How Do I Help my Mum ??

[colette]

I am really worried about my mum , she has crippling arthritis and has had agrophobia for about 3 years. In the last 6 mnths she has really gone downhill and when I spoke to her yesterday she is at the point that she stays in bed nearly all day hobbling out of bed to make a snack .
I live 400 miles away and last saw her in October when she looked dreadful and her flat was pretty filthy. It is clear that she can't look after herself and is depressed(understandably so). She is frightened that she will end up in a home- I had thought that for now at least sheltered housing would be better. The problem is she does not want to contact social services because she thinks by saying she can't look after herself she will be shuffled off to a home.
It is so upsetting to know she is frightened and unwell and on her own. I have spoken to my db who sees her most weeks and she asks him not to come sometimes because she is feeling unwell etc. he has said he will try and talk to her and maybe speak to a socail worker.
TBH I feel he will leave things as they are for a while at least and I cannot do this. I would really like to know how I can find out more. My mum said she doesn't think she has enough"points"for sheltered housing- she lives in a council flat. Sorry this is so long but I am grateful if anyone could tell me how best I can get her out of her present living conditions. Her Gp has written 2 letters to back her case with no success.

I don't have direct experience but I think you should speak to a social worker. I don't see any other way to change things or make things better. It must be very upsetting for you. You may find that contacting SS was a very good thing. Maybe other MNers have more experience?

I went to a talk recently about SS- apparently there really is no problem if you want to stay in your home- as its cheaper to provide care there- the problem is more if you don't want to stay in your home.
Get SS in- they should do a care assessment and OT assesment. She should be able to get some help and also some aids from OT.

I think if you request a care assessment then SS HAVE to carry it out within a specified time (this is the case for disability anyway). If they don't carry it out within this time you can throw the book at them.

Thanks Jim Jams and davros - I will try and arrange that . I would like to be there too but it is not possible. My mum like I probably would be too in her situation can be very awkward and wants to know exactly the time that anyone is coming to see her at. So she can arrange to rest beforehand etc. Is ther much variation between different part of the uk in what is available? Got to go ds is very bored under his baby gym

Unfortunately yes it is a bit of a postcode lottery. They do give an appointment time- but have been known to cancel. Give them a ring though and ask a bit more.

One word of warning. The usual method is to do a care assessment, give the minimum/not enough. You may need to appeal. My mum had to for my grandmother (she was losing her marbles and ss refused any help until my mum told them she would hold the sw personally responsible if anything happened to my grandmother- my mum is also a district nurse and says that the majority of people have to appeal to get their needs met). So don't be afraid to say if something isn't good enough. My friend has had problems recently with her care assessment for her dd so I can ask her how to go about complaining if you need me to (they are reassessing her now).

Thanks JJ . I will phone the ss down there to find out more. She has had some ot aids - chairs/ toilet made higher . A stand in shower but she has to pay for any homehelp- which is ridiculous as she can't even walk across aroom or easily get out of a chair.
Good luck to your friend .

I used to work as a researcher in a rheumatology dept before I had my children- that was 4 years ago and unfortunetly I'm now very out of touch with what's happening in the field but I do a couple of friends who might be able to give some advice. Could you tell me what sort of arthritis your Mum has, whether she's under the care of just her GP or her local hospital as well ? Also, do you know what medication she's on and how often she's taking it ? Roughly what part of the country is she in & is she receiving any extra benefits because of her arthritis ? (Sorry to fire loads of questions at you).

You could also find out about applying for Attendance Allowance (similar to DLA), get info from the Benefits Agency. Well worth having if you have to pay for things yourself.

Adell, My mum has a hospital appointment in January , so I think she is just under her GP at present . I think it is osteo arthritis. However she has mentioned a specialist of some kind coming visiting her at home and reccomending massage and water(shower) therapy. After a while they thought this wasn't helping. Although I think my mum resisted it a bit because it was done too early in the morning!! She uses some sort of gel beginning with an "m" possibly morvilat (Ican find out) and does not take anti-inflammatries(sp)because she had a nose bleed with one type. I feel she only tells me part of what the dr says , according to my mum he always reccomends more rest. This is her way of saying she is feeling down and does not want visitors disturbing her.I am trying to encourage her to try more anti-inflams as I feel there must be something that can help more. Part of the difficulty in helping her is she does not always tell me everything and is quite a private person not willing to open up , saying that she is telling me and my older db much more than younger db and ds. She is in South Bedfordshire.

Thanks adell and davros for your replies.
I know she is getting some extra benefits, but I am not sure wht they are. She also has phlebitis(sp)

I was shocked to hear that people have to pay for home help (found out at a carers meeting recently). As Davros says make sure she is receiving carers allowance.

sorry I mean attendance allowance.

I think the gel she is using is what's called a topical NSAID, basically an anti-inflammatory in a gel format. There's some debate over whether these are actually effective or whether it's just the placebo effect at work, the massaging of the cream being what makes people feel better.

It's good she has got a hospital appt for Jan, but it sounds as if she could do with some her pain being controlled in the meantime, which I know is easier said than done ( just been through this with my Mum, finally got her on medication and she is now feeling better). I think you're doing exactly the right thing trying to encourage her to try another anti-inflammatory - I'm sure that taken at regular intervals throughout the day she will get some relief (very important she takes them with food). Her GP could also prescribe other painkillers that can be taken in conjunction with them between times.

How would you feel about contacting her GP by phone to explain how worried you are about her and discussing her medication and home situation ? Depression is really common in people who suffer with chronic pain, as you say, quite understandably. I wonder whether he has discussed anti-depressants with her and how she would react to the idea ? Whilst it is important for her to get enough rest, exercise is a part of treating arthritis as it can help prevent the joints from getting too stiff (hopefully this is something the hospital will cover with her and 'exercise' in this case is extremely gentle and just about moving the joints)

The other thing you could think about doing is contacting Arthritis Care who have a helpline (0808 800 4050 www.arthritiscare.org.uk)I'm sure they could give you advice on her housing situation and any benefits she's entitled to.I hope this is of some help. If you would like to contact me for a chat please do.

Thanks so much for the reply adell. It has clarified things for me quite a bit. I had considered speaking to her GP before , I think I will discuss it with her. I wondered about the gel and how much can be absorbed through the skin. I am going to phone arthritis careline and give her the phone number.I really need my mum to talk more openly and accept some help . If I need any more info I will contact you in the future if that is ok.
Thanks again and have a great christmas .

Agree with Adell that it is very important that she eats while taking this medication. My MIL used to take steroids (as I do) but wouldn't eat and then said they made her feel sick so she wouldn't take them, vicious circle. Old folk are notoriously bad at eating and its such a basic thing to do to help with health problems. Of course I have no problem with this side of things!