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Are you a Carer? ..... if so, please join us...


Karen
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I would really love to get some more Carer's on board .... I'm so fed up with seeing "anonymous" postings on other Message Boards .... I have had personal e-mails from Carer's, but would really love for this forum to get started ... whatever you have to offer, there's a lot of you out there and from what I can see, it could be the start of some really good support for you guys that look after us. If you're feeling brave, then please post .... we would really value your contribution to this site ..... and you'll not meet with any hostility......let us know your story....

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Guest michael's girl

hi all,

My partner had his SAH on the 11th of July 2007 hes 36 , frontal lobe massive bleed, which 19 days proir to this this had a sentinal bleed with all the classic symptoms but both doctors and hospitals didnt pick up on this, and how it still angers me. Even though all signs where classic of this and yet no lumbar puncture was done or MRI. But there u go nothing can be done now about this but it still makes me so angry!!!!!! :evil:

A week and a half later he had another massive bleed both I must add I was with him, and in the first case I had recognissed he was having some sort of a stroke and I had seen my dad actually have 2 of them when I was 13, and then the one a week later at the end of visiting hours i saw and shouted the nurses to him, as I came in due to transport prob., late he was clutching a stress ball vigorusly and when I asked him whats wrong he replied with "excited" which I took for "agitated", then said he had spasm in his back and neck and then the snorting started, this noise scares the hell out of me. Even though he has had a coiling I still worry which is to be expected. :?

After the secon SAH he had to have a traciostomy and even if he could talk after second one this was going to make it IMpossible hes also had a number of EVD's and then eventually a shunt to due there jobs. Traciis now out and hes slowly talking but mostly to me, hes got no parelisation as such but he cant move alot as well hes been imobile for a good number of weeks, (there are alot of shortened muscles) even though hes had physco and I go in and massage and talk to him. I have enen learned how to shave him as we did have an issue with one of the nurses who said we need to cut all his hair and beard off, now they wouldnt due this to a woman. Hes a georgous man with long hair and beard , yes mayb a bit of a hippy, I will post a propper pic when i work out how to do it on profile. Hes had certain bit shaved for ops but I wouldnt let this nurse take away hes personal right as if he'd been a woman this wouldnt be the case. So with my visiting I shave him and massage him, its been a good way to maintain some level of intamacey through all this. We were very close and I feel we havent lost it despite all that has gone on, in fact i feel that nothing has change even though it has but our love has got stronger if that was at all possible.Nurses and other patients say hes happier when I am there, I know what they mean as I feel the same. Hes now starting to eat yogarts but if hes alseep and i cant be there not all the nurses give him them. To be expected as the nhs cant even find a bed that fits him as hes 6ft 2 inches.

I wish i could be there all the time I miss him desperately and I cry myself to sleep cause I miss him so. WE also have 4 children between us 7, 9,15and 17 and the 2 older boys have given up there summer to look after the little ones when I can't of course I am spredding myself so thinly as there is nothing else I can do. We are on our own, his mam has only seen him for 5 days of his stint in hospital she wouldnt go and see him in intesive care but did however visit a few times on HDU.

My partner is due to go to a rehab hospital this week, I have asked his mam for some help as I have been asked to be there more and he comes on better when I am there, I also know it will be me he gets more angry with at later stage, I have seen it all b4 with my dad. I find I am starting to get isolated and have nothing for me to be honest I have no time once i see him and kids are seen to. I also feel that this holloween will be very hard as we where going to have a handfasting in mid wales but this will be postboned but thats, ok.

Also recently the stresses I have encountered with financial things and sorting out his affairs has been a real issue and cause of unwanted stress, is there anyone who can help, and i would just like to talk.......

michael's girl x x x x x

I feel hes amazing to come through all of this one thing I never did was lose my possitivity and i know he has age on his side, and when hes weak I have sent him mental strength, its taken me years to find the perfect man and ever since we met I have realised what love truly is and how it feels and i know this will make us stronger... I do wish family could be more helpful especially his mam. is this common :roll:

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Hi michael's girl, welcome to the site, it's a great site, there are lots of incredible people here who will be happy to talk about anything you want. There are some wonderful carers and supporters here too, and I'm sure they will know exactly what you are going through.

Your Michael sounds like a honey, good on you for keeping his hair! I'm so sorry you're having to postpone the handfasting, maybe your friends and family can help you celebrate your love in another way around halloween? It sounds as though your care is testimony to your love by the way.

