Carer new to SAH

[Liz33]

Hi

 

My name is Liz.  My mum had an SAH on 17th January on her way home from work. 

 

She made it through surgery the next day and has continued to improve. 

 

She was desperate to be at home so she was discharged after 14 days in hospital. 

 

She has since not been able to sleep.mostly because of muscle pains in her legs where she has been bed ridden.   Does anyone else have experience of this?

 

I feel like she has been discharged and we have no one to ask for help.  Someone is supposed to come to the house to see if she needs anything adapted but so far not heard anything and not sure on what time scale that happens?

 

We are also struggling to get her to eat.  At this rate she will need to be re admitted.  If anyone has any words of wisdom or advice i would much appreciate it. 

 

We are currently having to give her 24 hour round the clock care which obviously as her family we dont mind but its a struggle when i have 3 children of my own too x

[Catwoman23]

I know we are not supposed to give med advice.  But check her medicine list. Was she given a new med such as for cholesterol?

 

It can give lots of cramps in some people. is she dehydrated. 

 

Were her potassium and magnesium needs rechecked. Did she have restless legs before?

 

I would follow up with primary care as well as neuro soon. I m not sure how old she is but i would make sure she doesn’t fall. 

 

Many people are afraid of words such as cancer but falls can also be scary since it can lead to fractures, immobility , bed sores , clots etc. Make sure she gets physical therapy if needed.

 

Make sure she drinks such things as boost, ensure etc. check and make sure she has no swallowing problems. Ask gp if she got a swallowing study. 

 

You will find that this is a very good website with lots of info. Please remember care takers also need a rest. Good luck to you.

[Chelle C]

Hi Liz, welcome to BTG

So sorry that your mum has suffered SAH, you have come to the right place for help and advice, as has already been stated we are not allowed to give medical advice as non of us are qualified to do So, what you will find here is a wealth of information from everyone's own personal experiences of SAH,

 

First of all the pain that your mum is experiencing in her legs could be coming from the blood dissipating down her spine, I had this problem and was told that was probably the cause of the pain, I'm not saying that is what is causing your mum's pain, this is just my own experience and what I was told by Neuro nurse, the hospital where your mum had her treatment should have one and if they have then maybe giving them a call would be a good idea, I was also told to make sure I was drinking plenty of water as staying well hydrated really does help with some of the affects of SAH.

 

As for your mum not eating, try giving her small amounts of food to see if she will be more tempted to eat, if she's not feeling like eating and a full plate of food is put infront of her it could put her off altogether, I also suffered with a nasty taste in my mouth after SAH, everything tasted horrible, I was told to try fresh pineapple as it is good for that sort of thing and it helped a lot.

 

I hope you find some of this helpful but as we always say, if you are really worried always seek advice and help from your mum's doctor or the hospital where she was looked after.

 

Liz, it is still very early in your mum's recovery, her body and brain have suffered trauma and they both need lots of time to recover,  just try and take things one day at a time.

It must be very hard for you, especially having 3 children of your own to look after, do you have other family members you can call on to help you out a little bit, as a carer you need to take care of yourself as well, try and give us some more information about your mum and we will try and advise you the best we can.

 

Wishing both you and your mum well as you start along the recovery road.

Love 

Michelle xx 

[Winb143]

I used to get cramps really bad and someone suggested Tonic Water,  but firstly take her to the Docs.

 

Ask him what' s going on with Mum.

 

I was in cuckoo land for an age /hydrocephalus and had helpers who came and washed me etc etc  to help family out !! 

 

Once I had shunt put in I didn't need them as much but get help to take some of the burden off you and Family xx

 

Hope Mum gets better soon xxxx and you get help xx

 

Winb143 ..Alias Win xxx

 

 

[ClareM]

Hi Liz

 

Welcome to BTG glad you found us and hope you are finding the site useful. It's full of useful advice and friendly members  

 

Some very wise words from Michelle. I too had leg pain and was told it was the blood dissipating down the spine. Hopefully it will pass in time as mine did, if not make a plan to speak to either a nurse specialist at the unit you were treated or your GP.

