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Mum had a rebleed


luke
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My Mother had a grade 1 SAH last September but unfortunately her coiling wasn't completely effective & she had another bleed in April.

This time she she had a grade 5 along with Hydrocephalus & Vasospam as complications. The prognosis was not good, but being the tough woman she is,  she pulled through & has been on the mend in a neuro hospital. She's just come home in the last few weeks. 

As a family we have been through a lot the last year & the last few months in particular have been bad. When she awoke from her coma she didn't know who anyone was apart from my Father. She has got a lot better since she awoke but has periods of confabulation where her brain feeds her information that isn't true. In general though she has improved to a point I never thought would be possible & I would say she is pretty much herself.

She is however extremely tired all the time, much, much more so than last time. I am trying to give her somewhat of a resemblance of a routine, however she isn't very motivated. She barely wants to get out of bed or even wash or change her clothing due to the extreme tiredness combined with a now short memory.

I'm being as supportive as I can doing everything for her, but at the same time I am trying to encourage her to do small things in a hope to build her confidence & stamina. Being it is early days, especially considering the severity this time, I don't know how much I really should be pushing her. As people who have been through the wars do you have any words of advice?

Thank you.

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Hi Luke

 

So sorry to hear about your mum.  

 

There are many complications after a SAH and symptoms and recovery vary from person to person.

 

All you can really do at this moment in time is stay positive, be there for her and talk to her.  I know it doesn't sound a lot but it will help her. she'll know people who love and care for her are around. Try to make sure she is drinking plenty of water throughout the day too as this helps the brain to function better.

 

Tiredness is to be expected, it took me a year or so to stop needing to sleep during the day.  I also fell asleep mid way through conversations with people and couldn't remember them being there at all when they told me about it. The brain never completely rests so the sleeping a lot is to be expected.

 

Stamina and confidence will come with time - those are two things that cannot be forced or rushed I'm afraid. Any rational thoughts she may have will be tinged with fear and confusion at what has happened.  Reassurance will help but also understanding that, at the moment, she can't do all she could and probably won't feel like doing so.  Its a lot to process first time round so I can't imagine what its like second time around.

 

Please keep us updated and I wish your mum a good recovery and you and your family all the strength you'll need.

 

Take care

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Thanks for the advice.

I have been bringing her a small glass of water pretty much on the hour & trying to aim for a couple liters of fluid in a day. She has sickness regularly & will spontaneously throw up especially if she has a full stomach, so spreading the water over a long period seems to work better for her.


Just trying to encourage her a bit to look after herself a bit more. She has been in the same pajamas for a while now & hasn't really washed that much which can't be too comfortable.


 

 

 

 

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Is there a district nurse or carer of any sort coming in to see her?  It may be something you can arrange through your GP.  She may feel a little embarrassed you being around if she can't wash and dress herself at the mo - don't mean to pry or anything, but it might be worth asking for help.  

 

How's your Dad coping, could he maybe help her to wash and dress??

Water little and often is good and 2 litres is fine.

 

Take care of yourself too.  

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She doesn't need any nurse or anything like that. She can wash & dress herself on her own, its just more like she isn't really motivated to do so. I think its a combination of forgetting to do so, lack of energy & confabulation. She will be in the same pair of pajamas for a while & not be motivated to get out of them.

 

Her mind is also playing tricks on her so I will say, "why don't you have a shower today & get into a fresh pair of clothes", & for example, she  will say she had one earlier & these are new from the shops or another combination of events that aren't true. It isn't that she is purposely lying, its just confabulation is one of the symptoms of her particular injury.

Me and my Dad support her in different ways. She responds better to me when I try to help by telling her to do things. With my Dad she can get annoyed, as before the illness she was always the one to be more organised & help him with various things. He's disabled himself & she cared for him for a period while he wasn't independent.

 

I think she also has trouble accepting what's happened to her & gets upset when my Dad tries to help her with things that were her strong points previously.

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Hi Luke

I'm sorry Mum has had a second bleed and has what appears to be significant problems with her memory. I am surprised that you don't have any outside help coming in, infact i'm rather shocked.

 

Have you spoken to the GP about getting help? I know you said that mum can do a lot herself but reading your postings it seems your maybe frustrated at the appeared lack of progress. My partner had a class five bleed eight years ago and after such a long time is now getting the help she needs.

