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Videos and voice recordings are a good idea though. The memory of someone's voice will fade with time and can be a nice reminder.
As a family, we're sitting down with the palliative care nurse tomorrow to discuss home vs hospice care. In the early days, Sheena was for home and I was for hospice. I pushed to visit a hospice and Sheena came round to my way of thinking. And more recently I have been thinking home care, so sweet Sheena can be in familiar surroundings. However even with potential overnight nurse stays and the like, it's not the same as dedicated hospice care. I'm for hospice, and I will stay there with her every second. Her daughters also think hospice for the bee they don't want the house to be associated with where their mum died. Sheena had a lucid moment as she got up from 3am until just now (5am) and she also said hospice in order to help control the pain (she has been saying so for a while but recently she home, though she was confused, so it's difficult). For me, the other benefit would be that they could help roll her and take care of her as it's getting to be a lot trickier for me now.
Lots of people wanting to visit but Sheena doesn't want that. Sheena can't defend herself so I'm having to be the bad guy and say NO (!!). The only one I'll let pass is her step-son because he's good and is part of the family but I even feel bad about that as she's said no and I feel I'm letting her down in that regard. Her sister suggested it but it's not about what they all might think is right, it's about what Sheena feels and wants. I'm actually quite angry and this now but I said no originally then got talked around and said yes and now I think it will be a mess if I say no again. It's going to be a firm NO from now on. I've always been the pushover and Sheena the strong one and it's like the death of my old self in a way.. I don't like it. Sheena always made me feel comforted and "at home" but now it's different and I feel more alone because of it.
Gotta go, I can hear her moaning downstairs. My mind needs to be completely on her and not on what I might write on here whenever I might have a spare minute, so I should say it will be "infrequent" from me, however again I appreciate all the messages!
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As far as turning people away is concerned don’t feel bad
i had to do this a lot with Susan as she didn’t want to see anyone but her parents and brother.
Her best friend got the hump and tried to go round me but I was having none of it. At the end of the day your job is to enforce Sheenas wishes and peace and quiet.
If people get the hump then so what... it’s not their call
Hope it goes well and people take a reasonable view but if they don’t, remember who is important . Sheena and you
Available as always if you need a chat
Andy
I agree that any patient being visited by hordes of people when they feel awful is extra stress - who is it the visiting for?
I think we all feel duty bound to visit ill friends and relatives, but too much visiting is stressful for the patient, and when you are very ill, the tolerance level must drop further. I can think of a few relatives who have experienced this, my uncle most recently, who discussed it with me at length, and I did myself when I had a long hospital stay.
The girls are right to worry about associating the house with death itself, this can affect people a lot. It would be a shame to diminish the new house you have bought and made home together
Words on a forum post seldom convey the whole story, but to continue doing the best you can for both yourself and Sheena, some of the weight needs to be lifted.
Take care,
Adam
In a strange way right now she's very cute. Very polite saying "yes, please" and " right ok" but it's not quite her. Her lucid moments this morning were lovely. I just held her hand until she slept.
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We were in this situation last year with my g/f's mum and there's absolutely no way we could've done it without nurses on hand, in this situation she was allowed to continue to stay in hospital as in the time scale it was the most suitable thing.
What's important is that a person has a comfortable and respectful time and sometimes that requires extra help.
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EDIT: In other news, I heard I got two patents through the pipeline at work, so that's good news!
EDIT2: Oh good, we're going to be getting Marie Curie carers in the mornings and after 5pm in order to help bathe her etc.
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