I don't know how I am going to get through the days, please help.

[bloodywhitecat]

DH has cancer, we know he is for palliative treatment only. On 20th November he had a massive stroke, he is in hospital unable to speak, use his right hand side or see out of his right eye. I am trying to get him home, I know it is what he wants but it is so hard. I can't see him for more than an hour a day, I can't speak to him on the phone and he can't reply to texts/messages. I have been doing OK up until last night when it hit me like a train.

We know his cancer is growing again and, at the moment,, he is not for chemo. I want to get him home but there has been some talk of him going to a rehab centre even further from home, I know this is not what he would want, we talked about it when he was first diagnosed. I know that when I get him home I am going to be his full time carer, including getting up in the night to change him, I know it is going to be hard

It doesn't sound stupid, it's so shocking that they knew he would need a hoist to get in the shower, and just that in itself would indicate he is a patient who cannot do things for himself right now and shouldn't be left alone.
Showers are slippery in any case, even more able patients shouldn't be left.
on your behalf.

Sorry to hear this.

Could I suggest you investigate, a local hospice.

Or, are you within reach of a Maggies Centre (look online for nearest)
Failing that, a Macmillan nurse at home. Macmillan is a wonderful cancer charity, you can contact them online or by phone and they will advise you how to negotiate getting DH home, and support both of you through what's to come.

While he is in hospital, use the time to look for and ask for as much help as possible regarding home care. . Red Cross can be great for hospital bed and other nursing equipment. Also, TELL everyone you know and can think of , where you're at. You will be amazed at who steps up to help and support. Accept it all.

I'm so sorry.

Your husband knows who you are, he doesn't expect you to be good at small talk.

Falling- it's really tough. When dad was having care at home when he was terminally ill, they didn't physically prevent him falling. They weren't allowed to. We were constantly terrified. They'd be escorting him to the loo, but if he started to topple they didn't intervene. That was hard to accept.

@2bazookas

Sorry to hear this.

Could I suggest you investigate, a local hospice.

Or, are you within reach of a Maggies Centre (look online for nearest)
Failing that, a Macmillan nurse at home. Macmillan is a wonderful cancer charity, you can contact them online or by phone and they will advise you how to negotiate getting DH home, and support both of you through what's to come.

While he is in hospital, use the time to look for and ask for as much help as possible regarding home care. . Red Cross can be great for hospital bed and other nursing equipment. Also, TELL everyone you know and can think of , where you're at. You will be amazed at who steps up to help and support. Accept it all.

Thank you, I self referred us to our local hospice on Friday and am waiting to hear back but they have given me their 24 hour support number in case I need to speak to someone in the meantime. I didn't realise about Red Cross so will investigate that on Monday. Macmillan have helped us get PIP in place but we haven't had much support from them in any other area but we have The Big C who have been brilliant so far.

Sending love to you and your family

Sending so much love, bloody.

Your DH knows just how much you love him.

Definitely reach out to your local community for anything practical they can help with. People want to help when they can.

I’m sorry to hear that you are going through this. It’s must be so tough for this to happen on top of his cancer.

If I were you I would ask to speak to the therapy team (OTs and physios) who are looking after him. They are the ones likely to be guiding his discharge abs are usually very keen to support patient wishes. If you want him at home and that is also his wish, then they should support you to make thy happen. There should be an option for ESD (early supported discharge) stroke specific therapy at home. They will be able to support with equipment and may have access to discharge to asses care support for home. He may well also be eligible for continuing health care funding. If he has a social worker they can support with applying for this, if he doesn’t have one he should be referred.

Inpatient rehab is often best in the long run, but given his terminal diagnosis it’s totally understandable that you want him home ASAP. Everyone should be supporting you both to achieve that as quickly as possible once he is medically stable.

I'm sorry to hear this latest update @bloodywhitecat if you're finding contact with the ward/doctors etc difficult and want an explanation about the falls do try and speak to PALS (Patient Advice & Liaison). Wishing much love to you and your family over the coming weeks and months x