Struggling

We have been fighting the NHS for over 7 years, mum has rheumatoid arthritis and we been telling her rheumatologist that something else is wrong. Mum was admitted to hosp 3 weeks ago for tests which came back as probably psp. The neurologist said because it's end stage it's difficult to diagnose a definate diagnosis because it has already progressed but it is definitely a form of Parkinsonism, mum has recent falls she now immobile unable to understand her speech and she cannot swallow just had a peg tube inserted. Doctors have now discharged mum with no support for her or us as a family. Feel so angry

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  • Your poor mum, the pain of arthritis and the awful symptoms of PSP and all the time fully understanding what is going on around her but unable to tell anyone how she feels. Dreadful for you and the rest of the family as well, watching a loved one suffering. Are you her carer and does she live with you? Make an appointment to speak to her GP. It was our GP who set the ball rolling when my husband was diagnosed. You need to have contact with an occupational therapist to provide aids that will help you care for her and that will make it more comfortable and safe for her. Our GP contacted the neuro rehab team at a local hospital and they have been very supportive. Ring social services and tell them the situation. Ask your GP to refer her to a hospice. Some do respite care to give carers a break and our hospice has been brilliant, giving advice and instruction to help me in my caring roll.

    If mum now has a PEG, I presume someone will be making sure you know what to do and will be keeping in contact.

    I don't know who her main carer is but you mention family. If it is you get everyone else involved and accept help when offered and if it is another member of the family, share their load. I know from caring for my own parents in the past, one family member seems to shoulder the heaviest load with others doing what is convenient.

    I do hope you get the help you definitely need but you may have to keep nagging so I wish you well and hope things are put in place soon.

    Best wishes.

  • Thank you for your reply mum lives with my dad but I'm her main carer I sleep at mums 4 nights a week to give dad a break. I'm not sure what to expect I can't see that mum can get any worse than she is, just struggling with prognosis no doctor will commit to anything

  • If it's PSP I don't think anyone can tell you timings of what will happen and when as everyone is different. Some can live for many years while others will go suddenly. Some recover from chest infections, others don't. So far thank God, my husband has never had a chest infection. We all have to live one day at a time and make each day as good as it could possibly be. Your mum may be entitled to Continuing Health Care. It isn't means tested. My husband got it very quickly with no problems but I know others have had to fight for it, whilst others don't get it at all. It is worth the fight as my husband now has a night carer 5 nights a week. They shower him in the morning and the days we don't have them, someone comes in the morning as I can't get my husband out of bed alone as he can't help by pulling himself up and he is rigid in the morning. Your mum's GP should be able to help. The hospice suggested it to me. It's good you can help your dad but you all need extra help if you can get it.

  • Get in touch with the PSP association. They will put you in touch with a Specialist Care Advisor who will support you in getting the help you need. They have a Helpline 0300 0110 122

  • Get on yo adult social services in you area, you must get help carer wise for your mum, xxxxx

  • Richmond1

    Like you we knew something more was wrong with mum apart from vascular dementia. She went into hospital with pnuemonia and was there for 10 weeks. We were fortunate that the nuerologist who saw mum knew about PSP so she was finally diagnosed.

    Firstly the hospital should not have discharged mum without tge right care package. Whats done is done. These are definite things you need to look into.

    1. Adult supporting care through social services

    2. Gp to refer to occ therapy, physio therapy and District nurse (is your mum incontinent if so you will also need the incontinence nurse)

    3. NHS continued care funding. Speak to the social worker at Adult supporting care who are required to assess your mum for the nhs fund. It is based on mums disabilities and is not means tested.

    4. Ask for respite help

    5. Contact the PSP association they will help you get through this.

    6. Look into Attendance allowance for your mum your dad may also qualify if not look at carers allowance.

    This disease is evil and there is no advice easily available to us. We seem to find out through forums like this one. Keep asking questions on here as someone will know.

    Has your mum a hospital bed at home, if not the social services through the Occ therapist are obliged to provide one.

    In our case mum came home from hospital luckily she was assessed for nhs funding and qualified. We had her home for about 3 weeks but it has not worked. We had carers in and out of the hse all day long and dad coukdnt handle the stress. Mum wasn't getting the care she needed. We made the difficult decision of placing mum in a nursing care home (Palliative) She went in on Monday and its the best decision we could make. She is now getting 24hr nursing care, being washed regularly and getting her meds on time.

    It isnt an easy decision to make and it may well be something your family will have to consider.

    Good luck with everything

    Opope x

  • hi i agree with the comments made by opope

    it is not an easy decision to make - my mother had RA and lived to age 73 with it(AND WITH OSTEOPOROSIS TOO) but she would not accept any help in the house and my dad was her main carer

    now i have PSP But it must be so difficult dealign with both of the illnesses at the same time 4 your mum and 4 her family

    SORRY I CNANOT BE OF ANY HELP But YOU DO NEED A SOCIAL WORKER TO START WITH AND GE T YORU GP ON BOARD TOO

    LOL JILL

    :-)

  • Jill, you are a great help to all of us by being there and fighting the disease. Thank you. X

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