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Giving up?

HI everyone,

i have been caring for my wife who has neurological issues for 4 years . She has had several MRI’s ( years ago) and evoked potentials- neither gave a clear diagnosis . She has mobility problems ( walker in the house, wheelchair outside) is incontinent with retention and has spasms . She seems to have been abandoned by the neurologist who just said he didnt​ know what it was but that it was organic not functional and we would have to wait until something else happened to get a diagnosis so we wait. years. She is in bed until 4 everyday because she struggles to sit for any length of time. She is 53.

GP won’t do anything because she is " under the neurologist " but hasn’t even seen him in 2 years. The bladder issues go untreated because the GP says it’s neurological.

I feel like I am letting her down, but I don’t know what to do.

She has given up she says this is just her life now . Lying in bed. I have worked from home for the last two years to take care of her.

If anyone has any suggestions I would be very grateful.

Hello Sarah, Sorry to hear about your situation; it sounds like an horrendous situation for both of you. Three things come to mind: Contact your local Adult Social Care and ask for a needs assessment for your wife and a carers’ assessment for you; contact your local carers’ support service for current and ongoing support - they’ll signpost you to local appropriate services; contact your Patients’ Advice & Liaison Service (PALS) at your local hospital - they are there to sort out any issues that you have with your GP and/or Neurologist. I hope this helps, as a start. Take care.

your wife is entitled to help from the continence nurses.

sometimes known as the bowel and bladder clinic.

i would hope that they would do a home visit, fingers crossed.

Thankyou for taking the time to reply.

I will certainly give PALs a go! I hadn’t thought of that . We have had input from OT, it found that they were so risk averse that we were reluctant to go ahead with their suggestions . They attached some sort of lifting device to the bed that was supposed to help her to sit up unaided, but the fixings went under the mattress and created a hard lump for her to lie on, and it meant that if she wanted to sit up then I had to as well . We sent it back, and bought a bed stick from Argos. The day to day care we manage quite well, I am happy to assist with showers and dressing. We have commodes dotted around the house and a raised toilet seat and shower stool . I fitted hand rails in the bathroom.

Would a carer 's assessment provide anything else? She won’t go anywhere- day centre’s are out of the question, she can’t sit for long enough.

She gets Pip care and mobility, and we have a blue badge.

Thanks again,

Sarah

Hello Sarah,

The reason I mentioned a carers’ assessment and a needs assessment is to get you on to the carers’ support radar. They will visit and discuss what, if any, assistance is required now or potentially in the future; as well as letting you know what support is available locally and then you can choose whether or not you’re interested at the moment. Everything may be fine and ticking along but, it only takes for you something happen to you and your wife could be vulnerable and it’s just a case of trying to plan ahead - I don’t want that to sound like doom and gloom, honestly!

Take care.