You don't say where you are in the country but I would have thought the hospital would have put in place some form of rehab for mum.

 

As for mum throwing up, causes me some concern, has Mum been seen by a speech therapist  because there could be a risk to Mum for aspirational pneumonia which is not good.

If you can contact the surgeon who looked after Mum and the gp to get you some support and help to look after Mum.

 

Its nice to look after Mum but you need to take a step backwards take time for yourself and make sure Dad is not overdoing it. I know because I've been in your situation and it nearly killed me.  

I think Mum needs to see a clinical neuro psychologist to help Mum come to terms with what has happened to her again through the surgeon at the hospital.

 

You can send me a private message if you wish but I am concerned about your situation,  take care and regards to your Mum.

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Hello Luke.............welcome and thanks for getting in touch with BTG following your mother`s second bleed.

 

It must be so challenging and demanding for you and your dad to have supported mother since September and then be faced with another devastating blow.

You say that your mother was a very strong person and since her second bleed in April, it will be very difficult to know exactly what damage has been done to her already traumatised brain, and what the after effects will be.

 

You also mention that she can get really frustrated at your dad as he tries to help her. During the early weeks of my wife`s SAH in May 2011...I found that her ability to control her patience had been affected and she showed out of character frustration with me too. This can be quite hurtful and difficult to accept and it is important that you and dad are not deflated by some of the things she might say and do.

 

Don`t take these comments personally as in many cases post SAH, a degree of irritability is a common factor. Please be patient with your mother as she does not mean to hurt your feelings...she is just struggling to cope with her brain injury caused by the bleed.  You may have to deal with this for some time and as time passes, all three of you may find ways of coping with this personality change.

 

In our case, time has helped ease this...and when under pressure and my wife lets her control slip.. we now can laugh and `jokingly`  blame it on the SAH.

You do say that she is now very much herself...apart from the tiredness. 

 

My wife was often sick in the early days of her SAH. Often I was concerned that she might not be getting the benefit of her medications.  We found that eating smaller portions was a great help. I would make up very small sandwiches and some crisps on a saucer rather than a big plate.... it looked better that way. Also.....definitely be very choosy about the type of food she eats so that her stomach can get used to processing food again.

 

For personal hygiene, because my wife was so weak...I bought a bath bench which could be placed across our bath. This enabled her to sit while she showered....and gave her a degree of independence.

 

Please keep in touch often and you will get much help as you and Dad cope with mother`s recovery...

 

Make sure you and Dad are well fed and rested.  Also share your feelings together about Mother`s progress and your own concerns.

 

 

Subs

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Hey Luke, some great advice from Paul and hopefully some things you can apply to help mum now she's back home again.

 

i had a grade 4 and also with hydrocephalus and after discharge I needed help for sure. Bathing was beyond me and I had to have a seat in the shower and had rota of friends who used to come and babysit me and help with that and to be honest the first months of being home a huge achievement was taking a shower or getting dressed. It sounds like she does need more of a helping hand, any female friends who could talk to her? 

 

can I suggest to mum that she keeps a diary and sets herself a couple of tiny goals each day, yes I did use to include get dressed, get showered and then also at the end of the day before I slept write what was good about that day and add any extra achievements. It's easy to be despondent at all the independence you lose and that needs some work in itself to remind yourself that you are progressing. 

 

Food is is really important, plenty of energy inducing foods and regular drinks. The sickness probably needs to be checked out as if she has a shunt that can be a sign that things are not as they should be as can confabulation , if she hasn't got a shunt then I would definitely have it looked at as she had hydrocephalus post bleed.

 

The encouragement , love and attention you are giving her sounds just right but remember you can call her treating team as well if you are worried about her health or wellbeing, I'm hoping you have a neuro nurse you can contact but if not phone the Brain and Spine Foundation and speak to their neuro nurses. http://www.brainandspine.org.uk they also have some great fact sheets as do Headway 

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Hi there

 

Like Daff says as ever great advice from Paul.:thumbsup:

 

My thoughts are maybe you should speak with the GP about getting some help (for now) maybe a nurse/carer coming in to help her would be the motivation she needs and I read it as 'she can wash and dress herself on her own' but at the min can she? the more she's in bed the less she will.

 

I so understand your concerns and frustration about it, its a huge thing you've ALL been through but at the min your Mum is trying to analise it so I really do think you need to contract the GP and the neuro too like Paul's advice...

