You couldn't make it up!

[Jinx]

Visited Bernard this evening, he was very fed up and grumpy, which is understandable. His catheter has been removed, but he has a pad. Also cannula has been removed so now on oral ABs. However, he has managed to fall twice more although apparently no injuries. Was found wandering using a Zimmer frame upside down. Also recorded in his notes that he got very agitated and raised his fist to staff trying to get him back to bed. He has been sedated a few times. I have requested from SW a further assessment prior to him being discharged as I am really concerned that I won't be able to cope if he comes home. I am not prepared to bed block so would have him home if that was in his best interests but want to get this on record and start the ball rolling. His SW has already told me he thinks it would be in Bernard's best interests for him to come home but he has only seen him about four times for max 20 minutes. I don't have Lasting POA only the Enduring variety. A meeting with SW and the medical team is due next Friday. My daughters will come with me, but I'm dreading it. xx


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[esmeralda]

Oh Jinx, what a worry for you. I so hope you get the input and advice to help you make the right decision. Hope you're not feeling bad that you went away because this was happening anyway. Very sad that it has taken away some of the benefit of you haing a break.
Will be thinking about you both and wishing for the best outcome. Big hugs
xxxxxxxxxxxxxxxxxxxxxxx

 

[Jinx]

Thanks Es, it's a difficult time. xx


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[sleepless]

Jinx, you will have your daughters to support you, and the input from the medical team. Your trip will have done you good, from your post I can sense a strength in you, so stay on course to get the best outcome for Bernard and yourself.
Sending you my best wishes.

 

[Jinx]

Catheter back in, urine sample sent for testing as he was so agitated during the night, being rude and making threatening gestures to staff. So out of character. They have him on Diazipan so consequently he was sleepy during the day and refused meds and most food. I managed to get him to drink and eat ice cream and peach slices but he wouldn't have anything else. He hasn't been shaved either, not sure if he's refusing or they're not bothering.


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[chick1962]

Thinking of you both Jinx xxxx


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[truth24]

So sorry to read of your problems, jinx. Hope the meeting goes well and you get some help. Also that Bernard can be helped too.

 

[esmeralda]

Oh Jinx, I'm so sorry. Hope the situation improves for you both very soon. Love and big hugs to you.
xxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[disi]

Oh Jinx, so sorry to read of all the problems you are having. And hope the meeting has a good outcome. Sending hugs xxxxx

 

[Jinx]

We had the hospital meeting today, very stressful with the SW keeping up the line of 'coming home being in Bernard's best interest' despite the medical team telling us that B is now doubly incontinent, needs two people to mobilise him, the physio has withdrawn because B is not able to remember what they have told him from one day to the next, he needs constant prompting for drinking, eating, meds etc. towards the end of the meeting the SW said 'I actually decided that going into a care home would be in Bernard's best interest before the meeting but wanted to document the reasons for him going home first'. The medical team said they had never been in such an intense meeting before and my daughters and I came out feeling completely wrung out. We were all in tears, particularly my younger daughter. It is such a big change but I can't cope with his increased needs and I know it's the right decision. B will stay in hospital until a suitable care home can be found, I just hope and pray it won't be too long before a place is available, hospital is so miserable. Feeling very teary and emotional. xxx


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[nannylondon]

We had the hospital meeting today, very stressful with the SW keeping up the line of 'coming home being in Bernard's best interest' despite the medical team telling us that B is now doubly incontinent, needs two people to mobilise him, the physio has withdrawn because B is not able to remember what they have told him from one day to the next, he needs constant prompting for drinking, eating, meds etc. towards the end of the meeting the SW said 'I actually decided that going into a care home would be in Bernard's best interest before the meeting but wanted to document the reasons for him going home first'. The medical team said they had never been in such an intense meeting before and my daughters and I came out feeling completely wrung out. We were all in tears, particularly my younger daughter. It is such a big change but I can't cope with his increased needs and I know it's the right decision. B will stay in hospital until a suitable care home can be found, I just hope and pray it won't be too long before a place is available, hospital is so miserable. Feeling very teary and emotional. xxx


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Oh Jinx I am sorry you have been having such a stressful time I felt very like you when I could no.longer cope with my OH at home but I now realise it was the best thing for both of us sending you a big hug (((( ))))xxxx

 

[bemused1]

Jinx I am so sorry you had to be put through this . You know best what you can cope with and so obviously did everyone else. Bad enough to have to deal with the realisation that your husband needs more than you have left without being put through the wringer as well.
I hope Bernard can be found a place soon, it will probably allow him to settle and find peace to get out of hospital.I hope you find some peace as well.
Hope your daughter/s are with you tonight and you can sleep to recover .
Sleep well.

