Respite

[Aisling]

Not only are these the after effects of your flu, but also your body is telling you that you are very very tired, due to all your caring duties, and must take things as easy as you possibly can.

The best advice I can give you is to ignore whatever jobs you can, and just concentrate on what is important. My housekeeping standards took a distinct downward spiral when looking after John took up more and more of my time.

But nobody reported me to the Cleaning Police, and I found that it was hard for me to distinguish whether I was physically tired or mentally tired - probably both. Mental exhaustion could be mistaken for depression, and I was exhausted, for example, mentally, answering the same questions, over and over again.

I'm not suggesting you ignore things like cleaning the loo, but I found myself glossing over a lot of unnecessary tasks. It's like choosing which battles to fight. We've all only got a finite amount of energy, and unfortunately, phone calls to hospitals, Social Services etc, take up so much time, and you often come off the phone exhausted.

Look after yourself Sweetie - you deserve some TLC too. xxx

You are a star. Thank you.
Aisling

 

[LadyA]

Aisling, if you want to keep your husband at home, but you need some help, like home care assistant or home help - make it clear to the SW that you want your husband at home - but that you need support. Don't be pushed into something you aren't ready for.
Having said that, bear in mind that it can take quite a time to process applications for nursing home support funding (fair deal scheme) - and once the funding has been approved, you then have another six months in which to take it up, you don't have to go with a nursing home immediately. Remember though that with the application processing time and then the six months after funding is allocated - you could be looking at about ten months altogether from when you apply, before you would have to make that final decision. Ten months is a very long time when you are looking at the progression of dementia. It's something that needs careful thinking about. Will you still be able to cope as well, in ten months time, given the progressive nature of the disease?

 

[Jinx]

Try to give the SW the benefit of the doubt till you've had a chat, you never know there might be some help available, I do know quite a lot about flying pigs but my SW did occasionally have his uses even if it was only to put me in touch with other services that were actually quite helpful. Hope it's not a complete waste of time. xxx


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[Aisling]

Try to give the SW the benefit of the doubt till you've had a chat, you never know there might be some help available, I do know quite a lot about flying pigs but my SW did occasionally have his uses even if it was only to put me in touch with other services that were actually quite helpful. Hope it's not a complete waste of time. xxx


Sent from my iPad using Talking Point

Hi Everyone

Thank you. I can't explain the meeting. Am trying to get my head around it. She seems nice. Wanted me to do all the talking I think. I sat with the silences, eye contact etc. Of course OH was joyful, smiling etc"......... Ah........ Just before she arrived I was on my knees cleaning toilet. Enough said. I answered some questions with another question. Got mantra of people don't understand! Me, isn't it time to raise awareness? Like other diseases? What did I think of people not understanding? Me, well I have ideas, raise awareness and then found myself launching into the " what is truth" debate! She wrote her notes and I wrote mine!! In fairness she was briefed on my reluctance to see a SW, and that is fine. I think she is a nice person and she knew about Alyz. She will meet me again if I am ok with that so I said ok. She brought me info re red toilet seat and if I didn't have a debit/ credit card, she could order it and I give her cash. Again I admired her for that as she is aware that not everyone has a card. I made it clear that I had Enduring POW and that I made decisions for T. Also t has his GP who is my first port of call and said that change of meds was excellent. That will now be repeated to LN !! She already knows and had her meltdown! Oh yeah, it might be a good idea to talk to an OT and I may be entitled to small grant for Toileting structure changes. This came at end of meeting. And yes she agreed that I needed extra help. What did I need? I asked for two hours one afternoon in week.



In the middle of all this canvassers for election arrived in yard. Two men sitting in car. One continued to talk on phone! Me; do you want to talk on your phone or talk to me?? That was a great start. Suffice it to say phone was closed immediately.

Have mixed feelings. Feel weirder today about. Think I royally messed it up!

