It's quite a journey!

[SteveS]

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

 

[Skye]

Oh dear, Steve, it's such a problem isn't it? You can see that your mum will find it difficult to cope, your mum is determined that she can!

Both sides of the picture are valid. Your mum loves her husband, and desperately wants to care for him. You equally desperately want to protect them both.

I'm afraid all you can really do is let her try. Make sure she gets all the support she needs -- and is entitled to -- from SS, and give her all the support yourself that is possible. When it becomes imposssible to continue, as it almost certainly will, at least your mum will know she's done her best.

Your dad seems to have declined very quickly. I know all about language loss, my husband suffers from this, but his has developed comparatively slowly? Is your dad on any medication for his dementia? He sounds to be well into the moderate stages, so should qualify, unless there are reasons why not. It must be so frustrating for him having to cope with the loss of his limbs, as well as dementia. Makes it so much harder for your mum too.

It's a lot for you to come to terms with. I'm glad you've found TP, you'll find lots of support here.

Love,

 

[jenniferpa]

Hi Steve and welcome to Talking Point

Do you know what kind of dementia your father has? As Hazel says, this seems very rapid, and although everyone varies, it does seem a bit too fast for Alzheimer's. Not that it makes much difference from a management point of view, but the sad reality is, if it isn't AD, Hazel's point about meds may not apply to your father.

I can't even begin to imagine how your mother will cope with an adult male who is doubly incontinent and a double amputee. How on earth will she move him? If she is truly determined to do this, you're going to have to make sure the OT provides all the aids that are available, including hoists (they can be a touch stingy about handing these out).

Jennifer
P.S. Since I assume hospitals aren't knee-deep in misplaced possesions, I have to believe that 50% of the waste leaving hopitals is made up of such things: my mother lost her teeth when she was in.

 

[SteveS]

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!)

 

[Grannie G]

Hi Steve, welcome from me too.

Your mother is certainly going to have her hands full, but I`m sure she feels she owes it to your dad to try.

What you can do is, as has been said by Hazle and Jennifer, help your mother get as much help and support from the services as possible. You can also give her the re-assurance that when and if it gets too difficult to cope, she should have no guilt.

As for you, please feel free to `pour your heart out` whenever the need is there. We all know where you come from and what you`re going through. We are in it together.

Does your mother use a computer? If so, try to persuade her to register with TP [Talking Point]. Caring is a lonely business and she will be assured of friendship [however virtual] and support.

Take care

 

[SteveS]

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

 

[taylorcat]

Steve,

My Mum has dementia and I think I am in quite a similar position to yourself in that Mum has recently been discharged from hospital, she is also double incontinent. I think it would have been best for both of them if Mum had gone straight into a home but Dad was having none of it. She is now home and Dad is falling back into his old habits. After speaking to people on TP I now see the situation a bit differently in that they both need each other. It may indeed be caring for Mum that's keeping my Dad going. Although I don't know how he does it there's nothing else I can do but help out when I can. Given that your Dad has lost his limbs does make it a lot harder but if your Mum wants your Dad home that's up to her.

 

[Skye]

Steve, it gets worse and worse! How on earth is your mum going to manage to lift your dad, and change him, when she has osteoporosis and a heart condition?

I don't think it will be too long before she has to admit defeat, and she's going to be so distressed. You're going to have to be so strong for them both. My thoughts are with you all.

Love,

 

[Whiskas]

Hi Steve,
I am my Mum's full time carer and I struggle, she doesn't have as many problems as your Dad and I don't have the same problems as your Mum. I expect you have to let your Mum try to look after your Dad and be there for her if things don't turn out well. Not easy but you will find lots of support here.
Take care.
Cathyxx

 

[Cate]

Hi Steve

I'm so very sorry this is happening to your parents. I admire your mum for sticking by her man, but I think Hazel is right, its not going to be too long before mum has to admit its all to much for her.

You can only be there for them both and let them do this, but I think I would be inclined to start researching alternatives. You dont want to be in a position of rushing around if things hit crisis.

Best wishes

Cate

 

[Nell]

Dear Steve,
Your Mum and Dad are lucky to have you. Your love and concern is obvious in your posts. I can only agree with others - no "magic" solutions I'm afraid.

Come back to TP whenever you need support - you will always find that here. And while every dementia journey is diffeent, you can be sure we understand what you are going through.

Give your dear Mum as much support as you can. When she finds she cannot support your Dad at home (which I fear is inevitable, given the other issues) she will need lots of reassurance that she is NOT failing your Dad or herself.

I and others on TP are thinking of you and sending you caring wishes.

 

[candi]

welcome steve we have just had to place my mum in a care home, my dad wanted desperately to have her at home and we went through the options for 24 hour nursing care but in the end the consultant sat dad down and told him he would'nt be able to cope and not in so many words the social services would'nt pay for 24 hour nursing care. even though he was very upset he had time to think about it and did realise is was for the best to have mum move into a home. we as a family took our time finding the right one and now mum is living two minutes walk away from dad. he has not been well ( he has had two heart attacks and has diabetes) and even though we as a family were worried about him coping at home with mum it took the consultant to make him realise this would not be possible. perhaps if the doctors and social workers talked to your mum about just how much care your dad will need? i think it's heartbreaking that couples have to be split up after in some cases being married for years, my mum was still working age and they had so many things planned for their retirment together. love candi

 

[SteveS]

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.

 

[Grannie G]

What an ordeal, Steve. It is a nightmare, feeling there is such a lack of care. All you can do is make your presence known and question the lack of care you witness.

I hope you will be available to support your mother when she talks to the professionals. She will be emotional [I presume] and anyway, 2 heads are better than one.

Please post with an update, and I can only suggest you visit as often as possible, while your dad`s in hospital, so the staff are aware you`re there.

Take care

 

[sue k]

I can understand what youre going through , my dad had been in hospital for the last 9 days with a chest infection and a urinary tract infection too , he has alzheimers and is incontinent. No matter what time of day ive visited i have found my dad sitting in wet pyjamas, very upsetting for me but i wonder how does this make my dad feel ( if anything)

I find myself becoming very frustrated and let down by the nursing staff who are there supposedly to care for my dad . Its a never ending nightmare for us all

 

[SteveS]

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!!

 

[sue k]

hi steve

my dad left the hospital and went back to his care home today, lets hope he gets some decent care there.
I worry constantly about him and although the home seems to be very goog , it will never be good enough for my dad ( hope that makes sense)
I had a good visit with him today, he recognised me and was able to chat although a little onesided on my part , he didnt nod off on me, and even managed a smile for me ............ well that made my day

Take care

 

[Skye]

Sue, it's really good news that your dad is out of hospital.

It's even better that the NH sounds good. Let's hope you get lots more smiles.

Love,

 

[sue k]

thanks hazel i hope so too

 

[SteveS]

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.