Who needs family....???

lulubell69

Hi all
I've been a member on here for years, I read everyday but don't post much. However, I'm now at the end of my tether and need to vent my anger...sorry folks. I don't expect any solutions from you but I need to tell someone.
I married to a lovely man who works full time, is busy renovating our new bungalow ( top to bottom) and looks after me as I have severe RA. I was medically retired from work two years ago ( aged 44) and my condition is currently uncontrolled as all the major drugs have failed. This condition had ruined my life as I am unable to do most things I used to take for granted, like going out alone or getting up on a morning and walking. Anyway, we also have a son with Down's syndrome, ADHD and autism, aged 24, and the whole family (younger daughter and son) are now reaching breaking point. The stress and strain is terrible and impacting on everyone in the house hold. I rang social service re respite for our son in May and it is only just being looked into now, the cost is an absolute fortune so we don't know if we can afford it, that is of course if there is any respite places available. To top it off, my sister has just phoned me to have the usual moan about her terrible life because she has to work. When I tried to tell her I was struggling coping she promptly told me it because you're not working, get a job!!! Five minutes later my mother phoned, (once in a blue moon) to pass on a message form someone, when I told her I was close to breakdown and really struggling with my RA, disabled son, caring responsibilities and building work going on she cut me off and said "or are you, Tara" and put the phone down.
Does anyone else have a family who don't care. I don't mean don't understand, I mean don't care. None of my family has ever, not once, helped me or my son in any way but are always ready to criticise or tell you how it should be done.
Thank god for my husband and children.
Sorry for the long rant but thanks for reading.
Lesley

JamesFoote

Lesley I Amos sorry to hear this.

It is. Wry hard for family to understand at times after all they are not in your life 24/7.

Why not ring the number above on the forum they will help.

I did the one o one that arthritis care run and though I was told I am very forward at dealing with doctors and hospitals etc it was very good to talk to some one that understood what I was owing though.

I wish you luck, ring the number and ask for help, you may not get some one calling at the house but a phone call can really help.

James

stickywicket

((())) Of course it's OK to 'vent your anger' on here. If nothing else we can always provide a safe place for that.

It must be truly awful if you've failed all the major DMARDS and anti-tnfs. What do you take, then? How, on earth, do you cope?

Lesley, it sounds as if you have a good husband and family that you two have created. I know it sounds harsh but, for now, try to forget about your mother, sister and any uncaring ones. They may either climb on board or stay where they are but you can't carry them. Later, when you're in a slightly better place, you can maybe try giving them some AC leaflets or showing the The Spoon Theory or There's a Gorilla in my House but, right now, you need to look after number one.

Ring Social Services again. Explain your situation. Things get lost or mislaid and they are very strapped for cash and personnel right now. If you just leave things nothing will happen.

Also get in touch with your rheumatologist to see if there are any other treatments you can try. I know it's a forlorn hope but if you don't ask you don't get. There might be some combination you've not done before.

And keep talking to us because, whatever your mother and sister are like, we do care. And we understand at least part of it.

salamander

I'm all for direct action and in your shoes would consider contacting either my local councillor or the one who is in charge of health and social services, mine is called Executive Member for Health and Well Being. Every council has councillors who oversea particular departments. You can email them or go to their surgeries which should be advertised on the council website. Failing that, get on to your MP. I'm kind of failing to understand why you are paying for the respite care. Isn't there any help with it?

theresak

Lesley, I'm so very sorry for the circumstances in which you find yourself. I can't begin to understand how you cope with uncontrolled RA, and everything else which is going on in your life.

Is it worth going to see your GP re the respite care for your son? A good GP should really try to help you get things moving.

Your family clearly can't or won't recognize how much you have to cope with, which is awful, but please just focus on yourself and your lovely husband & children - try to forget about the rest of your family for now. Is there a good friend you could call on for some support?

I do hope you can find a way forward.

dreamdaisy

Ignore the rellies, they are out of their depth when it comes to you and your circumstances, don't even talk to them about matters. Wait for them to ring you and, if they do, say the nowt about your family circumstances and don't offer much in the way of conversation. You don't need them but you do need your family, and your family needs some help, yes?


Firstly, go to see your GP and explain how tough things currently are, especially with your oldest son. That is a terrible mixture of problems he has and the strain on you must be immense, especially now he's an adult (in terms of age). Your GP may be able to refer you as an urgent case to social services (I don't know because I have not had that much contact with mine) and he might also be able to help with anti-depressants and better pain relief. You need something to bolster you and this may be one way. I have taught children with ADHD who were on Ritalin - could that be a possibility for your son or not?

Secondly, do your other two children still live at home? If so do they help with their brother in any way or could they increase their contribution? Would your husband hold back on the building work for a while just to give everyone (including him) a break? I had the minimum of domestic disruption lately but it was tiring while it lasted.