I'm so sorry that you're not getting the support you need - hopefully people will help more now that you've asked for help? Fingers crossed on that for you. My boyf had to deal with most things on his own, bless him - my mum would have helped more except she was too far away.

Please remember to look after yourself as well, impossible though that must seem at the moment. Good luck to Michael and to you.

Love Blondie x

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Hi Michael's Girl and a very warm welcome to you..... :D

I'm sorry to hear about Michael and all of the problems that you're both having. As you've pointed out, his age is an advantage with recovery and he sounds as though he's now making progress. I found that being in the hospital bed for a couple of weeks, left my body like a rag doll. Trying to walk and find my balance, was horrendous and I was surprised how weak I had become..

Most of us on these message boards, lost about a stone in weight too..... so, massaging Michael, sounds like a good idea. The food situation with Michael, sounds like my own experience......basically, in the early days after the SAH, if you fell asleep when the food was delivered or you couldn't manage to sit up an eat it, there just wasn't the help and nobody seemed to wake you. It's not ideal to say the least.

Can I ask you why, Michael's Mam seems to have a problem visiting him? Do you have any family or friends that can help support you through this? ..... even if it's just practical help with the house or the kids, it will take some of the pressure off you.

We have a few carer's that use these message boards, so I'm hoping that they'll be able to offer you some support.

I'm a survivor of a SAH, but I know that often, the carer's problems are overlooked and they also need support, that's why it's so good that you've posted.

Anyway, we're here to listen if you need to talk ....

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Hi Michael's Girl and welcome.

I agree with everything Karen and Blondie have already said. Michael is a very lucky man to have someone like you to care for him. I hope that your family and friends and Michael's mother can rally round to give you the support you need, so that you can spend the extra time needed to give Michael the care he needs.

Remember to take care of yourself as well love and best wishes to you both.

Janet x

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Guest michael's girl

Wow!!!!!!!!

Thank u all for your sweet welcome :D It's made me feel really happy to get home from hospital this eve to find all your lovely postings. Also Michael had a very good day and was very awake and alert this visit, so its been a good day. He spoke a bit tonight as well and had 2 lots of yougart with me.Michael's also got a peg in his tummy.

As far as his mam goes well she does live a bit of a distance from us about 230 miles away but she did come to stay for a while and she is planning on coming back in the second week in Oct. She has admitted that she finds it very difficult to see him in the state hes in esp b4 when he wasnt talking. But if I was her I'd have found it important to see him more, but I sapose we are all differnt creatures. I have had a few close friends who have been very supportive esp 1 who lives in Manchester. Some people have probs with head injureys I guess and some just dont know how to cope with it. My next door neighboughs have been amazing and have help with lifts to hospital as the hospital is about 20 miles away, I dont drive and normally get 2 buses to get there and back so any lifts are very welcome.

I will try to get some time for me and have a break at some time but I do find it hard as I do want to be with him daily if I can, I dont do both visits as I had been doing. I'm getting excited about him going to rehab as I know the physco will be quite intenses and he will come on in leaps and bounds. And I did go for a visit on fri to meet staff and have alook around. Its the same place where my x brotherinlaw went after he had a car crash and learnt to talk walk and do everything again, hes an amazing testamony to the place and to human strength, when given love and support.

thank you all once again, I am off to bed and will post more tom.xxxxxxx :wink::wink::D

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Hey Michael's Girl, no worries - the great thing about this place is everyone's here, no matter how you're feeling, to listen and offer support, or even a virtual hug.

Maybe now Michael's mam has voiced her fears she might be able to deal with it better. It's good that she is coming to stay, hopefully you will start to get the support you need.

Hey, if it makes you feel better, then do go and see Michael every day - but don't beat yourself up if you can't make it, give yourself a break in that sense. Also, try and look after you - making sure you eat and everything. There, lecture over!

Take good care, looking forward to chatting with you more,

Blondie x

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Guest michael's girl

It's ok I wasnt feeling lectured. I am eating 3 meals a day and good healthy food too! I go to see Michael every day for me, as I need to see him and give him a kiss its as much for me as it is for him.

I only wish his mam would come sooner as we could use the help here the older boys have been doing very well with it but they could use a break even if his mam can't see him she could have helped more with the kids as 2 younger ones are her biological grandchildren. We could all use some help.

