Me and my family

[michelle C]

Hi Lauren

The holiday sounds brilliant just what you need for YOU and YOU only

Its just what you deserve you are such a wonderfull person and don't forget that

Sending love and hugs

Michelle C xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[Lauren D]

I'm looking forward to going away and having got stuck in the habit of worrying too much about what everyone else thinks I was glad when the counsellor called tonight to book an first appointment and so I'm hoping it will give me a chance to find a way through the murkiness as I am still feeling so sad in the run up to Christmas that I'll be left out of the family again and Mum will go out with my sister bro in law and my two dear nephews who I've not really seen in the last 4 years due to the rift post my SAH when I asked for transparency over how they were running mum's finances. Now I've really stood up for myself and challenged them further saying it's unacceptable just talking to me about mum's care by text and email and not allowing any other form of communication just makes me wonder what on earth they have got to hide which has resulted in brother in law threatening me with an injunction if I communicate with them ... it was only an email I sent and it wasn't the slightest bit rude - and I'm the one feeling bad, guilty and lonely. The thing is even going along with it didn't make any difference so I suppose I've nothing more to lose by standing up for myself. I only wish I could wave a magic wand and find a wiser way forward. I suppose if Mum gives into them all the time because of the boys and doesn't see that I should be treated with respect then they'll not going to go down that line, and because she's got dementia and can't be upset I'm on a hiding to nothing - it shows they don't really care and perhaps I'll just have to try to stay busy not to be upset and leave the door open.

[Guest Beth1957]

Ah, please don't feel you're being selfish, Lauren; you really deserve this break, goodness knows you've worked for it honey! xx

[Skippy]

Hey Lauren

Don't you feel selfish or guilty hun - you enjoy your break - you most definitely deserve it.

Sami xxx

[Louise]

Think everyone has said it...... ........go enjoy relax have a chil out fun time......

hugs

Louise.x

[Lauren D]

I just wanted to say that I had a wonderful holiday lucky me in St Lucia and was able to do scuba diving (so long as I don't do anything risky it's ok) and whalewatching and was thoroughly spoiled for ten days.

It set me up for looking after mum for the last 4 days which was a little tiring but I was able to stay calm and deal with it as I'd looked after me and felt she was entitled to her turn.

Sadly the rest of the family didn't contribute anything to her care over the last 4 days. Mum had managed to fall downstairs and cut her head open and be hospitalised with ten stitches whilst I was on holiday which was pretty much to be expected but I've been able to look after her and do my bit without feeling the usual resentment under the circumstances so I've learned the lesson which is to put myself first then I'm better for everyone else!

Best wishes to you all and thank you for telling me to go away and not feel guilty.

Lauren

[Tina]

Hi Lauren

So glad you had a wonderful time in St Lucia....you really did deserve it ! Glad you realise there is nothing to feel guilty about xx You have been and are there for your Mum, but as you say you do need your own time, to be able to cope........bless you xx

Hope your Mum is doing ok, and wish you and your family a very Happy healthy New Year!!!

Take care,

Lots of love to you,

Tina xx

[Guest Beth1957]

Hi Lauren

So glad you had a wonderful time in St Lucia....you really did deserve it ! Glad you realise there is nothing to feel guilty about xx You have been and are there for your Mum, but as you say you do need your own time, to be able to cope........bless you xx

Hope your Mum is doing ok, and wish you and your family a very Happy healthy New Year!!!

Take care,

Lots of love to you,

Tina xx

Hi Lauren,

What Tina said, with bells on

Your holiday sounds fantastic; I'm so very glad to hear that you had a good time.

You've certainly earned it!

[tennissmithy]

Well done Lauren- it sounds like you had a fab time xxx

Hopefully things will change for you in 2009 and your family will help more with your mum

Love and hugs

Laura

xx

[Lauren D]

As they say - you can't change other people you can only change yourself. Were it that easy!

