After effects

[Brenda Holliday]

My husband had a stroke on the 3rd January 2020.  His right hand and speech were effected. 

 

He made a very good recovery from those symptoms but I have become anxious about behavioral effects. 

 

He is very tired, does very little and has little self motivation.  He is also easily irritated but sometimes he is not. 

 

His memory for recent events is very poor. I am talking about things that happen on the same day let alone yesterday or last week.  Yet sometimes he surprises me by what he does remember.

 

To be honest I don't know whether I am coming or going as the ground beneath my feet keeps shifting.  Can anyone relate to these experiences? 

[Tina]

Hi Brenda  

 

A very warm welcome to BTG 

Glad you found us.

 

Great news to hear your husband is doing well.  Your husband is still in the very early stages of his recovery, His brain will be working overtime trying to mend and recover from a huge trauma, as well as doing the normal everyday things. 

 

All that you mention is quite normal and many of us here can relate to.   

There will be good days and bad days at this stage, but it will get better  

 

Wishing your husband well with his recovery and look forward to hearing how you are both doing. So hard for our loved ones too.

You will find lots of helpful information on the Forum. Please feel free to ask any questions, we cant give medical advice, but can share our experiences. 

 

Take care & remember to look after yourself.

Tina xx

 

[Brenda Holliday]

Dear Tina,

Thanks so much for your response.  I have to confess that going from feeling quite "normal" before reading it, I am now in tears.  It has made me realise what an enormous burden I have been suppressing.  Your words give me great comfort and will help me to cope much better. Thank you.

Brenda. 

[Skippy]

Hi Brenda

 

So glad you found us too.

 

I can completely relate to all you've said above about your hubby.  It's like you're describing me.  I couldn't remember people visiting the same day let alone conversations I'd had with people.

 

The irritability was a given - for me it was borne through the frustration of not being able to remember things and not being able to do what I wanted to do.

 

It is very early in recovery and it can be a long road to get there - but we're all different and our timescales will vary.

 

I know it's hard for you right now, but try to stay positive and ignore the irritation.  If you have to repeat conversations, then do so, but without reminding him you've had the conversation - hopefully one day he'll turn round and say "We've had this conversation!".

 

We're all here to listen and help you both through this xx

[Macca]

Hi Brenda and welcome to BTG.

 

Short term memory is one of the casualties of SAH.  Your husband's brain will be trying to re-wire itself.  From the great replies above, you will gather that it is quite normal or usual to have these problems. Longer  term memory is less affected.

 

Over time, it will get better to some extent - as did mine - but as Tina says it is still very early in recovery stages.  Good things to be doing for him will be to make notes of anything he needs to remember, keep a diary, keep on repeating things until they become long term memories.  Once you transfer the memory into the 'other box' he stands a better chance of remembering.

 

Skippy catches what I am trying to say above.

 

Please remember, he can't help it at the moment, so you need to be tolerant of him and give him the support, space and time to recover.  Resting well is just as important as him making an effort.  At this stage of his recovery he will tire easily, but it will get better over time.  It is a slow and gradual process though.  He might look normal because there are no scars to see, but there is internal damage that needs love and care, support and time to heal as best it can.

 

Everyone's journey is different and times vary from individual to individual, but big improvements can be made.  Keep a diary of your own, noting what he can and can't do, and over time when you look back on it, you will see big improvements have been made, almost without noticing.

 

Remember when a relatives kids are growing up?  if you are with them every day you don't notice much, but if you haven't seen them for six months you say 'My word look how much you've grown!'  Well, it's a bit like that with this recovery lark!

 

We're always here, so feel free to ask your questions whenever you want to and you will get replies, for sure.

 

Best wishes

 

Macca.

[Winb143]

Hi Brenda,

 

We mend but it takes us a long while to come back to some normality (In my case it did as never been normal) lol xx

 

My Daughter found this site, I was afraid at first as I thought my next step was Death, Cheery wasn't I !!   So came on here after I felt strong enough

 

My way out of this mess was to keep happy and tell family not to tell me sad sob stories or who they had a row with as my brain couldn't take it.

 

Loved Chocs and singing and being spoilt.  But when I came on here I saw people with same as me and they could be funny and smile...This site helps others who feel alone in their fight to get better, we are not alone I learnt from this site and it really helped me.   I'm forever asking "Did I tell you this Al" to my hubby and he goes" yes Win 6 times now !!" Grrrr.   So I knew I was better after our first row.