 

Mum really is in such early days, she just needs to rest and drink plenty of water. Hopefully she will start to regain her appetite soon. I lost half a stone and didn't eat much at all for some time. It's all back on again now though! Just let her eat little and often and try tempting her with things she really likes.

 

As Michelle says it must be really hard for you with 3 children, make sure you take some time for yourself. Get other members of the family to support mum, maybe draw up a rota. My kids took it in turns to spend a day with me to begin with but it wasn't long until I could be left with just regular phone checks. I was asleep half the time!

 

Hang on in there things will get better!

 

Clare xx

 

[subzero]

Hello Liz, and also a warm welcome to BTG.

 

So glad you found the site, You are definitely in the right place to help you get a better understanding of life after SA,H for both your mother and you and your family.

 

Unlike a fractured limb, or routine hospital operation, recovery after SAH is very much an unknown quantity at the outset.  Now that mum is home, over the next days, weeks and months you will be discovering how much damage has been caused to mum`s brain and how she is coping as her brain begins to compensate for the trauma.  Everyone`s bleed is unique as are the personal circumstances of their family lives. Perhaps you can let us know how your mum is affected. What are her mobility and cognitive abilities now.?  Is she confused with memory issues and has her personality changed in any way...?.)  Fatigue will figure prominently in the months ahead ..... let her enjoy her rest.

 

One thing is sure, your mum will need much support over several months to give her the best chance of recovery. This will be a very challenging time for both her and all of you who are wanting to do your best for her. As already said, it s so important that you try and organise her support so that all of you are not so stretched that your own lives and health begin to suffer too both emotionally and physically

 

As also mentioned, your approach to helping her eat well is a challenge.  You will be wanting her to eat well while she will often feel the opposite. Give her small helpings ..... I found making petite sandwiches with healthy fillings were a good way to start her stomach`s ability to digest food again.  Plenty water is also vital. 

 

In the days ahead, depending on how mobile she is, try and make her life as normal as possible.  Getting up, clothed and sitting is much better than lying in bed.  A short trip in the car to a nice spot she would enjoy.... these are ways to help her want to be positive in her recovery.

 

And again, I repeat what has been said earlier.... keep yourselves strong too by eating and resting well.  This is no a short journey.

 

We look forward to the many other questions you may have and hope you and your family can take the steps to ensure your mum has the best chance of improving and becoming as independent as possible.

 

 

Subs

[Liz33]

Thank you all so much for your responses.  The past 2 days have been difficult and today we did take mum to out of hours as she was complaining of severe pressure in her head.  

 

I understand you cannot give medical advice and myself and my husband are a nurse and paramedic between us so we understand some of what has happened but i wanted to hear some personal stories so thank you for those.  

 

Having never dealt with anyone going through this before i think we are all a bit shell shocked, firstly that it has happened at all and secondly that the recovery is going to be so lengthy.

 

Mum has been fairly lucky in tjat she hasnt been too affected...so it seems currently.  She has a bit of short term memory loss at the moment but remembers everything about her haemorrhage, the days before and after.  She has trouble finding the right words and her co-ordination is not as good ie trying to pick up her tablets is a bit of her struggle.  

 

She appears not to be eating as she cannot taste or smell anything amd what she can taste she says is salty.  

She has some deafness and tinnitus which she has a review for in April.

 

Unfortunately she was not a candiate for coiling and so had a craniotomy and a clip inserted.  Her wound is looking good but she does say it feels tight where the scar is.

 

Her mobility is only really being hamperes by these muscle aches and pains.  She cannot find a position in which she is comfortable and is therefore having very little sleep.  She is fighting the tiredness instead of just sleeping when she needs to.  

 

The main thing that has been affected is her personality.  Before mum was an extremely busy woman, on the go all the time and always doing everything for everyone else (despite us advising her otherwise)

Since the SAH she has become rude, she has no filter and says what she thinks.  Nothing we do is right for example her bean bags that we warm are too hot or cold, she will only take tablets with hot milk but thats never the right temperature, whatever food we offer shes says urgh no.  She is demanding and not really trying to help herself at all. 

 

I am one of her 4 daughters and we are all trying to split the load but being as i work from home and live just a few minutes away i feel more pressure to be there.plus i feel guilty when im not.  

