Staring down the rabbit hole...no idea where to start or how I'll cope(53 Posts)
Dad (81) had a fall last Monday (14th). Top to bottom of the stairs. It took us 10 days to get a proper diagnosis and vague form of treatment plan in place, due to a combination of logistics and general ineptitude on the part of the doctors.
He has 4 broken vertebrae but thankfully no spinal cord trauma. He is able to mobilize in brace with the physio team but is still spending most of the time flat in bed.
It's been a really traumatic couple of weeks - he choked and aspirated last Weds, so had 48 hours nil by mouth and is still on thickened fluids and pureed food. He now has a very bad chest and is awaiting an x ray which will hopefully be tomorrow but who knows? The last one requested was supposed to happen Friday afternoon but eventually took place on Tuesday morning after I spent 10 hours at the hospital chasing various people and ultimately threatened them with PALS and the national Press (and I am really not that person, but it's my dad and it got the job done).
He's getting next to no sleep due to general movement on the ward, and 3 of the 6 beds being occupied by dementia suffers who unfortunately are frequently noisy and disruptive.
He's highly unlikely to return to his previous level of health (which was tending to frail, doddery and depressive anyway) - 50:50 possibility over a 12-18 month period was the consultants view. He's had the brace on a few times and walked a few steps but his overall wellbeing is poor and there's really not much we can do to improve the situation.
Mum is nearly 80, she has a raft of health issues but is largely independent on a day to day basis. However, she's extremely anxious at the best of times and something of a hypochondriac with a vivid imagination. She's managing to stay at her house which is just around the corner from me but she's struggling emotionally - calling/messaging me a dozen times a day (aside from me calling or popping in morning or evening) and mostly panicking and in floods of tears.
I had last week off work on compassionate grounds but can't take any more time (term time only, although they are being a bit flexible). I'm on my own, working full time, with 14yo DD, a mortgage and absolutely no family support (no siblings and everyone else is too old/disinterested/far way).
There's just so much to do and organise and think about I don't know where to start. Suppose I just need a hand hold and if anyone's been in a similar position and has any tips that would be bloody marvellous!
Minty, so sorry to hear about your Dps.
What I can suggest as well as offering a hand to hold is to contact age uk, look at your county council website which may have information about support available.
Age uk can advise re funding, applying for attendance allowance non means tested up to £80 per person per week.
Push for an ot assessment of your dps house to look at aids to help mobility.
And try to get help in ASAP- cleaner etc. Get your dps used to it.
If you need time, ask for more time because now is crucial to ge5 things in place. And be kind to yourself. 🌺🌺🌺
One thing that really worries me is that mum, who is normally very practical and absolutely wears the trousers, just cannot seem to make any decisions about these things.
I told her the other day that is found somewhere we can hire a stair lift from, so we can get dad home at some point and then consider the longer term options.
She replied 'Hmm, I don't really want a stair lift'. They live in a house with and open plan living/dining area and no downstairs loo. I pointed out out to her that what she 'wants' doesn't really come into it!
is your mum in denial about what his recovery might be like?
family friend had spinal surgery in her 80s, she had a stairlift fitted initially but now only uses it when she's really tired. Is it possible your mum has heard tales like that and thinks, ach, well, it will be fine?
regardless, I feel for you. I might have said on your other thread but I don't have a helpful sibling or anything and this is very tough.
are your parents on good terms with neighbours - mum's neighbours are great and it really helps.
It sounds very difficult, are they hoping he will be able to come home after some rehab and has had adaptations made to the house. We paid 3k for a stairlift, they rarely used it and we ended up paying for someone to take it away for scrap plus they narrow the stairs quite a bit. At some point the doctors and therapists will need to think about how much he will be able to do in the future and he will be assessed for all his care needs. They may suggest rehab off the acute ward or a few weeks in a community bed or carehome, he will need to be allocated a social worker. If he is able to go home then ask for a home environment visit, maybe a hospital bed downstairs with a air mattress, chair, commode, carers coming in, community speech therapy and dietician to monitor his eating and drinking safely. It sounds like he still needs a lot of care and your mum is upset and frightened, maybe the staff could help her or the Chaplain if shes interested. Would she agree to seeing her g.p. and asking for help with this.
If he comes straight home from hospital, then rehab at home is also a possibility.
