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Carers UK Forum • Assessment - needs and entitlement???
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Assessment - needs and entitlement???

Posted: Tue Jul 07, 2009 1:58 am
by Jim T
I'm sorry that this isn't going to be very coherent but I've had very little sleep over the past few weeks and I feel exhausted.

My mum's diagnosis hasn't been set in concrete yet. She either has confusion and paranoia due to infection (in which case it could clear up and her condition could improve), or she is starting to have dementia (she has Small Vessell Disease). Doctors seem to be thinking more-and-more that dementia is the cause of her problems. I'll be caring for her at home alone.

I need some advice. A Community Psychiatric Nurse came to the door today, and said that she would be calling round when mum got home to offer support. The problem is that I have absolutely no idea what support she can offer, or what support mum or I are entitled to.

Similarly, I received a call this afternoon from an occupational therapist who will be assessing mum over the next few days to work out what her needs will be when she gets home. She was discussing things like help to get mum into the bath (I'm assuming she will still be able to bathe herself) and to put tights on. However, to be perfectly honest, it seems to me that mum's need are more likely to be emotional rather than physical. I'm worried about that she will be sent home from hospital with a step to get her into the bath, but with absolutely no emotional support in place. I'm eager to get mum home, particularly due to the fact that although she is only 74 she has been put in a geriatric ward with a group of ladies of 90+ years who cannot even feed themselves. Mum is receiving very little stimulation.

However I'm worried that if I take her home there will very little practical help. I don't yet know if mum will be able to be left alone in the house. If she isn't able to be left alone, will I be entitled to ask for someone to come in (or at least call in for an hour) so that I can go to work.

I'm basically looking for any advice on what help I can expect / I should be asking for when mum comes home?

It seems that your mother

Posted: Tue Jul 07, 2009 2:57 pm
by Guest
It seems that your mother is being discharged with undue haste to free up a bed, you need a proper diagnosis and your mother needs to be free of the UTI before anyone can be sure of her support needs, she may need very little support at this stage if most of the confusion, etc. is due to the UTI, a common problem with older people but one which is also particularly prevalent in dementia sufferers. Hospital admission with the sudden change of environment can in itself either increase confusion or even cause confusion in some older people. Conversely she may need a great deal of support and this needs to be ascertained before she is discharged and you are left trying to provide it unsupported.

I would not panic at this stage, insist that your mother has a firm diagnosis and a proper assessment of her mental health needs when the problem of the UTI has been resolved. My husband had an assessment of his short-term memory when he had aspiration pneumonia, was not wearing his hearing aids and was in a busy four-bed cubicle and constantly distracted, unsurprisingly he apparently had short-term memory problems, in fact, as the brain scan to diagnose his stroke indicated, his short-term memory is consistent with that expected for someone of his age, does not impact on his ability to function in any way and is frequently better than mine. Although the cases are different the message is the same, i.e. it is important that these assessments are carried out when there is no possibility of another condition affecting the results.

I would also insist on an OT assessment in your mother's home when she is well enough, this can happen before she is discharged and will give a more accurate indicator of any equipment and care needs she may have. And be prepared for the care needs to change over time, we have gone from having the ICT working with my husband to no care then a great deal of input when he also had a UTI and we were trying to avoid hospitalisation. We are currently, having reduced the care over time, experimenting with no carer for a couple of weeks, so I would try and ensure that any care package has inbuilt flexibility so that care can be increased or even decreased without having to undergo repeated assessments.

Having struggled on alone for seven years and, despite small victories, having been let down by every service imaginable after battle after battle I learned last year to simply put my foot down and refuse to budge until we got the help which we needed to enable my husband to return and remain at home. I would not allow him to be discharged until I was satisfied that we had what was admittedly second best but better than nothing rehab in place, the original plan for a rehab bed was withdrawn; when the domiciliary rehab was suddenly withdrawn I refused to give in until it was reinstated and we in fact received an additional week's input on top of the normal six weeks. It is infinitely easier to ensure that the right services are in place when someone is in hospital and the hospital wants to discharge and the LA are having to pay for the use of the continuing bed occupancy after the discharge date than it is when you have someone at home and the pressure is off the NHS and LA.

I hope that this helps, sounds a bit bossy but I do not want to see other people go through what so many of us have gone through, I would just dig your heels in until you are satisfied that your mother is ready for discharge and also with what is on offer for when she returns home and make sure that your needs are assessed as well, I wish that I had known what I now know when I started on this journey, the past seven years would have been so much easier.

Hi Jim T I think Parsifal

Posted: Tue Jul 07, 2009 3:09 pm
by Bluebird
Hi Jim T

I think Parsifal has given you very good advice. I only wish someone I had had the same advice when I first started looking after my Mum. It is all a struggle.

Good luck to you and your Mum, you are a very special son for being there to help her.


Definitely make sure the OT

Posted: Tue Jul 07, 2009 7:32 pm
by Stacey
Definitely make sure the OT visits at home. A hospital is not a normal environment for anyone and her needs may be different once she is a home.

After home visits by an OT, my husband was given a grabber and a perching stool (for sitting at the sink). So I expect once your mum is properly assessed you will be given the equipment she needs; if in fact she need any once she is out of the hospital environment.