Thirdly, please ring the Helpline on here, they are good listeners and totally impartial and they may have some useful suggestions.

Fourthly, come and talk to us when you get the chance, we're usually around to listen. DD

lulubell69

Oh what kind and caring people you are. Due to word constraints I couldn't fill in all the details fully, so I'll tell you a bit more.
My mother has never cared, (as a mother myself I find this incomprehensible) I've tried desperately over the years to have a good relationship with her but when I had a breakdown years ago and asked her for help with my son her answer was 'you had him, you look after him' I should have learned then really. She has done some terrible things to me over the years.
Believe it or not, my sister (twin) also has RA, not as severe as mine but it has nearly always been controlled by drugs. She thinks because she works everyone with disabilities should work!! The luxury of going to work is one which many of us can only dream about. I worked full time, went to university for 6 years part time, looked after my family, renovated a house... And that was when the RA struck. A week after my final exams. Doctors said it was stress related.
I am currently taking 30 mg of methotrexate (2 x 15mg injections) and prednisolone and lots of tramadol, oramorph and paracetamol. I have suffered from depression, anxiety and stress on and off for years but choose not to take drugs as the one time I did I couldn't function. Although the meth isn't that effective, the steroids make it a little easier. I have has 3 major anaphylactic shocks to the last 3 meds, nearly died each time. My lovely consultant is currently trying to access a new drug direct from the pharmaceutical company as NICE rejected it on the basis of cost.
As for social service, a social worker came out on friday, and oh dear, I really did let it all out. In between rants, sobs and apologies I managed to express my thoughts and feelings. She said she didn't realise things were that bad but she is looking into respite for my son. It's so wrong that you have to scream and shout before you get any help. As for respite costs, indeed you have to pay, the gov has cut many millions from services and for many now the luxury of respite care for disabled loved ones is out of their reach. The cost is way way above the rate of dla. In fact, nearly all services (day centres, transport etc) for adults with disabilities have to be paid for. Is it any wonder that carers are breaking down.
Can't stop the building work I'm afraid, I have been sleeping in the living room for 3 months as we don't currently have a bedroom but hopefully that is due to be completed in the next few weeks.
My son and daughter do their best, but my disabled son is my responsibility not there's and all their lives they have been carers, first for him and then also for me. I feel so guilty for that.
Lots, lots more going on in my life, but I feel so much better when I read you thoughtful and kind replies. I have a good life really, just going through a bit of a rough time at the moment.
Feeling so much better today, off to hospital now for bloods. Sorry for the long story.
Thankyou so much.
Lesley

LignumVitae

Lesley I read your two posts and my jaw dropped - how amazingly strong have you been to keep going all this time?
If you get no success with social services very soon then I heartily recommend contacting your MP. I had great help from mine a couple of years back regarding an immigration issue for Mr LV. In the end, they didn't do anything but told me what to say and do to get it sorted and 48 hours after actioning their suggestion Mr LV had his visa (after months and months of waiting) - they know how systems work and how to get them to work fast.
Sending you lots of (((((())))))

lulubell69

Salamander, Thankyou for your reply. In your post you stated you cannot understand why I have to pay for respite care. Maybe this will help to explain this better.
I have just picked up my local paper, the sunderland echo, and the front page story states "disabled day centre puts costs up by £67 per week." A lady accessing a day centre two days a week now has to pay out of her benefits £87 per week, increased from £20 per week. I believe this does not include transport to and from, another £20 per day to use the day centre transport. Is it any wonder that the user numbers have reduced dramatically, which will possibly result in the closure in the near future due to low numbers of users.
Now then, add to this to a couple of weeks respite a year,( don't have exact figures but judging by the above increase (due to gov cuts) it will probably be out of the reach of most families. Incidentally, When my social worker asked how many days respite I would like, I said 1 week a year and possibly two nights a month she was absolutely horrified and said ohhh that's a lot you won't get that much!!!!
Let's not forget, when you have a severely disabled person in the family, the principle carer most often than not cannot work. Therefore, very often the family is living on the breadline and rely on the persons meagre benefits for extra costs. As most, if not all people accessing these services have severe disabilities they therefore rely on benefits with no way of working their way out of poverty. Therefore the family often have to subsidise their lifestyle, ie cost of holidays etc.
So there you go. With services reduced and now out of the reach of normal families is it any wonder that carers are reaching crisis point.
Rant over
X

lulubell69

Forgot to add, DD, my son takes dexamphetamine (similar to Ritalin) for ADHD and thyroxine for his underactive thyroid. I feel rather guilty now saying I'm finding it hard to cope, he's a lovely lad. Bless him.

