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Looking for some advice to support my Dad


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Hi all, I just wanted to start with saying how glad I am that I have found this forum and that this is my first post after reading through a lot of the topics which have been really helpful.

I should probably start with a bit of background. 3 and a half weeks ago my Dad collapsed at home following an SAH and within hours had the complication of Hydrocephalus; 18 hours later and 3 different hospitals Dad had a EVD fitted and a coiling procedure. Within a week the drain had 'blocked' and it was removed. He has since had 3 lumbar punctures and it has been 10 days since his last one.  He has also had issues with regulating his sodium and has twice dropped to a very low level, they are now managing this with slow-release sodium tablets. 

At the moment he is currently still in hospital in a medium-care neuro ward. After speaking with the nurse yesterday he is no longer having BP/heart rate obs etc and is not receiving any PT as he is able to walk/move limbs and no speech therapy as he is talking clearly and grammatically.

 

The most obvious problem for Dad now is that he is having difficulty with his memory in a number of ways. A lot of old memories have been brought to the fore; he is having trouble with new memories in that some are not 'sticking' and others would never have happened (like driving to the hospital that morning or going to one of the other patient's house) and could be considered 'fairytale'. 

 

We (Me and Mam) visit him for 3 hours a day and have been talking through where he is and what has happened; which seems to be 'sticking' a lot more in the last few days. We also talk through why the 'fairytale' stuff could not have happened.

 

So these are the main areas that I could really do with some help and guidance as I can't really find anything much on the internet.

 

1. What should we be expecting/asking for from the hospital (we are in the UK) and what should they be doing for Dad

2. What can we do to help him recover, feel happy and make sense of everything that has happened.

3. What helped you the most in your recovery?

 

I'm sorry for the really long post, its the first time I've written all this down. I would be so grateful for any personal experiences or websites that you could direct me to.

Thanks,

 

Laura

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Hi Laura and welcome.

 

So sorry to hear about your Dad and re: 

 

 

We also talk through why the 'fairytale' stuff could not have happened.

 

There is a condition called Confabulation which can be a symptom of brain trauma and you may already be aware of it .... if not have a look at http://en.wikipedia.org/wiki/Confabulationand it may explain the reason as to why your Dad is suffering a little confusion at the minute with memory recall. If the nursing staff aren't already aware of this, it might be worth having a chat with them about it. I'd never heard of the condition until one of our members spoke of it quite a few years ago and her Husband was displaying the same problems.

 

xx

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Hey Laura

Welcome to the forum and whilst sorry to hear about your dads experiences it sounds as if he got some prompt care and attention which is crucial. Glad he's doing ok but a scary time for you all.

I presented post my bleed with hydrocephalus and similarly to your Dad had an EVD placed and subsequently lost count of the LPs I had so I'll share what has helped me since then.

We can't comment on anything medical I just suggest that if you notice anything is deteriorating increasingly health or memory wise then ask for help and checks on it, don't accept it.

The SAH bleed is often different in it's affects to those in ischemic strokes in that the impact to our memories and general cognitive state is more spread than you might expect. Many of us struggle to 'file' any new memories so it helped me to have family writing anything down I need us to recall and put it in full view. Even now it's different to how I used to recall and remember.

If he can write I suggest a diary for him, it helps with those memories, I used to write what I did everyday so I could tell people and also to capture what was good that day, this celebration of achievement can help as mood and reality collide and you struggle to accept the changes in the brain and how you previously lived life but it shows improvement over time.

You can help by encouraging him in all his progress but giving him time to heal, getting him to rest regularly will help. Don't over stimulate in the early days or highlight his lost memories just come up with tips to help him trap and learn new ways of keeping them. Headway are good once he gets out if he is not doing any rehab.

Main thing is just reassure and encourage which I'm sure you are doing already, he will be scared of what all thus means and what happens now but dads tend not to show fear!! but if he has a trusted friend encourage him to open up a little and talk about it and maybe bring in a tablet and show him this site when he's ready, Sure more members will be along to offer more suggestions

Good luck

oh and I found sleeping propped up a bit more comfortable post the head op as well.