 

sending you, & your Mum and Dad my very best wishes... and please take care of yourself too...

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On 9/13/2016 at 21:31, paul99 said:

I'm sorry Mum has had a second bleed and has what appears to be significant problems with her memory. I am surprised that you don't have any outside help coming in, infact i'm rather shocked.


She has just been discharged from a rehab neuro hospital after a long stay. She was helped with various things while being there & when they felt she was ready we had her come home. Her memory is severely impaired to the point where she doesn't remember what happened 20 minutes ago, especially for mundane things. However we have seen improvements each & every week in that regard so here's hoping it continues.

 

To be honest we don't need help. I can cook, clean & take on any household task & can do any DIY so that isn't a problem. For me it's just about helping her the best way I can without taking too much of the burden so she becomes too reliant. In hospital she was in a new pair or clothes each day & was doing more than she is at home, so I don't want her to slip back.

 

On 9/13/2016 at 21:31, paul99 said:

As for mum throwing up, causes me some concern, has Mum been seen by a speech therapist  because there could be a risk to Mum for aspirational pneumonia which is not good.

If you can contact the surgeon who looked after Mum and the gp to get you some support and help to look after Mum.


She has been regularly sick since she had the bleed. We asked the hospital if it was anything sinister & they said that they had looked into it. They concluded as she has damage to the part of the brain than controls balance that the sickness was a form of motion sickness. It almost always happens in the morning when she sits up or if she stands or walks after a period of sitting down. They have just given us sickness tablets to combat it.

 

On 9/13/2016 at 21:31, paul99 said:

You can send me a private message if you wish but I am concerned about your situation,  take care and regards to your Mum.


Thanks.

 

On 9/13/2016 at 21:48, subzero said:

Don`t take these comments personally as in many cases post SAH, a degree of irritability is a common factor. Please be patient with your mother as she does not mean to hurt your feelings...she is just struggling to cope with her brain injury caused by the bleed. 

 

You may have to deal with this for some time and as time passes, all three of you may find ways of coping with this personality change. In our case, time has helped ease this...and when under pressure and my wife lets her control slip.. we now can laugh and `jokingly`  blame it on the SAH.

 

Me & my Dad don't take anything personally. To be fair she doesn't hardly snap or get annoyed this time around. Her first bleed she went through a period of being really quite irritable, especially with my Dad. This time she isn't as easily irritated. We also learnt from the first time & I'm better with talking to her compared to my Dad. So knowing this he will get me to talk to her about something as she seems to take it on board with me without getting annoyed. 
 

On 9/13/2016 at 21:48, subzero said:

For personal hygiene, because my wife was so weak...I bought a bath bench which could be placed across our bath. This enabled her to sit while she showered....and gave her a degree of independence.


The hospital was kind enough to get us one of those, however our bath is the wrong shape & the shower won't reach the other side. Thanks for reminding me though as I'll go get a longer shower cord so it can stretch across.

 

22 hours ago, Daffodil said:

 It sounds like she does need more of a helping hand, any female friends who could talk to her? 


Her Sister lives down the road & helps her with various things. She is coming over this week to help dye her hair for her so she has the support if she needs it.

 

22 hours ago, Daffodil said:

can I suggest to mum that she keeps a diary and sets herself a couple of tiny goals each day, yes I did use to include get dressed, get showered and then also at the end of the day before I slept write what was good about that day and add any extra achievements. It's easy to be despondent at all the independence you lose and that needs some work in itself to remind yourself that you are progressing.

 

This was something she was doing regularly at hospital. Since coming back she hasn't been doing it. To be honest that is on me, I should be encouraging her to continue which I'll do so from now on & set a time each day to sit down with her.

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Thanks for all the advice everyone.

I'm curious does anyone have any experience with smart watches? Her memory is poor & previously we set her alarms on her phone. Problem is she would never take it with her if she left a room. I have noticed though she will wear her watch everyday. So I'm thinking a smart watch will be a good fit to help her with reminders. Wondering if anyone has used one before or has any recommendations?

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Hi Luke,

I had a grade 4 in 2009 and I slept a lot, and also was sick after my Family gave me too much food also.

 

Does Mum have a catheter in ? I ask this as it made me so ill and tired.

 

In the end my Doctor took it out and after having a shunt fitted for hydrocephalus I came around.

