My dad is 75 and we found out today that his Myelodysplastic syndrome (MDS) is now Leukemia. He has many health problems and has been in hospital for 4 weeks. We know that we are looking at end of life care and he really wants to come home but no doctor is telling us what the steps are to achieve that. He lives with my mum but understandably she does not want to become a full time nurse to him. Who should we speak to? Where is the nursing care, equipment etc going to come from? How do we get the practical/logistical things sorted? It is very frustrating not knowing, any advice much appreciated.
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@maccamarie I am sorry to hear about your dad and the ripples serious illnesses have on others.
This page from this website Losing a loved one to blood cancer | Blood Cancer UK is a great starting point for information as are the @BloodCancerUK-SupportTeam
Based upon my brother’s experiences of losing his partner to cancer during covid, I suggest writing down a list of these questions and speak directly to his care team and perhaps using the NHS’s own guidelines here: NHS England » Palliative and end of life care
Also contact your local patient support group at the hospital as they can be a great source of practical advice.
I understand the great strain this is putting on the whole family unit, including your Mum, but keep talking and supporting one another and give your Dad the time to talk as well.
I hope this has helped and as they say here, you always welcome on here as someone will have been on the same journey as you.
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So sorry to hear about your Dad and not knowing how to navigate steps to get him appropriate end of life care must be so frustrating. Firstly I’d check if there is a Macmillan unit in your Dad’s hospital as they may be able to help with your queries. Based on my Mum’s palliative care situation some years ago, there will be a designated hospital social worker who may be tasked with coordinating care support for when your father leaves hospital. However as we know, there is a significant gap in care services in many locations , so it may be challenging to get support in place quickly. I hope you get things sorted soon. Sending you a big hug
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Hi there
I believe first port of call is the GP
“Your GP can arrange for community nurses to come to your home and provide nursing care for you there. You may also need specialist care from community palliative care nurses who visit you at home to”
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Thanks so much for having the courage to post @maccamarie it must be such a difficult time for you all accepting this is where your dad and you all are at.
I might have known that other wonderful forum members would be quick to support you.
The only other possible avenues I can think of our PALS (Patient Advice and Liaison Group) at your dad’s hospital or your local hospice who are usually not just there for in patient care.
The Blood Cancer UK support line as has been mentioned are a brilliant source of information
I will also copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses for you.
We are here for you all, I expect you might all be processing this situation in slightly different ways, with slightly different thoughts and feelings and that is natural, there is no right or wrong, perhaps care and communication are the key.
Be very kind to yourselves and this is the one place where you can say how it really is for you, please do keep posting xx
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Hi @maccamarie.
I have just read your post and other replies. I echo everything that’s been said already.
I hope some of the information provided helps you to get a little closer to bringing your dad home.
I can only imagine how hard it is for you all.
Please keep posting on how you are doing.
Take care of yourself and each other X
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Dear @maccamarie,
I am so sorry to read your post about your Dad, I can only imagine how devastating this must be for you and the family.
The ward team should be helping to navigate this, has your Dad been seen by the palliative care team? They would talk to your Dad and also you as a family about his wishes for end of life and begin to get the wheels in motion for an at home set up. You should be in touch within the hospital with a social worker and an occupational therapist who would help to get equipment in and organise a package of care (care for at home), a package of care can be up to 4 times per day and would absolutely take the pressure off your Mum. If none of these things have been mentioned I would encourage you to talk to the nurses on the ward who should help navigate this with you. There are services in place which can help get your Dad home quite swiftly so you shouldn’t have to try to set things up on your own.
If you would like to talk through things with the nursing team here please do call us on 0808 2080 888.
Do take good care,
Heidi J (Support Services Nurse)
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Thank you to everyone who took the time to respond to me, you are very kind. Heidi’s response was spot on. We met with the ward manager and consultant and palliative care now have a fast track discharge process underway so he should be home by Wednesday.
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I was so pleased to read this @maccamarie and I’m sure you and your family must feel better now you know you can get him home.
Please keep us updated on how things are.
Take really good care of yourself X
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That’s really positive news @maccamarie, please do keep us posted and look after yourselves