Since my husband terminal diagnosis we were initially seen my local district nurses who went through what sort of palliative care we could expect. That included possibly being referred to McMillan or Marie Curie nurses. The first few weeks they rang and checked how husband and myself were, then as he was doing so well they said you contact us when you need us.
Well the last two days I have been speaking to the local District Nurse centre and have now been told they are at crisis point and they can only provide support for real emergencies and they don’t think this is an emergency as they feel I am coping. They are sending a District Nurse to reassess him tomorrow but they said if he requires nursing care they have to apply for CHC funding, that could be weeks ( that he hasnt got) and in any case no nurses available. I asked about McMillan or Marie Curies nurses and was told they take on a very tiny amount of nursing cases.
I am at a loss of what to do, the only option I can think is private palliative care but don’t know where to start with that. Maybe the District Nurse could tell me.
Any advise please.
Hi @summer123, thank you for taking the time to share this, and I’m so sorry to hear you’ve been having a difficult time with this, it sounds as though it’s been a really stressful time for you. Please do give our Support Team a call if you’d find it helpful to talk this through (0808 2080 888).
If you haven’t already, we’d advise you to get in touch with your husband’s GP and haematology team to explain the issues you’re facing as they may be able to provide help and support around this, particularly regarding accessing palliative care team support.
May I ask if you’re aware of any hospices local to you? I wonder if it may be worth getting in touch with a local hospice to see if they’re able to support you at all. You may also consider getting in touch with Marie Curie (Marie Curie Nursing Services) and/or Macmillan (Macmillan Cancer Support - Macmillan Nurses) directly to see if they can advise.
I hope this helps somewhat, and please do let us know how you get on. If you need more support around this or would just like a chat, we are here for you.
Best wishes,
Tanya.
Hi @summer123. I can’t believe that. We all said how brave it was asking for help, little did we know it would be so difficult to get.
@TanyaBloodCancerUK has given you lots of info. The local hospice could be worth a try?
I’m so sorry this is turning out to be so hard for you at an already stressful time.
Please keep us updated. As always I’m sending lots of love. Just wish we could do more X
Oh @summer123 I cannot believe that when professionals must know the situation you are in and what you are both going through emotionally and practically and how difficult it is to actually ask for help and also information that they are not more empathetic.
From what I have heard Macmillan, Marie Curie and hospices and private palliative care are very caring.
Yes, your GP and District Nurse sounds a good point to start.
This must be so exhausting and emotionally draining for you just at a time when you you have so, so much going on.
@TanyaBloodCancerUK has given you good advice.
Sending you both so much love xxxx
Thank you for all your replies. It was better news today, District Nurse came to reassess him and apologised for the response yesterday, he said they are definitely not in crisis but are short staffed . But he said thats not my problem, and palliative care is a priority. He has ordered a number of mobility aids and said when we get to that point he will order a hospital bed and commode. He talked about a stair lift but the time taken to install one and cost may be prohibitive. He told us to contact our GP to prescribe something to help with anxiety. He was more reassuring and is calling in next week to see how he is. How much nursing they can provide will be monitored and he told us not to rule out hospice care. I feel a bit better tonight and not too panicky, I got very weepy last night but have pulled myself together today. Thank for listening to my ramblings.
Oh @summer123 that is slightly better news from you both today.
It is really normal for you to feel panicky and to get very weepy and you do not have to pull yourself together, perhaps just let it out even if it is when you are alone in the bathroom.
We are always here for you to ramble, look after yourselves, I really admire how you are both doing.
I’m so glad you had a better day today. I was really worried about the lack of support you received yesterday. I hope it eases your worries a little today x
So glad you got better input now - so often someone can make a quick statement under pressure that is not actually accurate, but causes you on the receiving end much anxiety - very glad things are now sorting and all said sounds far more like how it should be - all the aids and hospital bed if and when needed will help immensely - if hospice care should be needed at any point do know it is the best of care specialised in this difficult scenario, I have experienced it both with close family and close friends and it is so very good. All here think of you all
Sending love and hugs your way. Thinking of you both.
Debbie x
Thank you everyone. A quick update- I am afraid things have gone further downhill since Friday. Husband was really struggling to walk all day then he had a bad fall in our downstairs loo and got himself stuck between toilet and wall. I had to ring son and son in law to help lift him and up to bed, he was lucky he only bruised his ribs. As he was struggling to get out of bed I contacted palliative nurses to say we now need more support.
They were supposed to visit Saturday but rang at 5pm to say they were busy and couldn’t make it but we were first call yesterday. I was distraught in case they let us down. But they came and were brilliant, a hospital bed, camode and other aids are coming today or tomorrow. Carers came in last night to help me clean and wash him, change his clothes and check he was OK. They are now coming in twice a day initially.
I am pleased I am getting help and support but feel sick with fear, dread and anxiety as I know the end is coming.
And it’s flipping hot!
Oh @summer123 it is difficult to know what to say except to agree with you that it is flipping hot.
However I am so impressed that you are asking for and accepting help, it is so important.
I think those feelings of sickness, fear, dread and anxiety are so natural and unfortunately par for the course.
Please use us in whenever you want to say how it really is for you and if you would like to talk to someone the Blood Cancer UK are there as well,
We are all thinking of you both and sending you so much love xxx
Using my work hat and my time working in the care sector. It is always an absolute privilege to support famlies at this point in their lives. Dont forget they are there for you too and nothing will be too much trouble.
Sending love and hugs
Debbie
Hi Summer123
So sorry to read this. Have you thought of getting in touch with social services? They can sometimes help with getting things moving quickly.
It’s very easy for them to say you are coping with the situation, but, sometimes you need a break too and this is where social services can help. They often have more ‘sway’ with health care teams and can get them in.
Good luck, it’s not easy being a cared (I know), but help should be available. I hope you manage to get some positive help. Best wishes for your husband too. Please take care, if you go under, ask them who will look after him then? Xxx
Sorry Summer123, I only read this after I’d sent my previous reply.
Xxx
Hi @summer123. Sorry to hear things have taken a turn for the worst but I’m so glad you have some help. The heat really isn’t helping anything is it! Off course all those feelings are going to be more present as he becomes poorly. Just make sure you are looking after yourself.
How is your husband with the help? I know he wasn’t to keen?
Sending lots of love x
Well done @summer123 for getting some help in. I can’t imagine how difficult the whole scenario must be for you - and for your husband, of course. I’ll be thinking of you both.
Just letting you know that we are thinking of you. Not expecting a response.
Debbie & OH xx
@summer123 Just want to check-in to see how you are doing? I have read the thread and am glad that you are getting support. I hope it is enough.
It’s not easy watching someone you love, as their life ebbs away. My dad had palliative care earlier this year and the toughest thing for me was that there was no fix. All I could do was try to make him as comfortable as possible. He seemed to enjoy having his eyes gently wiped, a little lip balm and a few teaspoons of ice-cream. Some people like hand cream, I believe. Lavender oil on a pillowcase is also very soothing.
My heart goes out to you.