Aisling

 

[Jinx]

Well, it sounds a bit of an odd meeting but you never know some good may come of it, fingers crossed. xxx


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[LadyA]

It may indeed. Certainly, an attempt should be made to get you some support to enable you to keep your husband at home for as long as you feel able. After all, hasn't the Government closed a lot of nursing home places, on the basis of their own stated policy that supporting people to remain in their own homes was preferable. Of course, they then cut the Home Support hours to the bone too- but tbh, Aisling, if the LN gets out to you, the Social Worker gets out to you, even political canvassers get out to you - then you can't be in THAT remote a spot that the HSE, the Carer's Association or the Alzheimer's Society between them couldn't let you have someone for two hours a week!!

 

[Aisling]

It may indeed. Certainly, an attempt should be made to get you some support to enable you to keep your husband at home for as long as you feel able. After all, hasn't the Government closed a lot of nursing home places, on the basis of their own stated policy that supporting people to remain in their own homes was preferable. Of course, they then cut the Home Support hours to the bone too- but tbh, Aisling, if the LN gets out to you, the Social Worker gets out to you, even political canvassers get out to you - then you can't be in THAT remote a spot that the HSE, the Carer's Association or the Alzheimer's Society between them couldn't let you have someone for two hours a week!!

Yes it should be possible. I messes up the post too. I meant it to read " hi everyone ". Tried reposting..... No joy! Aisling

 

[Aisling]

am wondering how you all do such a great job and not go insane!! My nerves are stretched!! All over the place since SW meeting and how stupid I must have looked.

Anyone tired of hearing someone sighing all day long. Am drained from trying to focus all attention on T all the time. He can't change his behaviour. If I sit down, he stands at door or walks and walks around the kitchen wanting to go home.

When he is asleep, I used to be able to watch tv, read and go on TP. If I leave room he walks up immediately and gets restless. I sorted it last night, waited for him to go asleep and then got on iPad under the duvet!! Am getting a book light soon to read!! I read with a torch as a child!! Tv is out so no catching up on programmes.

Exhausted the other night and shouted at him. You can imagine the scenario! Tabs are working so I couldn't understand this behaviour. Next morning I found tablets under table!!

Sorry for rant

Aisling

 

[Alicenutter]

am wondering how you all do such a great job and not go insane!! My nerves are stretched!! All over the place since SW meeting and how stupid I must have looked.

Anyone tired of hearing someone sighing all day long. Am drained from trying to focus all attention on T all the time. He can't change his behaviour. If I sit down, he stands at door or walks and walks around the kitchen wanting to go home.

When he is asleep, I used to be able to watch tv, read and go on TP. If I leave room he walks up immediately and gets restless. I sorted it last night, waited for him to go asleep and then got on iPad under the duvet!! Am getting a book light soon to read!! I read with a torch as a child!! Tv is out so no catching up on programmes.

Exhausted the other night and shouted at him. You can imagine the scenario! Tabs are working so I couldn't understand this behaviour. Next morning I found tablets under table!!

Sorry for rant

Aisling

Oh I can imagine the scenario! And don't we feel bad afterwards? Xxx

 

[Aisling]

Oh I can imagine the scenario! And don't we feel bad afterwards? Xxx

Definitely.

Aisling

 

[Scarlett123]

I wish all the politicians who spout on, earnestly, about help needed for Carers, would read TP!!! Please, please remember, that you are a human being, who has had a severe bout of flu, and you're sooooooooooooooo tired.

And, when you can, type up a "To Whom It May Concern" statement, that you can update as and when, detailing exactly how your husband's illness impacts on you both, and especially your daily life.

If you feel you didn't say all you wanted to at your meeting, you could email it, as an attachment, and tell a fiberette and say you forgot to hand it over. And in any case, as things change, if you've saved it, it's easier to amend.

I couldn't say anything about John, if he was present, because he would deny it, and it would lead to a dreadful atmosphere when the visitor left. This way, you hand it over whilst you make the tea (I used to ask John to help me, and gave him some biscuits to arrange on a plate), the person reads it, and you've no need to say things that your hubby may not accept.

If we had to go elsewhere for a meeting, then I would hand a copy in at reception when we arrived, in an addressed envelope, and ask that this be given to Dr Blank, prior to our appointment. This saved us so much unnecessary aggravation, and it meant I could explain exactly how things were, without distressing John.

 

[Aisling]

I wish all the politicians who spout on, earnestly, about help needed for Carers, would read TP!!! Please, please remember, that you are a human being, who has had a severe bout of flu, and you're sooooooooooooooo tired.

