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James W - Looking for support for Dad...


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Hi All, 

 

I have just joined! I thought I would post about my family's current situation. My dad suffered a ruptured aneurysm on the 2nd June this year. Initially it was a grade 2 bleed but then progressed to a grade 4 as he was in hospital waiting to be seen. He was then transferred to the specialist neuro hospital (Preston Hospital) on the 2nd and had emergency surgery during the night to fit a drain.

He then had the aneurysm coiled on the 3rd in the morning. He remained in critical care for just over a week. When he came round he was very emotional but he also seemed pretty normal. He was then transferred to HDU where he stayed for 5 weeks. He was referred to another consultant neurosurgeon who came to the decision that fitting a shunt would really help dad as both his ventricles were still slightly "plump" and lumbar puncture wasn't as successful.

Dad had a permanent shunt fitted and the improvements were noticed straight away. Visiting him the day after the shunt operation was wonderful as dad was laughing and joking with us and singing along to ridiculous old time songs. The whole family was in tears with happiness. However, whilst being in HDU, he only sat out of his bed on two occasions and had to be hoisted.

He then transferred to the Royal Blackburn Hospital for one week on a gastro ward (slightly ridiculous as he had no problems with digestive system etc). We had to fight to get him to a stroke rehabilitation unit. He was transferred to a fantastic stroke rehab ward last Thursday and has made amazing progress since. Still has to be hoisted. 

 

His speech is fine and his long term memory is excellent. He still has a fantastic sense of humour. He has also just recently started eating purified food and is able to drink by himself. Since Thursday he has been sat out in a supportive chair for the majority of the day. Last Friday was a big day for him as he received physio for the second time and he became very very tired.

He is however, becoming increasingly agitated. He is still on an NG feeding tube despite being able to feed himself he also has a catheter. His NG tube he has pulled out about 7 times and he has also pulled his catheter out once (Ouch). 

 

My mum has been amazing and is dealing with it exceptionally well. My sister and I, although we know its ridiculous, want things to happen quicker and we are currently worried about him walking. Dad was very fit and healthy pre bleed. He didn't smoke, drank in moderation and was generally a robust strong norther man. However, being bed bound for 7 weeks has really taken it out of him.

His muscles are obviously weak and he has lost a lot of weight. He is determined to get up and walk and keeps saying that he has been walking around the ward etc. My sister and I are both worried that he won't be able to walk again. Dad can move all his limbs with some power - the only exception is his right arm which he wasn't able to move very much but this has improved immensely (yesterday he held a mug of tea in his hand and was able to drink easily).

Another thing we noticed was that he was moving his feet alternatively in time to some music that was playing from the ward radio. We are seeing all these things as a good sign. However, dad is still very shaky and weak - we hope his weakness is due to him being bed bound rather than his SAH. What worried us even more is that upon arrival to the Stroke Rehab word the nurse explained that some patients are transferred directly to a residential home and they also asked us questions about wheelchair access in his home. 

 

Dad is a fighter and has determination. Yesterday he told mum and I that he had learnt a lot whilst being in rehab. He says he is determined but he has to take things slowly. 

 

Any advice gratefully received. 

 

James

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Hi James. Sorry to hear about your Dad but it sounds like he has had a good standard of care even with the blip of being on the gastro ward but suspect that this probably down to the level of advocacy and support, you, your sister and your mum are giving making sure he is being helped appropriately.

You have fears of him being unable to do what he could but the answer is that only time will reveal what he is able to regain but keep hope, if his feet are dancing then his ambition will match that. Some of what he will do will be different, it is unlikely he will do it all with the same power and pace as previously but probably with the same spirit and effort of old.

Don't forget that his brain is doing tremendous amount of unseen work right now to deal with the effects of the bleed, the invasive surgery of the shunt and the daily business of living and responses so his energy will be going on all of that and expending a massive amount of calories which may explain why they are keeping his nutrients up.

I was in hospital initially for 7 weeks and lost masses of weight and muscle mass but it does come back. Encourage him to do simple hand and foot movements, some bed exercise if you like , others may have some practical suggestions for you.

So keep encouraging him to eat independantly as well, keeping energy is so Important nd drink lots. The catheter pulling out is common...I can claim a hat trick for that...but again i had to prove I could independantly get to the toilet before it was removed permanently but that's maybe something to aim for. Leaving it in is one less job for nurses and that's not criticising them, I can see why they decide it's easier to leave it in than have to change sheets etc when they can't respond to a buzzer in time.

