Somebody else's glasses

[TinaT]

Dear Hendy,
I'm so very sorry that dad's mobility has gone. Even though your past experiences teach you to expect anything, it is still a shock and very upsetting to have yet one more slide down. As you say we hope for the best and then this terrible disease pours out more of its poison.

What a great relief that the home will have him back. That is just the news you need at the moment. They will probably be equipped with all the necessary lifting devices and have experience of immobile residents. I hope that he will stabalise out very soon.

xxTinaT

 

[hendy]

Dear Irish Eyes
Thank you for your support. I'm sorry to hear mum is poorly, I hope she is comfortable and peaceful at the present time. Its just too much isn't it! on top of everything else - glasses and slippers!
take care
hendy

 

[hendy]

Dear Tina
Thank you for your message. The home do look after immobile patients, and you're spot on, the home are well-equipped. I just hope Dad can accept his immobility! He has been such wanderer.
take care
hendy

 

[Mameeskye]

Dear Hendy

Sorry to hear about your Dad's lack of mobility. Mum had three times stopped walking and had twice regained that ability, much to evryone's surprise, but it was hte NH staff that got her back to her feet. The hospital did not have the expertise to do so.

It may be that your Dad doesn't recover he ability, but once Mum finally lost her ability to walk she seemed a little better cognitively becuase she was no longer worn out by the constant pacing.

I am glad though that the home are willing to take him back. I found that Mum's home which was a specialist EMI unit had good nursing care even when patients became immobile.

Thinking of you

Mameeskye

 

[hendy]

Dear Mameeskye
Thank you. That is comforting to think either he may regain some mobility or he may be able to communicate a little more easily. We just never know with this blessed disease. Dads not giving up easy. We'll have to wait and see. Thanks again
take care
hendy

 

[Skye]

Hi Hendy

Sorry to hear your dad's lost his mobility. It's so sad when that happens.

The NH did get John walking again when he first moved there, in fact I took him out a couple of times. Sadly, the next infection made him lose his balance, and he hasn't walked since, though on a good day he can manage a few steps with a carer at either side.

So there is a chance for your dad, I'm sure the NH will try, for one thing it's so much easier for them if they don't have to use hoists.

All the best,

Love,

 

[Irish Eyes]

Dear Hendy,
Could not agree more with Mameesky...when Mums mobility went I too worried as she was always wandering and pacing but she actually, for a while, was brighter in a way - not so worn out. She seemed calmer and to be honest we were more upset than she ever was. Although she is poorly she seems more at peace. She was constantly grinding her teeth and when I was home last that seemed to have stopped to. Sometimes it all seems too much alright, if you had told me a couple of years ago that I would get so uptight about things like glasses I would have laughed. What has shocked me so much is the pace at which she has declined. I feel 100% better since coming on here. It is good to talk isn't it? Wish my Dad was able to see all this. He is 83 and truly believed his case was so unusual. It took him a long time to tell us how bad things actually were. he became an expert at covering up things. Take Care

 

[hendy]

Dear Irish Eyes
It is reassuring to know that you're not comletely on your own. Dealing with dementia is very isolating, you cant easily talk about it to others. Your poor Dad must have felt lonely at times, in that he was dealing with all the issues and convering it up. I suppose some people of that generation don't like to feel they've given up on their loved one. Its so hard to face upto. Its how lots of people cope or, try to. Its a normal reaction to the abnormal. What else can we do? We only learn to cope through experience, even that seems impossible sometimes. I couldn't even begin to think how I would feel if it happened to my husband. I think you'll find that TP members wont judge. The one thing we are good at is accepting, whatever Dementia throws at us, somehow or other. I hope your dad has been able to find some peace, now that mum is at the CH. I'm sorry her decline has been so rapid.
take care
hendy

 

[Grannie G]

Hello Hendy

I`m so sorry your father ha slost his mobility. Just one more concern for you to try to come to terms with. If there is a possibility he will recover I`ll keep my fingers crossed for him.

And for you too.

