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S Baker - Caregiver to SAH survivor


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Hello to you all,


My 67 year old active husband suffered an SAH on Jan.14, 2015 around 3:30 pm. All the "classic worst headache, vomiting, disoriented " , took 20 minutes for ambulance to arrive, got lucky , went to small local ER and had a great Dr., took him straight to CT scan diagnosis SAH with extreme bleed, then tried to life flight, but they were grounded due to icing, so special ambulance had to be called to transport via ground to Boston ( this is about 2 hours drive) , Tufts Medical Center, Neuro ICU unit..Was told there was a very tiny chance he would survive....


Stabilized, external drain , then surgery next am to coil .Excellent Neuro care, my husband was a textbook case, he had every possible complication, vasospasms, ischemic strokes, heart stopped twice ( my husband was diagnosed with AFIB 2 months prior to this) and paddles came out,  pneumonia, UTI, negative reactions to Morphine, Haldol ..( all in all a really fun time) .


When he finally stabilized 28 days later in NICU, they felt he could be moved to Neuro Intermediate CCU.....things seemed to be going ok for a few days, actually was alert after being comatose all that time. seemed to know me most of the time, but that was about it....then suddenly he regressed...because we were blessed with specially trained neuro nurses and I had been researching 24/7 during this time and asking questions nonstop , I questioned his sudden change....Another Emergency MRA....Hydrocephalus !  2 lumbar punctures were done over 3 days, decision made to put in a permanent shunt.


Please understand that during this time period, I was at my husbands side 20 hours a day, lived at hotel across the street , thank God....because if you remember the news this winter, Boston had all time record snowfall and the city ground to a halt !!!! 


After shunt was placed, I saw immediate improvement finally...took him off of Valproate ( anti seizure med) 2 days later we were ready to leave to go to Acute rehab hospital !  NOT....suddenly had silent seizures, 4 over the next 48 hours , so back on another anti seizure med, Keppra....so 3 days later we finally leave for Acute Rehab.  Total days in the Neuro ICU = 40. Total days in bed, 40.


Was told he would be in rehab hospital for at least 3 to 4 months .......Well they had not met my husband or me before...I never left his side....Started PT and OT the next morning, I cheered him on, bullied him when necessary, and sent the rehab Doctors packing whenever they wanted to give him a "pill" for everything....my new goal was to reduce meds at all possible costs .


As soon as he started PT/OT and started moving his body around, improvements were astounding .....yes, tired, easily fatigued, lots of naps really helped....

10 days later, they discharged him to come home .......That was terrifying , but he is doing very well now...still does outpatient PT and has a personal trainer at the local gym 3 times week. driving now, some minor weakness on his left side.


Odd things are:  ears, hearing both seem to be affected ( doctors don't know why)

also, lately a lot of lightheadedness - BP is fine, well hydrated ...and no pattern, ( again Doctors don't know)


I see personality changes, but most of the time is good.


So thanks for listening....


Caregiver in Maine, USA

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Hi SB,


Welcome to BTG, this site helped my daughter when I was in hospital and totally in cuckoo land.


Its a long haul for hubby but with you on his side he will make it.


Your post will please Subzero  another BTG'er as he is carer to his wife.  We can be hard work at times but we don't often say it so  "Thanks".  without our loved ones looking after us we would be lost.


My back aches after walking which limits me but OT's said I would never walk.  I know I am getting there as instead of nice words I get moaned at,  so the honeymoon is over lol.  Also I have a shunt and was really  ill with Sepsis and Ventriculitis, UTI (painful) and then Hydrocephalus.  Call me Lucky lol.


We are hard work but it doesn't mean we aren't grateful to loved ones, we sometimes get a bit weepy lol well I do !!


Keep Well and rest also make sure you both get out for even a coffee it breaks his day up and yours.


My surgeon told us we must be stress free which is hard, so if I break into song on here it's to relieve stress lol xx


Good luck and welcome




WinB143  any moans, worries or rants this is the place to come  xx

Note:~ A lot of us complain about hearing ~Well I do a buzzing noise like a shell up to ear xx

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Hi SBaker :)


A very warm welcome to BTG.

Glad you found us. As Win has said above, you have come to the right place for lots of information and support. We are a friendly bunch :)


You have both been through a very traumatic time, but it's really good to read how well your husband is doing, after all that he has been through and going through..

