General Chat

.....it can be a very difficult time for both of you. I didn't realise (naively !) this was on YT, but it was one that I played and sang (quitely..) to OH.

Hard to do, but actually gave me some additional strength when needed. It may do the same for you, if you are in that situation x.

This may not be the right arena, but I know there are a number of GR's out there who remember Daff well .... ignore the video :-)

iVE cared for my daughter,with the help of hubby for 31yrs,she has really bad epilepsy and mild special needs, daughter works part time and has done for almost 15yrs,sh lives with us,but gets by with our help,its an on going thing,no one helps her except myself and hubby :-)

Suzanne, although not directly involved with such care, Daff was - many years spent with children and adults with special needs, and also had a beautiful niece who had DS.
Through her I began to understand the difficulties families encountered when caring for those with all sorts of needs - even the thugs !!! One 9 yo, when she asked him what he wanted to be when he grew up told her "A burglar, miss .... but not your house 'cause we like you" !
When I asked why she continued in the work, despite a number of violent encounters, she simply said 'because they need someone they can trust'.
Says it all really - it's what your daughter is receiving, beyond the love... x

MrDaff, this is the right arena cos many on here are caring for very poorly relatives and some feel isolated.

Peoople are afraid to let their guard down and admit they wanted to scream, cry and (in my case) could have cheerfully throttled my sister some days.

Luckily I had my own GP at the end of a telephone as well as my sister's GP for support.

If more people opened up and truly expressed their feelings it would help many to come to terms with how they are caring/did care for a loved one.

I told Daff I loved her everytime we spoke or I saw her, I just wanted her to know that no matter how much she had changed my feelings hadn't (if that makes sense).

All carers need to be able to offload to another person slightly detached from the family's agony and it's a case of whatever gets you through it as best you can.

You would make a great 'listening ear'. <3

Sue, not with that song ... I 'blub' :-( <3

OOOhh, sri, left out the link :-S :-S

http://www.youtube.com/watch?v=_bqdeUdeH9Y

Along with my husband, I care for our 25 year old daughter who has special needs and a rare syndrome. also some autism. It was difficult for my husband when I was ill , but she is such a lovely young lady and we are so proud of her. I do worry about the future. What if I am ill again. I have to shower or bath her, wash her hair etc. Also worry about what will happen to her when we get older.

Suzanne it must be so hard for you with your daughter having epilepsy, I feel for you.xx

I had a feeling it could be that or the other obvious one <3

You should still write that book!

I always told Daff that she should write a book.

Sylvia, I can't imagine with any accuracy, what your situation is, but is there any possibility of introducing a 3rd party/parties that may be able to introduce some form of 'building blocks' to help you?
I'm thinking along the lines of 'Recognition - Familiarity - Trust', that may alleviate at least some of your concerns for the future? :-)

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?

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

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

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

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.

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 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!

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.

Thank you Mr Daff <3

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!

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