Be prepared that hospitals work on an hour-by-hour basis, so if you get a decision that he's going into a CIC bed or for home rehab, it'll happen today, or at best tomorrow. Makes it very hard for you to plan things. You may have to put your foot down over some suggestions - the discharge team's priority is to clear beds for new patients to come into.
Make sure you reserve your time for things only you can do - decision making, planning, ensuring communications are working, emotional support. Don't get yourself bogged down with things that someone else could do - personal care, cleaning etc. Be very firm about the amount of regular support you can do - even though they live close, make sure that it's understood that you won't be "just popping in" every day, or available to deal with "emergencies".
Above all, don't have any guilt about being "selfish". Unless you maintain your own health, you can't help anyone else. So put yourself first.
It’s very hard. Something that took me by surprise when DMIL was diagnosed with osteoporosis and Parkinsons was how resistant both she and FIL were to having any vaguely medical aids installed in their place: they really didn’t want it to “look like a hospital” and would prefer not to have had rails / handles etc installed. It took having an occupational therapist come round and tell them “officially” what they needed to convince them. Maybe that would help?
Thanks for the replies. TBH I've just been too knackered to respond.
Went in on Saturday and he had a really bad chesty cough, difficulty breathing, high temp and BP...actually managed to get on call doc up to him on a weekend! Sped off for an x ray and diagnosis of chest infection, so he was on oxygen and ABs for a few days which meant no brace or physio.
Infection is clearing up nicely now though and got to hospital just in time for physio rounds today so saw him walking for the first time in 2.5 weeks , albeit with a frame and physio holding him up but still...He's also off the pureed diet and thickener in fluids - thank God!
They say he is now medically fit for discharge and have made a referral for a bed at a community rehab unit, which will be much better for him, although we've had to put our foot down about location as only 1 of the 4 in the area is actually near enough for mum to get to independently.
I've put in a application for reduced hours at work until the Easter holidays so will hopefully find out about that tomorrow. If they agree it will make life so much easier.
Mum is really struggling emotionally with being on her own. I've offered for her to stay with us as and when she feels the need but we don't really have room and can't stay with her as we have pets. That said we are literally 3 minutes walk away and she is trying to be brave about it all but still tearful and anxious and has had a couple of panic attacks.
I am absolutely knackered, haven't missed a day at the hospital and am up between 5-6am and getting in between 8-9pm most days, but at least we seem to be moving forward a tiny bit.
Minty sounds good progress for your df. But please try and ease up yourself now...... you cannot go on like this and need to keep something in the tank.
I know...I'm having counselling myself at the moment for stress management and self esteem issues.
I just feel like if I'm not spinning all the plates, all the time I'm lazy/useless/failing.
Managed to get home at a sensible time tonight though, had a bath and a glass of wine and a fairly healthy dinner.
DD is at her dad's on Saturday so have did to mum that unless there's a dire emergency I'm having a day off everyone and everything.
Naturally this is now the day they've pencilled in for Dad to be transferred !
I just feel like if I'm not spinning all the plates, all the time I'm lazy/useless/failing. Oh dear! You really must be kinder to yourself! What would you reply to a friend if they said what you just said?
But in terms of pure practicalities - it won't suddenly get easier when he goes to rehab, and later comes home. You'll find you're spending a lot of time managing things (my peak was the morning of Christmas Eve, with 12 phone calls either from my Dad or related to my Dad). So you really do need to take time for recuperation.
Well predictably my request for reduced hours has been turned down.
They 'may be' able to give me a Friday afternoon or a couple of mornings if necessary but have suggested I wait and discuss it again once dad is moved.
Friday pm will give me an extra 3.5 hours (we finish early on Fridays anyway) in which to cram everything. Mornings will be largely pointless as far as dad is concerned as visiting hours at the rehab units are 2.30pm - 5.30pm and 6.30pm - 8pm.
If he gets the one nearest to us (and we have stressed that it will make life incredibly difficult if he is transferred elsewhere), my mum could probably visit on her own and I can do 6.30 - 8pm. Anywhere else and we'll be unable to visit during the day at all and its possible I'll be doing a 30 mile round trip of an evening so he gets to see someone, after a full day at work and at the expense of having any time with DD.
