Father’s End of Life care

[LYP2018]

Hello,

My father was diagnosed with lung cancer that had spread to the spine at the start of July. HE had an operation to remove part of the tumour on his spine and alleviate the pressure. We have since learnt it has spread to the liver as well and he hasn’t been given weeks to maybe short months to live. It’s onviously been an incredibly challenging month but we are now (hopefully) at the point where we can bring him home. The OT will be coming here tomorrow morning. We have seen him decline a lot over the past month and we are desperate to get him off the ward and home where he can have more peace and hopefully we can give him the best end to his life possible.

I’m here really to gain some insight into others experiences so I can be of the most help to my father and to also prepare my mother. I don’t live with them but I am able to stay at their house for the next few weeks - I am 34 weeks pregnant so there may be a time when I can’t be here so I really want to make sure my mum feels empowered enough and able to give my father as good an ending as possible. It’s challenging because she isn’t always confident so I really want to know as much as possible.

We have the option of supplementing NHS care with private care, so I guess this might help.

If anyone is happy to talk about this with me, I would really appreciate it.

I adore my father, he has given me so much in my life, I want to be able to give him this.

Thank you

T

[Bow-19]

It’s worth asking the OT about support from your local hospice for your dad, Mum and you. Alternatively your G.P. may know about this. Mac Millan Nurses might also be available in your area to provide support. If you do have a local hospice it’s definitely worth making contact with them. Also social services can provide support too, but I would start with hospice and Mac Millan first. Some hospice have Consultants attached to them too who specialise in palliative care, it is worth having contact with them to make your dad as peaceful as possible. Hope this helps. Thinking of you x

[LYP2018 in reply to Bow-19]

Thank you for your message, I really appreciate it. The OT did mention speaking to the palliative care nurse so that’s my plan ASAP. I will contact MacMillan as well. Thank you again, I really hope we manage to make this time as good as it can possibly be.

[miasam]

My husband died at home last November he had lung cancer twice then spread to his brain my husband wanted to be at home and I wanted him there it's not so easy as you know there time is coming to an end .what I will say is get as much help and support as you can your palutive nurse will sort all that for you mine was lovely and you could ask her anything and she will tell you. .not shore how your dad is can he still walk or will he be in bed most off the time my husband kept falling a lot so ended up having to stay in bed so I had help with washing and things in the last few weeks he didn't want to eat I tried him with everything he liked even things like custard what was soft but he didn't want anything then he stoped drinking as much till in the end he would have just sips .but please don't think he was suffering he wasn't the nurses made shore he was comfortable and pain free I found a good idea was baby monitors as if you wasn't in the room or night time when you wanted to try to sleep you could hear if he wanted anything or if he needed you . It is hard but it's also nice because it's not in a clinical inviarment. No nurses in and out less poking and prodding. More relaxed for all off you .hope this has helped you a bit take care xx Carol

[LYP2018 in reply to miasam]

Thank you so much. This was so helpful - i am so sorry about your husband. It sounds like you managed to give him a really good end to his life which I hope gives you some peace as well. This is mum hope for both my parents. He is bed bound but enjoys sitting in a chair (hoist lifted) so I really hope he gets some enjoyment from looking out into the garden rather than at a ward! Thank you again for your message, I really appreciate it.

[miasam in reply to LYP2018]

Your welcome if you ever want to talk or ask anything your welcome to message me I know it's difficult. For you and your mum and some times as time goes on and something happens and you think is this normal .your all ways welcome to ask I know sometimes when I was going threw it I wished I had someone to ask when I wasn't shore if this was something that happens take care Carol x

[LYP2018 in reply to miasam]

What a week. He is still in hospital but hopefully coming home tomorrow. He is getting more and more confused and his breathing more rattly (although that does get better with the nebuliser and tablets). I feel like we are getting closer to the end maybe? He sleeps most of the time, well dozes and then is often confused. He isn’t in pain but sometimes uncomfortable só my mum helps him adjust things. I feel so sad for my mother - her life is built around this man (and me and my sister) and she’s struggling so much to see him confused or uncomfortable. I wish I could say something to make her feel better but I can’t. She just got home and had to go back to the hospital because he was asking for her...she can’t stand leaving him which makes complete sense. I know it’s hard to watch my father decline, particularly the confusion as he’s always been so sharp and witty. He still is at times. I suppose I’m wondering whether there is anything I could do to help her? The other thing is that I know she worries that when he is at home, the doctors won’t just be on hand. I assume there will be out of hours numbers that she’ll be able to call (i’ll Be here too for as long as I can) and there will be medicines she can administer...I just worry about her being able to cope.

[miasam in reply to LYP2018]

My husband was very like that too the sleeping a lot the confusion. You can ask for a nurse to come in over night .if you need it .They will also give you lots off numbers were you can get quick response if your worried .if he falls out off bed or over and you can't lift him you can call an ambulance they will come and put him back to bed they will not take him to hospital if you have decided you want him to spend his last days at home .They will keep him pain free and comfortable .And in Dave's case his breathing just got less and less till he passed .I'm all ways here if you want to ask anything xx Carol how old is your dad my husband was 73.

[LYP2018 in reply to miasam]

I just replied more generally. My father was 72. He passed away this morning. In some ways I am grateful he went quickly and without too much suffering but obviously it’s so sad to have lost him so fast. We ended up staying at the hospital as he declined so fast, he was confused and agitated so they helped him to sleep and we were all there. It’s a comfort to know he wasn’t in pain and that we could be there. He seemed so peaceful in the end. My mother is comforted knowing that she was there and able to hold him to the end but I know she’s in immense amounts of pain right now and it’s hard to know what to say to help her. Xxx

[miasam in reply to LYP2018]

I'm so sorry for your loss you must all be devastated big hugs to you and your mum xx. Carol

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello LYP2018,

I am very sorry to hear about your father’s diagnosis, this must have been a very difficult month for you all. There have been some very helpful replies; every area has different was of providing palliative care in the community, speak with your Gp as they know what services are available in your area. As some of the others have mentioned often local hospices can provide an outreach palliative care service. MacMillan and Marie Curie also fund nurses in the community, the district nurse can advise and refer to this service. I have added links to their web sites below.

mariecurie.org.uk/help/nurs...

macmillan.org.uk/informatio...

Maggie’s centres can also provide support for your family; these centres aim to provide emotional, practical and social support and again will have information on what services are available in your area.

maggiescentres.org/

If you would like to speak with someone please give us a call on our nurse led helpline freephone 0800 358 7200

[trisha1951]

My husband died in June he was only 67. Christies in Manchester gave him 3 months to live he battled on for 18 months. He had cancer of the lung which went into his spine. In January 2018 he had an operation to decompress his spine. Although the operation was a success because it alliaveted the pain in his arms unfortunately he gradually got worse. In March we found out the cancer had spread to his brain. I nursed him at home for 8 months and the district nurses were my rock. My hubby got the best of care. I kept a journal which included meds, doctors visits, MacMillan nurse visits and district nurse notes. I had to be on the ball with everything after all this was my precious husbands life we were talking about. Don't be afraid to ask for help if you need it.

[LYP2018]

Thank you for all your kind responses. My father passed away this morning. He was rapidly declining and getting agitated so when decided to stay in a private room at the hospital. We were all with him and it was peaceful. I am glad he didn’t suffer too much but obviously devastated to lose my wonderful father. I really appreciate the support offered here. Xxx