A dreadful dilemma

Sorry to hear all that your wife and yourself are going through.  Have you spoken with the oncologist or oncology nurses. They know how things develop and how quickly.  Is there medication that could be given to help with the agitation?

Being at home for my husband was an option, it meant dedicating time to whatever is needed, pretty much 24 hours a day. I slept in the room also as I felt I needed to be close. It was difficult as there's a huge responsibility on you but I found support from medical staff was good.

How much medical support would there be in a home? Could you stay there as long as you wanted to - day or night? 

It's impossible to know the right decision but you're right you make the decision and go with it - for us home from hospital, then hospice was the right decision.  

Take care

Thank you CT. I have spoken with her oncology team and they say it could be quite a while as her appetite is still strong. If she comes home I plan to sleep in the same room for the reasons you describe. I will be talking to our macmillan CNS and our GP today to find out in detail what support is available. 

Hi BobbyChocolate. I can see that you have received solid advice so I’ll keep this brief. I am so sorry to read your current situation and can relate to it.

In our case, a care home was not an option as my husband deteriorated quite quickly towards the end. We had hospice at home with Marie Curie nurses coming in for two of three scheduled daily visits. They were just invaluable for their kindness and their expertise. (These visits were actually put in place by the hospice team as my husband was estimated to have no more than 12 weeks to live. He received the Marie Curie care for 9 weeks.)

We were also supported by the District nurses (an evening visit from them and an emergency out of hours number, which I called quite regularly), MacMillan nurses and the GP surgery. Contact was also maintained with the specialist Cancer centre. It was this amount of support that made staying at home possible for us.

It is all incredibly hard but in our situation I was glad we were able to do it. I slept in the same downstairs room as my husband until the last couple of weeks, when I found it too difficult and instead slept on a settee in an adjacent room.

I am sure that you will make the right decision for yourself and your wife.

Take care and warmest wishes,

Ax

HI BobbyChocolate

sorry to hear that things have declined. This journey is an emotional rollercoaster ride.

There are no right or wrong decisions here and I'm not about to offer advice but I would encourage you to think about how much you can cope with. I know that that sounds selfish but caring for someone at the end stages of this horrible journey is tough on so many levels.

I had a slightly different challenge with G. Physically he was very fit up until the last week or so but our challenges were cognitive. He had a spell in our local hospice in the August while they stabilised focal seizures and due to his age (he was 53 at that point) there was nowhere else for him to go but to come home. I had to admit to the medical team that I couldn't guarantee to keep him safe. He kept going out for long long walks and I was terrified that he'd get lost or collapse while he was out. It was all extremely stressful.

He did go through a period of agitation and the Dr prescribed a low dose of Lorazepam to take the edge off it. It worked wonders as he was very quickly addicted to it so it ensured he was home by 5pm to get the tablet. 

Hopefully your wife's medical team can put a good support package in place to allow you to bring her home but remember if that arrangement isn't working for you both, speak up and don't suffer in silence.

G didn't want to die at home. He had already said he wanted to pass in the hospice if possible. We had about 36 hrs of nursing care at home with the community nurses and carers coming in multiple times and I'll be honest, it was a huge relief when he was admitted to the hospice. I'm not sure I could have coped with the "home nursing" part for much longer. Admittedly by that point in time we were all exhausted mentally, physically and emotionally.

sending love and light and strength and hugs

Wee Me xx

Asa, thank you. I listen to the experiences on here and I am humbled. I waver between the options like a tree in a gale, first this way and then that.I just wonder if I am up to task. I know from experience that the mountain in your head is often bigger than the reality, but I also know that optimism is an imposter. I am sitting here trying to weigh my strength and I am so worried that I shall be found wanting.

Wee Me, thank you for your kind words and honesty. Part of me just wants to run away and hide, but then I ask myself is that the way to close a long and happy marriage. The pain and heartache in the short term will be outweighed by the the guilt and loathing later if I don't do the right thing. Like everyone on here, I just want to do right by her, to do the thing I know that she would do for me. But, should I be in her position I also know that I would want her to look after herself. I suppose that could be a definition of love, to spare your loved one unnecessary heartache.

I will talk to the hospice tomorrow and ask again about the package of care and what would happen should I fail to cope in the coming weeks. I am very close to making a decision, but like a diver on a high board, the leap frightens me.

• I think when the time comes the decision sort of happens and I think we are guided by the medical specialists and with our and our loved ones wishes and a decision naturally comes out of that. We'll never know if we made the right decision we can only do our best in the moment. Please take care, it is the most awful journey to be on with such awful decisions. You are there and that's what matters. 

Well, I've taken the plunge and decided to care for my darling wife at home. There is 90 minutes a day of carer support plus the district nurses and the hospice, so I am not on my own. So now it's just one day at a time.

Thanks to everyone who commented or reacted to this thread, you all have been wonderful and wise.

Bless you all