JamesW

Thanks for this Laura. Jump is my sister. We are both really worried as dad still isn't walking! He is able to control both his legs but has pretty much been bed bound for the last 8 weeks and the past week he has been sitting in a chair. Dad is on a stroke rehab ward and not a neuro ward. The lack of walking is very worrying as we are unsure if he isn't walking because a loss of muscle mass or due to his SAH.

Brilliant to hear your dad is on a neuro rehab ward. We have been told that dad is 6th on the waiting list. He has been assessed as a 7 on the dependency scale and that those lower down the scale (assessed as being more independent) will be a higher priority. This was a bit of a kick in the teeth as it seems as though dad isn't seen as important. Any advice....

Hey all! Thanks for the responses. So - good news...the SALT team have been today and he is now on soft foods as part of a normal diet! Hurrah!!! He has had a digestive biscuit, three quarters of a banana and cauliflower cheese for dinner! Thank goodness. Mum also bought some small yoghurts and he has had one tonight during visiting. He has also been put on the waiting list to move onto the specialist neurological rehab ward rather than stroke rehab! Brilliant news. Bad news - he has a ****** cold now!!!!

Hi All, 

Just needing more help with dad. Dad is still on an NG feeding tube but has also been allowed to have a purified diet and normal liquids. The SALT team assessed him last week and he has been on a purified diet ever since. Over the weekend and on Monday he ate well. However, yesterday and today he has refused all food apart from a yoghurt. His NG feeding tube is giving him all the nutrients he needs but dad is just being stubborn dad and refusing to eat any of the purified food.

Yesterday he told us it looked disgusting and he was able to stand his fork in it and the fork didn't move!! In all honesty I don't blame him for not eating it. 

My sister and I had a serious talk to him and stressed the importance of eating otherwise his NG tube wouldn't come out and he would take a backward step in his rehab. He thinks we are nagging him. 

The problem is we would love to be able to take treats and nice things in for him but he isn't allowed anything at the moment. We just don't want this to be a sticking point in his recovery. 

Personally, I think dad would be able to manage a normal diet as his swallow is excellent. We just need to wait for the official sign off. 

The news that he refused to eat this morning has come as a bit of a blow. We had a positive day yesterday with a great report from occupational therapy. Dad even started writing his own log of visitors in a little book we have left by his bedside - he refused to write for the OT. 

We would offer to go in during meal times but I am not sure that will make much difference as dad has always been very stubborn and even more so after his SAH. 

Thanks

James

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.

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!

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

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