Heather - saying hi

[Heather]

Hi. My husband had his SAH in April and it was  5 months after this that he finally came home.

I then found that there was very little suport. I had questions about his head itching, about his silences, about how to help him in day to day life. How to encourage him to get motivated without nagging, his permanent headache, how to develop his concentration ability... the list goes on, but the answers aren't there. I want to understand a bit of how he feels, but he just can't find words to explain. He just waits to get better.

 

I've struggled with not just a caring role, but with things he did that I took for granted and now have to fit in alongside cooking, cleaning, accounting etc, such as DIY, knowing who to call for housing repairs, undertaking general maintenance. He watches me, tells me it's an easy job, just get a thingy to go on the whatsit. But he can't tell me where to source a thingy and can't show me how to attach it to the whatsit

[Winb143]

Hi Heather,

 

Welcome to BTG.

 

I had a SAH and other problems ie Ventriculitis, Sepsis and after I got well had a shunt put in for Hydrocephelus.

 

It was hard on my Family but they sang to me and when I remember what happened, I realise my family went through it all xx

I forgot my address and luckily I never remembered anything until shunt was put in.  It is a long haul  and it will take a time.

 

If you can get him out even for a coffee it will do him good, I couldn't hold myself upright and used to slide sideways, I had a special chair which held my neck upright, bet I looked a fool !! but getting me out was good and my hubby got me a teacher beaker and I drank from that !!

 

Then I moved on to cardboard cups and as I said getting out made me feel so much better.  Keep him away from people who tell you their tales of woe.  If possible surround him with happiness.  His memory will improve slowly I am still saying to my Daughter or Hubby "did I take my pills?"  So anytime you or hubby are worried it is a good place to come as this site helped my Daughter when I was ill. It helps me now xx

 

Good luck Heather and chin up it does get better xxxx  Good luck to your hubby xx Warm salt water on his head as it could be scars itching, it helped me xx or see Doc. ?  

[subzero]

Hello Heather....a warm welcome to BTG. 

 

So glad you found this site

 

Unfortunately, being discharged with little support information is a common grievance from most SAH survivors.

 

So sorry to learn about your husband`s SAH. back in April.  It will have been such a stressful time for you during his five month recovery in hospital. If  the SAH condition was something you had little knowledge of, I am sure that you have spent much time trying to find out more about it`s short and long term effect. The truth is that each one is different, and as you say, now that he is back home, you are finding out how he has been affected physically and also how the bleed has traumatised his brain from functioning normally.

 

It would be helpful for you to give some information about how the SAH happened. Were you both in employment or retired? What support if any do you have at the moment ?

 

For me, my wife had her SAH in May 2011...... there are be many Carers and SAH survivors on this site who understand your situation and will be willing to help you. Please try and read some of the posts in the many Introduction threads. There is a wealth of information from live situations which will help.

 

I understand that both your lives have changed dramatically and each day brings its new stresses and frustrations and of course hope.

 

It is important that you somehow find time to rest well, eat well and have time out for yourself.

 

Also, recovery is not a quick process. Over these past five months you will have been desperately willing your husband to improve. His body needs time to recover and his brain need time to adjust to the trauma of the bleed. Please look longer term as you help him get better. Many are left with long term issues such as memory, fatigue, balance and headache issues and these have to be managed. From your comments, you are finding out some of your husband`s limitations caused by the SAH. This can be most distressing for you, in particular if his personality is also affected.

 

Heather..there is much that can be said, but just take time to call on us at BTG to help with all the situations that you want help with.

 

We are eager to give you support in going forward. Of course we cannot give any medical advice which you will get from husband`s consultant.

 

Take care and please keep in touch

 

 

Subs

[Chris G]

Heather,

 

Welcome and best wishes for you and your husband.  Mine was minor and I am only a year out, but I can tell you that things get better with time.  This site has many people who can relate to what you are going through and provide advice, support and love.

 

I am glad you found us.

 

Chris

[Heather]

Thank you all for the welcome, I'm glad I found you too.

I was at work when my husband Gordon collapsed while doing a bit of DIY at home. He was found by my 28 year old daughter who lives at home with us still. She dialed 999 and just kept shouting at the phone with no idea if anyone was listening (she's deaf). When paramedics arrived, she text her brother who called me at work and our lives changed right there.

 

Hubby already had physical disabilities and chronic pain (which has improved since the SAH) and was already on disability benefits. Work were good to me as I made many a journey to Oxford during the ensuing months but in the end I had to give up nursing.

