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Another Carer's Introduction - Peter & Irene


Peter
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The time has come to join your community as a carer. I’ll keep it brief,  - you’ll be all too aware there’s much more detail involved in SAH - but provide key words which may prove useful to others searching for more detailed information on some of these elements of our experiences which I am happy to expand upon.

 

I’m Peter & the patient is my wife Irene. She already had a pacemaker after TIA in 2004 + long term warfarin. We are 70 year old Brits, frequent visitors to USA (38 states). Doubt insurers will provide cover now !

May 2015. in Florida, Irene had the headache from hell. 911. Ambulance to local hospital. Emergency CT scan. Airlifted to Neuro hospital. Intensive care. External drain. Angiography = multiple aneurysms (four). Two larger, either or both cause of bleed , coiled. Two small untreated. Aspirin therapy replaced warfarin.

 

Essential brain treatment adversely affected heart & lungs for a while. Many medical disciplines involved. Three weeks later, after VP shunt replaced drain, transferred to “normal” neuro nursing. UK travel insurance medical team (helpful) understandably keen to limit their costs. Medical permission to repatriate us to UK just a few days later. Initial assessment at local UK hospital. GP care. Referrals to Cardiologist, Opthalmology and Neurosurgeon (Oxford Neuroscience) . Medicine reviews - difficult decision re clot / bleed risks.

 

Irene’s recovery has been spectacular (UK neurosurgeon’s word ) - thanks to prompt, expert specialist treatment by the various medical teams in the front line & those we never saw who were working behind the scenes. We will be eternally grateful to them all.

 

She had headaches & nausea for a while + fatigue which has improved considerably, and continuing double vision (diplopia). DVLA withdrew her licence to drive for 6 months due to VP shunt op. Slow to complete their review to allow it’s return. Patience is a virtue and it is vital she is safe to drive. If approved, will make a gradual return.

 

After 8 months on aspirin (300mg daily) she has now returned to warfarin regime on combined neurosurgeon & cardiologist advice. Unable to have MRI, she has had two CT scans in UK showing a stable situation. Due an angiography procedure in June 2016 - abt 12 months after her SAH. We have engaged help from trained neurophysio to assist with exercise - needs motivating! ( I’m just as guilty ! )

 

Me ? I’m head cook and bottlewasher, taking over those more physical aspects of housework which I didn’t do already. Nice to do some cooking again .

We are both fully aware we have been so very, very fortunate.

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A warm welcome to Behind the Gray. My word, what a time Irene and you have had.  It sounds like she is doing remarkably well considering what she has been through.  I'm glad you found this site as there is a lot of support from others who have either had the misfortune of suffering a sah themselves or, like you, the carer of someone who has.  A carer is a very specialized and vital role!

 

I.m sure your wife will continue to improve over time and I wish her well for the angiogram in June.

 

Best wishes,

Sarah

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Peter. Wow what a time. I made friends with a fellow SAHer who like your wife had her SAH abroad and then had to make the trip back home following surgery and I can only imagine how hard that was for all of you.

I am glad your wife is doing well and you are all adjusting to this new state of affairs. Well done on taking il the mantle of housework, it truly does help I promise you but make sure you pay heed to yourself as well, it will have rocked your boat as well all of this. The exercise Is good, keep it up but personally I suspect the effects of the shunt has more bearing on stamina levels as it seems that people who don't have this intervention fare better at getting back their exercise levels up. Give it time though, gently does it. Same for driving. Give it time, and when she gets back go short distances at first, common sense stuff really.

Good to hear she has a local plan in action for follow up and that all is steady. I hope in time you do get to complete your final few states in the U.S. but yes afraid insurance will be hiked to say the least. I'm paying a small fortune for my shunt, coiling and family to Go to Greece this year for a week but it's well worth it.

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Hello Peter

 

Welcome to BTG, you will get so much help here as Irene continues to recover from her SAH.

