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Original poster

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

33 replies

bloodywhitecat · 03/12/2021 08:31

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

OP posts:
Gilead · 03/12/2021 08:52

Oh you poor thing, life must be hell for you.
I would try talking to Macmillan perhaps, they may be able to advocate for you.
I feel for you, my best friend who also happens to be the father of my oldest is on palliative care too.
💐

randomcatperson · 03/12/2021 09:04

This is tough for you both. Could you possibly find a placement in a hospice? You'd probably be able to stay with him there or at least spend longer periods being with him.

bearlyactive · 03/12/2021 09:07

Oh bloodywhitecat, I have been following your journey from a distance the whole way through and I'm so sorry that this has happened. I don't have any decent advice but I have a hand and it's holding yours Flowers

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Sparklingbrook · 03/12/2021 09:08

So sorry you are dealing with this. Flowers It sounds extremely difficult.

Have you been in touch with the local Hospice? They can be very helpful in making any arrangements/adaptations regarding care at home, and you would be able to access support for yourself. (Some have volunteer sitters etc)

LucentBlade · 03/12/2021 09:09

Please do speak to Macmillan, they really helped my sister. My sister managed to get her DH home, he did get moved to a lovely hospice for his final couple of days but she had him home for a couple of months.

What sort of support in real life do you have? Her adult DD managed to stay for two weeks, she lived hundreds of miles away and her DS popped in almost every day. I was working FT then and as it was term time was not allowed leave so I sent her a few food shops and found out information on borrowing equipment, it was a few years ago but The Red Cross lent many items and were brilliant.

I would advise speaking to Samaritans, it’s very hard speaking to people you actually know when emotions are so overwhelming. I turned to them when I was ill and knew it was the end of the career I loved.

Forion · 03/12/2021 09:30

Marie Curie will also help you manage at home. Please call someone, you need some help to make this happen.

worriedandannoyed · 03/12/2021 09:35

Do you feel able to speak to a hospice? They're amazing and will be so helpful.

If you can try and speak to someone sooner rather than later as I think moving him home will be easier the more mobility he has. If his mobility reduces too much it may be unfair to move him.

The hospice will be able to help you with practical and emotional support too

Howmanysleepsnow · 03/12/2021 09:38

Can you speak to the ward manager rather than the doctor? I used to be one and suspect they may be more help (and easier to get hold of). Let them know that your DH would not, from what he’s said previously, want rehab. Check they’ve assessed capacity, and check they’ve asked what he wants (assuming he can communicate non verbally). If he can’t communicate his wishes in any way they need to get an IMCA (independent mental capacity advocate) involved to ascertain his wishes (eg by talking to you).
This must be so, so hard for you both xx

Original poster
bloodywhitecat · 03/12/2021 10:14

@Howmanysleepsnow

Can you speak to the ward manager rather than the doctor? I used to be one and suspect they may be more help (and easier to get hold of). Let them know that your DH would not, from what he’s said previously, want rehab. Check they’ve assessed capacity, and check they’ve asked what he wants (assuming he can communicate non verbally). If he can’t communicate his wishes in any way they need to get an IMCA (independent mental capacity advocate) involved to ascertain his wishes (eg by talking to you). This must be so, so hard for you both xx
Thank you everyone. I have just put in a hospice referral, I kept putting it off (which is daft because I worked in a children's one as a carer so I know they can help). I have never heard of an IMCA, how do I contact one? Macmillan haven't been good but our local charity have and I will call Marie Curie. We are not at end of life yet but we will be within the next few weeks/months.
OP posts:
Sparklingbrook · 03/12/2021 10:56

I know what you mean about the Hospice. I used to work at one and o had no idea of all the services they could offer. And it’s not all end of life care stuff either. I think it’s the word even that makes you take a breath.
Flowers

Lorriestakingppe · 03/12/2021 11:00

Sending much love and strength to you whitecat xxxx

Original poster
bloodywhitecat · 03/12/2021 12:57

I just had a video call with him and the babies, he can't say anything but his face lit up and the biggest baby was reaching out to him and trying to say his name (how is it I do all the day-to-day stuff with the little pickle and it is DH's name he tries to say Grin ). I think we all really benefitted from that 'chat' but I am useless at small talk, I never know what to say, does that matter?

