18mths since SAH fatigue and memory loss

[Susanne]

Hi I am hoping for some advice my husband had a SAH in Jan 2017,  he had it coiled, and was away from work for about 8wks.

 

He then went back working his normal 12hr days x 5 weekly. The question I have is he is constantly asleep on his days off, he wakes after 9hrs sleep can stay awake for about an 1hr then will go back again for about 4hrs, he is getting frustrated with this and says he should not be like this now. 

 

Second question his short term memory appears to be getting worse he can't remember little things like shopping lists, I have to write them down now, he also booked an appointment on a Friday for the Monday and forgot he had booked it, tells me something then 5 minutes later will tell me again, these are a few of them.

 

His memory was ok after the SAH the memory problem has been getting worse over the last 6mths. I should say he also has another unruptured aneurysm they are scanning yearly.

 

Sorry for the long message any advice would help me understand please.

[Tina]

Hi Susanne 

 

A very warm welcome to BTG.

 

The first thing i was thinking as i read your post was, wow, such very long hours !

I think your husband is just doing too much and that is why he is sleeping on his days off.

He needs to slow down, listen to his body and be kind to himself.

 

Could he consider cutting his hours down?  Gradually building them up again at a slower pace.

It will give him a better quality of life and not be so frustrating for him.

Extreme fatigue will make any short term memory so much worse.

 

Hope you are doing ok? Wishing your husband well.

Look forward to hearing more from you.

 

Take care

Tina xx

 

 

[Susanne]

Hi Tina

 

Thanks for your reply I wish he would and could reduce his hours but unfortunately as a manager and being a perfectionist workaholic he won't do this. I have tried to explain to him that this is the reason why he feels like he does but it falls on deaf ears (as the saying goes). I really worry that he will become ill again but all I can do is be there to support him.

[Chelle C]

Hi Susanne,

 

Welcome to BTG,

 

I Have to agree with Tina, it sounds like your husband is doing to much, most people returning to work after SAH usually do a phased return, gradually building up to returning to full time hours, some find that they are unable to get back to full time work, could your husband ask to start again by reducing the hours back and see how he manages with that, it might be a good idea for him to speak to his employer about this.

 

The fatigue is his body's way of telling him it's not happy to be pushed to hard, his brain and his body have suffered a major trauma and they both need lots of time to recover, taking things at a slower pace will help with that. All of this is probably having an impact on his memory also, a lot of us have short term memory issues, a lot of us also find that if we over do things or are fatigued it has an affect on the way our brain functions.

 

Susanne, is your husband drinking plenty of water, staying well hydrated is very important, being dehydrated can also have a negative affect on the brain.

 

I'm really pleased you have found BTG, you have come to a great place for help, support and advice, we are not allowed to give medical advice, but we can share our own experiences of SAH and the recovery journey that we are all on with you, hopefully helping you to understand what is going on with your husband.

 

Don't forget to look after yourself too,  

 

Wishing you both well

Love 

Michelle xx 

[Susanne]

Hi he did a phased return for 8 weeks then went back full time. He has tried to speak to his boss but to be honest I don't think they realise how ill he has been as to look at him he looks fine. I will show him what you have been saying and see if he will now slow down but I don't hold out much hope.

 

Thank you for being there for me to have someone to talk to as it helps me understand as well. He is drinking plenty of fluid but most of it is coffee. I really think he is in denial himself as to what happened.

[Super Mario]

Try to persuade him to drink water instead of the coffee. If he must drink coffee then decaffeinated is the better option.

[Winb143]

Hello Susanne,

 

Me personally think it is long hours and I had mine in 2009.  

 

There is a link on here " A Letter  from your Brain" and it tells you what the brain has been through.  It might help him to realise or not,  but it wont hurt him to read it.  As normal I cant get it on here  lol 

 

I have to have a nap most days or go to bed early xx Wishing you and hubby all the best and lets hope he listens xxxx

 

Good Luck and welcome to Behind the Gray  xxxx 

Win xxxx  

[Susanne]

On 18/09/2018 at 17:19, Super Mario said:

Try to persuade him to drink water instead of the coffee. If he must drink coffee then decaffeinated is the better option.

 

I switched the coffee to decaffeinated after the SAH. Will try to get him to drink more water as well. Thank you.

[Susanne]

On 18/09/2018 at 17:47, Winb143 said:

Hello Susanne,

 

Me personally think it is long hours and I had mine in 2009.  

