General Chat

Oh Huia
So sorry you are at such a low point in this struggle. Pleased your darling husband is being assessed properly and that you will have a little respite yourself.
Try to sleep and rest while you can. It will be hard as it will be different without him around. But this is time for you, so you don't have to worry where he is.................... ie wandering, putting on the cooker and the little things that add up to being so dangerous for you both.
Please know that I am thinking of you and your whole family and that hopefully a good solution will be found for you all.

Linda :o) XxX

Thank you Linda.

I think the first case manager misled me when she said I had to get somebody to come here to stay with him while I went away. Nobody else seems to know anything about it. I have been struggling on wondering who I could get to come when all the time I could have been looking at short term stays for him in a rest home. Not that there are often any vacancies, which I suppose is why the case manager suggested the other way round.

I will be taking a sleeping pill tonight. They seem to knock me out quite quickly, although I am not sure if they will this time, but when once tonight is over I am sure things will look better. Our son is coming up from Rotorua tomorrow so that will help cheer me up I hope.

Huia.

Huia, Really do feel for you, can't even imagine what your going through but so glad your son is coming for a visit, enjoy your time together and have a rest.
I hope you get the result you want and need, take care,

However much you may dislike the idea, from a distance, secure care for OH does sound like the best thing for both of you.

You can't carry on as you have - your own health will suffer and then where will OH be?

Enjoy your time with your son, and get some rest while you can.

Thinking of you
XXX

Just wondering if you carers have read my thread on the proposed withdrawal of attendance allowance and the care component of DLA please sign up to the petition at http://www.benefitsandwork.co.uk/disability-living-allowance-%28dla%29/dla-aa-cuts Once signed up you will get a weekly e mail update, below is the first one I had on Tuesday.

Persuading disability charities to speak out against the threat to disability benefits is absolutely crucial. Unless leading agencies like Mind, Arthritis Care and the MS Society are prepared to openly oppose these proposals it will be very difficult to halt them. The government will be able to argue that they consulted with 'stakeholder' organisations and they supported the green paper.

So whether charities are swayed by the strength of your arguments or alarmed by the prospect of losing members who feel abandoned by them, it's vital that they commit themselves to defending AA and DLA. So far only RNIB has been courageous enough to risk the wrath of six secretaries of state rather than desert its members.

So what we're going to suggest you do today is to get in touch with a local or national disability organisation, preferably one that deals with a condition that affects you or someone you care for.

Even if all you can manage is a quick email saying:

'What are you doing about the green paper plans to abolish some disability benefits?'

that will be enough to make them realise people are aware of, and concerned about, the issue.

But if you feel able to write in more detail, below are some of the points you may want to make. We haven't written a standard letter or email for people to copy because we think that they may quickly be dismissed as just a sort of spam.

1 Explain very briefly that you are concerned about the proposals in the Shaping the Future of Care Together green paper to integrate some disability benefits into a new funding stream for a National Care Service

2 Explain why DLA care component or AA is important to you.

3 Point out that it's vital that their organisation work with other disability charities to fight with you on this issue, because the government will find it hard to ignore a wide coalition of disability organisations.

4 Point out that RNIB have put a statement on their website saying they will oppose the scrapping of AA and other disability benefits and that if such a reputable organisation is prepared to do this then there's no reason why every disability organisation can't do the same.

5 You might want to explain that at the moment the campaign against abolishing disability benefits is being led by a private sector company and that you think this is highly inappropriate, it ought to be a coalition of charities leading the way.

6 You may also want to suggest that if charities look the other way as their members are deprived of a vital part of their income then it may result in charities getting a great deal less support, fewer members and fewer donations in the future.

7 Most important of all: ask for a reply. And if you don't get one, keep going back until you do. And when you do, send us a copy and we'll publish at least some of them. Or if you're a Benefits and Work member, post the reply in the forum here:

www.benefitsandwork.co.uk/forum?func=showcat&catid=13

If you'd like to contact more than one charity, then members of the Disability Benefits Consortium are worth considering. This is a coalition of charities which "aims to lobby and campaign on welfare benefits as they relate to disabled people." Clearly they are the people who should be running this campaign, rather than Benefits and Work.