 

I am a carer too, although my wife was actually in hospital already when she had her SAH. It must have been quite a traumatic experience for you so far away from home. You will find others here who were on holiday too when it happened.

 

So glad Irene received excellent medical attention right from the start, and that you managed to return home quite quickly. No place like home to help recovery.

 

Look forward to hearing more from you as you visit BTG and as I`m sure you know already- it is such a demanding journey for both of you as you adapt your lives. 

 

Take care

 

 

Subs

 

PS  (there are a few people on here who trained me in the skills of Ironing-they will be watching you too!) :)

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Welcome Peter alias Head cook and Bottle washer,

 

Sounds like your wife is doing well, which is great xx I said to my Hubby after I awoke from cuckoo land  after shunt was put in.  "Guess we wont be retiring to Spain then ?"

He was a bit harsh in his reply and I thought Ouch !! so let the tears fall but then I realised all what Hubs and Daughter had been through.

 

So after I stopped crying 2 years later and forgave him (<~~That's my sense of humour there). !!

 

Glad wife is doing well and you have Subs to turn to as he is carer for his wife, he'll be on later.

 

I wish you and Wife all the best and welcome to BTG You Peter and Irene xx

 

Singing helps and as I always say No Stress for wife it makes life a lot easier xx My surgeon told me that xx

 

Regards

 

Winb143 xxxx  Subs has replied to you already  xx

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Hello Peter

 

Welcome to BTG, you will get so much help here as Irene continues to recover from her SAH.

 

I am a carer too, although my wife was actually in hospital already when she had her SAH. It must have been quite a traumatic experience for you so far away from home. You will find others here who were on holiday too when it happened.

 

So glad Irene received excellent medical attention right from the start, and that you managed to return home quite quickly. No place like home to help recovery.

 

Look forward to hearing more from you as you visit BTG and as I`m sure you know already- it is such a demanding journey for both of you as you adapt your lives. 

 

Take care

 

 

Subs

 

PS  (there are a few people on here who trained me in the skills of Ironing-they will be watching you too!) :)

We were on familiar territory in Florida. She would have been better staying a little longer there, but we have worked our way through the difficulties arising from an early return to UK now. I can use all the household toys except irons .Never could find the on switch & stopped looking years ago

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Hello Peter and welcome to BTG,

 

Glad to hear that your wife is doing well back in the UK.

 

I had my SAH last January during heart surgery (I have a congenital heart defect and was having a stent put in my aorta). I also developed hydrocephalus and had to have a shunt fitted. It can be tough managing all the different aspects of medical care, especially with regard to cardiac versus neuro issues. It is good to hear that your wife is doing well though.

 

I also feel her pain with the DVLA - I am also still waiting to hear on getting my license back!

 

Gemma

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Hello Peter and welcome to BTG,

 

Glad to hear that your wife is doing well back in the UK.

 

I had my SAH last January during heart surgery (I have a congenital heart defect and was having a stent put in my aorta). I also developed hydrocephalus and had to have a shunt fitted. It can be tough managing all the different aspects of medical care, especially with regard to cardiac versus neuro issues. It is good to hear that your wife is doing well though.

 

I also feel her pain with the DVLA - I am also still waiting to hear on getting my license back!

 

Gemma

Thanks Gemma.

Sounds like you have had a much tougher life than either of us. Irene sailed through TIA/pacemaker period as well as this SAH experience. Bleed /clot decision aggravated by different views USA and UK. Whatever the outcome, we are both content with her final decision to return to warfarin.

We do know Neurosurgeon completed DVLA form 4th Feb. We can expect an update letter this month saying referred to their medical team

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A warm welcome and so pleased Irene is doing well, sounds like a really scary time for you both. I hope the friendship and support from the site will be helpful to you both. It sounds like those medics have done a good job and pleased that plans are in place now you have returned home. Being chief bottle washer and cook is such a good job I certainly could use one, seriously your support will be invaluable to your wife

Take care

Sharon

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Welcome Peter alias Head cook and Bottle washer,

 

Sounds like your wife is doing well, which is great xx I said to my Hubby after I awoke from cuckoo land  after shunt was put in.  "Guess we wont be retiring to Spain then ?"

