Henry ill, I am concerned....

[Grannie G]

All I can say Loo is how cross I am you have had such a struggle for so long with such a poor outcome.

My husband has a new GP but is still under the care of his original consultant . I do not understand why these thing vary so much in the UK.

You have been treated shabbily Loo . I don`t know if you have the strength for a formal complaint.

 

[FifiMo]

Ponderings...

Loo

So sorry to hear about today and like JPG I can understand your frustration especially when you are deliberately excluded from discussions/exchanges of information.

I just wonder if it would be worth having a word with Henry's GP to find out if she would be confident in working with the CH to get his diabetes under control again. The hospital haven't exactly been a roaring success have they from both the medication and the dietary point of view. If that is all that is standing between the hospital and the CH for Henry then it might be worth exploring. You could perhaps argue that all the other benefits that Henry would reap from being out of hosptial and in a CH environment will outweigh the fact that there is still some work to be done on the diabetes front. Maybe the carehome could work with you too - afterall, you had it under control when you were caring for him yourself. Perhaps by working together you could get it back to what it was before all this happened.

I know it is another thing for you to have to deal with but from what you said the CH seem to have done a number of things today - they've shared information with you that no one else did before - they recognised and shared your concerns about how the diabetes was being managed. All of that bodes well for a great all round reltionship with them when (hopefully not if) Henry moves there.

You are so close to the finishing line and all of this is down to your hard work and determination to see that everything is done for Henry's benefit. Hang in there and be proud of what you have achieved so far.

Fiona
x

 

[Loopiloo]

Thank you Sylvia.

My husband has a new GP but is still under the care of his original consultant . I do not understand why these thing vary so much in the UK.

I don't understand it either. Nor do I know what the consultant's medical speciality is. I said to the CH nurse that he would not be a diabetic specialist and she said no but he is consulting with one.

As I think I said, this consultant attends the local hospital once a week, he also attends the other two hospitals Henry was in and I think is based at the first one where Henry had his surgery. Being in attendance once a week, and I think only during the morning, does not seem adequate. The nurses cannot alter medications so they have to wait a week until he appears again for any change of medication to be given.

There is a young doctor about in the hospital, referred to as a GP but he is not there all the time.

I could be very cynical and say but of course it is a hospital for the eldery...

I don`t know if you have the strength for a formal complaint.

I have thought about it, amongst other things, but no, Sylvia, I don't have the strength. Nor the belief that a complaint would have any impact.

I'm not confrontational by nature but neither am I timid. However, having won the consultant over concerning cancelling the Interim Placement which was imminent, it would not be in Henry's best interests to get on his wrong side by complaints.

Nor would it get me anywhere speaking to the Sister. I got an impression that she has the consultant on a pedestal.

As I said, the 'No' word has yet to be uttered by the CH, according to the CH nurse a decison rests with the CH manager. I accept that. Her nurses cannot take it upon themselves to alter medications, they had to consult a doctor. (a subject discussed with the Deputy Manager when I first visited the home)

What I find difficult to accept is that the hospital consultant was willing to discharge Henry into a care home when his diabetes problem has not yet been successfully resolved.

I feel so utterly despairing and helpless, useless.

Loo xx

 

[DeborahBlythe]

I feel so utterly despairing and helpless, useless.

Loo xx

I'm really sorry that you feel that way, Loo. There isn't a single person on TP who thinks of you that way. Far from it. You are a dedicated, loving and caring person doing your utmost for your husband, and everyone knows it.

I am so so sorry that nothing ever seems to be straitforward around Henry's care. It must be gut-wrenching to have to battle day after day. Hopes raised one minute, dashed the next.
I hope you know how well-respected you are on this site. I hope too that tonight you can rest and gather your reserves for tomorrow's discusssions, whatever they amount to and whatever the day may bring.
Thinking of you. Kind regards Deborah x

 

[Loopiloo]

Thank you very much for your thoughts and your kind words, Deborah. I feel humbled on reading them, especially knowing the many dfficult situations other TPers are struggling with.

Tomorow is another day, whatever it holds, and although I wanted to reply to other posts I am going to bed now. No night owling tonight.

Loo xx

 

[piedwarbler]

I'm really sorry that you feel that way, Loo. There isn't a single person on TP who thinks of you that way. Far from it. You are a dedicated, loving and caring person doing your utmost for your husband, and everyone knows it.