A very worrying, exhausting emotional time for you, bless you.


In the early stages I was very noise sensitive and also very deaf in my right ear. I can still be noise sensitive 7 years later and also still a little deaf in my right ear particularly. I had a craniotomy on the right side to clip my ruptured aneurysm, I think this may have contributed towards my deafness, as they had to cut through my ear to get to the brain stem.


Feeling lightheaded can often happen when you are overdoing it a bit too much or move to quickly, especially if BP, hydration etc is ok. Your body has a way of telling you to slow down. Always good to get checked out by a Doctor if feeling this way, as you have done, especially with your husband's medical history. 


I found that after eighteen months of constant small improvements, it slowed right down and then I would get extremely fatigued, lightheaded, dizzy, if pushed too hard. This still happens today and to many of us here.. I find I just have to pace myself and know my limits. Which I found out gradually over time.


It is still very early stages for your husband and he should be very proud of how far he has come. You should be very proud too, as your love and support will mean so much just being there for him.


Wishing you well and your husband with his ongoing recovery.

Look forward to hearing more from you.

Take care

Tina xx

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Good morning SB  and a warm welcome to BTG.


It certainly has been a whirlwind for you since 14th January-  So glad that you feel your husband has made good progress.


When you look back on those first 24 hours- and all the emotional strains of being so helpless while your other half is struggling for his life- you realise that now 7 months on all your thinking has been about seeing progress and wishing for more-  and you don`t realise that you do need to take care of YOU too if you are going to keep physically and mentally fit to nurse your hubby to better health.


You say you spent 20 hours being near hubby in the early days- now with him at home you are on a 24 hour shift-


I remember when my wife was discharged- the realisation that it was now over to me was a shock to the system- but you both seem to be fighters and this attitude will certainly help- but remember always that when you do push to far and too fast your hubby will get trigger signals to `go easy`.


And remember-time does heal- all recoveries are different.


How is your own support? Do you have many friends and family near you?


I wish you both all the best in your journey and you definitely will get much help and support from this site



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Thank you all for your welcome and kind words of support.....We have No support groups near us, we about 2 1/2 hours from Boston which is the closest, but my husband doesn't do well with that drive into the city anymore...Too much chaos ....This is the only site I have found that has any sort of forum for this , which is so sad since you are mostly in the UK....

We may have great surgeons here, but support systems are really bad .......


In response to the question of what about me ?  Well our 2 adult sons do not live near us , 1 lives in Wyoming which is 2800 miles away , and the other is about 3 hours away with 2 young children. I have asked for his help on numerous occasions, but that has gotten me no where...We do have good friends here, but unfortunately their plates have been overflowing this last 7 months...elderly mother moved in, youngest son taken to drug rehab.... Just not a good place .....


So,  found a great therapist that I talk to...weekly....She has done her research / homework on sah etc. and that has been helpful..


Overall, he has come a long, long way in a very short period of time and I do get this will be a forever recovery so to speak...small things go a long way....keeping a small daily diary, lists of to do items, structure, structure...Found that structure in his daily life helps tremendously...


There are days that I feel like I could scream !  but those are lessening....I have learned to let him make mistakes, mix up appts., , I think the letting go has also helped me.. I Thank god I work at home and have flexibility  . I try to avoid situations that would be chaotic or overwhelming for him. I think currently one of my issues is that he sometimes goes off on me verbally in almost a rage over nothing....loud barking at me....

He doesn't see it .....I can take it for a while , than I just snap back at him....


I would love to get him on this site, but he is beyond technologically challenged  lol ! 

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Good Morning SB


Am I right-your clock is five hours behind us in the UK?


I have been reading your comments with interest- and having been a carer for four years I understand some of the feelings coming out in your post. Can I just offer a few more comments bearing in mind that you have been quite detailed in explaining about  hubby`s journey so far


It`s very early days for his recovery – he has been through so much-


You will read often on this site about SAH survivors trying to get `back to normal` asap and six months later accepting that the road to recovery is a long patient one depending on their own circumstances. You mention in your first post about how you `bullied` your husband into making greater effort and how you questioned the medics prescribing drugs. This is all understandable- but the brain`s healing does not work along these rules and you will find many posts on this site to explain this - also Neilhapgood`s New Resource post has much detail on this and is an interesting read when you can get the time.