 

[Jinx]

Thanks NannyLondon, I remember what you went through with your husband, it is so hard and the last thing we ever thought would happen. My only consolation is that nearly two years ago we were offered a care home for my husband after a long stay in hospital but I knew the time wasn't right and he has had that extra time at home with me but now I know I can't give him the care he needs. xxx


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[nannylondon]

Thanks NannyLondon, I remember what you went through with your husband, it is so hard and the last thing we ever thought would happen. My only consolation is that nearly two years ago we were offered a care home for my husband after a long stay in hospital but I knew the time wasn't right and he has had that extra time at home with me but now I know I can't give him the care he needs. xxx


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I know what you mean Jinx but hang on to the thought that you did the best for him as long as was humanely possible that's what I try to do try and get some rest you must be emotionally exhausted xxxxx

 

[Scarlett123]

Thanks NannyLondon, I remember what you went through with your husband, it is so hard and the last thing we ever thought would happen. My only consolation is that nearly two years ago we were offered a care home for my husband after a long stay in hospital but I knew the time wasn't right and he has had that extra time at home with me but now I know I can't give him the care he needs. xxx


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Jinx, you've displayed superhuman strength and courage, and had those extra 2 years, to create some lovely memories. You've cared so devotedly and unselfishly, and are shining example of a loving wife.

I'm afraid, from experience, that SWs do tend to talk the talk, without appreciating the impact their words have on the spouses. Bernard's "best interests" will be catered for, by the staff in the Care Home that will be right for him, and by the visits from you and your family. Sweetie, we can only all carry on for so long. xxx

 

[esmeralda]

Oh Jinx, I'm so sorry, like bemused said , bad enough without those sort of mind games in the meeting.
My heart really goes out to you, having to make such a difficult decision, but i think you probably just know in your heart that the time has come. As you say, two years ago was not the right time and you knew that then, just as you know now that it is the right time. Hold to your instincts and trust them. Hope the transition is as smooth as possible.
Sending you loads of love and a big hug.
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[chick1962]

Oh Jinx it must have been such a difficult meeting . As Es said go with your instincts as you know best . Much love to you and your family xxxx


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[bemused1]

Hope you got some sleep jinx.

 

[Jinx]

Another night of waking at all the times Bernard normally does, plus the dog wanting to go out in the middle of the night. I wonder how long it will take to get back to a proper sleep routine. Spent two hours with Bernard in hospital yesterday, visiting is only between 4 and 7pm. It does mean I can be there to make sure he eats and takes his meds. He was very relaxed and thought he was in a hotel, bless! The staff are brilliant but it's a dementia ward and they must feel like they're herding cats. No sooner have they got one wandering patient settled there's another heading for the door or needing the toilet. There was a poor old chap in Bernard's bay the day before yesterday demanding the chef be brought to him so he could tell him what meals he needed, he was very loud and using some choice language. He'd gone yesterday, not sure what they did with him!


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[thebes]

Another night of waking at all the times Bernard normally does, plus the dog wanting to go out in the middle of the night. I wonder how long it will take to get back to a proper sleep routine. Spent two hours with Bernard in hospital yesterday, visiting is only between 4 and 7pm. It does mean I can be there to make sure he eats and takes his meds. He was very relaxed and thought he was in a hotel, bless! The staff are brilliant but it's a dementia ward and they must feel like they're herding cats. No sooner have they got one wandering patient settled there's another heading for the door or needing the toilet. There was a poor old chap in Bernard's bay the day before yesterday demanding the chef be brought to him so he could tell him what meals he needed, he was very loud and using some choice language. He'd gone yesterday, not sure what they did with him!


So sorry you are having such a tough time, though I like the idea of a dementia ward where hopefully all staff have an understanding of the illness they are dealing with and so respond better than on the general wards. It maybe says a lot for them that it can feel like a hotel. I hope that is some help to you too.