And, when you can, type up a "To Whom It May Concern" statement, that you can update as and when, detailing exactly how your husband's illness impacts on you both, and especially your daily life.

If you feel you didn't say all you wanted to at your meeting, you could email it, as an attachment, and tell a fiberette and say you forgot to hand it over. And in any case, as things change, if you've saved it, it's easier to amend.

I couldn't say anything about John, if he was present, because he would deny it, and it would lead to a dreadful atmosphere when the visitor left. This way, you hand it over whilst you make the tea (I used to ask John to help me, and gave him some biscuits to arrange on a plate), the person reads it, and you've no need to say things that your hubby may not accept.

If we had to go elsewhere for a meeting, then I would hand a copy in at reception when we arrived, in an addressed envelope, and ask that this be given to Dr Blank, prior to our appointment. This saved us so much unnecessary aggravation, and it meant I could explain exactly how things were, without distressing John.

Thank you everyone.

That is a great idea Scarlett.

Well I asked for more help so will see how it goes. Am not holding my breath!!

The carer who comes in 2 mornings per week to help with baths has told me he can't come on Friday or next week. In fairness he is a young guy and excellent.

Lots of hugs,

Aisling

We saw the sun again today!!

 

[Aisling]

It may indeed. Certainly, an attempt should be made to get you some support to enable you to keep your husband at home for as long as you feel able. After all, hasn't the Government closed a lot of nursing home places, on the basis of their own stated policy that supporting people to remain in their own homes was preferable. Of course, they then cut the Home Support hours to the bone too- but tbh, Aisling, if the LN gets out to you, the Social Worker gets out to you, even political canvassers get out to you - then you can't be in THAT remote a spot that the HSE, the Carer's Association or the Alzheimer's Society between them couldn't let you have someone for two hours a week!!

Apparently the carers ass can't give me any more time than 2 hours per week. The Alyzheimers have no one to help me. The LN only talks about fair deal. The last assessment T had with the team of two said it was time for long term care and to more or less get on with it! Asked T the usual: what day? What time? Add 15 and whatever etc. amazing stuff!

At least SW said that she would request more help. She would help me by meeting and talking"............ sure I haven't time to shower! After making total mess of the meeting I am peeved off now but I will stay positive!

Without TP I would be gone stark raving mad. I have no idea how I found it but it is brilliant.

Hugs from Aisling

 

[Scarlett123]

Sometimes I used to get the feeling that I was like an irritating itch on the Social Worker's nose, that wouldn't go away. No, I lie. Frequently, I was made to feel like that itch!

To begin with, I adopted a stoic countenance. This is my husband. I can cope. I will cope. Also, to begin with, I obeyed. When the SW, or whoever, insisted that John should be present during all these meetings, and fired zillions of questions about him, to me, I answered. Then the SW would leave.

They weren't present afterwards, when John would accuse me of making up things about him, and the distressing aftermath. Then I hit on the idea of the To Whom It May Concern statement. I also realised that being stoic, controlled, calm and grateful for crumbs, got you nowhere.

So, whenever I had to make a phone call, asking for something, whether it was extra hours at the Day Centre, for which I paid £9 an hour, or help with dressing him etc, I stopped biting my lip, and just let the tears flow. I would never shout, swear, or lose my temper. But I cried. How I cried. I found "cry" was always present in my voice anyway, after all, what carer finds this all a bundle of laughs? So I'd literally "go with the flow".

Usually these Oscar-winning performances embarrassed the person at the other end of the phone so much, that they would give me more than crumbs, and though I was still an irritating itch, at least they scratched it!

We have people on TP from all over the UK, as well as other parts of the globe, and I am amazed at the "post code lottery" that exists with regards to help. There have been people who have posted about having umpteen hours a week of free care, even though they don't satisfy the low income criteria, but nevertheless, their Local Authority have sanctioned it.

Then we have those, like you, struggling to cope, and being offered virtually nothing. And you say your "bath carer" can't come, and yet you don't appear to be getting a replacement. Disgusting.

 

[Aisling]

Sometimes I used to get the feeling that I was like an irritating itch on the Social Worker's nose, that wouldn't go away. No, I lie. Frequently, I was made to feel like that itch!

