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Another newbie - Carers UK Forum

Another newbie

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Hello. I live with and care for my soon-to-be-86-year-old Mum, who has various physical health problems, but is mentally pretty good. Her mobility is now very poor, and she can only get out of the house if I take her in the car or go with her as she uses her buggy or rollator. It is possible that she has lymphoma, but a definite diagnosis has yet to be made on that front (long story). I try my best but sometimes get tetchy with her, and then cross with myself, which makes me even more tetchy. We have no outside help at all at the moment.
I have a week's holiday booked in the Alps for the beginning of March (which I think I am going to need) but don't know how to make arrangements for her to be helped in my absence, and how to get her to agree to any said arrangements either. Where should I go for advice about respite help? I'm guessing I probably need to involve social services for an assessment at some point.
It's difficult as I'm not sure she quite realises how dependent she's become recently. I am the only surviving close relative (there are cousins etc but none living anywhere nearby).
Hi there, yes you would need an assessment done on Mum and one on you so need to ring Adult Social Services. Best of luck, we were constantly refused any respite for the best part of 10 years........ so you may find yourselves funding a week in a care home yourselves. Consequently we haven't seen the Austrian Alps for, errrr, 10 years!

They are in the middle of a funding crisis, just like every department, I think they must be getting bonuses for every case they successfully turn away. They will do the absolute minimum they can in every respect as a consequence.

I hope your Mum doesn't get a lymphoma diagnosis, if she does fingers crossed she responds well to treatment. You should get brilliant back up from MacMillan nurses if that is the case from what I have seen recently with a friend with lung cancer.
Hi Alison and welcome

I though I'd reply to your post as it sounds like my mum is in a similar situation to yours as regards mobility and needs me to take her out. However, my mum can get herself around the flat so if I go away I just need to be sure her fridge and freezer are well stocked. She lives in warden-assisted accommodation so she has alarm pulls in every room and a laundry just down the hall.

With an eye on the future I've looked into various forms of assistance, although so far mum has refused them all! I don't know if these would be of use to you but I found a Dial-a-Ride service (a minibus adapted for the disabled with a helpful driver), the AgeUK befrienders scheme, taxis adapted for wheelchairs, and various private care agencies such as Bluebird who will not only come in but also take the person out to the shops (mum could afford this, luckily).

I do hope it's good news about your mum's diagnosis. It must be a worrying time for you but please, please if you can, take yourself on that holiday.
Hi Alison
Call social services first thing Monday morning and ask for a Needs assessment for Mum and a Carer's assessment for yourself. You won't get it before Christmas but at least it will be in the pipeline.
Tomorrow, go on to your Local Authority website and see what they have to say about it and elderly care in general.
Whatever care may be recommended for Mum, at the assessment don't hold back on what support Mum needs and don't offer to do anything yourself.
Payment depends on Mum's financial position. (Not yours, just Mum's). If she has over £23,250.00 in cash and assets then she will have to pay for any respite care herself.
The type of care she needs also depends on an assessment. There are two types of Home, residential and nursing. If Mum needs nursing care, according to her assessment, then the local authority will pick up the nursing costs which are over £100.00 per week. Payment for the rest of the cost depends on her financial position.
You have to do your research into the local authority policies, local Care companies and Local Care Homes.
If Mum does have lymphoma then it is a whole new ball game and you are definitely going to need help to look after her. As cancers go it is pretty curable, but when I had it, 20 years ago, I had to have chemo every three weeks. I was left feeling as if I was suffering from a nasty bout of flu after each session and as soon as I began to feel a little better it was time for the next. If Mum is undergoing chemotherapy then I don't hold up much hope for your holiday in March, unless you sort out some satisfactory care for Mum and you need to get on to it.
All the best
Elaine
Bracken, Starfish and Elaine

Many thanks for your replies, which have given me lots of food for thought. Of course, the lymphoma diagnosis (or not) is crucial and if positive I will most likely cancel my holiday straight away. Also, we will then be able to call upon Macmillan help, with luck.

Otherwise, I don't hold out much hope for local authority help, and really want Mum to stay in her/our own home as long as humanly possible, but if necessary will get an assessment done in the New Year. Bluebird sounds like a good avenue to explore if I do think I'll be able to get away.

Thanks again, Alison
Some residential care homes are very nice indeed, but come with a hefty price tag. My mum's cost £1,000 a week, but it was more like a hotel than a nursing home. On a number of occasions, people came in for respite then immediately asked if they could stay and become permanent residents!!! So much depends on mum's financial situation. The best homes are not necessarily the most expensive, some smaller homes can have a really homely feel. I would suggest that without telling mum, you found out what suitable homes there were in the area, and visited them. It often takes only seconds to work out if you like it or not. Definitely only look at homes which do both social care and nursing care, in case mum's situation worsens. The ideal situation would be to find a home which did respite on a regular basis, so that you developed "shared care". This is often the best compromise, but finding the right home is crucial. I decided that I would never ask my mum to stay anywhere I wouldn't be happy to be in myself.
Thanks, bowlingbun. I do know a bit about local care homes as we had to find one for my uncle in 2013. Mum might be happy to go into the one he was in (he has since died) for a week if they have a place, and there is another nice one near us, but that's quite small so we'd be lucky to get a place at the right time. I'm sure she'd prefer to be at home, though, so unless she's a lot worse I shall try to go down the home visiting route if I do go ahead with the holiday.
Just to say that a friend of mine who has her elderly father with dementia living with her, gets away on holidays by having a 'live in careworker' for the duration of the holiday. It works well, and is no more expensive than respite care (ie, expensive!!!!) (Not sure if you're self funding.)

Please do all you can NOT to cancel your own holiday -carers need 'respite breaks' to remind them that life can still be endurable....

Glad to hear your mum is not too 'instantly hostile' to the idea of staying in a home for a week or so. One way, I think, to 'sell' respite is to say 'well, I'm having my holiday in xxx, and you're having yours in this lovely hotel for the elderly, where everything is 'on tap' and there's lots of other people and activities and cossetting by the staff....'
Hi Jenny, and thanks for your post. I haven't actually broached the subject with Mum yet - waiting for Xmas to be over really and maybe something to happen on the diagnosis front in the New Year. When the picture is a bit clearer, I shall have to bite the bullet and ask her what she thinks of some of these ideas. We are self-funding, so it might be a good idea to dress it up as a holiday for her as well as for me.
A quick update... We saw another consultant at the hospital and he says that Mum's test results are giving them different and conflicting messages, so she needs further tests. It may be a low-grade lymphoma, treatable with chemo tablets, or an inflammatory disease that may respond to steroids. So the prognosis is actually a lot better than we feared.

I have contacted Bluebird and they are coming to see us on Monday with a view to visiting while I am on holiday. Mum seems quite happy with this idea! So this is very promising, and as long as her health doesn't deteriorate in the next couple of months I shall get my little break to recharge the batteries.