I am so so sorry that nothing ever seems to be straitforward around Henry's care. It must be gut-wrenching to have to battle day after day. Hopes raised one minute, dashed the next.
I hope you know how well-respected you are on this site. I hope too that tonight you can rest and gather your reserves for tomorrow's discusssions, whatever they amount to and whatever the day may bring.
Thinking of you. Kind regards Deborah x

Hear hear Deborah.
Love and a hug Loo,

 

[Nan2seven]

Dear Loo, I am so very sorry to read your account of Henry's assessment at the hospital. And as for excluding you from the discussion between the CH nurse and the hospital staff, I feel that OF COURSE you should have been included. What could have been said that you should not have been able to hear?

I do so very much hope that the CH does accept Henry, in spite of all the obstacles that the hospital seem able to put in the way of this happening.

I think you have grounds for a very valid complaint against the hospital's management of Henry's diabetes, but quite understand that you would want to get him settled before even considering making one. If the CH can see that the hospital has failed Henry in this respect, perhaps they will be willing to work with you and his GP to get it sorted. I do hope this is how it will work out.

Hang in there. They haven't yet said no.

Love, Nan XXX

 

[Loopiloo]

Dear Nan

Hang in there. They haven't yet said no.

True, they have not. Although I can see the logic if they think the hospital is willing to discharge Henry to them before the diabetes problem has been resolved.

On the other hand, I think, well, the care home is registered for 24 hour nursing care, they will have other diabetic residents. The home nursing staff also do the 3/4 monthly HBA1c glucose level blood tests and report the result to the GPs. (The other local home does not, I would have to accompany Henry to our town's Health Centre for the diabetes nurse to do this)

But I have lost hope. When I spoke on the phone to the CH nurse at the home on Saturday and asked how long it would be after the assessment before Henry was moved to the home, she said quite quickly, probably two days later.

I feel that OF COURSE you should have been included. What could have been said that you should not have been able to hear?

Exactly, Nan. But this has been the attitude all along. Exclusion. I was upset by the hospital nures's demeanour when the CH nurse mentioned me being included. Silence. A frown, tightened lips, turning to leave the room.

It has been a very quiet day. A quiet house, quiet outside, except for the wind. A quiet telephone.

I spent a large part of this morning drafting and then typing a letter to our GP. Not that I expect her to do anything, nor to respond. She did not when I updated her in February but when she phoned me late March about ordering a replacement walking aid she did thank me then, and said she appreciated my update and asked what the situation was then.

If Henry ever does go into this first choice care home, or the other local one, and she remains his GP then she will have the background information concerning all that has happened.

Should she leave, she has been married three years and a baby is bound to come along sometime, then I would think my updates will be in Henry's file for another GP to read. (She has recently started doing the Mother and Baby clinic!)

I was pleased with how Henry was yesterday when the CH nurse talked with us. He responded well, at times it was even a three way conversation, or near enough. His memory was poor, as I previously said, although when she told him where the care home was, at the end of the street by the same name where he lived with his parents, he knew where that was, and that it was opposite the church. When she asked him our home address he thought for a wee while. I tried to prompt him, saying we had lived here for 47 years, reminded him of the garden, the new kitchen installed two years ago. Then he said clearly and firmly "I'm sorry but I can't remember". Usually when he can't remember he becomes a bit agitated and irritable.

Although I was rather dismayed when after introducing herself, shaking hands with Henry, she straight away told him she was from the ******* nursing home, she had come to see how he felt about going there to see it. If he liked it, to stay there. Saying this several times as he was silent.

Henry looked bewildered then alarmed then when after she said it again he replied "No, I would not like that". She went on quite a bit about this then said to me "He looks anxious". He did.

I was rather annoyed by her introductory direct approach and told her I had not directly talked to him about a care home, particularly avoiding the word "home", although had seveal times talked around it, telling him he would be moving on to another place as he was in a hospital after fracturing his hip. Mentioning that other health problems had developed, he would receive the same care and nursing as now, but not in a hospital, and that beds were needed for patients with fractures coming from other hospitals. I kept it simple, saying just enough and then sliding off the subject. Terrified he would say "Why am I not coming home".

Yesterday as his anxiety grew I linked my arm through his, stroked his hand and said don't be anxious, explaining he had already been in three hospitals over a long time. The care home would be nicer, there would be more things to do (??), he would have a comfy room of his own, not a clinical hospital bedroom, and could have his own things in it, and go there at any time. Also that I would be able to see him anytime instead of only hospital visiting hours, and so on. Talking sooothingly, saying don't worry, I shall be there to help you settle in and you will like that.

He turned and looked at me and said "What if I don't like it?" That caught me off guard but I found some reply, can't remember now, and then slid off the subject.

During the 25 minutes or so when the CH nurse was talking to the nursing staff he repeatedly asked " Will she come back again? What will she say?" Also "I like it here".

For once I took some comfort in his living-in-the-moment short-term memory, hoping he would soon forget it. I think he did, I spent some time with him after the CH nurse left and he did not talk about it again.