I appreciate it's a pita when someone is put of the office and wasn't expecting them to agree to what I'd requested straight off the bat but a bit more understanding and flexibility would have been nice. Could also have done without the (no doubt well meaning) platitudes about how strong I am and how amazingly I'm coping...it's not as if I have another bloody option!
Anyhoo, another flying lunchtime visit to Dad as had commitments this evening. He was sat up in his brace, not dozing off for probably the first time since he was admitted and his speech seems to be improving a bit although it goes backwards when he's tired.
I know he would understand if I went in less, but I love him to bits and want to be there for him as much as possible. TBH I'm feeling guilty as he's been such a curmudgeonly old bugger for the last few years that I'd kind of given up on trying to get him out and interested in stuff.
And as mum as mum drives me crackers at times, I want to support her too. One of the most upsetting things about this has been watching her struggling to cope, particularly with having to spend so much time on her own.
Many sympathies Minty I’m still struggling along myself
Agree with other posters - make time for yourself
I allow myself every Saturday off visiting DF and will even try and screen calls from DM that day too
I’m lucky in that my job is very flexible however still have to put the hours and more in (on average 45-50) but at least I can work when I want
I started at 5.30 this morning which means I can grab a few hours this afternoon to visit DF and feed him
I hope once your DF gets into rehab you’ll see big improvements in my local area they won’t offer rehab at all unless they think there is a realistic prospect that it will work very quickly!
Take care with DM though try and encourage her to make decisions as my DM has just opted out and that has just added to the mental load
OP my dad was in hospital a long time, I didn't go every day as it was too far and I wasn't even working. You might find you really do need to keep something in the tank otherwise you won't be able to help.
mum and I took turns with days because of helping feed him etc etc, plus all the general running round and dealing with docs etc is so tiring.
really sorry work turned you down.
mum and I took turns with days
This is what I'm hoping for ultimately, but mum's anxiety is getting the better of her a bit and I think she slightly enjoys playing the dependent old lady card (this is a very handy woman who will still attempt to do her own DIY, including electrics and plumbing with the aid of WikiHow and a You Tube vid!)
That said she's never been great at being on her own which is a fairly major issue at the moment. I don't feel so worried about Dad now from the pov that he's medically ok, what pain he does have is managed, and he's more able to look after and speak for himself in terms of eating, drinking and personal care. He's also much more laid back and wouldn't mind me not visiting but I worry for his state of mind when I don't as he doesn't seem to make much effort to occupy himself otherwise.
On the upside I am really enjoying work at the moment so although I'm a bit narked about the situation I am at least having fun while I'm here.
JaceLancs . 45-50 hours a week is massive, although I sometimes wonder if I'd mind changing up my hours for more flexibility. Do you have much in the way of support? I had to see my XH at a school event last night and he didn't even bother asking how dad was . At least I don't have to deal with his BS alongside all this.
You're right about the decision making. Sometimes I feel I should be doing more, other times I feel it's good that I'm kind of 'forcing' her to be independent.
I'm also aiming for the day off tomorrow...we'll see.
I have DS 25 who lives with me and DD 27 who is not far away they are both fabulous support mostly emotional but quite handy at pouring me a large gin when required!
DD also does some paid cleaning for me which helps a lot
Do they have money / assets ? They will have to move into sheltered care if so . I don't really understand why a lot of people are so soft on their parents . I have just my mum left but she had enough money assets that I will pop her in a care home / sheltered flat when the time comes. We have already viewed some and they are lovely with company and things to do along with onsite care . She downsized from her very large house when dad died which was the right thing to do. I will manage her but won't care for her ( I have a son with sn ) ... if they don't have any money / assets then there will be care available ..
hendricksy, are you on the right thread? I don't think OP parents need sheltered care yet but there's a couple of threads going on where it might be under consideration.
If dad makes a reasonable recovery and they can either make this house safe for him (ie stair lift, downstairs loo/wet room and possibly bedroom), or find a suitable bungalow within budget (possible if my mum let's go of her Hyacinth Bucket streak!), they'll be fine.
It's the recovery stage and putting either of the above options in place that will take time and effort and be tricky.
Mum has already looked into a sheltered complex nearby which she'd like to go to if she's left on her own. Dad is considerably less fussy and much easier to live with so if it happens the other way round I'll cross that bridge when I come to it.
There is a thread of people giving advice and support to each other about caring for elderly relatives.