The little ones and I went to see him this afternoon and after a bit understandabley Michael got very tired, I know I need to have a break also but even if I have a day away from hospital I still have all the stuff at home to deal with. :twisted::evil: I actually find the stuff with Michael easier to deal with mayb this is because its something I have delt with b4 with my dad. I only wish she could come sooner she went away on a cruise and I really thought she was gonna come back and come here but at least shes coming, so I must hold on to that thought. If my parents where alive still I know my mam would have been different and I'd have had some help. Anyway I'm gonna get some sleep or have a lay down for a bit. This all happened with my dad b4 and my brothers and sister got very distant and left it all to my mam and me.

Such is life,

this site is amazing help and support i am so glad I found it!!!!!! :D

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Like Blondie say's don't beat yourself up if you miss one or two visits, if Micheal is anything like I was he won't have a firm grasp on time at all at the moment. It's important for you to keep looking after yourself as you will be the rock that he rebuilds his life on. As for the kids personally I didn't want mine to see me when I was first recovering, apparently I was lucid on that quite early on. Even now I feel that for my sons to see me so near to the checkout would of had a greater impact than not seeing me at all. Don't worry about what final recovery he'll make you've just started on the road and there is no SatNav for stuff like this.

Good luck to you all.

Scott

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Hey there

So sorry to hear about Michael and I understand how tough this is on you. We were on holiday when I had my SAH and on a Thursday night. My husband had to come back home on the Tuesday to Nottingham as we run a company together - I was still in Plymouth and he couldn't come back until the Friday night. My daughter was terrified of coming to see me when I was in the HDU as the monitors and beeping scared her, so to some extent I can understand how Michael's mum is feeling. My parents stayed with my uncle and managed to get in to see me everyday - although for the first couple of days I was constantly sleeping and wasn't even aware they were there.

You sound like a very strong woman and that will be a great help, but like everyone has said - you need to take care of yourself too - if you're worn out you're going to feel lousy and even worse. Time is a great healer and Michael will get better at his own pace, but with your love and support it does help the road to receovery become a lot smoother.

My thoughts and best wishes are with you.

Sami xxx

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Hi Michaels Girl.

I am a carer and I want to just reinforce the advice you have been given, eat well, sleep well, focus on the positives, don't bother with guilty feelings, keep researching the illness and how to speed up recovery etc.

You are here at this site now and you will find that a lot of your questions can be answered. You will also find this to be a fantastic place to come for support, I know I do.

Again, take care and stay strong!!

Andy

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Guest michael's girl

After docs from rehab hospital told me mike was next on list they promised him a bed, they have given bed to someone else I am distrought to be honest i feel lied to and cheated.... Y tell us he was going in first place, thank u for ur kind words and support. I would have more care with Mikes mum if she could at leats look after her grand kids, she may not be able to see Michael but my eldest 2 boys from my first marraige are 15 an 17 and when im not here they look after younger ones surely his mam could help us i have cried on fone to here for help. I want to go to bed and cry. Im still possitive but tom i have to go in and tell michael no rehab as they gave away ur bed that they promised u. Although hes been through alot he does have understanding of what happening mayb not time scale. she is coming in 2 weeks but i could use her now. If michael didnt have me and kids hed have seen no one to be honest.

sorry i am very down xxxxxxxxxxxxxxxxxxxxxxx

ty for support and understanding

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When we spoke last night I kind of got the feeling that you are in need of more TLC than Micheal at the moment. You don't have to be superwoman but you will be of more help to Micheal if you are getting enough sleep, eating well, feeling happy that your children are being looked after and as you said he's not aware of time at the moment so take some time out for yourself and the kids. Get some photos of you and the kids and put them by his bed and if possible get a photo taken of you and him together where he is now and smile in that picture. If he's anything like me he needs to be reminded almost constantly that he's not alone but you can't be there 24/7 but a picture can be a trigger to remind him of that fact.

I know I'm rambling at the moment so I'll delete the other paragraph I'd written and leave it at one. Just remember one thing..... You'll be no use to him or your kids if you try and do everything all the time. This is the start of a long journey so it's important to pace yourself.

Scott

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Hi Laurie you sound as though you a had a bad day. It must have been awful finding out they have given the bed to someone else.

Its a measure of your inner strength that you can still remain positive. Hope tomorrow goes well when you visit Michael at least he has you he can rely on.

Sending lots of big hugs hopefully tomorrow will be a better day for you.