OP posts:
Sparklingbrook · 03/12/2021 13:05

It doesn't matter at all that you don't know what to say. That sounds like a lovely little interaction between you all.

Lorriestakingppe · 03/12/2021 23:00

Awww sounds lovely xxx

Holothane · 03/12/2021 23:02

💐💐💐💐💐💐💐💐💐handhold and hugs for you.

NovemberNovemberDarkNights · 03/12/2021 23:07

((((HUGS))))

No more advice, just lots of love & strength!!

He needs to get home with you & the babies, hopefully one if the suggestions above will help that happen!

Thinking if you all often xx

How was your trip to see the ex fosterling? (Sorry not sure what to call them)

Houseplantmad · 03/12/2021 23:09

That chat sounded lovely to me so must have meant so much more to him.

Sending you love and strength to get through this together.

Original poster
bloodywhitecat · 04/12/2021 05:48

@NovemberNovemberDarkNights

((((HUGS))))

No more advice, just lots of love & strength!!

He needs to get home with you & the babies, hopefully one if the suggestions above will help that happen!

Thinking if you all often xx

How was your trip to see the ex fosterling? (Sorry not sure what to call them)

I could see my DH trying to shine through last night when I went to see him, his nurse was talking in terms of him coming home rather than going anywhere else and said that as far as she knew the plan was for home.

He saw his DD last night via video which is good for both of them.

@NovemberNovemberDarkNights Seeing our ex fosterling was lovely, he remembered us, he came over and sat on my lap then gave me lots of cuddles. It was lovely to see him so bonded with his mummy and daddy.

OP posts:
Rainbowqueeen · 04/12/2021 05:58

That sounds really positive OP. Have you thought about reaching out to your local community?? I know I would be happy to sit with your DH while you did sone errands or bring you meals or help in whatever way I could if I lived close by.

Wishing you peace and as much joy as possible for the next few months

NovemberNovemberDarkNights · 04/12/2021 09:15

@bloodywhitecat.

I'm glad the ex fostering visit went well, how lovely to see him so settled but also to get lots of cuddles & reconnect with him.

Fingers crossed they can get your lovely DH home very soon.

You are a star! They're all lucky to have you xx

(Oh yes, definitely don't be shy asking neighbours etc I sit with my neighbour at times when she's not happy him being home alone & sometimes when he seems a bit better & is occupied by something (usually sport in the TV) I'll either go & watch with him or check in at least every 30 mins & go in if he's not in his chair) & recently after an accident, my neighbour kept an eye on me when I came home from hospital)

Original poster
bloodywhitecat · 04/12/2021 18:56

@Rainbowqueeen

That sounds really positive OP. Have you thought about reaching out to your local community?? I know I would be happy to sit with your DH while you did sone errands or bring you meals or help in whatever way I could if I lived close by. Wishing you peace and as much joy as possible for the next few months
Asking the community is a great idea!

Today he was left unattended in the shower and had a fall. I mean, just how? He has no use of his right hand side and can't feel it (the doctor called it hemiplegic neglect?). He seems to have escaped injury but just how was he left to fall? He also has a slight temperature and his biliary levels and infection/inflammation markers are raised so he is being treated with antibiotics. I am really worried again.

OP posts:
Sparklingbrook · 04/12/2021 19:02

How on earth did they leave him in the shower? That's bizarre that they would think that was ok.
Maybe he could have a shower during your visits so you can supervise.

Original poster
bloodywhitecat · 04/12/2021 19:02

He's been there two weeks today and has had two falls, is that acceptable because I don't think it is.

OP posts:
Sparklingbrook · 04/12/2021 19:06

It isn't. They know what his limitations are and he should not be put in danger like that.
I would have thought he should be getting bed baths and not attempting the shower just yet, and definitely not be left in it.
It's all very difficult. Flowers

Original poster
bloodywhitecat · 04/12/2021 19:15

They transferred him to the shower by a hoist then just left him for some reason, they told me "We thought he would like a shower so we transferred him but then he was left unattended and he fell". I am going to ask for a full explanation tomorrow. I know it sounds stupid but I was so shocked I didn't ask how he was left alone.

OP posts:
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