I've spoken with the carers and they're concerned re mum as she's not getting up and is in a lot of pain from her fall even though it was 2 weeks ago and says she's giddy but she won't eat or drink properly. I tried to get through to my GP today but kept missing him as I was trying to deal with a cracked windscreen and the loss of reverse gear in my car in between working. Lucky it's quiet and I work in the road next door. Typical order of the universe but fortunately my friend came and sorted out my home broadband connection so ehildy I'm stuck in waiting to find out if the RAC can patch up the car which is due to have replacement part on Monday I can at least have a moan here.

I'm very worried about Mum because she's started to deteriorate more and cannot remember one day to the next and if she won't eat or drink properly because of the dementia then it's not good. She has always bounced back from setbacks before but I'm not sure about this one. I'm glad we managed to have a lovely time together and it doesn't matter what she can and can't remember so long as I made her feel cared for as I only understand too well from my experience. I think it's best I let the carers and GP advise rather than jump in with both feet with family as I seem to say all the wrong things, I suppose my expectations are unrealistic. Also as it's the first time in the last 3 years I've felt up able to cope with caring for her at Christmas, and have still not been forgiven for having a few months off here and there along the way whilst trying to recover for which I've not been forgiven, I'd best keep quiet!

Lovely to receive all your support and I did manage to get off the guilt trip for a while! So thank you.

Lauren xxx

[Janet]

Hi Lauren

So glad you had such a lovely holiday. Its a shame that your Mum is not so good but dementia often starts slowly then speeds up. At least you had a nice Christmas together and you're right to let her carers and G.P give the rest of the family any advice they need. Hope you get the car sorted out soon and that you don't let others put you back on a guilt trip you have nothing to feel guilty about.

Wishing you a happier and healthier 2009.

Janet x

[Lauren D]

Thanks for your kind words. The dementia kicked in around 1994 but wasn't really diagnosed as it was confused with her depressive condition following Dad's death in 1992. She has always had lots of health concerns since I was about 12, but has bounced from extreme lows back to high and down again, sometimes with several years of a more steady line before the next episode. Her accident in 2002 when she fell and nearly amputated her foot occurred when I'd left her at home feeling depressed in bed rather than getting her sectioned as I thought it wasn't necessary and then that happened. She nearly died as a result of it and was in hospital for months on end and we had to get her into extra care/sheltered housing and I had to take her there and leave her home behind, which we subsequently had to sell which was all very upsetting. Then I had the SAH in 2004 just after we sold the bungalow and although I tried very hard, even getting her to Eastbourne on the train to watch our tennis team play for county the week AFTER I got out of hospital , goodness knows how I did it to this day especially as she was in a wheelchair then. I guess it all got too much trying to carry on as normal and as I had to have breaks here and there from mum as I said I couldn't cope, the family thought I was either on something or mental as I got cross because no-one believed me when I said I wasn't up to caring for her and told me to just get on with it. It's been a long journey but I've learned a lot about having to look after me a lot more and I'm glad we've been able to have lots of nice times together and I can understand it when she tells me her brain doesn't work properly. I guess it's not their fault they couldn't understand and I didn't either, but at least I can look back on the nightmare of it all now with more understanding. And thank goodness for this website on which new SAHers can get support as well as old SAHers like me! Sorry if I'm droning on/repeating myself - would've gone down the gym to work it off if the car hadn't broken down today. Mum said last year she wanted to come and see me if I did the Marathon again this year and I was hoping to be able to organise something - not sure that's going to be but will not give up on the idea just yet as I'd love to see her in the Mall opposite Buck Pal and meet up with the Brain and Spine team after before taking her home. I like to try to find things to stimulate her and not leave her feeling old and discarded and out of things.

Laurenx

[Guest Beth1957]

You;re a lovely, kind, considerate daughter, Lauren

[Guest ElaineW]

Really glad your well deserved holiday went well and obviously sorry to hear about your mum. Dementia is very sad to watch - I did so with my dad for many years and it is very hard to deal with. I think its a little like SAH in as much as there is very little hand on help and information with it. I do hope things improve for your mum and that 2009 holds happier times ahead.