You can find the email contact details for all these organisations on this page:

www.benefitsandwork.co.uk/forum?func=view&catid=13&id=10362

Another possibility is the members of the green paper stakeholder panel. There's a list of the members here, though we haven't had time to research email addresses - volunteers to do so would be very welcome:

www.benefitsandwork.co.uk/forum?func=view&catid=13&id=10356

If you want to be getting on with other things rather than waiting for next weeks' email, then there's a few suggestions here:

www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cuts/take-action

Thank you again for signing up to the No More Benefits Cuts campaign. At the time of writing you are one of an astonishing 13,815 people who have done so in less than a week.

You can read more about what's been happening, from RNIB's statement to details of a local campaign in deepest Cornwall, on this page:

Many thanks also to everyone who's been in touch. I do apologise if we haven't replied to your email or returned your call - there have been many more than we could cope with. But we do very much appreciate hearing what people have been doing.

Please feel free to forward or publish this email.

Good luck,

Steve Donnison

Huia
I hope you are getting some sleep. recharging your batteries will give you strength for when your husband is back after respite.

I do hope he is assessed as in need of care for you to be able to see him in safe care.

Don't forget to take care of yourself.

Regards Linda :o) XxX

Hi Huia

I hope that the family have all been able to have a good talk about the next stage of care whenever that may be. In the meantime get some good rest, don't worry about the cat (but keep filling the bowl).
Several people have told me that they had friends of long-standing whom they visited until recognition finally went completely and then they stopped. It is different for our own but unless some intervening medical event happens, this is a likely prospect for most of us to face with family with this debilitating condition. I have also been told by a person with 25 years experience as a needs assessor that each case can be quite unique. I have found that some days are easier than others. The family have said that they have left the timing completely to me. They would only use the power provided under the Enduring Power of Attorney if they thought I had got to the stage of being incapable of making such a decision myself.

Kind regards

Bob

Thank you Linda and Bob. Our son (who has EPOA) came up yesterday so I had some company. I didnt sleep so well last night but I sometimes had nights like that long before Phil became sick, and at least I wasnt worried about it as I knew I could sleep today if I wanted to without being on sentry duty. In fact I did get an hour after lunch, much sounder sleep than I usually have after lunch when he has been here.

I didnt get a phone call today with him wanting to talk to me. The previous 2 days I was called about 4 but perhaps they tried between 2 and 3 today when I was on the phone to some neighbours, or perhaps they persuaded him that he shouldnt keep 'upsetting' me by calling all the time. I will ring the hospital in the morning if they dont ring first, to find out what the next step will be, but I am confident that it will be long term care. If it is not, then listen for me yelling loud and long!

Huia.

Hello,remember me?
Last night I was talking to somebody whose husband has had a less severe stroke than my dad and it occurred to me that she and my cousins wife,he has also had a couple of strokes,are so very negative with them.

While I was wanting to tell how the old man had been out blackberrying and shopping they will just be wanting to say how their victim is unable to do whatever,without giving them the chance to try.Unfortunately,if you are told you can't enough times you will believe it..
Oh well,at least they know where theirs are.

Sharron, I hope you dont think I am negative and not pushing Phil enough. With alzheimers the brain cells are shrinking and just not making the right connections and all the pushing in the world wont make any difference. They can do highly dangerous things and need watching 60/60/24/365. Very exhausting.

Huia.

No,I was talking about stroke victims.

Hi Sharron

My brother had a stroke about October of last year and although he is in good spirits and has done very well he says that his brain seems to get tired and his daughter has been helping out sorting and paying the accounts etc. He had a golf lesson the other day and still makes a good cup of coffee and walks a good distance to get his morning paper. He has been told that recovery is like taking two steps forward and slipping one back for about the first twelve months. Two professional men he knows had strokes in their forties and recovered well but he is over twice their age. He has started back on his morning crossword puzzles and still plays a good hand of 500. Unless you know you would not think that he was not his old self. I think he has done marvellously and even gets a laugh from my BH which is great to see.
He is motivated to do the hard work for recovery but realises that he should not overdo things. His stroke was termed medium.
I think it is great that your dad feels as though he can help with the shopping and of course if you like blackberry jam on your toast, (and who doesn't) someone has to do the hard yards at blackberrying. Good on you both!