Your dad will get very tired very quickly, help him with that and encourage him in adapting to what I now refer to as 'dim sung' living style which follows post SAH. ; Taking things in tiny bites, resting and enjoying the taste of each small achievement!

Others will follow im sure and offer more advice and practical help. Laura I hope may see this thread and pop on and share what's been happening with her Dad but main thing keep hope, share laughter, keep demanding good and appropriate care and do ask here if you have questions about how he is doing.

Wishing him and you all the best.

PS I had a grade 4 also and also have a VP shunt and I now walk 95% of the time without a stick and am back working part time so you will see dramatic changes in the next year from where he is now and immediately post SAH but measure progress in terms of that point and try not to compare him too much to pre SAH if you can.

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Hi James,

 

I had a 4 I think is that 1 down from the highest? also EVD's

 

Anyway I was told to have me put in home and I wouldn't walk again by the OT's grrr lol

 

I remember nothing until I had a shunt fitted 1 year later as I had Ventriculitus, followed by Sepsis. 

 

I remember when I was in cuckoo land I had trouble with catheter and it really hurt me, ask if they can take catheter out if Dad can ask for toilet.  I pulled mine out with the pain and when I got home a Doctor took it out and I was told I wet myself and fell into a deep peaceful sleep.  lol  This happens so try and get catheter taken out.  In fact insist xx

 

I got UTI with the catheter in !! 

 

Does Dad have a fave song, if so sing with him, as my family sung with me and it helped me recover and helps talking.

 

Walking after my shunt was put in ~Ready?  It was Christmas 2010 and I was tapping my feet and I thought if you can tap dance Win you can walk, forgot about weak legs !! so took 4 steps to give my hubby his pressie and I got a zimmer frame  lol  but it started me to walk.

 

Baby steps at first now I walk approx. 100 yards/strides before back goes and I have my independence back.

 

I wish Dad and all of you all the best.

Now tell Dad to twirl toes and ankles and go for it xx

Love

Winb143 xx forgot to say my Daughter came to visit me and She saw a youghurt pot on my bedside table. xx It meant I could swallow on my own.  Long haul but you can all make a difference.

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Hi James

 

warm welcome.

 

Your Dad sounds like a great fighter, I found that through all, my determination is stronger for things now.

Yes he has to take things very slowly, he maybe wont want to but its a thing.

 

I too have a shunt and a tube in my brain which drains fluid the marvels of science

 

take care and remember find time to chill yourselves..

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Hi James,

 

Welcome to BTG. I am sorry to hear about your father but glad he is on the road to recovery.

 

I had a Grade 4/5 SAH this January and also developed hydrocephalus for which I had a shunt fitted in February. Like you my family noticed a big difference in me once I had the shunt fitted. It is a very useful device :-)

 

During my stay in hospital I also lost a lot of weight and muscle mass. Since being out I have managed to put the weight back on and am working on regaining my fitness. I have been able to regain walking quite well and can now walk long distances without too much difficulty most days. I still have issues with stairs and I can't run yet and have difficulty with more complex coordinated movements.

I am undergoing physio in an attempt to regain some of this which is exhausting but useful. Like your father I was quite fit and healthy before this happened (and I am only 28 as well). Hopefully your father's level of fitness will help him in his recovery. I have been surprised at how long everything has taken, however I have learnt that recovery from a SAH takes a long time. Even though I am only 6 months down the line I have made masses of improvements so there is always hope.

 

It is good that your dad has had some physio in the hospital and is taking things slowly. Hopefully over the coming weeks you will see some gains from this and he can continue with it over the next few months. I know it must be very frustrating for both him and the rest of your family at this time but in the hospital they always do things in a certain way - I also remember getting frustrated with it as well though. If you are worried or concerned about anything try to speak to someone in the hospital about it to see what they have planned for your dad.

Take care,

Gemma xx

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Hi James,

 

Patience is a virtue!  I too am a northern man (between Manchester and Bolton) and was physically fit before my SAH nearly five years ago.  I was playing 5-a side football the night before mine - I was 54 at the time!

 

Recovery is very slow - your body simply does not allow a quick recovery from SAH.  If you go too quickly. your body lets you know you have done too much.  It took me the best part of a year before I would walk unaided again!  I still have the odd balance problem, especially if I am tired.

 

That wait for relative normality is frustrating and it does make you agitated at times until you adjust and get used to the new pace of things.  During that time, your continued support for him will be vital.