I expect the phone shall ring tomorrow.

Love
Loo xxx






I

 

[Loopiloo]

Thanks Pied.

Also Bastan.

Not everyone comes off tabs when insulin is needed.

I did not know that, don't know much about insulin. I must read more about it. Although have heard once on insulin hypers and hypos are more common? Henry had a few of the latter each time his tablets were increased.

When I read of hospital horror stories on TP, I am always grateful I refused him admission.

You were wise. Although when it is a fracture there is no choice. I knew it would be difficult and Henry in longer than normal, perhaps three weeks, but then various other things happened. It never entered my head Henry would not return home. That he would still be in a hospital six months later to the night.

When I go into the bathroom I still see Henry lying on the floor unable to move, after we somehow got him in there and away from the stairs. My pulling, him pushing with his bum, in agony. I remember his every word. The last time he was 'himself'.

To hell with the hospital sorting out Henry's diabetes, they've done a dammed poor job of it so far. I'm convinced a CH could handle it better.

I have wondered that myself, they couldn't be any worse than the hospital. As you can imagine I have thought of little else all of today and evening.

You go ahead and weep, it releases stress hormones via our tears and really is good for you.

I fight the tears, afraid they will drown me, and I look such a mess when I cry, puffy eyes and face, eyes like slits. I'm not being vain, but Henry wouldn't recognise me!

I did go out locally today and could barely make one foot move in front of the other, my legs felt lke lead and agony, also my hips, everything. It is surprising how much mental and emotional tension can affect the body.

Off to bed now.... although wasn't as late as usual last night but got up feeling worse than when I went to bed!

Thanks for your thoughts and empathy, Bastan.

With love
Loo xx

 

[maryw]

Dear Loo, just to say I'm thinking of you. You are dealing with a horrible situation, which must be overwhelmingly sad. But the one thing that shines through every post is your care and love for Henry. Nobody could do more than you. Please be kind to yourself too, you deserve it. Xxx

 

[Nan2seven]

Oh, Loo, my heart went out to you and to Henry when I read your post.

I too would have been upset at the exclusion. I am still very annoyed on your behalf. Part of the trouble is, I think, is that we have been brought up to think that "the hospital knows best" and "he is in the right place" etc. - but sadly you have found this not to be the case. I feel the hospital(s) has(have) let both Henry and you down badly over the management of his diabetes since there was no problem at all when he was first admitted.

I feel too that the CH nurse showed rather, no, a great, lack of tact when introducing herself to Henry and asking him point blank, and several times, whether he would want to go and live at the CH. Had he not had dementia and had you and he had the opportunity to have already talked about it as an ordinary couple, i.e. not a carer-wife and dementia-stricken husband, her approach might have been more acceptable. It seems to me she marched into the rather delicate subject in hob-nailed boots. Dear Henry had managed his "I'm sorry, I can't remember" earlier with no show of anxiety, and then to be hit with an even more anxious-making question seems so unkind. And unnecessary.

When the CH nurse came to see Brian a few days before he moved into this present home, she gave him her Christian name and asked him how he was. (She had been told minutes before that he didn't speak, other than to say "No!".) Brian said in reply "I'm a little bit worried about my eyes ..." and I explained to her that he had a cataract in one and he had seemed more aware of it just lately. She stayed for only a few minutes, said she had read all of his paperwork, and then said to Brian "I may be seeing you again in a few days' time."

What a pity your CH nurse hadn't taken this approach as well. As you say, though, hopefully Henry's short-term memory loss soon did away with the anxiety he felt.

Thinking of you both to-day. I do so hope that all goes well for you.

Love, Nan XXX

 

[grove]

Dear Loo , have not Posted to you recently tho have been checking your" Thread " from time to time .

Am you are having a bad time at the moment Loo , it does seem very unfair you were not allowed into Henry's Meeting ( even if only for a short time) Gess some C H Nursers have a "Attiude Problem " with Reltives . Not sure if that 's true or not but could be part of the reason , also about Henry's Dibeties NOT GOOD & am with you Loo the Hospital are to blame . Makes me they not up to the job !

Just a thought R E : N Home Vaccany for Henry , try not to loose hope on 1st Choice as he might be a more Suitable / Needy Person than others on the Homes list ! . : if you have heard or am speaking out of turn Loo but wanted to offer sopport to you. Also if N Home Manager is good at her Job she would be prepared to take Henry even if his Dibetic Readings High / not stable

Postive Vibes to you both for a good out - come Loo

Take Care

Love & Hugs Love Grove x x x

 

[Loopiloo]

Yes!!