Regards

Bob

Hi there Sharron, I didnt really think you meant me and my OH, but at least it was an opportunity to explain to anybody who didnt understand alzheimers just what happens. If Phil had had a stroke I would certainly be encouraging him to do things, not that he would need any encouragement to try his darndest to get walking again. He just lives for walking and I just wish my feet didnt play up so much.

Bob, what are you doing up at midnight, says she who is now up at 3.45am. I woke and couldnt get back to sleep so thought a little play might tire me out again. I need to shoot into town reasonably early in the morning as I ran out of one lot of eyedrops so missed that one just after dinner. The bottles are white plastic and you cant see how much is in them. It says discard after 30 days but they dont even last that long. I must make sure I get a repeat 2 weeks after starting the new one so that I dont run out again. I cant afford to have my eyesight deteriorate too much (glaucoma).

Back to bed soon I hope.

Huia.

Befoe his stroke the old man shipped in an Alzheimer's victimWe had always known her and I think he missed having a damned difficult woman about after my mother died.

I have had a turn at chasing round the village at odd times,she lived down the road but he had her here most of the time.He always hoped she would get better,even after we had her sectioned.He visited her daily until she died,it gave hi a purpose and got him out of my way.Now his project is to be as normal as possible.

People see him blackberrying and give him other fruit.So I am at home in a haze of jam steam and fruit flies losing the will to live!

Sharron, I presume it is the fruit flies that are losing the will to live, not you.

Phil and I went blackberrying about 18 months ago but I speared myself on a thorn and later I wondered why my leg felt damp and looked down and there was a big blood patch on my summer trousers. I am on mini aspirin to prevent clots. I called to Phil that we were going home. When we got there I found a mini fountain coming from my leg so lay down with it raised after putting a plaster on and it stopped, but it has put me off blackberrying. :(((

Huia.

Not tasteful this.Three years ago next month,when he had his stroke,I had just been blackberrying.In the esuing bedlam the basket was put on top of a pile of clean white washing,including knickers,and forgotten.
I explained this to OH but it didn't stop him retching violently as he loaded the juice stained garments into the washing machine.

We didn't really expect the old boy to be blackberrying himself in his wheelchair three years on.And he's ninety this year.

Sharron, that would make a lovely colour for the undies, including any mens white undies!

Huia.

A large blackberry stain looks very much like a bloodstain.Looked like a massacre.

Well, a lovely colour, I have seen mens undies (in shops) that are red. Not quite blood coloured though.

I am going to town today to visit my hubby in the hospital. I will have to get a taxi the 23 km to our nearest town since my vehicle is being fixed in there (got taxi home yesterday) and will go on the train (free) to the hospital.

Better get moving.

Huia.

Just before I rang for my taxi our vol. firefighter friend phoned to find out how Phil was and heard my tale of woe with the vehicle. When I said I was going to call a taxi to get into town to collect it he said he would take me. He insisted, even though I dont think he was intending to go for himself. He dropped me off at the r/way station and I went to visit Phil who asked me 'who are you'. I had taken a few biscuits and lollies in plus his mouth organ and a clearfile in which I had put some copies of photos, 2 to an A4 page, so he could show people his family and some of the tramps we have done. His case manager looked at it and said she had been out our way. I gather she goes tramping. I can take him for walks, but have to take a psych(ologist or iatrist, I forget which) with us. I wouldnt dream of just taking him on my own as I know it would be difficult to get him back inside. When I was leaving I said I would come to visit again and he thought he was coming home with me, so I had to explain that he had a health problem and the hospital were trying to make him better and I had one too so I was going to the doc tomorrow to see if he could make me better as I couldnt look after him properly if I was not well, so I managed to get away a bit more easily than I expected. I hope I can get to visit him tomorrow afternoon. My docs appointment is at 10.30 and then I had already arranged last week to meet a friend for lunch as I hadnt seen her for quite a while so I will go after that. Another long day for me but it cant be helped.

Huia.