I dont want to sound as though i am moaning! We are all trying to be supportive and sympathetic and so what we can.  I guess im frustrated that i cant make her do the things she needs to be doing.  Mum could be stubborn before so its hard to distinguish how much is her being stubbborn and how much is the affect of the SAH. 

 

Hope this answers some of the questions, sorry if i have missed any! Xx 

[Daffodil]

Hi Liz,

 

It sounds like mum is in good hands with all her daughters and paramedic son in law to boot. Share the load and don’t take anything personally , mums Brain Is busy healing, 

 

Post bleed back home is a very peculiar time. I discharged after 6 weeks in hospital and like most post SAH none of the family or I had  much idea of what to expect. My feeling of being at home with my kids   which was lovely was matched by a terror of all the horrid sensations that were being produced in my brain and body , not being able to do much at all and not really knowing what on Earth was going on or what the future held.  It was terribly hard for a while if I’m honest. Talking is important, see if GP can get a counsellor or see if mum would pop on here. Sharing the experience really helps those feelings. 

 

The lack of filter is not uncommon, I said things I would never have dreamed of and became very intolerant and impatient in the months post discharge. Then I would feel ashamed if I realisedi had been awful to a loved one, which I was on occassion but it was like I had no capacity for those social filters. That improved and I would say I’m now a more patient and tolerant person than I was pre bleed. 

 

No appetite, sense of taste, I lost a huge amount of weight post operations and so key was never to get hungry. I had snacks over the house, drank build up  meal replacement and also ate foods with lost of good brain food, eggs, avocados, nuts etc and make sure mum drinks lots , leave a flask out.

 

Sleeping, try her with a V pillow and slightly upright to see if that helps and make sure she keeps extremities warm, I got very cold very quickly. Also resting is just as important as sleeping so just taking time to be still and quiet. 

 

She is dealing with a lot in recovery, post clipping craniotomy operation, massive in anyone’s world but on top of that bleeding soaked across the surface of her brain  , it’s going to take time which everyone who has answer has said. 

 

Try to take each day as it c9mes. Keep a diary between you of the good, and the bad , and write something everyday, note what food is working for her. 

 

My ambition since that time has has been for steady days but it takes a while to get  there and each bleed is different. If you watch the channel 4 programme on catch up  ‘Can you rebuild my brain’ it may help you understand where mum is right now. http://www.channel4.com/programmes/can-you-rebuild-my-brain

 

Im sure others will offer more suggestions but to give you idea in the months after my discharge I couldn’t wash, shower or cook for myself, I could barely walk without falling and forgot everything. I was 39. Now six years on I still have mostly hidden deficits but I can walk, cook, care , drive, work and whilst my battery and energy is different I have regained a lot of skills and grown emotionally. 

[Winb143]

Liz

 

I do not remember my op/coiling I was in cuckoo land and really the shunt woke me up that I had put in a year after the coiling due to hydrocephalus, next day I sang to nurse !! ha ha.

 

My hubby jokes about having shunt taken out, I cuss more and some foods have lost their tastes, the water out of my tap is weird and a cuppa isn't as nice so I go to Costa quite a lot now days !! much to my hubby's dismay!! 

 

We can be awkward but honestly it isn't our fault, our brains have changed we are still here, so give Mum time and hopefully she will begin to understand we are so lucky to have our Family and be Loved.   Your Mum has been through it and so have her Family so I suggest you read .....          "A letter from your brain"  to Mum (when she's in the mood) or perhaps you read it and it will give you an inkling of what Mums been through.

 

We are hard work but you know that ha ha  Good luck to you and Mum and never give up on her you will look back at things she said and laugh together xxxx  I used to say to my Daughter "my treat Sa" as I used to think I was in a café. 

Love

Win xxxx

 

[Areajay]

Hi Liz, I’m so new to this new life of SAH. My mother had an SAH and a subdural haemorrhage a week ago. She is doing well but seems to have similar issues as your mum. She does not enjoy eating and food tastes salty. But she is drinking well so I make up fruit and yogurt smoothies with sustagen and protein powder. She really enjoys these. She is still in hospital but will move in with us and my husband will probably stop work to care for her as this works financially better for us. I really hope things settle for her and your family. It’s a long and winding road! X