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Hi Laura

 

Welcome glad you found the site.

 

Its really hard (as a person that has had a SAH) to understand what's happened to you.  You (that is me) think that things that have happened are quite vivid and I was right about things that I thought.  Its the brain playing tricks or the part of the brain that has been damaged.

 

The one thing I've learned is that YOU know your Dad the hospital drs & staff don't so anything concerning you don't keep it to yourself tell them - hopefully there will be nothing to worry about..

 

I have no memories of my past and find it hard to remember things as they happen but you learn to adapt...

 

just be there for your Dad and remember this all takes a great deal of time.

 

take care and wishing you all the best.

 

Don't bombard him with conversation over the 3hours.

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hi laura

             im sorry to hear about dad but as a few have already said he is in the best place.

it is very early days yet you will get ups and downs the best advice is to let dad set the pace I have kept a diary for my partner in the hope one day things will improve so a diary would be a good idea I left mine on the bedside so that anyone who looked after my partner and visitors could put things in for a future date so dad can refresh his memory when he goes home.

 

confusion is common believe me  one thing possible is to put together a photo album with pictures from the past and new ones to let him at his own pace recovery some earlier memories DONT  push him  but encourage him if he tries to do anything hopefully things will continue to improve but be prepared for the odd step backwards now and then 

 

wishing you all well and that dad goes home soon best wishes   

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Hi all, thank you so much for all your speedy replies! the visiting is usually 1 - 1.5 hours and then 1 hour later on in the evening. we can see that Dad gets more confused as he gets tired but tries to chat to us a lot (we are very close as a family and talk/share a lot) and tries not to sleep so we now 'tuck him in' and say that we are leaving him to get some rest and will be back later. the way we are phrasing it is that if he had hurt his leg he wouldn't be doing a lot of exercise and would be resting, so the same applies for his brain.

we actually wheeled Dad outside today as he has been saying he was feeling a bit cooped up and he really enjoyed it. we just sat on the bench, ate some cake and looked at the ducks. he was joking that he looked like a celeb as we made him wear hat, scarf and sunglasses to make sure he didn't get sunburn! he's a very active/outdoors man and the nurses have been telling us that he strolls up and down the ward a lot.

thank you for the stuff about confabulation Karen, it answers a lot of the questions we had as Dad would be gently adamant (he's a very gentle man) that it had happened, but we knew it couldn't have.

 

Louise, you are so right about us knowing Dad the best. there was one day when he was much more confused than any of the days for about a week before and when we pressed it turns out is salts had dropped incredibly low.

 

thank you all, learning about your experiences and having your advice really does mean so much!x

 

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Daffodil, I also meant to thank you for the diary suggestion. Dad is a big reader/in to his books, so I think it would help him to write it down. we ourselves have been keeping a diary of his treatment to help ourselves remember and for Dad should he ever want to look at it.x

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Hi Laura,

 

This site helped my Daughter when I was in cuckoo land,  I had Ventriculitis, Sepsis, Hydrocephalus after my SAH.

 

They said I wouldn't walk and have they/Hubby and Daughter thought of putting me in a home!!

My husband said to forget it and he would take me home, phew !!  100 feet sometimes yards I can walk.

 

At this moment your Dad needs you, but if I can get through this so can Dad xx

Sing to him, talk about things you would normally talk about, if he falls asleep don't worry, our brains are mending.

 

Show him photos of people he might recognise,

I thought I lived  at my house I moved from 10 years ago and my hubby stuck our address on the wall lol.

 

Keep Happy and get rest also for when we get better you will have your work cut out.

Good Luck to you All xx Never give up xx

WinB143 xx Has Dad got a catheter in ? I ask this as my catheter was causing me problems and making me sleep.

 

WinB143 xx xx

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Hi Laura,

 

Welcome to BTG.  I had the problems you describe for your Dad.  My lumbar puncture worked on the third go.  I had developed hydrocephalus and a shunt would have been fitted if the lumbar puncture hadn't worked.

