General Chat

I too remember Daff so well.I didn't post so much from 2009 much as I was full time carer,I was a carer from 2006 but was so much worse as time went on.
I talked to Daff and if my memory serves me right helped her to find a convict to Oz?
She was such a lovely person.

My husband had pulmonary fibrosis,diabetic ,incontinent and on 36 plus tablets a day not to mention 2 machines pumping the highest oxygen out day and night ....The last two years till he died in Aug 2011 were horrendous and I had no respite as I knew he was in his comfort zone at home.There were times when I despaired how long I could go on,and as most have said I had to have a friend to unload to at times.
I had a lady from Crossroads charity come and sit with him for two hours in the last year which enabled me to do a "supermarket dash".
Apart from that I had a carer come in to wash him,but they are never around when you need them ...like getting him into bed unless he would go to bed at 8 pm,so I had to lift his legs ..and he was over 6ft and not easy..but I persevered until his oxygen levels were so low he had to go into hospital...and that wasn't a good experience as he was pushed around.
I am listening now to my friend who listened to me as she is in a similar position and says I am the only one who understands.

Sharron.....I have leg bags night bags still,all sealed up and no one wants them.Ive tried homes etc but they send off for their own.District nurses don't want them.I am of an age where I loathe waste...couldn't they be sent to a poor country?
I also have sealed sheath catheters.I gave the "huggies" as my oh called them to my friend to use so that is fine.
I empathise with anyone who has the task of caring on a long time one to one.
It is a hard job to do....but you know....I'd do it all again if I had to.!

l have just listened to the words and l cant stop crying , just got sister on the phone she coming roundl just want to hug her .
thank MrDaff....lwas told to keep my distance from sister so she can learn to cope on her own, but shes so so sad

jude x

@GiN: Daff had those side restraints on the bed when in hospital - she climbed over them and took a tumble (cut lip, black eye). The other patients in the Ward couldn't get to her in time to stop it and hit the panic button, but it was too late, over she went!

She didn't remember anything about it though, and at least nothing was broken. Nothing to be done short of restraints, and that was not going to happen. You can't prepare for all that can happen, unfortunately.

Hope things okay.... ;-)

Have you ever had much patience with him Lynda? If not,why would you expect to have it now? You are still the same people.

I have always said that the stroke was the old man's not mine.It was never going to turn me into Mother Teresa.

Thanks, John.
Husband rang earlier from the hospital to say Dad is waiting for Xrays, though it's unlikely he's broken anything. I don't have a lot of patience with him, I'm afraid, so it's just as well my Hubby has!

Lynda :-)

I feel a bit like an intruder even looking at this thread, but it is lovely and very heart-warming. All these people who need or have needed help are very special and, it seems, very loved. However difficult it is, it seems love conquers all and you soldier on till someone tells you that you have no strength left and, if you don't let go, it will badly affect your own health. Respite care must have its own worries.

If I am spared for another 20 years, I expect I will will be like Geordie's dad. A real cantankerous and independent old man. We are often only happy if we are cantankerous. Hope old boy is ok this morning.

Does he go to a day centre or anything like that Brian?

My BiL who is Downs, 47 but with a pre-school mental age, lives with us.
He cannot read or write or prepare a drink or food but the local authority does at least provide funding for carers so that he can be looked after for a few hours a week and we can get out to do a few jobs or the occasional leisure time.

People like Mr Daff are the real carers.They do proper caring.I am just a facilitator.

Fred is not ill and I don't do bodily functions.I don't even put his washing away but do have to raid his drawers sometimes to see how much of mine he has purloined and to return the underpants he sends upstairs for me!

The nearest I do to selfless caring is to hoist him on to the bed of an afternoon for his kip.

Other than this we are just three people leading our lives although one of us is more inconvenienced than the others.

At least I have some idea where he is these days.He did ship in a girlfriend with dementia before his stroke.Now,that was inconvenient,she was a bolter. I really don't miss playing Hunt the Old Biddy round the village.

Nice one Mr Daff, Thank you for that. :-)

My Dad fell out of bed at about 2.45 this morning, and Careline rang to say that the paramedics were on their way. My husband went straight over, and rang to say they have taken him to hospital for Xrays, as he has banged his head and hurt his shoulder: hubby has gone with him. Social services have provided sides to his bed to prevent falls, but he's still managed it!
So, I'm waiting for further news - he will hate being in hospital! But, maybe this will make the stubborn old fellow realise that he cannot manage on his own, despite carers and our help.
What are we going to do with him!