Elaine

[Tina]

Hi Lauren

Wishing you and your Mum a wonderful happy healthy new year!

Take care

Love Tina xx

[Lauren D]

It's so good to be able to talk about Mum on here, hope you don't mind. Doctor called to say no infection but likely dementia is worsening, no sign of a bleed and wound on head is healing well. We're going to try to swop her lager which is all she will drink for non-alcoholic ones and get her liquid that way as it's cruel to try to force her to drink and eat what she doesn't want to. Dementia seems very like SAH in slow reverse and things are sliding but so long as I know she's getting the best care then I cannot do anything else. At least I understand that when our brain's aren't fully working it doesn't mean that we're not wholly unaware of things around us and we're still people. Also it's hard to expect other people to understand without the experience so I mustn't get frustrated by people who think that just because you're not on the same wavelength you're no longer a person. I realised my brain and me were not one and the same but just part of the same and that people who've not experienced brain injury aren't able to understand.

Happy New Year and all the best in 2009.

Lauren xxxx

[Lauren D]

Just to say I'm shattered tonight, when I came home from holiday and found she'd had a bad fall with ten stitches in her head and no-one told me, came home and sobbed my heart out, then got her here over Christmas to look after her and she wasn't good, ok but not good so I spoiled her. She's been so not right since and I kept thinking it's neuro, they've missed something, made a bit of a fuss, got the physios lined up and the carers are trying their best and we've been out for some nice meals but she's just not been right. I know everyone thinks I'm neuro bonkers so I have to tone it down but after another bad night's sleep I woke up yesterday thinking I have to do something before it's too late and so I called up A&E and asked them if she'd been scanned with her head and they checked and said she'd left before the scan and wanted me to bring her back in to do a CT. She didn't want to go but I left work at 10 am this morning and got her to A&E and we saw a lovely doctor, young Eastern European guy and very thorough and got her through the CT scan, and all the rest, bloods, chest x-ray, ecg, spent the whole day in A&E waiting for the results. He came by later with the results when the consultant had seen it and, given that I've been banging on about her hand not working and is it neuro and we've spent the last 12 months talking to the orthopaedic surgeons ... today they picked up an infarct on her brain which isn't recent and so she had the stroke at least twelve months ago which I kept suggesting and it's not their fault but they should've started with the brain scan. I took her out for a nice meal and she's grateful it's not so bad but it's 12 months lost, and more previously when they said she might have had TIAs but they didn't do scans then which was 10 years ago as they said it was too expensive to diagnose but was obvious through behaviour ... it makes me want to cry my eyes out but I won't because I'm no good to her if I do, and it was like that then, so we're lucky now to have met a doctor today who knew how to run the neuro tests properly, not in a way where she remembers the mini mental tests and how to answer them but someone who could see the pointers past that. I've left the letter with my gp saying she needs to see the neurologists God why can't they see they need to start by ruling out neurological problems before they start with the hardware ???? As I work for the hospital I don't blame anyone and I know they all do their best, it's in the training and understanding and it needs to start at grass roots level, but as we've met a doctor today who did start at the beginning then perhaps it's beginning to happen in the training. It's only a minor stroke, but phew, we all know what it means and I know she'll wake up in the morning and the shock will set in ... as it will with me and I'll feel so angry for not sticking up for what I believed in more and listening to my intuition and my dreams which have kept waking me in the night but thinking I'm overcooking my imagination because of the SAH and everyone else thinking I'm doing it because I'm retarded etc.

Best thing of all is though, my SAH has meant I can see past the dementia and we can have a good time together still and I'll do it as long as I can for her. We even giggled today when she got the day right guessing it on her test and then I asked her the day and she said Monday and I called her a chancer for getting it right and she got that so she's not so bad ... can still do the humour with the brain damage, and when the doctor asked her what she drinks I said 2 cans of lager, he said a week and she said yes, knowing full well it's every day so she's pretty ok on the whole ... I think at 80 it's allowed or am I too lenient?

Thanks, I can say it here honestly.