 

This is very early days for your Dad and I had little or no short term memory at the beginning.  Over time some of it came back as I think the brain has some almost miraculous way of re-routing.  However, I was re-taught the simplest tasks ie how to make a piece of toast, to hold a knife and fork, what to do with a spoon, how to put my slippers on etc. I didn't know who the visitors round my hospital bed were. So, I was right back to very basic levels

 

Over time my short term memory returned to some degree although four and a half years on I still have trouble retaining information unless it is repeated to me several times.

 

So encourage the keeping of a diary, when you speak to your Dad, repeat some things to him a couple of times but ten or fifteen minutes apart, and then the next day, so that eventually, the short-term memories become long term memories that will embed in his brain.

 

I am sure the hospital are doing everything medically that can be done.  Where we fit in, on this group, is in the long term social after-care that isn't present within the NHS.  So we support each other, knowing that the empathy is real because we've all 'been there.'

 

This is what my family did with me and it worked to a large degree - not with everything but with most things.

 

It is more than likely that some of his memory will return, but no-one can say for sure, but it is a long wait for it to happen.  His brain has been injured and like all injuries, it takes time to heal, and every individual is different.

 

So be patient, encourage, repeat things sometimes, write things down, get him to do things for himself where possible.  Memories seem to stick more if you do things for yourself rather than have someone telling you things.  Remember also that this ability to concentrate will have been considerably shortened, so small steps, manageable chunks.  Don't expect too much of him too soon.

 

Sometimes families put too much pressure on too soon because they want to see their loved one - back to normal - and although he may look the same, he isn't the same.  It's now a question of how much he can get back over time.  Remember, too, that this will be a frustrating and upsetting time for him and that he will require all the love you can give him, as he has unconditionally given you all of your life.

 

The saying 'time is a healer' is so true in SAH cases, but embrace the positives and minimise the negatives - he is still your Dad!

 

Good luck,

 

Macca

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I think you keeping a diary of you Dad's progress is a great idea both for you and him when he's much more wanting to know what's happened to him (for me its a massive empty void) so good one..

 

take care and find time for yourselves its very tiring and very stressful time so have a Time out.

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Hello Laura

 

So sorry to hear about your dad- and so glad that you have found this site where you will get so much support from people who have first hand experience in either recovering or helping a partner recover from an SAH.

 

Actually Louise has said exactly what I was going to add as a way of support-

 

` find time for yourselves its very tiring and very stressful time so have a Time out`

 

Four years ago my wife had her SAH and I know in so many ways what you and your mum are going through just now-

 

So just to stress Louise`s comments

 

Do take time out for yourselves- if you are visiting every day- take a day to yourself-

 

Do find a good friend that you can talk to in addition to your mum- and just sit and share your feelings with them- have a cry on their shoulder if you need to.

 

Try and get a good sleep at night

 

Eat regularly and `properly`  (not always fast foods)- you need to keep your body nourished

 

Exercise a little each day- go for a long walk to clear your own mind-

 

There is so much information on BTG- try and look for situations which you feel are of help and always post questions when you want to.

 

Your dad has suffered a life changing event- and this takes time for him and yourselves to come to terms with- he will gradually improve but his progress will have its ups and downs for all three of you-

 

Keep strong and give mum our regards- and we look forward to learning more of his progress when you can

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Hello Laura,

 

How great that you are your Dad's eyes and ears at this challenging time!  As has been stated, none of us can hand out medical advice, but only share our own experiences.  I think if you read a number of the past posts, you'll find experiences vary with the type of bleed, location of bleed, extent of complications, etc.

 

But one of the things I have seen time and again is the lament over loss of ability to remember.  For me, it is more the recent things; I can remember any number of ridiculous incidents or facts from pre-SAH but struggle at times to remember what I did at work last week.  It has improved with time and the difficulty is definitely more pronounced when I am tired.

 

I do remember having the lumbar puncture when I was in the hospital following the SAH, to help pull blood off my brain and relieve the head-ache.  It was explained that the blood has nowhere to go, just has to break down like you will see with a bruise, and the brain does not like the irritation that causes.  It takes a goodly amount of time for all the blood to break down, so head-aches can last for awhile.  I could not read at all during that period.

