COPD

LorraineE 2 years ago

1 reply

Hi, I've been caring for my mam now for about a year when she admitted she was struggling to cope, she was diagnosed with COPD about 3 years ago. This past year has been so difficult, a couple of hospital admissions, O2 levels of 65/66 she's now on 5 litres of oxygen, 24/7, is very frail, also registered partially sighted and has a heart condition and an aneurysm in her aota. She's house bound now, struggles to make herself a cuppa and has been hospitalised with pneumonia or fluid on her lungs, with O2 at 69/70. These have increased to 97 but only after hours of 15 then 10 litres of oxygen. We're watching her fading away before our eyes, it's heartbreaking but how do we get help for her to stay at home, she doesn't want to be in hospital. Any advice would be appreciated, we're list xx

Elin 2 years ago

Hi LorraineE and welcome to the Marie Curie Community. Thank you for sharing your experience with us and others. We are sorry to read about your mam’s diagnosis and all that you are going through. It sounds like the past year has been difficult and witnessing a loved one throughout this experience can be overwhelming. It is understandable to find it heart-breaking and it is important to take care of yourselves during this emotional time. Hopefully others here on the Marie Curie Community can share their experiences and insights, perhaps talk about ways in which they managed similar situations.

It’s understandable that your mum would like to be back in her own home as soon as possible. You may want to begin talking to the ward staff about this as there are different care options that they may talk to you both about. They can also make a referral to social services. Social care can offer day-to-day practical support to help with everyday tasks and personal care. A care needs assessment is carried out by social services to find out what help and support you need including healthcare, equipment, help in your home or residential care. If you would like to find out more information, our webpage can be found here: www.mariecurie.org.uk/help/support/terminal-illness/care-needs/social-care

Here at Marie Curie, our nurses provide end of life care for anybody living with a terminal illness. Our nurses generally provide one-to-one nursing care and support overnight in the home, usually for eight or nine hours. 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. These services do vary depending on the area you are in and to access the service, it is through a referral process made by a healthcare professional, normally the District Nurse. You can find out more about what our nurses do here: https://www.mariecurie.org.uk/help/nursing-services/what-marie-curie-nurses-do

Planning ahead can help make sure that other people know what you want and may make it more likely that your wishes will be understood and followed in the future. It can also give you more control over your future treatment and care. More information about advance care planning can be found here: https://www.mariecurie.org.uk/help/support/terminal-illness/planning-ahead/start-planning-ahead

It is important to take care of yourself during this time and if you ever feel like talking about your experience, we are here to listen. The Marie Curie Community is a safe place for you to share as much as you feel comfortable sharing and ask any questions. If you would like to speak with us on our Support Line, we are here for practical information and emotional support on Freephone 0800 090 2309 or by email support@mariecurie.org.uk.

Take care,

Elin – Support Line Officer