 

He had a ruptured basalar tip aneurysm with  large bleed (he had been on warfarin at the time) which was coiled. He was in ITU for 10 days (ventilated for 4 days, evd etc) then on the ward. His consciousness deteriorated on the ward so another evd soon followed by a VP shunt. A few weeks later he transferred to Oxford's OCE for just over 8 weeks.

 

He was home for a month after that and things were really good, improving well. Then the shunt blocked and he had it removed.  After canceling the new shunt several times, they sent him home to see how he did without it. That was what we now call 'hell week'.

 

The progress from his weeks of rehab was totally destroyed.  He became incontinent,  couldn't wash or dress anymore,  kept going to bed in the wrong room, would go and lay down in bed at any and all opportunities,  rambled... was such hard work. I joked that I'd never worked so hard without being paid. He was readmitted the following week and 2 weeks later, after yet another evd and more cancellations, he got his new shunt and came home 2 days later. He is more cognitively challenged now since the second vp shunt.

 

My career is on hold for the foreseeable future. He still has his disability and mobility benefits, I haven't got anything coming in myself yet. We are ok financially at the mo. Gordon has started further rehab work at our local headway.  Days still merge together and weeks pass very quick.

[Winb143]

;My shunt woke me up as I said Heather and made me more aware, as it is supposed to do !!

 

A woman on here has an adjustable shunt perhaps she can tell you more about it.  Her name  is Daffodill. 

 

As Subs has said it is a long journey and when I had my shunt in I am told I sang to the nurse who was kind to me directly I woke up.

 

I wish you both well and may your hubby improve with time.

Good luck

Winb143  or just Win lol xxxx

[Sharlua]

Welcome Heather, sounds like a tough time, hopefully husband will start to make a slow and gradual recovery.  Excellent advice from Subs, it is tough on families my SAH fortunately did not do too much damage but the first 6 months were really hard going.  I was often not a good patient as my emotions were everywhere, sure your hubby must be also experiencing a rollercoaster of emotions too.

 

I found it difficult to express my feelings, my hubby and kids wanted to put it all behind us, because I looked physically ok they found it so difficult that what I got tired, mixed up words, forgot things and was mentally struggling.  Lack of information is common, hopefully reading some posts on here will help.

 

Look after you too as a lot you have taken on and given up.  I hope you let us know how you get on.

 

Sharon x

[Daffodil]

Quote

He is more cognitively challenged now since the second vp shunt.

Hi heather and hi Gordon. Welcome to BTG.

 

Its been a bumpy road for you all and whilst I am hoping for smoother travel now it may be quite a long drive so best pack plenty of sandwiches and plan lots of rest stops along the way ! 

 

Right enough enough of the silly analogies. Seriously I hope that the fear is subsiding a little for you all and things start improving.

 

I am not surprised he is more challenged after the shunt episodes to be honest. The feeling of going high pressure is one I recall very well and it slowly shuts of your senses and functions one by one and then coming out of it either from EVD or from LP or shunt is like dealing with the worlds worst and longest hangover and that takes time.

 

I came home post a 7 week stay and big bleed having come off the EVD...the hydrocephalus returned and back I blue lighted to hospital. Plenty of lumber punctures and I then had my shunt placed and it took a fair while and I needed some adjustments before I found a setting that worked well for me. Until that happened my cognitive function was dreadful and I suffered a lot from pressure side effects. 

 

Gordon has had a lot of brain surgery in the last few Months which have in essence assaulted his brain which was already trying to cope with the effects of the bleed so it is left reeling but give it time, nurture and gentle encouragement and there will be progress each day. 

 

Headway were great for me so hope that that helps him too. The effects of the hydro is like someone having squeezed your head very hard and the kit in the head also takes some adjusting to and the scarring is painful.

 

I found the following helped me, they help I think generally post bleed anyway but more so if you have a shunt. 

 

Lying propped upright , never totally flat to sleep.

Not letting myself ever get hungry and drinking plenty of water

Dulling the sensory impact with ear plugs and sunglasses

Wearing a hat especially in windy or very cold weather

 

Take care both.

[Heather]

Thank you everyone for your replies and insight. It's really helpful for the both of is to know that he is ticking along in the same way as everyone else.

 

Daffodil,  I like the analogies, and yes, sandwiches packed plus a blanket for naps 

You did remind me of just how much he has been through and your description of what hydro feels like is great for me, thank you.

 

Would have got back to you all earlier, but I forgot my password