 

I did not have the confabulation problem, but one night, following an angiogram, I repeatedly asked my husband and sister why I was in the hospital.  Mind, I had been there over a week and was clearly aware of all that had occurred up to that time.  Neurologists explained the phenomenon was not uncommon and thankfully it passed.

 

It's been over 6 years since my SAH but I love this site because I can come on, read others' concerns and challenges and think, yeah, I'm not crazy.  I also have an excellent neurologist helping me deal with some of the lingering after-effects.  As long as your Dad is in the hospital, he likely is surrounded by doctors every day, but when he gets out he may want to continue to consult with a neurologist.  As mine has explained to me, SAH causes a part of the brain to die and even those of us who seem quite intact afterwards are not getting off free.

 

There may be anxiety, sadness, weird sensations, extreme fatigue, frustration, difficulty focusing and learning.  I have felt like I developed a case of attention deficit disorder.  Best to keep reminding yourselves how blessed you are that Dad is one of the very lucky ones of us, still breathing and walking and talking.  Just encourage him to rest, eat well, and take things slowly.

 

Best wishes and God bless, Colleen

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Its been 4 weeks this evening and it is such a strange feeling; its hard to put in to words, thankful, hopeful and cautious all at the same time!

 

Colleen, thank you so much for your kind words. We are so thankful that he is with us and know just how lucky we all are! He can walk, talk, feed himself, has his witty humour and all the same mannerisms. He has lost a lot of weight over the last few weeks but thankfully after all the cake and yoghurt and treats we have taken him he has put some back on.

 

He has been saying a lot over the last few days how he's ready to come out now, we know that it will be a while but I think its more that he's ready for some peace and quiet as the ward is on is very busy! He asked for his phone so we have taken him one in that has just our numbers on and he just phoned my mum for a chat, which was wonderful to hear!

 

Daffodil, when Dad was frustrated yesterday I told him about this website and it seemed to encourage him a lot. As you say Colleen it made him realise that these things were to be expected and not to worry. He has in the last few days started questioning if things were dreams or had they happened.

 

Macca, thank you for the advice about remembering more when you are doing things; we have taken a few trips outside and the fresh air/change of scenery seems to have benefited him greatly.

 

Subzero, Louise, thank you for your concern for us. We are both lucky to have very supportive family and friends who we have to actively discourage from doing everything for us! I may 'bank' some of the house cleaning offers for a later date however! Mam is living with me and my husband who makes sure that we eat well too!

 

Thank you all for your advice and support, it really is a help. I keep it in mind when we are with Dad and try to make sure that we don't get carried away in the length of our chats and making sure Dad knows that we are happy just sitting there quietly. Maybe an odd question, but were there any phrases or ways people spoke to you that you found/still find jarring? As with any scenario I am sure there are a number of stock phrases that people use that are irritating to the person in said situation...

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Laura,

You are welcome!

What I found annoying was people talking about me as if I wasn't there eg 'Is he ok?, can he talk?, can he get out of bed?

For good ness sake just ask me!!! was how I thought at the time.

The truth is, I didn't know the answer to some of those questions at the time, but I found it irritating when those things were said within earshot! It made me feel like an imbecile and I wanted to shout out that I wasn't one!

If you are going to talk about your Dad, do it in another room or involve him in the conversation if you are in the same room. That would be my advice.

Good luck,

Macca

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Laura, those visits out of ward into fresh air are wonderful , I will always remember my first 'push out' when everything seemed so fresh and new even in the grime of London! Your Dad will be revelling in that.

Great to hear some things are helping you all and also you have banked some help, people like to do practical things to help so that's good.

I just liked to hear about other peoples day and what they were doing and anything funny, I hated it when people asked me in general how I was as I could never answer, it helped me with them being specific like, 'how's the hole in head feeling' ' do the cannulas feel alright today' as it worked a lot better for me and I could be honest if something wasn't ok but then that's also probably my and my family's style and humour, my sister told me the hole was where they added extra hamsters to help the brain work....yep bit odd in my house!!

