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sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Sun Feb 14, 2016 11:00 pm

A quick catch up everything about the same except Steve fell over and hurt his bottom.I can see him getting worse each day just little things that he could do but now struggles with.thanks for advice I really don't have alot of help as all my children work and so do I.we are lucky that Steve's work mates come by all the time so he is not lacking company but I guess as I am working plus keeping house and everything else and taking care of Steve I really don't have much time to get out.I have a week off end of February so hopefully will be able to relax a bit.I want to Steve to live but at the same time I want him to pass away I'm a bit confused at my feelings.

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: frustrated

Postby Didge » Mon Feb 15, 2016 10:36 am

Sheena it's so difficult. there was a time about 10 days before my partner died when the hospice said he could go any time and had advised me not to leave that night. I must have fallen into a deep sleep and woke suddenly and realised his arm was cold and he didn't appear to be breathing. there was terrible panic but also a huge sense of relief that he wasn't suffering any more. However, I shook him and he was still with us - his arm had just got cold out of the bed covers. It really is a terrible conflict of not wanting them to go but not wanting them to suffer - something I think we carers are very familiar with! I do hope you manage to get some respite during your week off xx

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: frustrated

Postby sandraW » Mon Feb 15, 2016 8:41 pm

Hi Sheena,
I understand so well how you are feeling and its very natural. Of course you want Steve to live, all you want is for him to feel better, what you don't want is to watch him get worse by the day, you wonder where its all going to end, and when its going to end, its all so sad and scary.
I hope you can get a bit of a break when you have your time off, you must be exhausted trying to do everything. Can you not get some compassionate leave? perhaps if you could tack an extra week on to your leave, you might feel more refreshed. Thinking of you and sending a cyber ((((hug)))) sandrax xxx

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Mon Feb 15, 2016 9:03 pm

Palliative nurse been today- reckons Steve is depressed. His Dr phoned us and wanted to see Steve at 5pm. Have given him anti depressants and reckons they might help him. Also is trying to get him into hospice for some respite but won't know till tomorrow if there is a free bed.

Feeling happy about this - at least he will be cared for round the clock and hopefully get him into a routine of eating more. Fingers crossed he can go.

Love to you all

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: frustrated

Postby sandraW » Mon Feb 15, 2016 9:10 pm

Hi Sheena,
We were told that P.C. is known to cause Depression not that Trevor would take anything but he was like that, I hope they help Steve to feel a little better. I hope too that he can get some respite in the hospice they are truly amazing places, and that you can get some rest too, as you know he will be well cared for, a couple of good nights and you will feel like a new woman. Fingers crossed for you both let us know how you are love sandrax xx

PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: frustrated

Postby PCUK Nurse Jeni » Tue Feb 16, 2016 3:37 pm

Thats great news Sheena.

Hopefully, the anti-depressants will help - it will take 2-3 weeks to see a difference.

Sheena, if he does go into the hospice, please make sure they don't stop his creon - as they often do this - try to "cross off" anything they think is unnecessary, and often, creon is the first to go, as they are not aware of the vital role they play.

Just a heads- up in case, as we have plenty of folk who have this happen, and having done some training recently in hospices, they have commented on the fact that they usually stop it. (they won't anymore! )


Jeni.

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Tue Feb 16, 2016 6:17 pm

No bed yet hopefully tomorrow .jeni I will make sure he takes his own meds with him don't worry I will make sure about creon and Steve knows he has to take them .

PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: frustrated

Postby PCUK Nurse Jeni » Wed Feb 17, 2016 9:35 am

Great Sheena!

Hope there is a bed soon.

Jeni.

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Wed Feb 17, 2016 3:47 pm

So mad - Steve's palliative nurse is on hols for a week so we have a stand in. Phoned her as not heard anything about hospice. Apparently we have to wait till next week then she can refer him as she is a stand in and he isn't her patient she can't do it. So Will have to wait till Monday before he gets referred then hopefully they will have a bed. So cross why do they waste so much time

PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: frustrated

Postby PCUK Nurse Jeni » Wed Feb 17, 2016 5:03 pm

Hi Sheena,

Sorry to hear this - I must say, I am not sure if this is 100% accurate?

For a start, I know most hospices take self -referrals from patients, so maybe you could try that route? Of course, I know things are a little different where you are, but I would still enquire?

I am not surprised you are feeling upset.

Hang on in there.

Jeni.

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Fri Feb 19, 2016 9:16 pm

Hi jeni yes it is very different here referral from Dr to palliative nurse who refers to hospice who then comes to assess Steve.So hopefully sometime next week.Steve hardly eating now and sleeping more.has lost all interest in things he loved .He can't really be bothered to talk and when he does its very mumbly so I don't always catch what he says.I really feel that Steve is coming to the end now and I'm sure he is feeling the same.I just hope he doesn't linger and goes quickly and peacefully.we have fought for 11 months and I am so proud of him and myself for being strong .love to you all x

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: frustrated

Postby Sueoliver » Sat Feb 20, 2016 7:55 am

Hi Sheena can your GP refer you to hospice if there is a bed? Our GP's can! I just want to send you a big hug. Stay strong my lovely you are amazing.
Love Sue xxx

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: frustrated

Postby boa » Sat Feb 20, 2016 12:15 pm

Sheena, just thinking of you both. You have done so well over the last 11 months and are great to be so strong now. Catherine

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: frustrated

Postby Didge » Sat Feb 20, 2016 4:34 pm

Sheena, thinking of you both this weekend and sending lots of love, Didge x

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: frustrated

Postby sandraW » Sat Feb 20, 2016 4:53 pm

Sheena,
Its so wrong when you just want some help and to get Steve settled. I would have thought the original nurse would have sorted it before she went away, she must know the system. sending love and a (((hug))) sandrax xxx