Disabled people
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Caring for disabled parents as a disabled person

janlou66janlou66 Member Posts: 3 Listener
edited February 2019 in Disabled people
Hi good evening..I am having a really tough time..I suffer from Chronic fatigue and fibromyalgia..have done for over 7 years...Past 5 months...I have had to be strong because my Dad was ill..In & out of hospital..he had dementia & lymphoma.. heartbreaking 💔 to see him go from a very strong, independent man..so someone who became frail & so ill..Dad passed away 4 weeks ago.. peaceful ...However I'm now having to care for my Mam..she is 80..very weak with terrible chest infection...I am on my knees.. emotionally, mentally & physically drained...


  • AnkyieSponAnkyieSpon Member Posts: 138 Pioneering
    @janlou66 welcome to the community and sincerest condolences. I also have Fibromyalgia and chronic fatigue and totally understand, on my knees too right nowboth from fatigue and mourning the loss of my grandmother almost 4 weeks ago. I know it's easier said then done but you have to find some rest time for you I know you are looking after your mum but if you are ill or exhausted you can't do that. Do you have anyone that can help you?
    (Ankyie Spon)
    I'm a Pain Warrior
  • janlou66janlou66 Member Posts: 3 Listener
    Hi...my daughter lives with my Mam, however she works full time..my other Daughter comes & does little jobs..My brother he hardly comes down..never does any sort of caring.. just a quick visit then off..I'm here now..bec beca she is still unwell..Waiting to ring doctors..My fatigue is so draining .& Making me so emotional...xx
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @janlou66, and a warm welcome to the community!

    I'm truly sorry for your loss, and to hear of all you're coping with at the moment. Things must be tough, but I'm so glad you've reached out for help.

    Do you have any support or care in place from anybody outside the family? It sounds as though you could benefit from having a needs assessment to see if there's any support your local authority can offer.
  • janlou66janlou66 Member Posts: 3 Listener
    We had that for Dad...care package..however my Mam won't have any outside help at all..She doesn't like people who she doesn't know..very hard...xx
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    That must be tough, @janlou66. Given the circumstances, I wonder whether it might be worth giving Carers UK a call, to see if they can offer any guidance? 

    We provide information, support and advice to carers. The information and advice we provide covers a range of subjects relating to caring including:
    • Benefits and tax credits
    • Carers employment rights
    • Carers assessments and how to get support
    • Services available to carers
    • How to complain effectively and challenge decisions
    You can email us or contact us and we will respond to your enquiries within 10 working days, although it can often be sooner.

    Our telephone helpline providing information is open on Mondays and Tuesday between 10am and 4pm - 0808 808 7777
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