The questions that the nurses have to ask for neuro checks got on my nerves and I actually cheated as kept getting the prime minister wrong so I got a friend to write it down so I could get it right, the nurses all knew but I think because it showed a different initiative I was allowed to keep my cheat sheet...you have to find things to laugh at.

Oh and sometimes it's very hard to follow multiple conversations, even now if lots of people talk at once I can't follow it so when there is lots of noise like in ward I used to zone out , don't take it personally it's just the brain being economical I think with energy

Hope it's a good weekend for you all

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Laura, you're doing great with asking all of the right questions! 

 

Some of my stuff that I experienced in hospital and post SAH early weeks: 

 

I enjoyed listening, rather than talking .... I also discovered a love of Radio 4 and just listening to plays and the Archer's! It helped me to relax and because of sight problems and not being able to look at visual stuff, it kind of kept my brain occupied without the stress. 

 

Post hospital - I really didn't like being left on my own....it takes a while to re-build confidence.

 

Not too many visitors at one time - as it's too tiring and over whelming. I used to nod off!

 

I didn't find any phrases jarring, as knew that everybody meant well....but sometimes just holding hands is okay and a comfort ...don't over think the situation and do what comes naturally. I'm sure that your Dad will let you know if you're getting on his nerves!

 

xx

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  • 2 weeks later...

Hi all, sorry for the radio silence, its been a whirlwind few weeks! Dad is now at home with us and is awaiting cognitive therapy, unfortunately it looks like its going to be another 3-4weeks before he gets it and he has been 'medically stable' for 2 already. I don't think his neurospecialist nurse is happy that he was discharged but that's a battle with all the different healthboards!

I also know we can't talk about that stuff here...but he seems a lot happier and more settled at home. He was originally listed for inpatient but now is on outpatient so that he could be seen quicker, for the life of us we (Me, Mam and Dad having the conversation about it) don't know which option is best. Does anyone know of any sources of stuff that he could do that may help him cognitively? It just seems like such a long time for him not to be having any guidance or support.

What I did want to ask is did anyone notice a big increase in their appetite post SAH? We are a family who eat 'proper' meals (meat, veg etc) but I have noticed that Dad seems to be always hungry at the moment and seems to be going through half a loaf of bread a day!  He is also getting midnight munchies quite a lot too! :)

I have also realised that there is a section for carers, my apologies that I posted here, its only now things are a little calmer I have had a good look at all the different sections/groups. Thank you all for being so kind and informative.x

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If you are really concerned about your dad's increased appetite have a talk to your GP.

It could be that something has happened to his "appetite sensor" and may correct itself in time.

Did your dad lose a lot of weight whilst in hospital? If so it could be his body's way of telling him to put it back on.

 

I lost 1 1/2 stone whilst in hospital but I can't remember eating like a horse when I got home, my taste was affected so lived on smoked fish and salad or mushrooms on toast as everything else tasted foul. Eventually I reached the weight I was pre SAH and have remained stable ever since. Luckily my sense of taste returned gradually over a period of a few months.

 

Please be aware that what I have posted is pure speculation and not medical advice.

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Hi Laura. Glad to hear Dad is now home starting the slow business of healing , I know personally being home was the best tonic although not a little scary for me and my family to be away from the security of the checks and care of ward life. It gets easier.

My appetite when I came out was fierce and in fact if I let myself go hungry then my head pains and twinges would notch up even more so I and my little army of companions would keep me constantly topped up. I also had build up drinks for my weight and energy as I just couldn't seem to keep up with the demands the healing was taking on energy levels. That's my personal experience. I did lose masses of weight during my hospital stay so it was also important for me to regain a healthy weight as I wasnt over weight when I had my SAH. I would even wake up hungry and hubby was used to going and getting a bowl of cornflakes or similar.

My thought is that if it makes dad comfortable at this point then go with it, keep it healthy food, porridge was a favourite for me balanced by a little something to keep it regular if you know what I mean, keep lots of fluids too.but if you think there is no regulation in his appetite then speak to the neuro team who handled his care.