Janet x

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Guest michael's girl

Thanks for ur love and TLC, I have put pictures by his bed and one of us together also, he has a collage of all of us also (this is a big one that hangs on his feed monitor).I have asked his mam for help now but I have to wait 2 weeks for her help. I have been eating loads but stress is burning it off, and good healthy food too, been doing this early on and staying possitive because it takes less energy then to be down. Over summer we even had days out with the kids. There is a lovely pic of both of us with him on the tilt table and we r kissing and both look amazingingly happy.

I know how long the journey will be, well not exactly just know it will take a long, long, time, if u know what I mean. I never do long days at the mo i only go in when kids r all in school, at least I am getting a lift in and out today, I only see him for 2 hours a day, its been a long time since i have done a full day of visiting only when hes had and op or something or when in ICU. Im always home just after kids get back from school and we eat together. I am also getting a lift in today... so no 3 buses in and back, so 5 hours wont be spent traveling, yippy!!!!!!!!!!! This is from my sons mates mum and dad, a mate of mine is coming for weekend to give me a hand and a lift, shes coming from manchester to help out. Shes been constant to me and rings me everynight if i dont ring her.

I also have pics of Michael next to our bed which I may add is very lonely to sleep in, the pics are some b4 and after I have weekly updates if u get me so I have an image of how he is at mo so to speak. I am also compiling a photo album of fotos from early on and his journey so when he gets down I can show him how far he has come. My friend in manchester suggestied I do it for me, as when her son was born with meningitus, its something she wished she had done because she said the images of how ill he had been are trapped in her head. He has totaally recovered by the way. Its been good for all of us also so we can see how wonderful he has done despite all hes been through.

Im trying to hope we may get some better news today, but u know as sad as yesterday was and a disapointing for all, well when physco at hospital where with him and they do it often when I am there, I was so proud of him I could cry, he was trying to hold himself up when sat on edge of the bed u could see the strength and ditermination on his face when they realaxed his stretching and we said michael now u try and he did just that, isnt life amazing sometimes :):):):)

I must go now and get the kids up, i get up at 6 so i have time on my own with a cuppa in morning so the rush will be on from the time i post this, sorry about my mistakes in spelling its the dyslexia.

Take care all this site is so amazing, I told the SAH support nurse in hospital about how wonderful and support it is and shes going to recomend it to patients and relatives. If anyone fancies a chat this eve i will come and have a look in chat room about 8ish tonight....

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxoooooooooooooooooooooooooooooooooooooooooooooooooooooooo to u all

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Hi there.

I went through a lot of the same things as you are going through now. I had a lack of support from Heathers family and struggled a lot.

Add me on MSN. My MSN is nearly always on but I work shifts and I am not always there, I will get back to you as and when I can.

Its not always going to be difficult, there will be times where you can't see the light and times when you can. Remember always that as time passes things change. For me as time passed it got easier to juggle the new life I am living. It takes time to adjust and you are in the early stages.

Things will change. Have you asked at the hospital for any support? Can friends or any other family members help out? I learned early on that its ok to ask for support and that if anyone offers it to grab it with both hands. Any respite, at anytime is to taken as immediatley. Don't waste opportunitys to rest and recharge.

Another activity I found helpful was to learn everything I could about the nursing process and the recovery process. For me, knowledge was a comfort. It gave me some power/ control in what was going on around me.

I have to go now but feel free to contact me.

Andy

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Guest michael's girl

Well there has been a bit of progress with michael head been moving his head from side to side so that is really kool!!!!! :):):):)

As for the issue y head not going to rehab, this is all up in air at moment, we had no explaination from rehab team. They have been coming to visit him each week but this week they were in and out and hardly spoke to me like they normally do. I havent told Michael as hes in such a good mood and not down as he was b4, so I am working on the fact he's not got a great concept of time and mayb in the next few weeks there will be another bed come up.

And wait for it I finally did something for myself I bought myself a pair of boots as in between visits I went into town centre and bought a lovley pair of brown leather motorbike boots which r lush. So a little bit of retail therapy did me good. Im trying to see this lack of him getting a bed as a possitive thing, well I cant really see the possitive side of it, but I am anyway as I feel its the best or easiest way I can deal with it. And we r on a wait and see what happens. I was hoping that the rehab hospital would help with socail worker but Im gonna see the ward manger on the nuro ward later to see if they can get something in the works for me because although I HAVE BEEN PAYING THE BILLS AND ALL I really need some help with paperwork and being his appointie which is taken ages.