dreamdaisy

It's not a given that when a woman gives birth the mothering instinct will kick in - she sounds as though she had children to please others but probably didn't want them herself. In your shoes I would cut her out of your life - you are biologically related but as she doesn't want to know so why should you? There is a grain of truth in the fact that your son is your responsibility but with that list of difficulties it is far too much for you and your husband to manage, especially now he's an adult. There have been swingeing cutbacks due to widespread abuses of the system but I agree with LV, contact your MP (ask for a home visit, it can be done, well it is around here) and he may well be able to expedite matters for you. DD

PS. Ah, I see, I am sure he is a lovely lad in his better times but when the worser ones hit then it must be so very, very hard.

bubbadog

Lesley, My family is broken, similar to yours. My mother hardly visits, we see her Birthdays and Christmas and occasionally a couple of times in between if we are very lucky. She is wrapped up with her Boyfriend, the crazy thing is she only lives just outside of Stratford upon Avon a 35 minute drive from my house. As for the other parent (he does not get called his title!) I cut him out 8 years ago, We had a massive argument and he was so nasty... sorry I can't talk about it anymore. My sister is the only family member I see, she is great and does what she can to help as she has her own family and works full time. My Next door Neighbour are more family to me, Sheila comes round most days, she makes my lunch and any help I need she will help and it's hard for her as she is in her late 60's. Families are complicated things!!

stickywicket

Lesley, here's a thought and possibly one which reveals my utter ignorance of such matters.

When I did Riding for the Disabled a lot of my fellow pupils were young adults with learning difficulties, sometimes with physical ones too. One or two of them lived, not with their parents, but in special accommodation ie a community of two or three such adults and carers. I was a bit surprised at first but they did have a lot of contact with their parents, just didn't live with them. I'm guessing this would, roughly, be on a par with the expense of having an aged parent in a residential home but might be worth a thought. It would yield the additional peace of mind that, should you and / or your husband have to go into hospital, he would be cared for in familiar circumstances.

LignumVitae

I've observed a similar mother-child relationship with my husband and his delight of a mother. It's so hard to see him wanting a 'normal' relationship with her and to see that she cannot give that. It's easy to sometimes look at the situation and wonder why he doesn't just give up and ignore her behaviour and comments but then it's his one and only Mum and as imperfect as she is there must always be a bond there at least from him to her if not from her to him. I really hope you can find a way to ignore the worst of her behaviour and find a relationship which suits you and feels right for you even if it isn't the one you would ideally have. Having had very frank discussions with Mr LV about it his aim is to maintain a relationship distant enough so that her behaviour won't hurt him but active enough so that in the event of her death he won't wish he had behaved differently or given her more. It's a hard balance to strike I think.

Following on from SWs suggestion, I have a friend with an autistic sister in law who is very happily living in such accomodation.

salamander

I'm really shocked about the costs you talk about, lulu. I know there have been cuts but didn't realise they were having this sort of impact. I would definitely be on the phone to my councillor to see if any more money can be squeezed from the budget. I really feel for your situation.

lulubell69

Than you all
I'm not ready for my son to go into full time care yet, but you don't know what the future holds. I asked sons social worker for 29 days a year respite, 1 week and one short weekend a month. today I was told my son would get 14 days and for that I would have to pay £1,496 a year out of his benefits as it is means tested. The full cost is £165 per night!!! Who could afford that?
The cuts in services and huge hike in personal contributions are having a massive effect on the most vulnerable and disabled in society and their carers. I can't help feel that pretty soon there is going to be an explosion of people entering the care system on a permanent basis as the carers will be unable to cope with the demands put upon them, both physically and financially.

salamander

It is a lot of money but would it be worth it for you? Lots of people would pay that for a holiday (not me, I might add) but it would benefit the whole family, from the sound of it.

stickywicket

I think Salamander makes a good point. It would be a holiday for everyone, most of all you. It would also give your son the valuable experience of being away from home which all young men need. Will his benefits cover it?

lulubell69

Thanks for your thoughts. It is a lot of money but we need a break as much as my son needs a break from us. It will be paid for from his dla which I suppose is what it's for - extra expenses occurred because of disability. However, I wonder about what people who couldn't afford it would do.
Just saw my rhummy who is hopeful that I can start a new drug from America.
I'm so so tired. I feel like I want to go to bed and not get up.
Thanks again for you replies.
Lesley

stickywicket

DLA is there for us to use however is best for us. For years I used mine for my Motability car. I don't know how it works out now but back then it took the lot but was worth it for the independence it gave me. Now that I no longer drive it goes on all sorts of things – taxi fares sometimes, my husband's tax disc as the car is for both of us so not eligible for tax-free driving, the very occasional hotel room because cheaper B&Bs are rarely accessible for me. Disability is expensive, no doubt about that.

I'm so glad it seems you'll be able to start the new med. That is good news. Please keep us informed as to how it goes. How is your bedroom progressing? You'll feel better when you can sleep properly again.