If my daughter wrote about popping me into care I would be very angry.
I don't think I'd be too thrilled either Jayfee!
In some ways though this is the problem, current (hopefully temporary) situation notwithstanding they manage ok and they don't need care.
What they do need, or would at least very much benefit from, is emotional, social and some practical support, and whilst you can pay for the latter one, the former two are not so easy to outsource.
If my daughter wrote about popping me into care I would be very angry.
On the contrary, I would never let my DS have to basically give up his life to take care of cantankerous (sp!) demented old me when (if) it should come to it.
Did it for both my parents as a LP, lost my job due to it and got a burn out.
I didn't give him life to take care of me in old age. I'd rather be surrounded by carers in a jolly old people's home. (They are not all dire).
I would never want my children to give up their lives for me but unless I am demented I will make my own life choices. However,op I hope you get good advice and that your mum team see she needs to do her bit.
I wish it was that simple DF being in nursing home does not actually mean I do any less!
They both lived together in sheltered accommodation before DF stroke
Now DM with dementia there on her own which doubles my work and visiting load
I hope I go quickly then neither of my DC have to go through this
However I don’t wish my elderly parents away so feel I have to do the best I can
Jace, I hear you, I couldn't just put them in a home and then do weekly visits or something. I have no objection to those who do, to be clear.
it's just not for us. I was surprised at how some people thought I was doing too much when dad was in hospital/hospice, and now the same people have said things like "you can get a carer to help as company for your mum". these have been friends who have been surprised when I've said I'm unable to make certain days for meeting up because taking mum to doc, or have 3 days when I can't see mum so have to go on 4th day or that type of thing.
We could get her a "company" type carer but I'd much rather provide company myself, even if it is really hard sometimes. And she would hate a stranger doing it.
We have spoken about it and have a plan .. I won't just leave her there obviously and it will be lovely ( we have visited a few already ! )
I actually think it's a conversation you should have early on and not leave it until they are too bad to make decisions . I have power of attorney organised already at her request .
I've told her I won't care for her personally because I have a son with sn and I feel the same about my dd having to care for my son when I'm not here . I will make sure there is provision so that she won't have to .
Sorry if that makes me sound nasty , I'm not , I'm realistic , sensible and organised .
hendricksy I can certainly understand your position, particularly with needing to care for your son too.
For the time being I just need to be there for them both as much as I can, although I'm going to use the half term break to try and get some practical stuff sorted and take mum to a few social things to try and build her a bit of a support network.
Touch wood, I am getting my day off today. Just need to drop DD at the gym and pop to the supermarket then I'm coming back to crash on the sofa, read, binge watch Netflix and eat comfort food!
Jayfee I wish I did have a Mum Team.
A chap in one of the other beds on Dad's ward has 2 sons and 2 daughters who have been tag teaming all week in various pairs to support their mum and visit their dad.
When I saw them all quite honestly I nearly cried.
for you Minty, I hope you manage to get your day off and have a lovely, relaxing time.
hendricksy makes a good point about having the conversation about moving earlier than needed. I mean, with your dad already in hospital after falling down the stairs and with no downstairs loo in their home, it's probably an overdue conversation, but when you have breathing space and know how your dad is recovering it's something you should think about very seriously. If they were to move into sheltered accommodation this year with everything on one level it would be better than waiting. The older people are when they make a house move, the more likely it is to have a detrimental effect on them. Better to get them moved and settled while they've still got the oomph to enjoy it a bit and enjoy the social side of things. Plus, as you say above, what they really need is emotional and social care, and good sheltered housing should provide that.
Minty, I know how you feel looking at those tag team families!
Well he was moved to the community unit yesterday afternoon.
Not impressed so far tbh. He has his own room with t.v. and en suite loo/basin which is good but doesn't seem to be getting a lot of input from staff and by the sounds of it was largely overlooked food wise as he got there late yesterday (apparently his dinner was tinned tomatoes and mash ).
Apparently he has his brace on briefly today and the physios have been round but it doesn't sound as if any effort has been made otherwise to get him mobilised or down to the dining room or lounge, he's just been isolated in his room all day watching telly as far as I can tell.
So difficult as I can only be there of an evening so really difficult to get to know anyone and get a real picture of what's going on.
Mum has been incredibly hard work the last couple of days but hopefully will settle down once she can see he has settled in ok.