 

Just take your time and when there are things he can't do encourage him to think and work out a different way.  In some ways that can be just as satisfying and it makes you more creative.  A bit like a cranial version of the Great Escape, if you like!  Learn to strike a balance of being there when he needs you and standing back to let him do some things for himself.

 

Keep a diary of what he can and can't do now and maintain it over time.  You will be amazed at the difference in six months time and beyond.

 

Good luck!

 

Macca

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Thanks so much for all the comments - very very helpful! All the family are having up days and down days at the moment. Its really difficult. We are pretty terrified of dad ending up in a home or not being able to fully cope for himself. We are fully aware that dad won't be the same as he was but we just pray that any disabilities are minimal. Ugh - such a difficult time :-(

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Hi James,

 

Sorry to get chatting as a result of these difficult times. Dad had a Grade 5 bleed on 14/05, followed by hydrocephalus, vasospasm and an infection that had him at such a fever pitch that he was bouncing off the bed.

Your Dad's frustration is well understandable, my Dad was referring to himself as an inmate towards the end of his stay in acute care, but in a really strange way I take it as a positive sign, there is so much going on in there with all the healing that to find time to be bored or frustrated has to be positive.  Whilst obviously we are not allowed to comment on the medical side too much, I can offer you a few of my experiences or conjectures here.

 

Dad lost a lot of weight (1 stone in 2 weeks) and we made a point of every day taking in lots of high calorie tempting treats, we also made quite a point of it with the nurses who then referred him back to the nutritionist who upped his fortisips.  In my wisdom I ordered protein cookies - well, I know what I'm going to be trying to palm-off on gym friends when I eventually get back in there!

I should, however, have bought shares in Capri Sun! It was my experience that Dad, and many others on the ward would be too exhausted to eat their food and it seemed welcome to the nurses when my Mum offered to stay during protected mealtimes to help him eat. The rule was that only 1 visitor could stay.  Dad was very weak after a few weeks in bed, but we would take him out in a chair to get fresh air outside and go for a little stroll down the ward in the evening to make sure he was moving enough.

Whilst it might be too early for Dad yet, its something to keep in mind as it seemed to be very restorative for Dad, especially going outside.   We found out the other day that he initially had weakness in his right side, but that seems to have gone now. You can play quite a roll in his recovery as we all know our medical staff are stretched. On this point, if you don't understand something about your Dad's care, ask why. Have it explained to you, sometimes it gives the flag that is needed. 

 

Another large conjecture, which is based entirely on my gut, is that my Dad would have stayed in hospital longer if it wasn't that both my Mum and I were able to make it so that we were at home (both full time 'career' women as some would say). I do feel that it led to him being discharged too quickly from the final hospital, but what I can say is that despite the hugely added stress of caring for him at home it has been more than worth it.  Things that worried us whilst he was in hospital, like confabulation, turned out to be unnecessary. 

 

And I know that you say that your Mum is coping well, but I have seen my role in all this to look after and protect my mum as much as Dad. It is good that you have found your way to BTG, and it is important to do a lot of reading so you know what to expect for the future and for your Dad's current care, but act as a filter.  In the early days my husband read and filtered to me, now I read and filter to my mum.  And I read a LOT (I'm an academic)!!

There are some things that will give you hope, there are other things that use terrible language (see my earlier rant about 'catastrophe') and if I can take that upon myself then it is a good thing. I also ask about stuff Dad wants to know about on here too, everyone is wonderful and if they have an answer or an experience they can share with you, they will.  Dad feels that at the moment he would like to limit his knowledge on it all, but I think that has come after reading the one pamphlet that had catastrophe on it 3 times before I then decided to rip it up!

 

Things will get better, and in looking at the difference of 2 weeks between 'the' night for our Dads and what has happened for my Dad in the last two weeks, it has been huge. Many notable changes.  So have hope, that feeling of being simultaneously squeezed and pulled from every direction will start to ease. You have each other, and you can laugh. Our family home has become a hotbed of jokes that outsiders would find inappropriate, but it keeps us bouncing along! If there is anything I can ever answer for you, please just ask!

 

Best wishes to you, your Dad and all your family

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Hi Laura, This is very very helpful! Thanks. Its so good to have someone else going through the same thing. The main thing that concerns me is that dad has walked for nearly 8 weeks. He has only just started on purified food. Sadly, what seems to have delayed things is the fact that his consultant and the specialist neuro nurse in the initial hospital both went on holiday for two weeks at the same time.