Just a quickie meantime, to say YES! Henry is being moved from the hospital to the Care Home on Monday!!!!!!!

It is hard to believe that I could feel so uplifted about my husband going into a care home. But since that decision had to be made in early February it has been a very long series of "difficulties" and the thoughts and emotions they involve. The last few days since Friday have been sooooo tense. Particularly since Monday's assessment when I felt devastated by the CH nurse's concerns, her saying she would have to speak to her Manager and not at all giving any positive vibes.

When I visited Henry today nursing staff were back and forward in corridors, the Sister several times in and out her office. It is directly across the corridor from the sitting room, I can see right into it from there through the sitting room glass panel. She had glancd across at me, but did not approach me. Ater a while I went and knocked on her open door and went in. Asked if any news. She said they had received a call from the Care Home to say they would take Henry and it would be Monday or Tuesday. Then as I was leaving Henry a nurse came and asked me if I knew.... and said definitely Monday, transport has been arranged.

I came home to discover the SW had phoned - always when I'm visiting - rang her, no reply then she phoned later. She had a bit more information. Henry's move will be after mid-day. I am going to phone the CH about me arriving before him, being there for him. Shall take a few familiar things down for his bedroom.

The CH Manager had talked to the hospital about Henry's blood glucose problems, I have a feeling she probably spoke to the Consultant who is there Wednesday mornings. SW said the CH will be able to liaison with the General Hospital Diabetic Specialist concerning monitoring Henry's erratic glucose levels and his insulin and tablets. No details but hopefully I'll find out more about that later from the CH.

The main thing is that the CH Manager was satisfied with whatever was discussed, and agreed to have Henry.

At last something is going our way. I know it is a whole new chapter and there will be ups and downs, and obviously I am concerned and focused on Henry and how he will react.

I talked to him again about it today, but he was not interested, just wanted to sleep. He did look tired and his speech was not so good. He said he felt like going to bed but "that would mean me having to climb the stairs....." First memory of home for months.

My present elation shall died down, I know, and the other aspects will soon crowd in, but it is such a relief to know that at last he is leaving the hospital.
~~~~~~~~

I have just had a call from our GP. Following my letter to her yesterday when I received today's news I left a message for her about that at reception. She discussed Henry's glucose problem and when I said I was told the CH could contact the General Hospital Diabetc Specialist she said she had been about to say that of course they could, and the Manager would know that. She thought the CH nurse may have been over cautious, said they will have other diabetics in the CH, but did say in Henry's situation there could be some lengthy time of trail and error - and perhaps that was a bit more like extra work for the CH nurses!!!

Must go now, umpteen phone calls after yesterday's deadly silence! Including one from the person dealing with my Pension Credits claim, after me phoning her on Monday before the assessment, then having to phone and tell her it was all up in the air. She needs a date for Henry going into the CH. Also needs to do another assessment since the April changes but can't visit me until a week on Friday.

But although they are in the back of my mind, I am not thinking about the financial stuff for the time being, one thing at a time and the priority is Henry going into a care home.

Sorry to blether on, I am a mixture of being on a high but with lows hovering in the background.... practicalities. However this evening I am staying on the high!

Love
Loo xx

 

[littlegem]

That's great news Loo,
At last you KNOW what's happening, it's the not knowing that makes things 100 times worse.
Hope the move goes OK and Henry is not too disturbed by the upheaval.
take care
and good luck
xx

 

[Anne&C]

I just had to post and tell you how pleased I am for you and Henry, Loo. I've been following your story. Good luck for the move.

Anne xx

 

[Jo1958]

Oh Loo, I hope you can keep the high this evening and then have a really good night with restful sleep.
Thinking of you and sending love and support.
With kind regards from Jo

 

[JPG1]

Great news, Loo!

And a 'wee blether' is all that's needed sometimes.

Hope all works out well for Henry and for you.
.

 

[grove]

Dear Loo , Just logged onto T P & reading your GOOD NEWS ! ! am so pleased for you Loo that things are looking more postive for you both

All Best Wishes for you & Henry on Monday

Take Care & do try & rest Loo ready for a busy Monday !

Will be thinking of you both on Monday

Love & Hugs Love Grove x x


P S to ask is it your 1st Choice C Home & is it Local ?

 

[together]

Dear Loo, have just been catching up and so so pleased with your good news. Looking back it's unbelievable the journey over the last 6 months. My thoughts are often with you and will be most certainly on Monday. This weekend have persuaded Dad to come and stay (first time for 8 or more years), will be a special time hopefully.
Love to you Katherine xx

 

[grove]

Hello Loo , Grove again hope Henry is able to cope with the move to the C Home reasonably well & settles ok on his 1st Day

Love & Hugs Love Grove x x