 

Early Days for your hubby but talking to others who have been through same does help.  Was told I wont ever walk again or be same as was ..Still need a wheelchair  for going shopping but walking around home and showering is done by me so a little dignity back xxxx   Good luck to you and your husband and let him  know there is life after Bleed  xxxxxx  We are all Survivors  xxxx  My right hand is weak and when I write cards out it costs me a fortune  tearing up the ones I messed up on lol xxxxxx

 

Chins up the pair of you and honestly it does get better look back 4 weeks not 4 days  and see how far he has come on xxxx

Remember you also need a break xx if possible  xx

[Swishy]

Hi Brenda,

So happy you found this site...I know when I found it for the first time I felt like I had found my people, people who understood my journey.

 

Brenda, my husband and I have talked at length about what happened to me, nearly 3 years ago, and also what happened to him.  I am sure he would agree he felt like the ground was moving....I didn't realize how it was impacting him until I had improved a bit myself. 

 

Having an injury to your brain is not like any illness I have ever experienced.  It felt like it interrupted all my efforts to resume my old life.  I couldn't figure out how to use my cell phone, couldn't remember if I had talked to someone that day or two days ago...everything felt a bit like a scrambled egg...

 

And there stood my husband, love of my life, trying to understand it all, visiting me everyday and when I came home trying to get me to all appointments and make sure I didn't fall or forget my pills...I am sad to say it took me a while to feel his pain going through this... 

 

It is a slow process, the brain healing, and as said above something that is not measured in days or even weeks...more something that you look back on and think..oh yes he/she has gotten better since then...our brains are amazing though and will work hard to heal...

 

I wish you both well , you are lucky to have each other...

Jean

 

[Brenda Holliday]

I had not realised until I read these kind and supportive words, how sad and anxious I was.  The tears have relieved the tension that I have been feeling and I thank you all for the part you have played in that.  John and I took the dogs for a walk today and I was mindful not to walk too far ahead of him along the path through the woods, and to wait for him and be patient. 

 

I  know I will not change overnight but to know that our situation is one that others know about and have been through is an enormous help to me.  

[subzero]

 

Hello Brenda and also a very warm welcome to BTG.

 

I am sure that already you are benefitting from knowing that you are among friends who understand the struggles ahead for your husband,  and who are able to share from their real experiences what you may be faced with over the coming months and years.

 

The Carers Forum is exactly that. When your husband had his bleed in January two lives were never going to be exactly the same again. 

 

On 09/04/2020 at 02:48, Brenda Holliday said:

To be honest I don't know whether I am coming or going as the ground beneath my feet keeps shifting.  Can anyone relate to these experiences?

 

21 hours ago, Swishy said:

And there stood my husband, love of my life, trying to understand it all, visiting me everyday and when I came home trying to get me to all appointments and make sure I didn't fall or forget my pills...I am sad to say it took me a while to feel his pain going through this... 

 

While your husband is struggling with the aftermath of damage to his brain in these early days he is physically exhausted and the trauma has affected his ability to control his limbs. His thought processes are all confused and he is not acting like `your loving husband` anymore.

 

You are devastated by what has happened, yet relieved that he has not died. The mixed emotions are playing havoc with your normal thought processes too and these early days have been filled with worry, lack of sleep and little time to take care of your own nourishment. 

 

The medics have given you little guidance on how he will recover because at these early days and weeks they simply do not know the full extent of brain damage... some temporary and some more permanent. 

 

As the weeks lead into months you are encouraged by progress but always wondering when you will get back the husband that you had grown so close to over the years.

 

And three months on you may even let yourself start thinking that life isn't going to be the same again .... and to some extent this will be the case ..... and this is different for all survivors...... Everyone`s struggle to adapt is different. 

 

Perhaps the most difficult challenge for you is when your dear husband shows irritation and frustration towards you when you are trying so hard to help him. Emotionally this is so very hard to deal with .... and as time goes on you may even find yourself beginning to react in a similar manner out of your own frustrations .... then you experience pangs of guilt about your own reaction and feelings.  He is your husband. 

 

Brenda ... when the brain has experienced such trauma ... often the patient`s tolerance levels dramatically change.  Instead of `biting his lip` when a situation may be upsetting him... now he just `lashes out`  to varying degrees.  This really is upsetting for you over time.

 

As our members have advised in their comments .... any form of recovery requires patience .... and it is so important that you accept that there is no quick solution.   He needs you so much as he faces the challenges ahead.  