 

There is a link on here " A Letter  from your Brain" and it tells you what the brain has been through.  It might help him to realise or not,  but it wont hurt him to read it.  As normal I cant get it on here  lol 

 

I have to have a nap most days or go to bed early xx Wishing you and hubby all the best and lets hope he listens xxxx

 

Good Luck and welcome to Behind the Gray  xxxx 

Win xxxx  

 

Thank you I will find the article and read it. He tends to come home from work eat his tea then goes to bed. Hopefully it will get better.

[Tina]

Hi Susanne

 

Here is the link to 'A letter from your brain' that the lovely Win mentioned :

 

 

 

[Daffodil]

Susanne, I am not sure where you are located but if you are in the Uk you should find the treating hospital should have neurological nursing team and I would get in touch with them for some advice.

 

8 weeks is an incredibly fast return to work by anyone’s standards and I wonder has your husband actually accepted the magnitude of what happened or has he tried to push on and pretend it’s all in the past. Thing is the reality is blood spilled over the surface of his brain and that has effect whether we like it or not. it is a a permanent injury but equally one that we can adapt to . However not making allowance for a change in stamina and capacity of our brain will result in incredible fatigue and it sounds a lot like what your husband is experiencing.

 

About 15 months after mine I attended a support group at my treating hospital, it was the earliest I could manage this with travel and there was a chap there who had done as your husband did and basically tried to force back to normal and bless him he used to almost fall asleep in the room he was so cognitively exhausted. 

 

My suggestion is to sit sit down and try and talk about this, the current pattern is not sustainable or enjoyable for anyone least of all him so something needs to change. 

 

Every action we do is managed by the brain and that takes energy, so After you do something that takes concentration , then have a pause, small rest then go on. Eat well, drink plenty of fluids and don’t try to match what you did before. In time he may do but paring it all down and building it up slowly and pacing activity will be the only way he can start to understand the new limits. 

 

Its hard but I promosie if you talk and make allowances then things should improve. 

 

[Susanne]

Thank you I have tried to talk to him about it but not sure he is understanding enough. I also agree and think he has not accepted what happened he thinks he can just be the same as he was before. I am worried he will crash before long and become ill again. I will show him what you have written as well. Thank you

[Super Mario]

I do wonder if some counselling would help your husband to come to terms with what has happened.

He needs to ask for a referral from his doctor to facilitate this. 

[Mike157]

Hi, I'm 8 years post OP, it's been a seriously hard journey. The times my mind thinks hey it's time to crack on and get back to normal, but. The thing is my body as it is, now tells me stop, look and listen. It's been the advice for many over the years, including the Green X man too.

 

At one time in my life I could drive 36 hours and be fine, I can now travel 4 bus stops and be ready for bed and or a snooze.

I can solve complex studies, but I cannot look after my fridge or keep it in order.

I can cook difficult curries but get lost with a fry up, go figure!

 

I can sleep for 48 hours straight after doing some light activities. Then on the other hand I can do so much and not be able to sleep. The brain is like a muscle and needs rest. If over exercised it will need to rest. This is so true for those of us that have suffered some type of stroke or have had a significant  injury too.

 

Your mind and body work as one, but, one knows best. That is the body. It can only take so much before it'll take over and make you rest. Although he has the ability to do so much so soon is commendable. But too much too soon is also a bad thing. You may heard of heard the expression baby steps? If so, a gentle reminder that others can see what we cannot nor will not or don't want too!

 

Having a shopping list is one of many aids that assist us to recover to a point we believe we can manage on our own without gentle reminders or aids.

 

We often remember those amazing days pre-stroke with much gusto, we want to get back to them to become normal again.

Remind him gently that there is a new him in his life and it's not as strong as his old self. It's now new and you both need to discover this together, as only together will you both realise things have changed.

 

I used to hate myself after my stroke, why? The ability I had was gone, I needed to learn about so much from scratch. Now if you ask me do I love my life now? Yes I do, so does my partner of a year too. Because we have worked hard together to get over all of the barriers. I thank her from the bottom of my heart. I love the new me.

 

The future is there and always will be, but it's now different especially since there's a possibility of a second aneurysm.

Stress and over working is not not good in these circumstances. Secondly frustration and memory is second nature and you can explore this together and discover a much more gentler way adjust to your new situation.

 

I too have been diagnosed with a second aneurysm and it scares me so much. But, I have a special group of friends now and we look out for me and we work together, to make sure I take my rest as I need and to make sure I don't do took much either.

 

Advice? Slow and gentle, little and often if in doubt don't do it. If you rush too often, or do too much you may find it's got consequences in the long run. You always save more by going slower.... plus life is much better in the slow lane as you see more and can do more.

 

Sorry for the long reply...