Devastating News

Philly_Q

I don't often look at this thread and I don't think I've ever posted in it, I just don't know what to say.  But you're an amazing man, Thomas.  The best of all of us.

darthed1981

Alnico said:

“Though much is taken, much abides; and though
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.”

I love that quote, very apt

Nitefly

Thomas, I don't believe I have ever seen a greater love than this.  You are, quite simply, a hero.

PC_Dave

Nitefly said:

Thomas, I don't believe I have ever seen a greater love than this.  You are, quite simply, a hero.

Wis’d and seconded 

roundthebend

An idea for you @thomasross20 . G7th capos now offer an engraved option, looks really smart and would be a nice touch. Maybe her fingerprint, or kiss print, plus signature.

boogieman

You know what, you don't need fingerprints, inlays, neck plates etc to remember someone. The memories will live with you forever in your head, without all that stuff.

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. 

thomasross20

I got a few e-mails with PM messages so just to let you know I read the replies just now and as ever appreciate all the support. Any other time I'd reply to each post but I'd better try and get some sleep again. Just have to focus on Sheena completely now, things are taking a lot longer. It was a shock the other day as a switch just flipped in her brain, just overnight... looking at photos from just 2-3 days ago she was tired but her mind was ok. I've been ok to manually lift her and do what's required but she is now bed-bound with a catheter fitted and it's really a 2-person job to do all thaht is required to keep her clean and comfortable, but it's largely just me here... Now I'm a bit more used to this "new normal" I've had my reset button hit so I can keep going. I'll obviously be strong for her. Though when you see the mind going, the mourning (which occurs throughout this whole process) deepens. She can't do much herself now. And last night she was telling me her pain was ok but she was making noises as she was going to sleep... Come 3am she is in a lot of pain so we've just had the nurses out for injectible medicine. So really, I shouldn't have listened to her, and should have used my gut instinct as those moans were pain. We got a prescription for new injectibles a month ago but it wasn't added to the "controlled drugs" sheet so the nurses that just came in seemed concerned. That'll be a shame if the district nurses who regularly see us get their bums kicked because they're really nice. 

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!

Cabicular

You cannot cope with this level of care by yourself mate. It’s all very well thinking you can take care of her but it takes two or more people to move someone around and also if she has an episode it can be very very distressing. Since you are bearing the brunt of the care you need to be very strong on the Hospice idea. It’s not a democracy, you are the primary carer so unless Sheena majorly objects then you need to do what is ultimately best for the patient and in this case it’s my opinion (having been through this a couple of times) that you are unable to provide good enough care by yourself.
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

Deadman

You're a great man Thomas. Always in my thoughts mate. 

ToneControl

It sounds like the hospice is a good idea. You'll also reduce the chances of injuring yourself with lifting.
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

Kalimna

Thomas - please listen to the advice being given above, from an outsiders perspective it is nothing but sensible. Your post this morning was absolutely heartbreaking, and, if i may say, i thought there was a marked change in your words. For the first time (and i dont know how you managed to keep it till now) you sounded tired.
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

thomasross20

Yeah I totally agree with you guys , from the hospice to the visitors points. Even now, I've just given her breakfast but I'm tired and somehow I have to turn her and clean her and all the related stuff on my own - this needs two people. It was ok when she was fully herself and could get on her feet but she can't take direction and working around a hospital bed is tricky. Thankfully there has been no episode or "mania" and I would hate to experience that alone. I'm pretty sure we'll vote for hospice. It can only be an improvement for everybody, Sheena first and foremost (though it's not guaranteed as beds are limited). 

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.

Clarky

matey... the strength and resolve you've shown through all of this has been nothing short of awe inspiring..

sweepy

If Respite care is offered, don’t feel guilty about taking it, I will probably be in your situation in a year and I know how wearing the situation is, so, stay strong fella and more importantly, look after yourself, Sheena would be the first to give you a rollicking for not taking proper care of yourself. You know where I am Big Fella, wishing you and Sheena all the strength and wisdom you need and huge hugs from us all

ToneControl

that's one of the mechanisms I have found useful: think what she would advise you to do, not what the auto-pilot obligations and behaviours that society and TV try to push onto us.

thomasross20

Nurses are trying to get additional day and night care (night care is most likely) and if Sheena thinks that's enough by Monday then she can decide to stay here, else she says she'd otherwise be ok to go to Marie Curie, but she wouldn't be coming back from there. If she deteriorates before she decides to go, she'll have "missed the window."

guitarfishbay

Thomas if you decide you need to get additional help or go to Hospice then it will be the right decision.  You've been doing everything possible to this stage and shouldn't have any regrets about your actions.

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.

thomasross20

Sorry to hear about your girlfriend's mum - that must have been tough. Respecting that person's dignity and wishes... definitely..

guitarfishbay

Thanks Thomas.  It was a very tough time, we had a lot of mania to deal with as a result of her condition, sounds weird to say it but you are lucky that it sounds like Sheena is having a relatively peaceful and comfortable time right now.  I hope that doesn't come across as offensive, I genuinely don't like the idea of people suffering in that way.

thomasross20

No you're completely right... she's confused but there's no mania (hopefully ever..).. 

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.