Also- you mention your husband`s outbursts- this is such a difficult one to deal with- as you tackle how to deal with hearing and seeing the person you love behaving in this way- the brain damage caused by the SAH is the reason for this and again you will find on this site that the severity of this varies considerably- trying to come to terms with it and trying to resolve it over time takes it`s toll on your patience, emotions and your own self control (as you say-you have found yourself giving as good as you get)


If you read in my Introduction Thread- you will see a very good response from Daffodil when I raised this question at a time when I too was feeling the strain.


Your SAH journey has happened at a time when you are at a stage in life when your family are no longer living with you- so you do not have the added pressures of coping with young children and the financial implications resulting- however you mention that you were both very active- you do not say if you are both still working by choice or to meet financial/living commitments (you do not have to comment on this here) but you mentioned that in the early days – you were spending 20 hours around your husband.


I would just mention that how to reorganise your life around your hubby`s recovery is a very important decision to make and will have a definite impact on the extent of the strains caused by all that is going on- for me- I immediately took 3 months off work- and a year later decided to retire as I realised that trying to get back to previous normality would be a stress too far- and my health would probably have suffered too. These are all big decisions and choices that do make a difference.


Just a few helping hand comments- and remember you are not alone in your `battle` for some normality- this site is a `goldmine` of helpful posts


Both of you keep strong



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Morning Subs,


Yes I am 5 hours behind you....thank you for your very helpful words. and perhaps bullied was not correct on my part....I would say encouraging and helping him to stay on track is a better explanation....


He has so much anger these days with all of this , but yet finds it almost impossible to talk about his feelings, so it seems to come out in such a nasty, impatient way...AND today is one of those days...I am currently trying really hard to avoid him at all costs...LOL..


I actually own my own Wealth Management firm, and the office is connected to my home. My husband is retired but has a small business/hobby , he builds and repairs split bamboo flyrods and teaches a class on build your own 4 times year. ( have one coming up) and he is having someone help him with that this time..


What I find for myself is : 1. hard to concentrate , especially when he insists on my attention randomly during my working hours...

2. Like today, which is more difficult because of his temperament....and I don't know how to get this across to him...I have employees here and cannot tolerate having his nastiness and barking in the office .....


I have searched high and low for a therapist that deals with SAH survivors / or TBI ....There are NONE anywhere near us....and again Boston is to far....


TODAY I could scream.....sorry need to vent ....

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Vent away SB,


You ought to see the things I have complained about to BTG'ers like "Docs giving me too many pills"  my list goes on lol.


Have you spoken with him about his thoughts, what he would like to do etc.


I used to sit here thinking "so I have had an SAH guess next step is death", talk about morbid but I did. lol

Then along come my Daughter with a site that helped her while I was in hospital, I thought I'll try it  and it's this site and it has saved my life and instead of sitting here all down,  I spoke to people the same as I was, (not as silly as me though) xx ha xx


I realised it's not the end but a new beginning, a struggle yes, but one I appreciate as so many die and never get a 2nd chance to tell  Loved Ones how much we care and also have a row lol  xx  (natural to argue)  sorry  the last bit made me laugh xx


Be Well Both of you and keep your chin up xx

Good luck the pair of you xx


Win xx

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Hi Baker from Maine. What a lovely part of the world. I LOVED Boston and Maine when I visited.

Sorry to hear about hubby but anger is a really common effect I think. It's possibly the frustration of what's lost and maybe his lack of acceptance that everything has Changed is showing as anger. Sometimes I think us ladies who survive the Sah roller coaster trip find it easier to show the emotion of it where as some men may find it hard to release that and I know that physically stopping myself from crying would hurt, it was painful so if he is bottling all that up its going to make him have a lot of head pain. Which makes you angry. Vicious circle.

My advice if I was sat next to him right now would be. ' be kinder and gentler to yourself, treat yourself as you would treat someone else who went through such trauma. Give yourself the gift of compassion. It's ok to be angry, sad and scared but all these will pass, just wait watch and see" .

That's what I would offer and to you and I would say," step outside the office at home when frustrated. Breathe in that fresh Maine sit. Look at the sky and let it go. " and then I'd hug you both. Your both doing well but fitting the blocks to match the pattern you had before won't work. Build a new design , slowly. together .