 

I thought my Dad was still alive and he died in 1999 !!  Get help for Mum ie washing and take her out for a coffee or something.

Give her something to look forward to as I know it is hard on our loved ones but it is hard on us also .

 

My Family sang to me and talked with me, I thought I was dying and my Daughter found this site and it has been a God send to me,

knowing I'm not alone and the only one.

 

Good luck to You Mum and Dad xxxx

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Luke. I went along to a group at my hospital some time after my SAH and we discussed smart watches and other prompts. It may sound silly but we all shared the view that the prompt itself works to get your attention , it's just that you then can instantly forget that prompt so you have to work on filing the memory better in the first place.

 

I still often forget to take my phone somewhere or get a reminder only to then completely forget I got it. My family are my best reminders these days and know that they need to put something in front of me and make sure they have my full attention when telling or asking me something.

 

i would suggest a time which is regular each day where you sit down and slowly go over what you want to remember for that day, get her to write it down in a planner, or on a device, that way it help her build and file that memory properly, then adding a smart watch into that as a reminder may work really well. Let us know if you try. ?

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19 hours ago, Daffodil said:

Luke. I went along to a group at my hospital some time after my SAH and we discussed smart watches and other prompts. It may sound silly but we all shared the view that the prompt itself works to get your attention , it's just that you then can instantly forget that prompt so you have to work on filing the memory better in the first place.

 

I still often forget to take my phone somewhere or get a reminder only to then completely forget I got it. My family are my best reminders these days and know that they need to put something in front of me and make sure they have my full attention when telling or asking me something.

 

i would suggest a time which is regular each day where you sit down and slowly go over what you want to remember for that day, get her to write it down in a planner, or on a device, that way it help her build and file that memory properly, then adding a smart watch into that as a reminder may work really well. Let us know if you try. ?


Yeah that makes sense. It was similar to when we had alarms on her phone in the hospital. The alarm would go off then she would just switch it off intending to get up in a few minutes. Then the time would pass & she would have forgot about it.

OK then well I have just ordered The Memory Book by Tony Buzan. I would like to work on my own memory so may be I can find a system or something that might help her in the filing information department.

Will set aside a 30 mins in the evening to go over things during the day, record them & set some small goals for the next.

Thanks Daffodil

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Luke, I must admit, that even though I'm pretty savvy with phones and internet etc that I do prefer the "written word" with pen and paper ... I use a conventional A5 diary and post-it notes ... it has to be more visual for me and something that I can't ignore or switch off. I leave it in the kitchen and where I can see it.

 

Even, when I'm writing a list for food shopping, I often leave the empty packets or goods in front of me .... yesterday I had a tub of empty Bisto ... jar of chilli powder and a can of deodorant ... I then write those onto a shopping list, before I re-cycle them.

 

I'm still thinking of getting a chalk or white board to be honest, as I still need things to be visual, in order to remember them. x

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7 hours ago, Karen said:

I'm still thinking of getting a chalk or white board to be honest, as I still need things to be visual, in order to remember them. x


Before she got back from hospital we got one of those roll on chalk boards for the kitchen. Me & my Dad are using it at the moment with the hope that when she gets a bit more energy & routine she can use it as well.

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Visual reminders are best for me too. Like Karen I leave stuff on the kitchen side to remind me. Unfortunately I have a tidy freak husband who keeps putting things away. He's getting better but I do have to tell him - leave it there it's to remind me! Yesterday I put my sock on and then spent 5 mins looking for the other one only to find it on my foot. It's funny how the short term memory is so short sometimes. 

 

Mum is lucky to have such a caring son around. Keep up the good work I am sure she appreciates it. 

 

Clare xx

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Yep have to agree visual reminders work for me too - white board would be the best....

 

And I also agree with an alarm you switch it off and mins later its forgotten..

 

I hope you took the advice from yesterday about maybe looking into getting your Mum help for washing and dressing just for now get her into a routine....

 

 

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My Hubby put up our address as I thought I still lived in my old house I moved from in 1994/5 .  So Every morning as he left for work he'd cover our address up, he'd pinned on the wall and ask me "Where do we live Win?...Every day he'd do this xxx

 

I'd look up at the wall and try and remember what addy was there.  Eventually I remembered it.

 

He was so kind and patient with me.   Hope Mum gets well soon and starts remembering. 

 

Wish your Mum Well xxxxxx

 

 

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