We were assured that dad had a plan in place but nothing seemed to happen. We really had to push to get him onto a stroke rehab ward and things have been positive. However, not everyone is aware of what he can and can't do. For example, a nurse came in the "quiet room" where dad was in a supportive chair and said "he can't have soup can he?" In actual fact dad is able to have purified food and had just polished off two full mugs of ribena. His swallow seems to be fine but the SALT team seem overly cautious. We just want him eating so he can build his strength. 

 

Dad is 70 but previously was extremely fit and healthy. One of the nurses also commented on how short his medical history is and she actually said she had never seen such a short history. Despite this, dad is still in a chair and they aren't, in my opinion, getting him up quick enough. He has started to try and lift himself out the supportive chair!! Confabulation is also a problem - he keeps telling us he has been for a walk, has had people visiting and also isn't too aware of his surroundings. 

 

On top of all this, mum has now got a throat infection so can't go and visit! Its down to my sister and I but this is obviously increasing mum's anxiety! 

 

Ahhh well - soldier on we shall!

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James honestly I have said this I know,  but when my catheter was in I was out of it and used to think I was in a café instead of hospital bed.

 

I used to say to my daughter " My treat pass my bag up" when she told me my bag isn't here I'd go  "stop being silly Sa"  as I never knew where I was but once my catheter came out I started to understand more.

 

Just get it out and ask Docs can it cause UTI (Urinary tract infection)  if they say No then they are fibbing to you.

 

I have been in that place and it is so uncomfortable so just get it out and see how Dad is for a Day xx

 

Regards

WinB143 it might mean you hoisting him up to go a wee but its better than him suffering xx Good luck

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I'm glad I can be of help! we must have doubled Dad's calorie intake with all the stuff we took in, so pile it up around him.  If the nurses can see that they may also realise what he can or can't have.  The continuity of care is an issue, we certainly found it so we made the point of chatting to whichever nurse he had for the day, finding out how he was getting on and making points about how fit, strong and active a 64yr old he is.

I think some may make assumptions, Dad said he feels that people do when they read an age on a sheet of paper. If he is trying to get himself out of the chair, tell the nurses and ask if you can help him up etc. 

No-one has ever told us that there was a plan! but we finally seem to be getting somewhere today having had a positive phone call! finally.

 

Going for a walk and visitors would have been mild confabulation for Dad but he had difficulty regulating his salt level (which can cause a high level of confusion) and then the UTI that wasn't recognised very quickly.  Dad was not really ready to accept that he was in hospital either! However, that has gone away since he has come out of hospital and is now more of a case of difficulty of processing a lot of information quickly, so confusion rather than confabulation.

 

You all need to think of yourselves as your Dad's voice for now, and we have certainly had to adopt a different way of working. Question everything, ask why it is the case. I know it can get tiring and you will be frustrated, but unfortunately it seems to be the only way to get things done (well, at least that's how it has been in our case).  Make sure you take time for yourselves too, go for an outrageously priced coffee and cake, go for a run or anything that will break the cycle for you a bit. Your Dad will also enjoy hearing the stories of what you have done too, we would take photos of food and places etc, etc so he felt more involved.

 

Your poor Mum with a throat infection too, I can't imagine how anxious it is all making her, take photos, videos, of you and your Dad to take home so that she can see him that way at least. If your Mum needs to be busy (mine did, my house has never been cleaner) perhaps she could make up some food to take in, a lot of stewing fruit is starting to come in to season too. I'll always remember carrying a bowl of stewed rhubarb and custard through a hospital!

 

soldier on you will, and it will get easier!

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I had a lot of confabulation in the hospital as well - including things like thinking I had more than one set of parents and saying I had done stuff which I hadn't, but as Laura has said this became a lot better towards the end of the hospital stay and definitely once I came out of hospital. My family also brought me in extra food so once your Dad is cleared to eat it might be worth stocking up on some treats.

 

I also agree with what Laura has said about being your Dad's voice. When I left the hospital I didn't ask any questions at all about what had happened to me - at that point I was just not mentally able to deal with it. I am still finding out things 6 months later - for example what type of shunt I have and what this means in terms of its maintenance. Keep questioning the nurses on his care and on things such as when he will be able to try walking if you are concerned about how long it is taking.  

 

I hope your mum is feeling better soon - I also remember family/friends avoiding me for weeks if they had any sign of infection for fear of passing it on!

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Strong Advocacy for care and strength in communication is so important when dealing with the care in the aftermath of brain injury as we, the patient, have difficulty in anything requiring short term memory, so that includes remembering to eat, drink so making sure everyone knows what is being said , what is needed and keeping consistent messages between family members is so important, keep a notebook by the bedside to write messages between visits and keep a diary, make sure the nurses know it's there and they can write in it .