[Skippy]

Hey there

I think you're allowed to be lenient hun It's not like your mum is going out on the town every weekend and binge drinking - she derserves a treat now and again.

Glad that you've finally got someone who was prepared to listen and do the necessary tests. Keeping a sense of humour is very important and so glad you could giggle with her today.

Take care

Sami xxx

[Lauren D]

Thanks Sami, at least I've got the right diagnosis now and I can see the neuros and see what they suggest. However, so long as I can keep her laughing and we can have nice times together, I will try not to think of the future. It was a bit scary when the dr said falls and stuff makes the brain injury worse but I know that myself, but, this is the first time I've had a stinking cold since the SAH which has not affected my brain so much - anything previously has tended to mimic the post SAH sense of being out of it, any sort of viral infection has knocked me sideways so where's there's life there's hope. Best wishes Lauren x I've asked to change my hours at work so I can spend a bit more time attending to her so that makes me feel better too!

[Tina]

Hi Lauren...so glad you have had a giggle with your Mum and so pleased someone is listening!... hope you can get your work hours changed so you can spend more time with her...You take care ...Love Tina xx

[michelle C]

Hi Lauren

So glad you can have a giggle with your mum humour is a wonderful thing. Hope all goes well with changing your hours.

Sending love luck and laughter

Michelle

[Guest ElaineW]

Enjoy some mum and daughter time together - nothing like it especially with some laughter. Good on you to get the tests etc she needed - its wrong that you have to push for these things but it seems that you just have to these days. I hope you both continue to go along well and spend some quality time together.

Elaine

[Lauren D]

Thanks so much for your kind thoughts. I've just taken her out for Sunday lunch and she's very very quiet. My sister, for all our differences and disagreements, had taken her out Saturday and bought her some lovely Per Una skirts which she likes to wear as they cover up the suprapubic catheter attached to her leg. She's not really getting the level of care I would like, she's smelly and has not washed properly and hasn't had her hair done since the fall at the beginning of December but has refused all offers of help. I've stacked her fridge up with lots of little eats and things like tangerines and grapes so she can pick and I tried to talk to her about what's she's doing but she just stays in bed and watches tv unless I take her out and her confidence has dropped loads. She's very wobbly on her legs and did remember the hospital visit but said they'd told her she'd not had a stroke. Her memory is only working short term but she is quite contented. Julie only sends me texts asking what's happened and won't pick up the phone - I think she is in denial and very angry with me still for my SAH and angry that mum is unwell. I wish I could deal with it better. Yet, I'm glad I've come through and can now cope with mum's dementia and have managed to get some balance with work and getting her treatment. After the SAH I just could not handle trying to manage her dementia, it is so demanding taking someone out who doesn't know quite what time of day it is or what happened yesterday and I have to keep talking to her and prising out information and now I'm so glad I can conjure up the past - when we were kids, what Dad did etc. and it fires her imagination, but it is hard work and lunch was hard today as she was so quiet and I was a bit tired with it all being so one sided, not that I'm being critical because that's dementia. I can still see the shades of mum as she was but it's hard to tease out, she lights up when she talks of her boyfriend Fred who says she's not had a stroke but he'll give her a stroke and says she can do what she likes at her age so I have to set judgement aside and make the most of this time in the best way I can. I could cry though and so wish me and my sister could reach some agreement - there's so much anger in my family and I wish I could wave a wand and make it better. Sorry if I've gone on but I feel safe to let it out here.

[Tina]

Bless you lauren...it is so hard with families...i really hope you and your sister can sort your differences out and support each other, and work together to help your Mum. Take care...a big hug to you...lots of love Tina xxxx

[Sasbo]

Hi Lauren

So sorry to hear of the worries that you're having to go through. Families, eh? It's not easy as I know from experience, which is nothing like as worrying as your experiences right now. So glad that you're able to open up about it on here, though, as there are so many understanding people who can help, in some small way, you get through.

You're doing a fantastic thing and I can tell you'd not have it any way than being with your mum and enjoying as much as you can the time you have together.

Lots of love and hoping things get better for you soon.

Sarah xx