Palliative care and nursing home struggles

We had to move my Mum into a nursing home this week. She went from agreeing with the decision and being excited, to telling us no-one talks to her and pleading with us to take her home with us.

I have tried to explain that we can’t just give up working but that she needs full time care.

We have cared for her for 4 weeks at home which has been a difficult situation to manage with our own families, and I live 60 miles away.

Sometimes she understands things fully, other times she only grasps some of the information.

This is following intensive chemo which has left her on palliative care and bedbound, she has lost so much weight, cannot walk or carry out personal care, she is eating only a couple of mouthfuls of food a day.

She is 68 but everyone in her nursing home has dementia wheras her own needs are as a relatively younger cancer patient on end of life care with no timescales. It is completely different.
I don’t want her to be in a nursing home. I am so sad.
It feels like there is no support for people in this situation. I can’t believe there are no care homes for patients like this.

I don’t want to suggest to the staff that they take her to a communal area as the other residents are so different to her.

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Oh @Jupiter I really feel for you, I know how much you love and care for your mum and would like the best for you all.
The differing thoughts and emotions that must be tearing you apart must be agonising.
Obviously I know all areas and council areas have different services.
Is there anyone you can speak to to see if there is a ‘better fit’ care facility for her.
I am just thinking perhaps asking her care team, social services, your GP, a local hospice, local Macmillan services or any other services at the hospital she was under, the care home, Age UK, Citizens Advice etc.
I am also concerned about you getting help to help you cope with your thoughts and emotions, perhaps your GP can help, I needed counselling.
You have been doing a phenomenal job split in 2 directions (3 with work) and you care so much.
Others might be more help to you.
Please remember we are here and if you would like to talk to someone the Blood Cancer UK support line are there on 0808 2080 888.
Be ever so kind to yourself and I think all your thoughts and emotions are very natural.

Hi @Jupiter,
Thank you so much for starting such an honest post. I hope you are okay? If you would like to talk things through please do know that our helpline is very much here for you at any point- 0808 2080 888.

I think you’ll find many others will be able to relate to the challenges you are facing with your mums place of care. I too feel that the UK lacks care provisions for a huge variety of conditions and age ranges & it must feel equally hard knowing mums not as settled.

This must al feel very upsetting and somewhat of a challenge therefore I do hope you are going easy on yourself.
Place of care should always be a family decision however we understand that logistics, practicalities and resources can leave families feeling uncertain and sometimes without much choice.

Often when we think of palliative care we think of hospices. However palliative care can be given in any setting with the right team around you.
I wonder Jupiter, have you been able to talk with mums medical team about how you are feeling about her place of care right now? Does mum have a palliative care team nurse or contact that you are able to speak with at all?

Best Wishes, Lauran

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@Jupiter I can empathise exactly with how you must be feeling. I struggled with the same emotions when I had to put my Mum in a nursing home for the last 4 weeks of her life (she had a brain tumour). The feelings of guilt were enormous and stayed with me for a good 18 months after her death , but we were unable to manage her nursing and care needs at home as they became more and more significant (our local hospice was full and had no available beds; no Marie Curie nurses available). One suggestion is if you are able to get any of her local friends (or church visitors) to pop in and see her , so every other day or so she has a visitor to look forward to, even if it’s just for an hour. Just to have a conversation with a familiar face. Not sure if she has a Macmillan nurse already assigned to her, if not you could ask for one, and they will visit her in the nursing home too (they can also then make other suggestions to you and the nursing home for things to make her more comfortable, and to let you know how she is progressing). If friends are not close by, maybe arrange for a FaceTime session which the nursing home staff can help facilitate. You are doing the very best that you can for your Mum - there is never a perfect solution - she is well cared for and safe. Will be thinking of you.

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Thank you all, I feel much better at the moment because my mum has had lots of visitors today.

We have a whatsapp group of quite a significant group of people. This is a mix of those who have been such an amazing support for us and who would actually stay with my mum to allow us time to pop to the shop, go out for a period of time or stay for a couple of days… Then there are people who are able to visit anf have a chat and a cuppa, but not who I would be asking to help with personal care.

But I am so grateful for each and every one.

So when I explained my Mums upset last night and I asked for more daytime visits where possible, people responded quickly. We have visits throughout the day tomorrow too.

She did still complain to her 1st visitor of the day and kept asking to go home (this was a cup of tea type of visitor & only 21, so I felt for her)

The staff had taken her to the communal areas today and to my relief, she hadn’t complained about the other residents’ presentation.
She is going again tomorrow.
So it appears the staff have listened to her, and us. Which is a relief.

My brother spoke to her today about why her brain is slowing down, and death was discussed, which had been a worry for me as I thought she had forgotten.

I have had my hair done today too which I haven’t done for 11 months, so I feel better in myself too which will help.

Thanks again for all your help. I know I am experiencing anticipatory grief and have read up on this. I think I will take up the offer of counselling that is being offered by my employer.


Oh @Jupiter so much has happened in 24 hrs, yes, ask for and accept help, good, whatsapp friends will be pleased to do their bit and it sounds as if she wants to talk about whatever is on her mind at that moment. Each person will bring a different rich dynamic.
I am so, so glad that you got your hair done yesterday, I don’t know why but I feel so much better when my hair is done.
Yep, anticipatory grief is natural, but so hard, and I am impressed that your employer is offering you counselling, a great offer.
You must be absolutely exhausted, you are so caring and you are doing so, so well.
Be kind to yourself and sending you love xx