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Hospice or home?

Hannah271990
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Hi all..

My mum got diagnosed with lung cancer in october 2021. She had 2 tumours removed but in january she stopped walking due to pain in bone and they discovered the cancer had metastasized to her bone and  skull.

Since she has had 1 session of radiotherapy and had a metal rod inserted to strengthen the bone as it was fractured. 

She is still unable to walk and cannot even sit up. She has now been moved to a Marie Curie hospice and is on multiple pain relief including anaesthetic into her leg. She has developed bedsores stage 2 on her lower back and has to have dressing changed twice a day.

We are waiting for a scan to determine how effective the radiotherapy has been but the nurses are saying if shes not strong enough for chemo she wont have it.

She just lies there and drifts off every now and then

Shes in severe pain so has lots of meds...i think its best she came home as all that shes having is dressing changed and pain relief. Shes saying she feels medical care is better in the hospice...

Given that she may not have long left..what is best

  • Hello Hannah271990

    I'm sorry to hear that your Mum's condition has deteriorated over the past few months. It sounds as if it's a really difficult situation for you both. 

    It's good to hear that your Mum is receiving care at the hospice. I hope that they are able to keep her comfortable and that her pain is well managed. 

    It's understandable that you want to make sure that your Mum has the best care through this period of her life. Have you discussed any concerns that you may have with the hospice staff? It may be that they're better able to manage her pain relief in the hospice than they could at home. Or it may be that they're able to offer some hospice care in the home environment but either way, do speak to them about your concerns and questions. 

    If you'd prefer to chat with one of our nurses you're welcome to call them on 0808 800 4040, Monday to Friday 9 am to 5 pm. I'm sure they will be happy to listen and offer any advice and support that they can. 

    Whatever choice your Mum makes for this period of her life, I'm sure that you'll support her and I hope that in turn there are others around who can support you. Do keep in touch here on the forum if it helps to have somewhere to post or to chat with others. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline


    Hi Hannah, 

    I am so sorry to hear that your Mum's health has deteriorated so much. This is always such a difficult decision. Many people would prefer to die at home, surrounded by their loved ones, but it depends upon the circumstances surrounding those who would care for them. It does take a lot out of you and can become more difficult in the latter stages. You have to be sure that you are strong enough to be able to cope with this and that you would have some help from family and friends to care for your Mum.

    As Jenn has said, you may be able to get someone from the hospice to help with home care, or you may get carers coming in up to 4 times a day to see to her personal needs. In this case, her practice nurse and the district nurses may take over her pain control. You need to disuss this with the hospice staff and see what they feel would be best for your Mum. 

    Remember, that this can be a 24 hour a day task and there can be a lot of additional laundry to contend with. If she needs someone to see to her needs at night, you may manage to get a Macmillan nurse to sit with her. She may also need some build up foods, which can be prescribed for her. All of these things need to be arranged before you bring her home.

    I do hope that you come to the right decision for both of you - there really is no right or wrong way.

    Please let us know what you decide and remember, that we are always here for you.

    Kind regards,

    Jolamine xx

  • Offline

    Hi Hannah,

    Firstly I'm really sorry to hear about your Mums diagnosis. 

    I came accross your post and it was so similar to how my Mums illness was that I wanted to reply. 
     

    My mum was diagnosed with bladder cancer in October 2021 which had spread to her lungs, liver and spine. Like your Mum she had radiotherapy and was on a lot of pain medication. 
     

    She went into a hospice in November and we'd planned to get her home - bed, care package, everything was in place. Sadly she deteriorated a lot quicker than we'd hoped and so in the end we couldn't get her home. She passed away just before Christmas. 

    Before she passed we chatted about getting her home and actually, like your Mum she felt the medical attention was going to be better in the hospice and I have to say looking back it really was.  She needed a lot of breakthrough medication and looking back, I feel like not getting her home was probably a blessing for her. The hospice staff were amazing and were able to manage her pain in a way that I don't think would have happened at home. They could ask the drs for alternatives when something wasn't working well, could give her things to calm her and were always on hand when she needed something. Latterly she couldn't get out of bed but the staff were so attentive, changing her position etc and giving her care that I'm just not sure would have been the same for her at home, as much as we would have tried our best. hospice staff are just a different breed of amazing people with so much experience. 

     

    Whatever decision you come to together will be the right one for you and your Mum. It's the most difficult thing to go through and horrible decisions to have to make. 
     

    I'll always feel sad that we never got my mum home but knowing how well looked after she was made a stressful, desperately sad situation a wee bit easier to deal with and meant that as a family we could spend time with her in a calm, supportive environment without having to wait on district nurses to arrive etc. 
     

    I hope this helps and that your Mum is comfortable. 
     

    Wishing you all the best,

    Kat 

     

     

     

  • Offline

    Hi 

     

    Im not sure what you mean about sue ryder..i dont know what that is..im asking about MY mum

     

    Are you confused?

  • Offline in reply to Annan

    Hi Kat

     

    Im really sorry to hear about your mum, it seems that we both got the awful news at the same time. Its scary how quickly life can change, and i wish she could be just slightly more mobile so we could take her to the beach or do something nice just 1 last time.

     

    Its causing lots of fallouts within the family as everyone has their own opinion. We are going to have a meeting with the team at the hospice next week and see what is available. I learned that if you are expected to live 3 months you can get fasttracked and recieve a carer overnight and 3 or 4 times a day at home free of charge..so we will see what we can do. Scary watching her deteriorate...

     

    Thank you for all your help and advice its conforting to know that the support and care your mum got was of a high standard.

     

    Hannahx xx

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