 

However you too need to take care of yourself.  Try and talk things over with your husband ... but also lean on your good friends and family.  It is good for you to have a shoulder to lean on throughout this lengthy journey.

 

So Brenda,take care and keep in touch with us in your journey together.

As others have said .....  progress can be slow but time does make a difference.

 

 

Subs

 

[Macca]

Brenda,

 

I think what we're all trying so hard to say is, "You'e not alone now, don't carry the load all by yourself, share it with us."

[V.Mama]

Hello Brenda

 

Welcome to BTG, I'm also very glad you found the forum.  This forum has been a haven of compassion and understanding for me, and eventually my husband.  My husband had a non aneurysm SAH in May 2019, and then developed hydrocephalus and required a brain drain as we called it.  He spent 3 weeks in neuro ICU before going onto the ward for a few days and then being flown back to our small country town.

 

He didn't require rehab, but endured ongoing and debilitating headaches for a very long time and fatigued very quickly.  He feels things emotionally much more, or is less patient at times than he used to be.  I have noticed his short term memory has improved over time.  Injury to the brain takes an incredibly long time to repair.  Our brains are 'plastic' and have the ability to continue to heal, or to find new ways of connecting, throughout our lives.

 

Sometimes, the thing that unlocks our recovery can be very curious.  For example, I worked with a man who had a brain injury, I met him many years after he had left hospital and completed rehabilitation.  His mother told me that when he had completed rehab, he still had limited speech, and often would get frustrated at not being able to find the word he wanted to express himself.  

 

He started seeing an occupational therapist, who realised that during rehab he had learnt to walk again, but had not learnt to crawl.  So she taught him to crawl, like a baby.  He couldn't do it, but when he did finally learn, his language, speech and words began to return.  When I met him many years later, his speech and language had completely returned. 

 

Having worked with people with a disability, including brain injury, for over 20 years, I had some expertise to help me to understand my husband's very slow recovery.  It was a fine balance of doing for him what he needed me to do, while also setting up situations in which I would leave him to do for himself, to build his confidence.  It has taken enormous patience from both of us.  

 

We have been extremely fortunate to have a good quality handful of friends and family who supported us emotionally and practically. Many people gave a hand, dropped off meals, helped care for our teenage boys, chopped firewood, helped in small and meaningful ways, or just listened and came for a cup of tea.  But their lives continued on and sometimes they stopped coming or checking in, because my husband's progress was very slow.   

 

I did notice that many friends or colleagues stayed away, fearful that the person they had known would be unrecognisable to them, that they would feel embarrassed by his condition.  This is human nature, people fear what they cannot understand. There were months where I felt incredibly alone and lonely.  But this forum helped me through, I hope it helps you too.  

 

People can not 'see' the impact of a brain injury, it is an invisible disability.  Therefore, it is often misunderstood.  I know that my love, care and constant reassurance and belief in my husband has helped his healing journey.  I remain so incredibly grateful to have him here. I faced the very real possibility of saying goodbye forever, and there were days when my wish for him to live seemed cruel to him.  I'm not sure there's a 'right' way to go about things.  We do the best we can, with what we have.  

 

Thinking of you and I hope your husband is making progress.

 

Veronica

 

 

[Brenda Holliday]

Hello again,

 

I am so grateful for all the supportive words that I received after my husband's stroke on the 3rd January this year.  He has now had another stroke, this time affecting his left side.  He cannot walk and is having physio.  He has been in hospital since 12th December. 

 

I have been allowed to visit him yesterday and today as it is Christmas eve and Christmas day.  This is normally not allowed because of the fear of spreading the coronavirus.  I felt sad to see him in his weakened state.  I think he will be transferred to a place nearer to our home where there is a rehabilitation unit.  

The future is uncertain but I am taking one day at a time. 

 

Kind regards

Brenda Holliday

[Daffodil]

Brenda, I am so sorry that your husband has had another stroke and you are both apart at this time. 

 

I imagine seeing him was a relief in one way but hard as well with the enforced restrictions making visiting difficulty but yes I hope he will Be able to come closer to you and home and get some rehab help.

 

i hope he is receiving good care and was able to talk to you but one day at a time is probably very sensible.

 

be kind to yourself and do ask family or friends for help or just to talk if you need support. That’s ok. And if you are worried or just want to vent feel free to come here. Someone will listen. 

 

Take care, go gently. ANd look after yourself, eat well and rest too. That’s important so you have strength in all this.