Hello all, I'm really new to all this, but have felt compelled to join the forum to gain as much help and learn from other experiences as possible. My Dad has dementia, something that my wife and my brother and his wife have suspected since last christmas - unable to converse coherently, in and out of the conversation, staring at the TV for hours, chain smoking and letting the lit end drop to the carpet, dressing out of character, not shavong or washing sometimes....I'm sure it's familiar territory.
Mum refused to accept that there may be something wrong at first. Dad is a double amputee, and began to refuse to wear his legs, he became quickly disorientated and developed a water infection, ocassionally being doubly incontinent. Mum let him sleep on the couch until one day she couldn't cope any more. I got her to agree to the doctor to visit, she was no fool and had him admitted to hospital immediately. That was late April and he's now in the discharge unit, under assessment. We've noticed a declined in his conversation each time we visit. He's become rowdy in the evening, and often sings. but he's not offensive at all. We've all found it hard that this man was clean, had a routine, able to go down to the pub for a couple, socialise, has now reduced to a incomprehensible frustrated inactive being. Heart breaking and very distressing.
The social worker - agressive and assuming, making promises to get things done, but never quite gets there! Nursing Staff have been gentle and caring although they've let him lose his reading glasses, and his top set of teeth were left by a sink in apot for most of one day....He's completely doubly incontinent, the Occ Therapist is caring and she is concerned that he is going to be too much for Mum when he is discharged home - as per the outset, it would be simpler for the hospital to let him go to a home, but Mum aint having that.

Sorry it's lengthy - pouring my heart out

steve

 

thanks both for your kind words - Dad hasn't been given a title for his illness, all we've had is "he's really confused", "it's confusion", "dementia" - patt on the head and we understand.............that's what makes it harder for some closure to be able to cope. No medication as such has been offered, don't think the hospital sees it necessary to medicate a 78 year old.....he's on warfarin for his blood (used to be a heavy smoker) and something else for his water works..and a sleeping pill to calm him at night.

His declination if i can call it that, is over twelve months or so, resulting in this stage. My Grandmother went very quickly, over a period of months (Dads mum), Dementia is on her death cert.

He can't describe curtains, and has episodes about being at places or know people he hasn't met or been to, can't describe or recognise the TV remote, we were at the hospital yesterday and watching TV he told me the remote was a comb! (try getting it through your hair!)

 

Thanks again - mum doesn't use a computer, i fortunately work from home most of the week so can keep an eye out. i'm going to take extracts from here and show her she's not alone with just us.....

She has osteoporosis, and a minor heart condition, so the journey isn't easy. Visiting at the hospital is labourious, as she takes her time shuffling down the corridor (won't let em put her in a chair to chauffuer her to the ward).

Thanks for the advice - we are going to try, although the hospital are verging on insistance to getting him into a home, to let him come home with local carers during the day for a week or so, just to say this is how it is now, can you cope?

It's really hard and I am reduced to tears in my private moments thinking of the distress this causes not just my mum, but the probable distress my dad is going through when he's looking for words. He used to be able to do the Times crossword in half an hour without much trouble at all. He read three / four novels a week and was never out of the local library. He now struggles to converse, won't read at all, and finds the newspaper difficult too (even short passages). If we ask him whats on TV at any time, he can't describe although he loves to watch sport, football in particular.

This website and forum is brilliant, a real leveller. Once I know in depth what I'm dealing with, I too will support others.


now to do some work
Steve

 

Thursday. Waited for ten minutes at the end of the ward to gain entry as the buzzer was broken - it had been for weeks and we'd been fortunate to be let in by passing staff.
We've returned from what could be described as a harrowing visit. Dad had soiled himself, was frustrated and confused on what to do, the stench was really bad. I went for a nurse to change him. The physio helped him onto the bed via his wheelchair. Two nurses arrived and drew the curtains. Went away and ten minutes later changed him. He was upset, we were asked to take a seat before the ten minutes, and waited. It was only when i chased the two nurses talking about a nght out, tha they changed him.

Sunday. Waited at the end of the ward again - knocked on the door - a sign told us the buzzer was broken. Staff seemingly ignored our knocks to get in. We eventually were seen as visible.
Dad was found in an agitated and incomprehensible state when mum and i arrived. The conversation was one sided, he just gabbled mutterings and a few sentences on a meeting at work (retired in 1984). He was sleepy, so I went to ask the staff to help him into bed. A nurse at the nursing station said she was new there and would get someone to help her. When we left an hour later, she said that it was tea time, and bhe wouldn't get his meal if he went to sleep then! - wish they'd told us!!!

Looked at his observation charts - not up to date. It's apparent, that the staff are overstretched or redeployed to a job they don'y really care in. We're in a state of distress and there's no one who wants to talk to us - we have to wait until the week days when other staff are on....even then it seems too much trouble.


A positive:
Mum has 95% agreed she wouldn't cope with Dads' demanding demeanor - she needs to talk to a professional to get support, the hospital are "heads down"...the sooner we get him away from the patronising staff the better.

 

Hi Sue,

I can sympathise with you here. Health Care doesn't seem to be that good at his hospital - if we go over the border to Manchester, well, there's a significant improvement, and we've witnessed it.

We went yesterday, his birthday - took some cakes and cards. He was made up with it all but didn't have (or seem to) any regard for the occassion, he enjoyed the cakes though!

his glasses turned up - the list that went with him said they were on his face - but where were they? We'll never find out, nobody wants to tell us either.

He was moved to another ward as the original one was being refurbished. We hated the place, bare, stark and no tv for him or others to see, the moved patients obviously don't like the environment in there.

Thought the staff would be a little more attentive - but it's the same ol' tale - "short staffed" - one poor old fellah (in for another reason) was left in the loo yesterday - assisted by nurses into the loo, he used the call button for the staff to collect him, and wasn't seen again for ten miuntes - I personally think this is unacceptable.

The staff, for reasons unknown, are sullen, unmotivated and don't really recognise visitors or be cheery with them. Are professional but detatched and marginalised. Quite frankly, We're amazed they get through the day! Everything seems to be an effort.

Mum has agreed that Dad needs to go into a care home. The OT said that she would now have less to do with him and the SW will contact us to arrange visits and arrangements - good job i can hold my breath for long periods of time. I'm afraid that once we're out of there, I'll be really glad and reassured he's being properly looked after - if I had the money I'd transfer him today!!

 

good news for you Sue, and it's reassuring I'm sure that he has the correct care in the home.

We came back from a good visit today - although for us it was one sided too - Dad has lost some speech and is now slurring his words, he has a sense of humour and we laughed toady. We've complained to the hospital re the posssibility of contamination through soiled visitors seats, the lack of a TV, bare walls, and more.....I've had a conversation with the customer service person and she's coming back to us.

The Social Worker gave us a form to fill in to get finances assessed over his care, a list of homes of which the nearest is ten miles away - we know of two in our immediate area and the list is a fob off....

Update to follow.