When to move downstairs

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Dear MacMillan nurse

i am so lost and bewildered by all the decisions I’m having to make at the moment

move noticed my husband is getting a large purple pressure sore on his hip. He is still in our bed upstairs. It’s important that he is there as he wants to have a shower in the morning and he is still able to do this. He also can sit on the loo still which is important for his dignity. However I’m really really worried about him getting an ulcer. He’s sleeping on our normal mattress which is firm, then I have a waterproof cover, then a cushy bed cover then the sheet, which I’m changing every 12 hours. He is wearing Tena mens but is having frequent urine leaks.
I don’t care as he was dehydrated so I’m making him drink a lot. Sorry for the grim details but I really just don’t know at what point to get the hospice to bring a bed and pressure mattress.
I’m probably trying to put off this as it feels like another step closer to the final days but I don’t want him to get an ulcer. That would be terrible.
Any advice

Annemarie- Macmillan over 3 years ago

Hi Whatever Next

Thanks for contacting Macmillan Cancer Support and welcome to the online community.

It sounds like an overwhelming situation at home for you and your husband.

We would encourage you to call the GP today for review. Pressure sores should be regularly monitored and advice given to prevent them becoming infected.

It’s unclear from your post if your husband has already been referred to the community palliative care team? If not, then we would encourage you to contact his GP or Clinical Nurse Specialist today and ask to be referred to the community palliative care team. Unfortunately, this referral process can take some time.

This team can help support people at home and many people find this kind of support reassuring and invaluable to have in place. This team can also liaise with your husband’s GP about any support or medication changes he may need going forward.

Having the community palliative care team’s support allows you also to check in with them with any concerns or changes with his condition.

However, if he does have a community team, please call them directly to notify them of your concerns.

There are different types of support available. You don’t need to struggle on your own.

There may also be some equipment which can help make things easier for you.

Supporting someone with an advanced cancer can be rewarding, but it can be tough at times too. So, it’s equally important that you look after yourself and get support too.

I see from your profile that you have joined several groups. Many people find the peer support of others in similar circumstances reassuring to have.

There is further information and support available through our online community especially the family and friends groups.

Maggie’s also offer some emotional advice and online courses that can help anyone affected with cancer.

If you’d like to talk things through a little more, please don’t hesitate to contact our nurses on the support line. We are always happy to take the time to talk over any worries or concerns you are having.

Best wishes,

Annemarie (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 send us an email.

Ref: AKR / JD

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When to move downstairs