Dad doesn't want hospice care

My husband died recently in a hospice. There were people  who were there to have their medications monitored and balanced to make them comfortable enough to go home without pain or other side effects. After several weeks of bouncing between hospitals and gp surgeries whilst my husband was on a break from chemotherapy, his final days in the Hospice were wonderful. He was comfortable,  pain free, able to eat and drink normally for a few days  The family were able to chat to him inbetween rest periods and be his family rather than his carers. He died peacefully and with dignity . Hospice care should be available for everyone in the final stages of this dreadful disease. 

Thank you trentlady. 

That's lovely to hear that his final few days were met with him chatting and eating! I've heard alot of the time people are in and out of consciousness so that really is lovely to hear. 

I don't think I'm strong enough mentally to be able to do it at home. I'm not coping very well right now and I'm not particularly doing alot. 

I totally understand your fears. It is a lot for anyone caring for someone at the end of life, let alone with young children. Have you tried talking to your Dad about your anxiety and fears. It may be best to be honest with him. It doesn’t mean that you don’t love him, you will just be placing him in the hands of people are qualified to deal with this. I asked my husband, who has stage 4 lung cancer, what he would like to do and he has opted for hospice care as he knows I would struggle when the time comes, and he doesn’t want our girls ( adults really that still live with us) to witness any unpleasantness. This has taken en enormous load off my mind. We are now in constant contact with our local hospice and they have been absolutely brilliant. He hasn’t actually been there yet but they have visited us at home many times and helped with pain management and given us all sorts of advice. I can’t stress enough how supportive they have been. They have a full team of professionals, from community nurse, doctors, councillors. You can as his hospital team to refer you, if they haven’t asked you already.

Thank you Donna! I'm glad you and your husband are both on the same track and that he is open to the hospice care. 

How is he currently doing? How are you doing, too?

I have tried speaking to him even just about the community team, as they can help with his pain but he doesn't want to know. He's currently only on co-codimol for pain management and it's now no longer working. We visited a hospice a few months ago as his oncologist referred him and he wanted nothing to do with it. We have since moved so are no longer under that hospice team. 

He's a Yorkshireman and an ex policeman so he can be quite stubborn lol 

Hi, I don’t think it matters where they are from, they are all stubborn lol. But yes, Yorkshire man and ex policeman! I can see the difficulty. It’s obviously worrying you. I know it may sounds harsh but I think you need to make your Dad see things from your perspective. You are a working mum, soon to have another baby to look after, that in itself presents challenges, new emotions, less sleep. There is no skirting round it, baby’s are adorable and we love them unconditionally, but let’s face it, it’s hard work! What if Dad becomes ill around that time? I wouldn’t be able to do it. Seems like you have been so supportive already and am prepared to be there for him. Maybe start by reiterating, you will still be there but you don’t feel emotionally strong enough to have complete responsibly for when he gets really poorly. I’m dreading when that time inevitably comes. Your not letting him down or being selfish. You do have to consider your well-being also. If you don’t feel able to express this, you can always contact your new local hospice. Your GP practice should be able to tell you where this is. Also, Dad should have a CNS nurse (cancer nurse specialist) assigned to him. They are generally present when you go for oncology appointments. They can refer Dad. You can always contact them first, tell them the situation. They will always come and give him information so he and you can make an informed decision. Sometime it takes an outsider to explain how it would work. I think they will tactfully, ask him if he thinks you will cope, with babies to look after. Maybe get him to see how it would impact you. I have to say, at first I felt a bit hurt when my husband decided it would be best for him ( think he may just be thinking of us) but I feel it’s right for me too. I don’t think I could handle it, if I’m completely honest. And like I said, the hospice of CNS nurse can review pain relief and adjust accordingly. My Hubble was taking into A & E yesterday and they’ve kept him in. Hopefully know more tomorrow. As for me, I fluctuate. Ok one minute, emotional the next. Your doing a very brave thing but please look after yourself. No one will judge you. You don’t have to go through this alone. Help is out there x

Hi , It doesn't sound at all selfish, you can't lift him without endangering your baby and yourself and you will need to be careful when the baby is born.

Has your dad been referred to the hospice for care at home? If not, do ask his GP to refer him as there is so much help available in the home that the hospice can provide. It might be that, as the time comes closer, he could feel he needs to be in the hospice, but until then, make a plan with the help of the hospice and his specialist nurse. Do let me know how it goes.

hugs,