He's going to be in for 3 weeks, then reviewed.
is your mum there with him during the day? I take it she's not in a fit state to be asking questions about his care?
Almost every hospital has a discharge team.
Tell them your mother can't cope, the house is unsuitable and your father requires rehab, even though he's medically fit.
Ask for an OT assessment of the house, ask if there are any aids, care packages that could be provided and hold off getting him home until the IDT have given their verdict.
Some health authorities (or CCGs as they are known) do care packages that are free for 6 or 12 weeks.
Sorry, I didn't realise he already been discharged. 😳
I wouldn't think that not managing the stairs will not keep him in community care, won't he be sent home to sleep downstairs with commode? Who will help him on and off if you are not there.
In your shoes I would get in touch with all services who can help and a cleaning service.
A cheery face (cleaner carer) popping in regularly can be a comfort. I don't know why you think only you can be there.
He's in a community rehab unit at the moment and will be for a minimum of 3 weeks. We'll be getting all the OT, home adaptations, care packages etc sorted out through them when it gets closer to him coming home.
The difficulty at the moment is my mum (who is practical but not great on an emotional front) is in full drama llama/not coping mode. She's also very hard of hearing and in recent years incapable of making a decision and rolling with it.
I can't leave her to deal with all the practicalities on her own as she's likely to mishear/misinterpret what is being offered/suggested. She is also saying she can't cope with the 5 minute drive to the new unit as she is feeling unwell due to the stress of the situation and is anxious about the fact it means crossing a very busy A road.
I am at work full time, in a school so cannot take any time off. Sorting out the practicalities of getting dad home will have to happen in half term which is fine in theory.
In the meantime I am trying to juggle a full time job, teenage daughter, home, pets and mum's never ending demands single handedly as we have absolutely no family near enough to help. There is literally no one else to be there at this stage in his recovery.
I have put my foot down with mum for the first time since this happened today as I am absolutely fucking exhausted. She had a neighbour take her to the unit this afternoon, and I'd already said that having basically not seen DD for 3 days between work and dropping everything in the evening to be there for her and dad I needed an evening at home.
Lunch time I get a message telling me I can pick her up from the unit 'on my way' home (it's very close to home but definitely not on my way). I said that was fine as long as she realised I would just be picking her up and dropping her back home.
She got in the car, immediately guilt tripped me for not popping in to see Dad (she suggested I phone from the car park when I got there!), was monosyllabic all the way home and stripped off out of the car telling me to 'just not bother' with them anymore.
I am just waiting for a lengthy outpouring of vitriol on messenger later...
Stropped...she didn't go as far as a stripping in protest at my apparently epic failings as a daughter!
If my DM treated me like your DM is treating you OP I'd tell her to wind her neck in. Your DM may well be elderly, hard of hearing and upset, but she's behaving like an entitled jerk right now and she's so wound up in what SHE is suffering she doesn't seem to be able to see all that you're doing and trying to juggle. Have you said to her 'Mum, that's enough. I've got far more on my plate right now than you do and I'm bloody well doing my best and I'm sick of being your punch bag. I am doing all I can to support you and dad, but I have DD who also needs, a job that I cannot just abandon because of what's going on with dad, a home to run, and I also need to eat, sleep and relax if I'm to not lose the plot. I can't take a great deal more right now and I can really do without you constantly having a go at me. Next time you need a ride to or from the rehab centre I suggest you order a taxi'. You might want to write that in reply to her next tirade.
Sounds like you are doing a great job, OP. You just have to be firm with DM, you and DD's lives and your health are important too.
Yeah, I've reached 'foot down' point, was just hoping it wouldn't be quite such a ballache!
After dropping her off I came straight home, had a lovely bath and am about to chill out with DD, pizza and cheesecake and possibly get moderately shitfaced!
I understand not driving - my mum didn't drive to hospital/hospice either because her concentration was shot to shit. But she took taxis. I imagine if it's such a short drive it wouldn't be expensive for your mum either.
sounds like putting foot down is needed. has she accept the stairlift thing yet? I realise he could sleep downstairs and have a commode, but if a stairlift is an option, that will be much nicer all round.
It's early days but they don't think he'll need a special bed, they still have a commode from when he was poorly last year and the physio has said it's not impossible he'll be able to manage stairs at some point.