Thank you Mr Daff <3

I, fortunately, am not in the position of being a carer but I am a volunteer with Gloucestershire Lifestyles (was a trustee until a year or so ago). GLS provides carers with high quality, flexible, tailor made respite and support to meet specific needs. This worked well when government grants were there to support our support. Unfortunately it is a little more difficult since the funding was changed and people are responsible for their own budgets.

However it does give me some insight into the needs of carers as well as those cared for. And I do so admire those of you who care for your loved ones. And from contact with Daff until the last months, I do know how much she appreciated the care you gave her Mr Daff because she was unstinting in her appreciation. We never know what is round the corner and any of us could find ourselves caring for our OHs, parents, children. Bless you all.

And the words of that song Mr Daff are lovely.

I feel for you, Sharron, my Dad doesn't live with us, but lives in a retirement flat. He has carers 3 times a day, but the rest is down to my myself and husband. Nothing is ever right, and he loves to sit there like lord muck while ordering us around! He is registered blind and not very mobile, so can literally do nothing for himself.
However, he does have all his marbles, and has a sharp wit. I sometimes feel selfish not having him to live with us, but it would drive us crazy, and he wants to keep his own place, anyway.
Well done you, Sharron, I just couldn't do it!

MrDaff, I do admire you. You took such great care of Daff, and to now see you putting your knowledge out here for others is great. I was caring for my OH who had alzheimers-type dementia and it wasnt easy. He was able to feed himself and dress and shower etc while he was still at home, but it got to the stage that he needed to be watched every second, and he had started doing potentially dangerous things, and as I was turning into a zombie from lack of quality sleep it was felt that it was 'either him or me' so I very reluctantly persuaded him to go with the doc to hospital 'for a few tests'. He was reluctant but I pleaded with him to go for my sake as I needed a break. He finally agreed. I knew full well that he wouldnt be coming home, he didnt know that. It made me feel a bit like a traitor, but it was for my own good as well as his. My son had felt he should have gone in earlier but I held out as long as I could. I now visit him at least once a week. I dont know if he knows who I am, or if I am a familiar voice or face, but I hold his hand and chat to him and sometimes sing to him. He has been in care for over 3 years and will be 83 yrs old tomorrow.

I have always said 'dont bottle things up, it helps to tell other people how you feel'. I hope all the people who are carers have somebody with whom they can share their feelings. Best wishes to you all. <3 <3 <3

I don't do bodily functions,he is not in ill health,nor is he in any pain so I think I have it pretty easy really but I can understand why some people keep stroke victims in bed and treat them as invalids.

Sharron, it is a challenge, no getting away from it. But we do it - the hospital appointments and visits, the drug charts and distribution at the times / days stated, the repeat prescriptions, transportation, showering and dressing, feeding ad infinitum.

That is a strength that few of us knew we had or have.

But we do it. Why? Because we love the OH or relative or friend, and whatever happens we will cope until there is no other option, for our own sake, but to seek assistance, at least that's what I had to do... <3

Sharron, how hard for you. We get that many appointments which are usually cancelled time after time, dates or times changed etc. This would be ok if it was just the one appt. but when we get a few its confusing. Have to say it doesnt take much these days to confuse me lol. We have had that many changes of appointment that next week on the 8th we have 3 hospital appts. x

Hi Mr.Daff.
We have been thinking about that. Our daughter says she always wants to live with us and that is what we want. Its hard to think about really but at some time in her life she may have to live in somewhere with a carer, maybe a place shared with others with similar problems. These places are hard to get and we were offered a place for our daughter the first time I was ill. We had to decide straight away the place would soon be filled as there are waiting lists. We just could not let her go and she didnt want to. x

I don't do bodily functions but it is the admin and organizing that wear me down.

Booking blood tests,hospital transport, eye test where there is disabled access,persuading him he can go on the bus even if that awkward bus driver would not help and let him fall out of his chair,becausehe has a free bus pass and a taxi costs thirty odd quid.

Having to keep on top of things in an emergency because only I know all the details.In a power cut the social services wanted to provide a matress for somebody with a profiling bed who can't sleep flat.

Chasing the benefits because the bank decided they would not take them.Learning that one leg bag lasts through seven night bags after I had turned the house into the National Nightbag Collection.

Finding somebody to cut his hair

It just goes on,on top of not sleeping properly because I am always listening.

All a challenge innit?