Between my MIL ( a formidable ex director of nursing) , my mum, equally formidable , my best friend who is a radiographer and my husband , a friendly lion! I had a four pronged team who whilst fostering a very good relationship with all my care givers left no doubt in the expectation of care and quality for support whilst I was there. I owe them so much as even now I have little recollection of the very early weeks other than the stories I have been told. Be nice but be firm in what your Dad needs.

Plans for SAH recovery are a bit hit and miss to say the least so it is maybe a good idea to start talking about what is possible and what can happen to help Dad now. Impress on them how fit and healthy your dad was as their assumptions of what a 70 year old is likely to do may not match. I know my 74 yr old dad certainly defies most stereotypes , sounds like yours does too so tell them what he is like and what you expect from them to help him. Be realistic though, it's not a sprint but a plan to get him up maybe is a good place to start and if not then why not.

Get him out if you can, I agree with Laura. The first time I got wheeled out it was amazing, I used to beg anyone who came from that point to wheel me out, didn't give a hoot that I was in my pjs sat in a wheelchair in London square, I was out and it felt good. It was the key to me getting up on my feet as balance started to return. Well that and the fact I staged a bed sit out due to MRSA but that's another story! Topping up fluids and calories is so important too and yes like the others I had lots of mistaken memories / confabulation but it improves.

As a 'young' person I wasn't actually offered much help as given to older patients on ward and we had to fight for anything extra that might help me, the only real physical 'rehab' help after discharge was from Headway so you have other options too plus speak to your GP and find out what help is on offer for when Dad is discharged.

I think that often there is such an expectation and experience of poor outcomes that you can meet a jaded attitude of settling or being 'good enough' , we had to explain on more than one occasion that things needed stepping up a gear .... I guess if you want more done then don't be worried about ruffling feathers. If it was their Dad they would do the same. Keep pushing.

Hope mums throat is on the mend soon. Plenty of hot Honey and lemon drinks.

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Thanks so much. Very very helpful. I spoke very briefly with the physio yesterday and asked how the legs were doing. She said wobbly and that other muscles are working too hard so they have to work quite slowly with him. This made us all feel a bit down as dad is, as I previously said, a very upbeat, strong and determined gent.

Before the SAH he used to play golf five times a week, was the captain of the golf club, went to car boots every Sunday morning (up at 5:00am) and used to sell concrete garden products at the car boot sales - lots of heavy lifting. I am not quite sure that the physios get the same impression of dad. In their head he is a 70 year old older gentleman who is frail! Its very frustrating for all concerned. 

 

The fact is we just want him up and walking and not hoisted from place to place.

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I was hoisted on a ladder thing and held on for dear life,  sometimes I'd make it to the top other times I was wheeled out with botty sticking out  and plonked on the camode.  I lost all my dignity in those months.

 

You might not think Dad is getting better but he will and what caused me to sleep a lot was the catheter,  as I told Laura in June.

 

So make sure all is well with his catheter James as it can play havoc with the body.

 

I know I go on about this but it's so painful and makes you sleep and dream that things have happened.

 

If I can get 1 person to understand the pain we go through,  then I have done my job, good luck all xx

 

WinB143 xx xx

 

Also had the same as your Dad with OT's not being as understanding.  Sad really,  but keep shoulders up  and

chin also xx

 

Regards

Win xx

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Hi I am James's sister Kath, today has been a good day for Dad. We visited him and he appeared good today, having lots of sensible conversations about the golf club and what we had been up to. They have reduced the level of food via the NG tube and dad even commented on how he enjoyed his lunch of fish pie. We had been shopping for Dad as he had asked for certain things, mum made his corn beef hash with mashed carrot and swede which he ate well followed by a trifle and a high protein and calcium strawberry milk shake which was great to see.

 

We hope this eating continues which we will all encourage. The next stage we need to encourage is standing and walking which with strong pyhsio we hope dad will master which I am sure we will.

 

Thanks for all your above comments it really does help to hear from other SAH survivors I admire you all x

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Kath Hi,

 

Sounds like Dads doing well, food sounds so tasty you made me hungry.

 

Keep your spirits high xx and rest all of you, for when we get home we can be H.M. = High Maintenance as my hubby says. grrr  lol

 

Good luck to your Dad and All of you.

 

Love

 

WinB143 xx

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