Carer of loved one

Exhausted 9 months ago

1 reply

Hello, thank you for allowing me to join your community. My husband has Vascular Parkinsonism and Dementia. My husband is 85 yrs old and I have been caring for him for over 2 years now. I’ve arrived at the stage of being confused, exhausted and feeling that I’m not able to carry on.

Ive vastly researched the available information on how to care for my husband and any support that is available to me. I found that because we have savings we are not entitled to comprehensive help from the Local Authorities. Any support that will reduce the burden, I have to arrange myself. At 84 yrs old and little spare time to absorb and understand the rules, I am literally exhausted.

My husband is at the stage where he needs assistance to do everything, going to toilet, dressing and undressing, personal care, eating etc. His Parkinson’s has reached the stage where he struggles to walk because of his legs freezing. The dementia side is becoming more difficult because of “sundowning”, restlessness, anxiety with continuous questions of his whereabouts. He doesn’t recognise where he is, where the toilet or bedroom are located and repeatedly asks when we will be going home.

My question is how much longer will this horrible condition needs to deteriorate before I can ask for him to be assessed again?

Hannah11 9 months ago

Edited by Hannah11 9 months ago

Welcome to the Marie Curie Community and we’re sorry to hear about your husbands diagnosis and all that you are going through and your understandable concern to get the right care at home for him and support for yourself.

Questions about how care may be funded are understandable. This can depend on which nation within the UK a person lives in and whether their care is coming through social services, or the NHS and we hope our page on this will be helpful for you - https://www.mariecurie.org.uk/help/support/terminal-illness/care-needs/paying-for-social-care 

Continuing healthcare is based on a clinical need for some people with long-term complex health needs and is non-means tested. If you feel your husband is eligible for CHC, you may wish to talk to his GP/District Nurse to ask for an assessment. You can read more about CHC assessments here: https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

Here at Marie Curie, We provide nursing care in partnership with district nurses. We work in most parts of the UK, but the exact service we provide in each area varies according to what support the local NHS trust has decided it needs from us. We would typically get involved when they are putting End of Life care in place.. We offer free nursing care to people with all terminal illnesses. Our nurses generally provide one-to-one nursing care and support overnight in the home, usually for eight or nine hours. From what you have said it sounds like this sort of help might benefit you and your husband and give some well needed rest during the night. In some areas, we also offer care for a shorter period of time, or during the evening or daytime, as well as care at very short notice in a crisis.

You can find out more about the care and support we offer in your area, and how to get a Marie Curie Nurse, by talking to your district nurse or GP. I have shared a link below to our web pages explaining this further.

https://www.mariecurie.org.uk/help/nursing-services/what-marie-curie-nurses-do

It’s normal to feel a lot of powerful emotions with everything that’s happening, you may have lots of questions about caring for someone who has a long term illness. You can read more about being a carer and ways to look after yourself on our website at https://www.mariecurie.org.uk/help/support/being-there

You might also consider contacting Dementia UK -https://www.dementiauk.org/information-and-support/how-we-can-support-you/?gadsource=1&gclid=EAIaIQobChMI1OSuzsyKhQMVU49QBh3nrAmUEAAYASABEgKMMDBwE&gclsrc=aw.ds 

They can provide specialist support for you and your husband and might be better placed to answer some of your concerns regarding symptom management or what to expect. They also have a helpline so you can speak to a specialist nurse. Dementia Helpline -0800 888 6678

We appreciate looking through this may lead to further questions, please don’t hesitate to come back to us here on the community or through our Support Line we are here for a listening ear and for information. You can speak with us online at www.mariecurie.org.ukor by phone on Freephone 0800 090 2309.

Take care,

Jo - Support Line Officer