Love xx

 

[hendy]

Dear Sylvia and all reading
Thank you. Had to rush the visit to dad today, its been horribly busy and frantic, picking up children and dog(thats another story) up and dropping off etc Ken working till late. etc managed to get to hospital and staff let me stay beyond normal visiting. Brought dad some clothes just in case he's discharged. It seems that hospitals manage to get this done pretty quickly these days. The problem was I wasnt sure what to bring for dad as his situation is different now. I still packed trousers, shirt and sweater and vest etc. He's been in hosptial gowns, but wasnt sure if to take his normal pyjamas? packed two pairs anyway. Then after I left, realised he didn't have slippers or shoes?? What had he come to hospital in?
Dad seemed to be very comfortable and relaxed, but I left realising that he has moved into a definate next 'stage' of dementia. I was later to find out it is described as 'end stage'
During the visit Dad did seem quite animated, he seemed to be wriggling alot. After telling him the latest family news it was time to go, and I heard a very clear ...'Thanks for coming love'
take care
hendy

 

[hendy]

Just read my last post, I think perhaps in doesn't quite make sense? Having had a chance to reflect on Dads changed state. It struck me, how baby-like seemed his movements. His arms and legs are curled. He was animated, in a relaxed kind of way. He was bright-eyed and seemd quite responsive, but still struggling to make sense most of the time. I am going to visit this evening and I will see if staff can give me anything definate about his recent decline. There is apparently some doubt as to whether it was a stroke that caused it. Isnt modern medicine amazing? They are still using guess work.
take care
hendy

 

[Lynne]

Just read my last post, I think perhaps in doesn't quite make sense? hendy

Jeez Hendy, our WHOLE LIVES turned upside down & tangled up with dementias - do you think we expect you to Make Sense on TP?

I think most of us got the general drift - when the s**t hits the fan, it usually does it from 3 directions at once, just to challenge you & see how you cope. AND YOU DID. You're brilliant. And that "thanks for coming love" made it all worthwhile.

 

[hendy]

When it hits the fan

Dear Lynne

Is this dementia or do you really possess a chrystal ball Lynne? You did mention three different directions at once?!

I managed to speak to the staff and tried to get an update on the latest with Dad. I suppose, going on recent experiences of other members on TP I could have written the script beforehand. Two bombshells waiting for me tonight.

1. Dad has Clostridium difficile. Probably got it after antibiotic treatment and being frail etc etc. Has been put back on a drip and is being given special antibiotics and moved to side ward.

2.The medics fitted a naso-gastric tube to dad today. The nurse who was telling me, said that it was generally considered unethical in dementia patients, I said that I was flabbergasted that this was considered as it was so invasive. The nurse said that she wondered how they even got his consent. I said, if they had asked me what I thought they wouldn't have had my consent at all. As it happened, Dad ripped it out not long after it had been put in, so that told everybody what he thought of that idea.

He later went on to have fish pie and a desert for tea,the nurse said, and ate it all up. During tonights visit, despite everything, he still seemed comfortable and was able to take a cup of coffee, during which he asked for some biscuits. He proceeded to eat four of them completely indpendently!
So, although the medics seem very keen on invasive interventions and playing God, they still cant decide what caused Dads decline. They are suggesting that it is a natural continuance of the dementia (which ever kind it is, becuase they're not sure about that either)
I suppose I should be 'spitting feathers' etc etc but I am all out of emotional responses. My first reaction to Dad getting CD, was well he's had MRSA, its just another superbug to add to the ones he's already had.
Maybe it will just take a few days for everything to sink in.
take care
hendy

ps Dad Wont be discharged anytime soon then either.

 

[Skye]

Dear Hendy

It certainly has hit the fan, hasn't it?

Your poor dad, as if he didn't have enough to put up with!

I doesn't sound as if he needed a naso-gastric tube at all, I don't think they should have fitted it without consent.

Karen has a link on her thread to a document which spells out what they can and can't do, perhaps you should read the relevant parts in case it should come up again.

Sorry you're having such a bad time. Let us know how he gets on.

Love,

 

[Mameeskye]

Hendy

What a time you and your poor father are having.

Putting in an NG tube with a dementia patient can be a sure sign for disaster. Even when Mum was in the mild stages she had difficulty with the tubes etc. when she was in hospital, just remembering what they were there for. and when tired or distressed could pull at them.