He was a bit harsh in his reply and I thought Ouch !! so let the tears fall but then I realised all what Hubs and Daughter had been through.

 

So after I stopped crying 2 years later and forgave him (<~~That's my sense of humour there). !!

 

Glad wife is doing well and you have Subs to turn to as he is carer for his wife, he'll be on later.

 

I wish you and Wife all the best and welcome to BTG You Peter and Irene xx

 

Singing helps and as I always say No Stress for wife it makes life a lot easier xx My surgeon told me that xx

 

Regards

 

Winb143 xxxx  Subs has replied to you already  xx

Winb, thanks. I really like the idea of Head Cook etc as an ID, but too cumbersome to log in with all the time !

Obviously, you haven't heard Irene singing.

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A warm welcome and so pleased Irene is doing well, sounds like a really scary time for you both. I hope the friendship and support from the site will be helpful to you both. It sounds like those medics have done a good job and pleased that plans are in place now you have returned home. Being chief bottle washer and cook is such a good job I certainly could use one, seriously your support will be invaluable to your wife

Take care

Sharon

Thanks, Sharon. Sorry the North East too far to don my pinny !

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A warm welcome to Behind the Gray. My word, what a time Irene and you have had.  It sounds like she is doing remarkably well considering what she has been through.  I'm glad you found this site as there is a lot of support from others who have either had the misfortune of suffering a sah themselves or, like you, the carer of someone who has.  A carer is a very specialized and vital role!

 

I.m sure your wife will continue to improve over time and I wish her well for the angiogram in June.

 

Best wishes,

Sarah

Cheers Sarah

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Peter. Wow what a time. I made friends with a fellow SAHer who like your wife had her SAH abroad and then had to make the trip back home following surgery and I can only imagine how hard that was for all of you.

I am glad your wife is doing well and you are all adjusting to this new state of affairs. Well done on taking il the mantle of housework, it truly does help I promise you but make sure you pay heed to yourself as well, it will have rocked your boat as well all of this. The exercise Is good, keep it up but personally I suspect the effects of the shunt has more bearing on stamina levels as it seems that people who don't have this intervention fare better at getting back their exercise levels up. Give it time though, gently does it. Same for driving. Give it time, and when she gets back go short distances at first, common sense stuff really.

Good to hear she has a local plan in action for follow up and that all is steady. I hope in time you do get to complete your final few states in the U.S. but yes afraid insurance will be hiked to say the least. I'm paying a small fortune for my shunt, coiling and family to Go to Greece this year for a week but it's well worth it.

Thanks Daffodil.

After our return,it has been administratively difficult and a little protracted to get her, now,  in the hands of the experts needed.

As others have said , a new normal. We are both so fortunate that, in practice, it differs little from the old normal.

Later this year, after her 12 month anniversary, I'll make enquiries via a specialist insurance broker we know re USA travel , because the company which has covered both of us for years has, no doubt, taken rather a large hit.  It was to be expected that, at the moment at least, they have refused cover for virtually all the conditions which they previously accepted for a pittance of a premium.

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Singing is good for the brain Peter especially when I am out of key.

 

You and your wife will get there but it is telling on the family, so the worst is over and now and recovery begins,  some days perhaps your wife will feel low then up,  it is to be expected. 

 

Good luck both and when she feels well enough take her for a coffee or a snack out.  Did me the world of good xx

 

Get her back in the real world a.s.a.p. as that cheered me up even though I couldn't sit upright and got some funny stares my Hubs took me out and it was like so good to be back.  He even took me out before shunt was fitted and I remember a little of those trips and enjoyed them .

 

Good luck both

 

Win xx xx

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Singing is good for the brain Peter especially when I am out of key.