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Good evening SB
Many thanks for your comments-
How has your day ended? You indicated that it was becoming rather stressful and confrontational.
As Daffodil says- things will get better with time-
How have you been managing so far following your husbands discharge? Trying to keep your business functioning and running a home, not to mention the implications of having your husband at home- you must be under great strain- do you have any help?
Being head of a Wealth Management business- you are used to making important decisions for your clients. Ironically now you are facing some of the biggest decisions you will make concerning yourself and hubby.
You have probably covered many options in your mind already so what I say now may only highlight what you already considered-
Your husband is home- he has been and still is very unwell-and he needs a long time to help him make the best recovery. How much this recovery will be is not something you can guess at this time.
You appear to be very business orientated –are you prepared to look at taking time out for your husband`s sake ?-Maybe it does not appear so right at this moment but he needs you- the speed and nature of his recovery can be very much influenced by you being prepared to devote your time to helping him-perhaps unconditionally-
Is there a possibility that you can employ someone on salary to temporarily manage your business for you-can one of your existing staff take additional responsibilities?
Would you consider selling your business to free your time ? OR realistically `downsizing` to give you more time-
As I mentioned earlier- SAH survivors on this site will gladly try and help you understand how your husband might be feeling at this stage in his recovery-
Perhaps you can take time to tell us what a typical day consists of for your husband at the moment-
You did mention that he is driving- many on BTG have driving put on hold for around six months- by the UK  DVLC.
Many of us will sympathise with your comments about your own family not being around to give you any support- families can be rather `frustrating` at times !!
Please do continue to share your feelings on BTG- it will help you cope as you try and deal with the many issues that are challenging your `self-control` at this time

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Good Morning Subs and Daff,


Thank you so much for your responses and advice ....Late yesterday, I finally heard back from his Neuro office, they want to do MRA/I asap to make sure there is nothing bad going on ( i.e. Small strokes)  . Originally scheduled for follow-up MRA/I and diag.angio on Sept. 4 and Sept.8 . So currently patiently waiting for them to phone with appt. for new MRI/A. 


I opted not to give him the details, just told him they wanted to make sure everything was operating properly with this lightheadedness he has been having . No need to add to anxiety....


AS for your ideas Sub, well financially I could not afford to not work , our medical bills after insurance are in excess of 780,000 usd...and keep mounting. Again we might have great medical care, but its comes at a huge price in the US ..I also did not work for over 60 days this winter, lived in hotels for 50 of those days ( and none of that was paid by anyone but me and it was in Boston, which is priced like London ) .


Luckily, I do have office attached to house, so it does allow me the flexibility to pop in and out most of the time. I also have the total flexibility because of my staff and junior business partner to do all the medical appts. and doctor visits etc..again, thank god...


A typical day for my spouse ( Kelley) , well he usually wakes early these day 5 to 5:30 am..he putters with minor repairs on fly rods , chats with his springer spaniel ( they are inseparable buddies) , checks his email , then depending on schedule , has Gym with Personal Trainer now , 3 times per week for hour each, and then also one on one pilates training on Fridays also. The other days have been getting better most of the time...He will do errands,  grocery shopping with a list .


I have started giving him lists of other things that need to be done around property, ie. mowing with riding mower, trimming with weed eater. Fills his bird feeders ( he has 12 of them) and that has gotten much better, more regular now. He will take a nice long nap in the afternoon most days. Sometimes he will feed our animals, 2 dogs and 2 cats, sometimes he doesn't.


He no longer does things he used to, like laundry, cooking meals during the week , the mowing is usally random, but at least he 's doing it...I hired a landscaper to handle the bigger stuff, spring and fall clean up , mulching all the flower beds etc..


He also used to take care of all kinds of DIY stuff, power washing the house, treating our deck ( which is huge) generally fixing small stuff.

Now , no more, but trying to find people to do this is impossible !! 


I have found that social situations are not good, especially if a lot of people, so now I am trying to avoid them. He thinks he's fine, but that is not what I see at all, he gets very edgy, withdrawn and irritable with me, usually barks at me and sometimes I BITE back !! LOL .....