Hospital doctors just do not think. But then I think that is the problem with Western Medicine. They do not think holistically, probably becuase specialisms are so narrow, there are league tables and, let's face it, they just don't have the time.

I think it is yet another of those education areas. Dementia is so poorly understood and it is those of us who have been there at close hand unfortunately who know.

Sounds like your Dad still wants to eat though, which is a great sign.

Hope things are better today.

Love

Mameeskye

 

[Grannie G]

Dear Hendy

Your posts have left me lost for words.
The hospital staff seem to be floundering, taking pot luck with what to do. How can a NG tube be justified in a man who can eat biscuits and drink coffee.
My heart goes out to you.
Love xx

 

[hendy]

Dear Sylvia
Thank you for your reply. On my last visit to Dad he had another cup of coffee and some Jaffa Cakes, which again he ate indpendently. OK so its finger food. The staff say he's unable to feed himself from a plate and using cutlery, but it doesnt surprise me if he's got problems. He was finding feeding difficult before he was bed bound. I am left with the feeling he needs to be discharged to the home, where they can work on getting him a little bit more rehabilitated. They are far too busy on the ward to try and get him to feed himself, by offering suitable food and taking time with him, is just not going to happen. I think the dementia aspect of his care is becoming more of an issue.
Unfortunately, he is still in isolation because of the C. Diff. although he seemed to be feeling well considering.
I spoke further to a senior nurse re the NG tube, she said my dad is capable of saying no because he does sometimes when they take blood etc. So he is able to give consent, also he let them fit it so that was giving consent. I am not happy about this and I do not think it constitutes consent, dad just doesnt understand. Does this mean that all the other invasive procedures are given without consent? Should someone who knows Dad(like me ) have been present? When I visited yesterday, they were trying to fit another canular and they were getting cross with dad, because he was resisting, from what I could hear anyway. Was this consent? It really is a very worrying apsect of Dad receiving appropriate care. The medics will keep on treating him until they are able to say more about what has caused his problems. Are they forcing him to have treatment? But they still dont know. He was taken for another xray the other day, but they werent able to tell me what that investigation was for either.
I wished I could spend more time with Dad, but things are just impossible with work and family - I cant get anything done properly at the moment. I cant keep properly in touch with the hospital without becoming a nervous wreck.
take care
hendy

 

[Mameeskye]

Hi Hendy

((((((hugs)))))

I sometimes think that the medical profession just cannot/do not understand dementia unless they have seen a relative go through the slow decline. But what is worse is that they "think" they do, because they are the professionals.

But you, like me, having spent a lot of time with your relative knows what dementia does, and how variable it can appear and how an affirmative response does not necessarily mean what someone thinks it does.

I can remember relaitves in Mum's home who coul appear perfectly OK. It is only when you know someone with dementia that you know how far removed from reality that they are.

I do hope that you can get your Dad back to the NH soon.

Love

mameeskye

 

[May]

Hi Hendy

Do feel for you and your current trials with the medics. There is such a lack of understanding of dementia in hospitals, it seems particularly on medical wards. My Mum was in last year (so was my Dad too at the same time but that's another story)and if my cousin, who was recovering from an operation, hadn't been on the same ward, Mum would not have had anything to eat, would have ripped out a canula and would have been left lying in her own faeces, they didn't understand she needed pads??!!

Just to send ((hugs)) and sympathy to you, as I know it gets so tiring repeating everthing over and over again to the staff.

 

[hendy]

Dear Mameeskye and May
Thanks you for your kind thoughts and hugs - they are much appreciated.Hugs coming back to you! I suppose I should be used to all this - am an old hand at it now (coming up fo 6 years). Just doesnt seem to get any easier. Had a lovely visit with Dad yesterday. he was looking very comfortable, the nurses are doing a marvellous job really. He was quite animated, but sorry to say that the hallucinations are coming back to him. Not worried by these anymore as Dad accepts them, he can barely explain what he is seeing. Isn't it amazing how we can accept anything in time? Took him coffee and a giant chocolate chip cookie!(he managed most of it and loved it! Sometimes Dad doesnt know me, so rather than play guessing games, I just tell him, then he realises. Chatted away to him and eventually said 'goodbye - love you Dad'
Back came the reply 'Love you too'
take care
hendy