 

You and your wife will get there but it is telling on the family, so the worst is over and now and recovery begins,  some days perhaps your wife will feel low then up,  it is to be expected. 

 

Good luck both and when she feels well enough take her for a coffee or a snack out.  Did me the world of good xx

 

Get her back in the real world a.s.a.p. as that cheered me up even though I couldn't sit upright and got some funny stares my Hubs took me out and it was like so good to be back.  He even took me out before shunt was fitted and I remember a little of those trips and enjoyed them .

 

Good luck both

 

Win xx xx

Win, bear in mind she is ( I know !, "only") eight months down the line, was treated so promptly that , in all honesty her brain has suffered very little damage & her recovery rate already getting flattened out on the "rate of recovery" curve.

 

We've been away from home in UK three times and have two trips booked -one before June angiogram and one after.  Until she gets her driving licence back,I have to take her, but she goes to her social events on her own - as you all know is tiring - but she is well and truly back in the real world already.

 

Don't encourage her to sing. Please !!!

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Hello Peter

 

It is great to hear how Irene seems to have recovered so well from the initial trauma of SAH. You both seem determined to get back to `business as usual` as far as your travels are concerned. By the way we found that Just Travel were very competitive when quoting for `existing illness` cover a year on. There are other members of BTG who travel abroad and will give you advice too.

 

Just a small word of caution- when we returned home following my wife`s coiling-we thought everything had been fixed- but post SAH is rarely a complete recovery. If you get an opportunity to read some of my introduction you will see what I mean.

 

Looking forward to hearing more from you in the days ahead

 

Subs

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Hi Peter

 

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

 

you and Subs can share your duty questions ha!ha! no honestly well done you on taking up the reigns.

 

glad to read all's stable and your doing ok.

 

take care both of you.

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Hi Peter and Irene,

 

Welcome to BTG!  As you can see there are people who've been there before you and who can give you plenty of support!  Thunderclap headaches are no fun at all!

 

There are travel insurance firms who will insure you, as long as you are honest with them.  Yes, it may be a bit more expensive, especially if going outside Europe, particularly the States, but it is still cheaper than having to foot the cost yourself if you do need transport home - that's the way I look at it, a bit like getting a taxi instead of drink driving - expensive, but not as expensive as getting caught!.

 

I travelled to Kazakhstan last year and their scheme is like the states - if you can't pay,  there's no help to speak of!

 

Anyway, welcome to this site, can we expect to see you on the Great British Bake-off next time round?

 

Macca

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Thanks Macca.

 

As Irene's problems happened in USA and insurers paid up for all her treatment as well as arranging repatriation you will  realize that full disclosure has always been our watchword. Interestingly, one of her consultants indicated that he was legally required to treat allcomers if he was on duty in ER whether they could pay or not. He reckoned to lose about 25% of his income this way.

 

The nurse who was sent over to accompany Irene back to UK explained that ,during all her worldwide repatriation work, she rarely faced the excellent conditions as she found Irene had.

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  • 3 weeks later...

Good to know your Wife had the best treatment, as my hubby would not leave me alone in the hospital and my Daughter and Hubby took shifts to double check I was treated correctly.

 

My Daughter said to a carer "could you empty my Mums catheter please" the carer told my daughter it had been emptied and the carer said behind my Daughters back "Jeezus" so my Daughter said "okay forget it" in a angry manner  but she came back and emptied it and she said "Oh it was full" ..Grrrr gave me  UTI and Sepsis.  Still I thank God, Surgeon and my Family I am here today xx

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Hi Peter & Irene.

Currently 21 weeks for DVLA to review paperwork....only 6 weeks to go for me! ;)

Irene received her licence on Saturday, 18 weeks after sending her application . As is normal for over 70's it is the normal 3 years. She has an "01" restriction due to her double vision, which means she has to wear her glasses fitted with corrective prisms - not a problem.  Back behind the wheel and, accompanied admittedly, has had no difficulties on the short journeys done so far.

Hope you get your licence back soon and can get your independence back.

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