We have a Harley trike, which he got for his 65 birthday...loves it...he is riding again, but I again find that a lot of traffic or going somewhere not familiar is too frustrating for him. Again he doesn't see it....


As for the driving thing, here unless you have suffered grand mal seizures, you can drive after you have been cleared by a neurologist, which he was.


Wow, are you glad you asked me those questions ?? I have gone on and on and on....Sorry :P  :P :P  :crazy:  :crazy:  :crazy:  


Guess I was really having a pity party the last few days, things could be sooooo much worse...and he really is doing remarkably well considering everything.... 


Thank you for listening...

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Good that you have the scans sorted I am pleased for you but I have to say I was pretty amazed and in awe when I read everything your husband is managing to do just 7 months on from a SAH plus brain surgery recovery from having a shunt placed. You say he's irritable well to be honest I am not surprised to be honest when I consider everything he has started to redo and regain in such a short space of time.

To give you context to my reaction, I like hubby I had similar trauma from SAH and a shunt placed and there was no way I could have done anything around the house for a very long time after without experiencing unpleasant symptoms which made life awful. Driving here you are excluded if you have invasive surgery which includes a shunt and I was out for 15 months before I drove again but to be honest even then the act of concentrating was so very hard. My brain didn't work the same way as previously.

Mowing the lawn, well the first time I did that it was probably 18 months out and I wore ear defenders and then promptly had to lie down for an afternoon afterwards because the vibration and noise just threw me off . As for DIY and other home chores , prior to SAH I was a equal partner in all we did here but that just went out the window, hubby shouldered most of it , ignored the rest and found a cleaner until I was able to do more. And he's riding a Harley, well go Kelley!! You rock!

So no I don't think its a pity party you're right by what you describe he's doing remarkably well , I also applaud him for what he is doing But It sounds to me like he is pushing very hard to do all he can but the irritability may be that saying it's all just a little too intense too soon. The cognitive demands of just doing a shop for instance just uses energy and the brain is still busy healing, I suspect he probably is spinning and in pain most of the time and not sharing it, Just my opinion . Everyone's different.

Just to add, don't discount the effects of the shunt on how he is feeling in all this. The way it now manages the brain fluid is so much more clunky than the natural process that exists in a healthy draining brain system.

Lightheaded and dizzy for me in the early days ultimately saw me having a number of increase adjustments to my shunt setting. Not saying that's the case but if he's doing more and it's draining too often that could explain feelings too, I always got very irritable if I was too low pressure but the good thing is the MRI will point if that is the case but it's one to discuss with doctors too because often the patient knows best.

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Well said Dafs!

Yesterday, day off, just spent most of it pootling about the house doing odd jobs. Went to meet my husband at the supermarket when he finished work so I could shop while he walked our 4 legged best mate. 45 minutes later he met me, I was wandering aimlessly not sure what was missing from my list and not really caring.

Head banging and just really want to go home and shut out the world. I am 6 months (well bar a couple of days) post bleed and still wondering if I need to 'man up'.

Nah! my brain just needs more time -  and I'll give it. At least I am still here and I know my husband kids appreciate it even if it is only for the meals I cook them! 


Clare xx

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Thanks for sharing again SB
Glad you appreciate that others do care and want to help with their comments-
As Daffodil says- the unseen brain is trying to cope with it`s trauma and needs time- fatigue and stress will result from too much effort too soon-
Look forward to hearing the results of Kelley`s appointment at the weekend-
Claire- as you say- it`s only six months- and you have been testing your boundaries- nothing wrong with making August a reflection month- free from the upper limits-
Missing that picture of hubby and the chicken :-D

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Hi SB,


I have just been reading your posts and I find it amazing that your husband

is doing all the things that he is so early in his recovery.

I was exhausted just reading it, maybe the others are right though,

he could be over doing things and his body is reacting badly to it,


I was told when I had my SAH that recovery is a long process, it doesn't

happen over night, it can take years, some of us never recover fully, we do

improve with time and things do get better but it all takes time.


I had my SAH 14 months ago and I am still not great, admittedly I have more

good days than bad, but if I push myself to hard then I pay for it with nasty headaches,

dizziness and irritability, I still can`t stand and cue in a shop because standing still for to

long makes me dizzy, I still am very noise sensitive, and don't like crowds of people, 


I think your husband is suffering from doing far to much to soon, his body is telling him to slow

things down a little.