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  • 2 weeks later...

Daffodil and Super Mario, thank you for sharing your experiences. Dad did a lose a massive amount of weight quickly in hospital (a stone in 2 weeks) which he had mostly regained by the time he was discharged. What was worrying us was that he was going downstairs to get the food himself, so it became a case of sleeping with one eye open just in case something happened!

Although we have all joked that me and my mum are possibly a bit 'hyper' in our care, but we are all sinking in to a nice routine taking it in turns to make teas etc.  Dad's appetite also seems to have calmed now, but his tooth is sweeter than ever and I think he can hear a biscuit packet being opened at 1000 paces!

We finally have a date for a cognitive assessment too, so in a very odd way we're all looking forward to this next phase. We have also made a visit to the GP who gave a very informative printout from patient.co.uk that used the word 'catastrophe' within the first few sentences....sigh! Really not the type of phrasing I anticipated in the first bit of literature on SAH that Dad would read!

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Hi Laura,

Glad your Dad is out of hospital and doing well. I had my SAH in January this year and also developed hydrocephalus which led to me having a shunt put in. I lost just over a stone in weight in the hospital. When I came out of the hospital I didn't regain my appetite for quite a while, but when I did it came back with a vengeance. I also had a real sweet tooth, which is odd as before it happened I was definitely more of a savoury person. My husband and I have wondered if this is the bodies way of getting more calories after something like this.  

 

I am glad you also have the date for the cognitive assessment for your dad. I also experienced a lot of confusion and memory issues in the hospital and sat those tests upon discharge. This might sound odd, but although I had been told in the hospital that I had a memory problem and I had seen the evidence for this myself (such as the list of my things my husband had to leave by my bed)

It wasn't until I sat those tests and couldn't do them that I really started to recognise that for myself (I also think it was because I kept forgetting what I had been told in the hospital whereas the cognitive tests stick in my mind more).

It might be worth taking that into consideration when your Dad sits the tests. They are also quite tiring as well so your dad may need a good rest afterwards.

Good luck with everything!

Gemma

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Thanks Gemma, Dad was definitely a savoury person before too. It is also a good point about the tests, unfortunately his is booked for 3.20pm which is when he is usually having a doze and the assessment is 40mins motorway drive from our house, so I have a feeling he's going to be exhausted before he even starts.  The way we are looking at it is that it will be good for the consultant to see Dad at his worst rather than his best.

 

Did anyone experience disorientation that you recognised sometimes and then was fully immersed in at others? We've been 'living' in Jersey for the last 10 or so days (we live in Wales with a sea view). Sometimes Dad will say he had a vivid dream about going to Jersey and then not very long after he will say something that is totally logical IF we were indeed in Jersey. His blood test this week showed that his salts were OK, just worried that its the pressure building again or something else entirely different...

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  • 2 weeks later...

Hi again Laura,

 

I was in cuckoo land for over a year and it took me a while to remember and take in all what happened.

 

They/Family showed me what I wrote as they gave me a pen and said "write what we can do for you" and I wrote    "Help Me"   in a baby  writing.  It was upsetting but at least it got things moving.  None of it I remember. as I was off with the fairies lol.

 

But you do get better slow but surely, take Dad out, as my hubby took me everywhere and we stopped for a coffe that made me feel good in myself.

 

I had no core ie I kept falling to one side and I have my Husband Sisters Brother and lastly my Daughter to thank for how I have come on.

 

Without our Carers, You and all like you we'd be lost.

 

So keep going with your Dad and if he makes mistakes don't worry to much, he'll remember eventually xx

 

Good luck to you All

 

Winb143 xx xx

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I asked my husband why my Mum & Granny hadn't been into see me, because they are no longer here I was told, but I was speaking with them it was so vivid I can still remember that, and honestly everything else isn't even a blur it just isn't there at all.

 

So strange the games your mind plays with you..

 

Had those tests too don't worry its all part of understanding - for everyone.

 

take care

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