Paul offers you some excellent practical advice as making sure mum is safe and well is important and part of that is setting up A local support network she’s can call on too. 

 

Not sure if this is possible but If you can get mum using technology like Alexa that may help her make notes or keep lists of things to remember or tha she needs and also to call up things on a tablet if she can’t type .

 

Also you could invest in some home WiFi cameras which you can turn on and off so she and you feel safe and you can see her at home as well maybe?  When I was first left alone I admit I was pretty scared and felt vulnerable  ( I had a grade 4). After my discharge I had a rota of ‘baby sitters’ for want of better description , who just stayed with me in the house making sure I didnt  fall.

 

After I proved and regained a lot of my physical capability I then was left alone and it was scary at first  so I used to FaceTime at regular times with hubby for reassurance. just a thought...

 

 

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Hi Rook

 

Warm welcome to the site, so glad that you found us.

 

As always good things said - glad you find the site helpful, yes Rome was not built in a day and SAH its a long road, but its a road than can be walked on I'm 18yrs now...

 

Your Mum sounds a very strong lady, remember to have some YOU time to recharge your batteries...

 

take care

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Thank you so much everyone.  You've no idea how comforting your responses are. Also, you've made some really excellent suggestions and I'm going to make sure I look in to all of them. 

 

I'm waiting on a social services care assessment for Mum at the moment but I hadn't thought about pushing for the ambulance transport and district nurse support too - thank you.  

 

She has good friends nearby but they all have their own caring responsibilities (very frail parents, sick husbands, etc.), so I'm not sure how regularly they'll be able to offer help.  But I've found out that Age UK can come in to do shopping and laundry until Mum is able to do those things again (if she'll be able to), so I'm looking in to that. 

 

The Alexa and cameras idea is  a really good one. And Mum absolutely loves singing (she was in a band in the 70s) so I'm going to try that with her too!

 

Really - I can't thank you all enough.  I've been feeling a bit bleak and you've all really helped.

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Hello and thank you for your update on mum. 

 

It is encouraging to learn that you have found support and help from the BTG members.

 

Please keep in touch with her progress in the weeks ahead.

 

Hope you are keeping good too given these extra pressures in your life considering your work is located in Denmark.

 

 

Subs

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Dear all - I wanted to let you know that Mum is now home from hospital, and is doing much better than expected. It's now seven months after her haemorrhage and she can walk 20 metres with the help of a walking stick and an ankle brace! Her speech is also much better, although her arm is still completely paralysed and her short-term memory isn't too good. 

 

I'm just so proud of her courage and determination. She has carers going in to see to her basic needs four times a day, and my office has let me work from her home three weeks out of four every month, which means I can be there a lot, cooking her decent meals and trying to keep her spirits up.

 

The support we've had from the NHS has been minimal (everyone very obvious wants to help, but there's no resource available), so I've got out a loan to pay for private neuro-physiotherapy four times a week, which does seem to be helping her.  The NHS staff she has seen feel that she unlikely to get any more independence back now as it's six months after her bleed, but from what I've been reading that doesn't seem quite right.  We're going to keep positive and hope for more! 

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Rook

 

Never take what other people say, i'm surprised that no further help is available from the NHS this is wrong, please send me a private message, if I can help I will.  My Lin had a grade five plus and eight years down the line help was available and improvements were made.

 

It's down to mum as much as she could do and with a little help more may be achieved, speak to her social worker. What about the day clubs which are available. I will send you a pm, but only answer if you want to.

 

Good luck to mum and take time for yourself. 

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Hi Rook,

 

So happy your mom is home..she is defying the odds everyday...remember, stay greedy, she already surprised everybody.  Nobody can say for sure when someone will stop making progress.  She is so lucky to have such a wonderful caring and supportive daughter.  I send you both good thoughts and prayers...  

 

xx Jean

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That's the Spirit Rook, others may give up on Mum but while she has family she will get there.

 

She needs you more than ever now, when others give up on us, our Family are a Godsend xxxx 

 

Keep her active as much as you can, perhaps getting out the pair of you for a coffee.  I love going out ha ha !!

 

We need our family more than ever, as when people give up on us it is so wrong !! Human spirit is there and Love of our Family helps so much. 

 

It must be hard work, when I first went out I couldn't sit up properly kept falling sideways so had a big chair and my hubby asked for paper cup for me.  ha poor man!! but I have just got out of shower on my own and washed myself and so on.  Good luck to you and Mum xxxxx 

See we can get better with a bit of help xxxx  Never give up on Mum xxxxx All the best and laugh when you can xxx

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Hi there

 

gosh I was still getting better way after 6mths infact I was still getting better 1,2,3,4 years later..

 

take care.

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