It must be really hard not having family close by, you have to take all of the stress on yourself

which does come through in your posts, I do feel for you.


As others have said keep coming here we are all here to help, listen and comfort you when you

need it, I have found this site a godsend since I joined and I am sure you will too,


Hope all goes well with husbands scans, keep us posted.


Love and hugs to you both

Michelle x

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Morning all ,


Mri done Sat.am, back to maine same day....Today got call telling us to come back to Boston for Diagnostic Angio first thing tomorrow am. MRI showed no further seepage and shunt seems fine also. BUT, concerned that there is a narrowing where the 2 stents were put in June 8, so need to check that out, since that would be causing the now almost constant lightheadedness and dizziness ..So off we go this afternoon for 2 more nights in Boston ...At least we are being proactive....Will advise tomorrow when I know more....


Kelley is feeling scared, frustrated ( understandably so) , I am too....On the bright side I got to spend an entire day with my 2 wonderful grandkids yesterday ( Poppa stayed home )  ....


Thanks for listening ...

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Change of plans !!!  Surprise .....now we go tomorrow for Angio on Weds. ....TRY TO GET A HOTEL IN BOSTON THIS WEEK !!!!! Shoot me please....You don't want to know what its costing per night, but I can tell you that "Claridges" in London doesn't touch a candle to it !!!

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Hello SB

Thanks for keeping in touch and for the update on Kelleys visit to Boston at the weekend.

So many demands on your time and so much you find you can't control. The cumulative effect of so much going on does over time take it's toll on the Carers. I remember when we had the ambulance journey of 125 miles to Edinburgh for my wife's coiling-circumstances with her scheduling resulted in me hurriedly having to arrange extended accomodation to cover for additional days until she was able to cope with the return journey .

Glad you were able to take time with your relatives at the weekend-someoneelse to talk to does help.

Feel for Kelley and yourself with the apprehension of more tests.

Keep strong and hope there is a good outcome next week.


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Oh dear lady in Maine. I am guessing you have tried all the Laterooms.com to get a better deal. Oh well, an angiogram eh? Well that in itself is somewhat nerve wracking for you both. I can recommend that if you want a giggle to lighten up afterwards that you read some of the Immac for men reviews on Amazon.


I did after my angio and the nurses and I were in complete hysterical laughter, actually no don't do that as he will be trying to lie still but I mention it as it's Slightly topical really as hubby is having an angio and they may well give things a little trim and tidy:) !

So I hope it goes well for you and biker boy Kelley. I am hoping all is fine with latest scan and it's just the odd and mysterious sensations athat are thrown out from a brain doing some healing is all that is at play. Take care. Safe trip. Again.

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Thanks all,


and Yes Daff, unfortunately, this is the week in Boston that has 3 huge conventions and a lot of the University's have orientation starting also for the new students ....SO ...loads of fun...I just hope all goes well and we can come home on Thursday....

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Hello all ,

Sitting in our room at hotel after a long but good day at tufts medical , hubby is sleeping like a baby now , thank god....

ANGIO done , good news all good, stents and coil is good... Now they tell me that stents actually will narrow the Arteries while they are healing into artery walls , then will open up again once absorbed into walls ...

So that would probably cause the lightheaded feeling etc... All good.. Want him back on a statin however , Lipitor is a no since he had all the bad side effects before , so now will try others , but very low dose ....

Also the hearing issue is to be expected , side effect from sah....probably go away but ? When ...not sure ...

First time they have used 2 stents to bypass aneurism , so test case ....

Found out today he was a grade 4.5 bleed , so very unusual for him to be walking and talking...they truly see him as a miracle baby.

Hide my pity party last night , and no one was invited .... Tonight I'm so relieved ...and grateful

I must have told 4 neuros and pas today about this site ...

Thank you all for listening ... Bless you

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Good Morning SB


So glad Kelley`s tests have proved encouraging and have given you a chance to feel positive-


So it`s now the journey home and and Kelley`s continuing long-haul journey to a better quality of life.


Wishing you the patience to deal with the ups and downs and the strength and resolve to cope with all the work-home and nursing challenges along the way.


It will get better and you both will look back on these early months with a smile-


Keep strong




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