Personally I feel the risk is far too great as he wasn't consistently steady in the first place which is why this bloody happened.
I think mum has more or less come round to the idea as a short to medium term solution until they can either move to a bungalow or get an extension/garage conversion done to add and downstairs bedroom and shower room (they've been considering both options for a while anyway).
We've had a chat this evening and she's very low but not snarky thank God. I'm going round for lunch tomorrow then up to the hospital. She might come or not depending on how she feels.
She is really struggling with being on her own evenings and overnights. I feel bad for not being more forthcoming about seeing her of an evening or staying over, but that is literally the only time I get to do housework, admin, see DD and have any time for myself.
"Personally I feel the risk is far too great as he wasn't consistently steady in the first place which is why this bloody happened."
agree. I'd be wanting a stairlift for him.
Getting an extension done will take months OP! You can't just click your fingers and get it done. You've got to find an architect, submit plans to your local council, get approval, find a builder, arrange a start date, have the work done, add extra time because I've never know a single building project finish on time, etc. I honestly think they'd be better of moving into sheltered housing asap and if you only have one week to try and sort it out I think ringing round and visiting local sheltered housing facilities might be time better spent, as while moving is a huge faff it's less logistical work for you.
Quite honestly at the this stage my main priority is getting the house in a fit state for dad to come home to as soon as he is physically able to cope, with whatever adjustments/care is needed for them to cope on a day to day basis with minimal input from me. Mum is generally quite capable on a practical front but goes to pieces when she's on her own. Once she has dad back at home and some support in place if he needs it re washing and dressing etc, she will be much better.
We can then move on from there.
They have already quite thoroughly investigated having an extension with builder, architect etc. The nature of their
house and what they have in mind doesn't require planning permission iirc, so whilst it wouldn't be a quick fix, they wouldn't.be completely starting from scratch.
Whatever they do long term is not going to be quick.
Sheltered accommodation of the type they would need doesn't come up that often here as whwre we live has a massive population of elderly people. Mum has somewhere in mind should she be left on her own but it's a bedsit kind of arrangement and we came to the conclusion they would kill each other in a space that small!
What juneau says about getting an extension is quite right. But it's your Mum's home as well, and in my experience most sheltered housing is quite small. I'd go for the stairlift - some companies will also remove it for you, and give you a nominal amount of money, then they can sell it on to someone else.
It's useful to be in a large enough house to allow someone to stay overnight - my DF was in hospital last night because there isn't anywhere for someone to sleep and they didn't want to discharge him to an empty house.
Lots of sympathy - been through this with my parents
I would just mention the psychological side for your parents. My dad’s mobility declined over 2-3 years, finally culminating in broken hip. They were happy to get a few handrails around the house and a railing on the front steps but they HATED the perching stool and toilet frame. Mum put the stool out in the garden, My dad hated the zimmer with a vengeance and persisted in using sticks which didn’t give him enough support and finally led to his big fall. The point is they are visible symbols of growing levels of need - it’s very hard to see these things creeping up. We would be talking about a walk in shower, a walking frame with a seat in it and dad would be talking about getting better and back out doing his beloved garden.
We didn’t get a stair lift. Thought about it but we had carers in by that stage and they said they saw loads of them in houses they visited and very few being used. Another symbol, I suppose
I've found a local company who hire stair lifts for a very reasonable weekly rate and charge £300 for installation whichincludes removal if/when it's no longer needed, which I think is a good option initially and mum isn't totally opposed to the idea.
Prior to this dad wasn't even using a stick, although he could only walk short distances and was a bit shuffly. His issue over the last few years has been that his legs are prone to suddenly just giving way. He's had all kinds of tests and scans that have failed to find a reason for it.
This Is why I think the stair lift is the best option - the sheer unpredictability of the issue.
Thought about it but we had carers in by that stage and they said they saw loads of them in houses they visited and very few being used. That is a good point. My father has found it surprisingly difficult to use his, despite being used to using one when my mother was ill 30 years ago. Took a few days to learn to push a paddle in the direction of travel and not to let go until the chair stopped, and it's taken about 4 weeks to learn to lift a lever when he gets to the top, put his feet on the floor and swivel around so he can get off.
He has however got there, and is using it several times a day. He lives on his own, so hasn't got someone there to help him use it. And he's in his late 90s.
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