frustrated

[sheena]

Hi, all well. What a horrid week so far.

Everything has gone wrong, bad indigestion, feeling sick, not sleeping and more weight loss. Wednesday night Steve had enough and wanted to die. Spent 3 hours trying to perk him up but nothing helped. Palliative nurse came today and she was amazing. Because his sugar levels are all over the place - very high then very low - that's why he is feeling down.

Saw diabetic nurse and he is being closely monitored. Community nurse coming in twice a day to test his bloods. Steve is in a far happier place tonight and starting to be positive again. I really don't know how much longer I can go on, I am mentally destroyed.

Hope all is well with you all much love x

[PCUK Nurse Jeni]

Hi Sheena,

Thats great that Steve is now being closely monitored, especially his blood sugars. Hopefully, this will make a difference to how he feels, as they can act on regulating his glucose levels.

You are doing such a great job Sheena, but of course, must be exhausting.

Do you get any respite at all? The Red Cross will come into your home and sit with your loved one if you would like to go out for a short time. Also, do you have any other support at all? Any groups you can get to locally where you can be supported?

Great that you are able to come onto the forums and get support here.

Take care,

Jeni.

[Didge]

Sheena, poor you. As Jeni has said, if you can get away even for a couple of hours for a coffee with a friend, it can make all the difference. Although I was always worried when we were apart it did give me the chance to switch off for a short time and if you can do that it can recharge your batteries. Otherwise embrace the better times as they come so if Steve is feeling brighter then join him if you can! xx

[Sueoliver]

Hi Sheena how are you today? How is Steve? Do you have support from the hospice or a community nurse? I found them invaluable and so helpful. Your journey sounds so much like mine I think of my Mum every time you post. If you want to e mail me anytime please ask the moderator for my e mail.

I am thinking of you I know how hard this is.

Love Sue xxx

[Proud Wife]

Thinking of you Sheena. I sincerely hope you have the support that you so desperately need. Please forgive me for asking this but have you talked your own emotional health through with your doctor? The focus is always so rightly on the patient and it shouldn't be any other way but your health is also important.

I found it exceptionally hard to cope with hubby's shock diagnosis which came after a run of bad luck and huge amounts of stress and like you, I felt mentally exhausted. My wonderful GP put me on anti depressants which prior to diagnosis I would not have touched with a barge pole but they do help so please don't be afraid, embarrassed or whatever to ask for help to see you through these horrific times. There's a day and night different now to how I feel and how I'm able to cope with all that's thrown at us.

All the very best xxxx

[sheena]

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]

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]

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]

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]

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]

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]

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]

Great Sheena!

Hope there is a bed soon.

Jeni.

[sheena]

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]

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]

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]

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]

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]

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

[sandraW]

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

[sheena]

Ty all for your continuing support Steve has not got out of bed today and eaten 2 dry crackers and a ice lolly .refusing to let me wash him and hasn't even done his teeth,so not like him he was always so fussy about hygiene.hopefully have a better day tomorrow

[shelda]

Oh Sheena so sorry to hear that Steve is like this, it's so so hard seeing them like this almost given up on themselves and then to feel you haven't got the support from the local medical team...this is the most frustrating part and you just want to scream of how unacceptable it is to let a human being just be left like this with no help!!! Sending you lots of love, so so brave xx

Edited February 21, 2016 by shelda

[boa]

Hope today is good for you. I understand exactly how you feel. My husband ordered a new razor when he really wasn't too good because he was very particular just like your Steve but then he refused to wash. I think they just feel too tired. I'm thinking of you.

Catherine

[kittycat]

He sheena, although I don't post much now, I have been following your story and I'm know what you're going through. Roger had always been particular about his appearance and then just didn't want to be bothered with washing - I think they must be so tired that it's just too much. You do a wonderful job looking after him and I hope that you get a hospice place soon, just so that you can have a little respite. Having said that, Roger was at home and I was offered someone to stay overnight so that I could sleep and there was no way I could sleep while he needed care. Take care. Sue x

[sheena]

Steve went into hospice this morning it is a beautiful place.He is very happy at being there.He has eaten a small amount and Dr came this evening to sort out his meds.Will try to do catch ups when I can.I feel so different as if a lot of weight has been lifted off of me.