Relative In Nursing Home

Hi FrankieMCR92,

Thanks for getting in touch and a warm welcome to the Online Community. I’m Heidi one of the Cancer Information Nurses here on the Macmillan Support Line.

I am sorry to hear your Grandma is in a lot of pain and your difficulties with symptom control at her nursing home. This must be distressing for you as a family. It is understandable that you would want to make sure she has the best possible care.

When anyone is being cared for in the community there are key teams that can be involved in her care, We would suggest that your loved one should be referred to a community palliative care team. Your grandma’s GP can do this. The palliative care team includes a range of professionals who can support your grandma and you as a family. This is the support people are usually thinking of when they refer to Macmillan Nurses, as Macmillan nurses are often part of this larger team. Sometimes the nurses in the community palliative care team are called palliative care nurse specialists, they do the same job as Macmillan nurses, but it may be just that the funding is organised differently in your area.

The community palliative care team provide support for people that might have complex needs due to their diagnosis, and are cared for at home, or at the place they call home, such as a nursing home. Even though there are qualified nurses at Grandma’s nursing home the community palliative care specialist nurses usually can still support.

You could ask for an urgent referral for symptom control. The palliative care nurses can help support the nursing home and provide some education about your grandma’s needs if needed. Most nursing homes welcome support from the palliative care team.

If you are concerned grandma’s care needs are not being met you could start by talking to the nursing home manager. It is okay to ask about whether the staff have experience in palliative care and caring for someone with an advanced cancer such as acute myeloid leukaemia. If you still have concerns about her care then do get in touch with her local adult social care team, and the palliative care team once they are involved.  

It is important that anyone caring for your grandma are able to recognise the signs and symptoms of pain or discomfort, despite your grandma not being able to express this verbally. Ongoing assessment of symptoms and appropriate management is vital to ensure your grandma’s dignity and comfort at this time in her life.

I am glad you found our online community, you may have also seen our friends and family forum, sometimes talking to others that understand can be helpful. You can also check our webpage to find details of support and information organisations in your area.

You sound like an amazing support to your grandma, remember to look after you too.

I hope the information provides a starting point. Please don’t hesitate to get in touch again if we can support you further.

With best wishes

Heidi

Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

Ref/  KE/HC

Hey Heidi, 

This is all super helpful and informative, thank you for your time and for giving such a through response. 

I'll be sure to share this with the rest of the family, my mum has power of attorney so she might speak to the GP this week. I will also encourage her to ask the question about if there is a cancer specialist nurse in the nursing home or anyone with such experience. It's appreciated to know we can ask such a direct question. 

We have already been told its a matter of weeks, she's already been off treatment for 2 full weeks. In the last 24 hours she has lost the ability to speak too. We know it's not long, we just don't want her to be in such pain. 

Thank you again, for your time and sharing your knowledge.

Much love

Frankie and family