I am getting a lift in this eve so I am hopping to get some fone calles in the day time and try to fill in some more paperwork. Which I feel very difficult as I am dyslexic. I also have to see dentist as I have a tooth ache, so this will be fun, he he!!!!!!!!

Anyway thank u all for ur loves and hugs which r a great help. :):):):) IM trying to smile and be happy despite it all,

I wish I knew when we were gona get Michael home its been 3 months yesterday that hes been in hospital, I know there are no answers and that it will be even longer but I miss him desperatley we all do at home, I wish I could get in bed an cwch him up and sleep by his side but I'm sure its going to be a long time even though I am hopping it will be sooner rather then later..

Take care all hugs to all who have repliedxxxxxxxxxxxxxoooooooooo

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Hi Michael's Girl

Been offline for a while due to puppies chewing computer cable so have only just seen your posts. Welcome to the site and do hang in there. You sound really positive and strong, and so so supportive. Love is amazing, isn't it?

I'm a SAH survivor but my partner was there for me like you are for Michael and it means so much. It brought us even closer together, which I didn't think could be possible, but it did.

We're all here for each other and I know the gang have helped me through some sticky times so welcome to our gang. Hang in there, we're all here for you.

Sarah x :wink:

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Guest michael's girl

Dear Sarah,

Did this really bring u both more together, is that possible. Michael and I were so close from the min we met it was like we'd known each other before in a a past life. I have always felt that this may bring us even closer but then u still ask yourself the question, will it really???? We were due to have a handfasting on Holloween this year but we will have time at a later date. id have rather had it this year but just think of how much will have happened and what will b thankful for.

Like i say it easier to remain possitive and be pro active, I have been on the fone this morning with social services and trying to get a carers acessment sorted and all that silly paperwork which I have issues with anyway but i am starting to get there very slowly, i have applied for appointie for Michael and all this is taken ages, sometimes i want to scream u know. Because of issues with rehab i have had to takle it myself but what else is new.

Anyway I love the gang on here this has been a little saving grace for me i have told Michael about this site and I think when he gets home we will both come in and help and support others. Like the Beatles song goes..." I get by with a little help from my firends"

take care all love and hugs to u all back xxxxxxxxxxxxxx0000000000

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Guest michael's girl

The weekend was alot better it was nice to have support from good friends and of course a lift to hospital. Michael also had a little gravy and mash and we have ordered a puree dinner for him for lunch time, so will see what happens at lunchtime Im sure if hes awake it will be enjoyed. I am trying to arrange some days off wwhen his mam eventualy comes, as its been over 82 days with no days off and not alot of me time for me to regroup and see more then just the trees. Im hopping to get some more info about rehab, fingers xd.

love and huggs to u all, x x x x x xooooooooo

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Hiya, It sounds as things are becoming more positive for you and Michael sounds as though he's coming along a treat.... don't ever be afraid to ask people for help.....I'm sure that they'll only be too willing to help....xx

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Guest michael's girl

well mike is doing good, hes on puree foods when awake and doing pretty well with them.

his mam was planning to come next week and now putting it off till week later and only staying 10 days then mayb not coming till xmas. i understand she finds it hard to see mike but she could give us a hand im asking and asking and i feel like im being put off. im trying to remain possitive through it all but even if she came to just did a few house hold things would help.

i am planning a few days away only 3 in mid wales but, come on shes had holidays and med cruises since her sons bin ill. i only wish my mam was alive as shed been here all the time. her excuse is being to far away!!! i really dont get its.

im really bewinldered by all of this, i feel i want to give her a peice of my mind :twisted:

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My inlaws had the kids full time so my wife could be with me. My sister stayed full time for the first week, and then made the trip down from B'stoke to Southampton for every evening visiting session (whether I was concious or not). So I was very lucky with the support that my family gave to me. My brother on the other hand I have seen twice since my SAH (four years) and was told that I made him feel uncomfortable!! My father died at 38 and it seems my brother was reminded too much of that!

Don't feel guilty about taking time out for yourself.

Scott

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Hi

Just been reading your thread my you have been through it, hope your looking after yourself my husband Ronnie keeps telling me that its the carer that gets forgotten, Ronnie has been my rock but I have felt let down by others, family friends they tend to be scared of what they dont know or understand.

I hope you get some help soon, good to hear from you keep strong

Louise.xx

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