To begin with, I adopted a stoic countenance. This is my husband. I can cope. I will cope. Also, to begin with, I obeyed. When the SW, or whoever, insisted that John should be present during all these meetings, and fired zillions of questions about him, to me, I answered. Then the SW would leave.

They weren't present afterwards, when John would accuse me of making up things about him, and the distressing aftermath. Then I hit on the idea of the To Whom It May Concern statement. I also realised that being stoic, controlled, calm and grateful for crumbs, got you nowhere.

So, whenever I had to make a phone call, asking for something, whether it was extra hours at the Day Centre, for which I paid £9 an hour, or help with dressing him etc, I stopped biting my lip, and just let the tears flow. I would never shout, swear, or lose my temper. But I cried. How I cried. I found "cry" was always present in my voice anyway, after all, what carer finds this all a bundle of laughs? So I'd literally "go with the flow".

Usually these Oscar-winning performances embarrassed the person at the other end of the phone so much, that they would give me more than crumbs, and though I was still an irritating itch, at least they scratched it!

We have people on TP from all over the UK, as well as other parts of the globe, and I am amazed at the "post code lottery" that exists with regards to help. There have been people who have posted about having umpteen hours a week of free care, even though they don't satisfy the low income criteria, but nevertheless, their Local Authority have sanctioned it.

Then we have those, like you, struggling to cope, and being offered virtually nothing. And you say your "bath carer" can't come, and yet you don't appear to be getting a replacement. Disgusting.

Thank you Scarlett.

 

[LadyA]

Well said Scarlett. All too often, that's how it is here. Too many cutbacks. Every time the Home Help that used to come to us was on holidays, we had to do without. When the Care Assistant was off sick (hurt his back moving William!), we had to do without. There was simply no-one there to replace them. Penny wise and pound foolish! The Care Agencies charge approximately 24 euro per hour for a Care Assistant. (the CA themselves gets paid about 12euro of that). The Health Service has let go a huge amount of frontline staff- like Home Helps and Home Care Assistants - and contracts it out to Agencies. But for every Agency worker they have to pay for, they could pay two, if they hired directly!! It is economic suicide, but someone decided this would bring down the Health Service wage bill! And of course, on paper, it does!

 

[Scarlett123]

Yes, that's the going rate over here charged for carers in the home, approx. £16 - 18 per hour, though of course the person gets a fraction of that. I wish there was one, just one politician, whatever the colour of their party's rosette, who had the genitalia to say that if spouses, or other family members, are being charged £16 an hour, for a Local Authority carer, to come into their homes, how much are those spouses or family members truly worth? And shouldn't they be given more help?

I am fed up to the eye teeth with hearing how much "aid" we are sending to the most far flung places, and how little is being given to the poor exhausted carers here. We all know that the easiest thing in the world, is to spend other peoples' money. We can all do that!

And yet those that are too tired to put up a fight, and don't know how they're going to get through another day, are ignored. I forget now, but John either had 5 Social Workers in 7 months, or 7 in 5 months, because every time I asked for something, say an extra few hours at one of the Day Centres, then once this was "kindly" granted to me, even though I was paying for it, the SW closed the case!

So then I had to start all over again, with a new one, and each one insisted on carrying out their own assessment, even though a colleague had done this a few weeks before. I printed a great many To Whom It May Concern statements!

 

[LadyA]

I never had contact with a Social Worker. I was working through the Public Health Nurse in my nearest Community Care Office - she took care of the assessment for Home Help, Care Assistant etc, and although they were Agency staff, they were contracted to the Health Service, so I didn't have much contact with the Agency. The Public Health Nurse also arranged the supply of incontinence pads and arranged for an occupational therapist to assess William and supply things like raised toilet seat with frame, bed lever, etc.
Aisling, have you had an OT out? They can be really helpful.

 

[Aisling]

I never had contact with a Social Worker. I was working through the Public Health Nurse in my nearest Community Care Office - she took care of the assessment for Home Help, Care Assistant etc, and although they were Agency staff, they were contracted to the Health Service, so I didn't have much contact with the Agency. The Public Health Nurse also arranged the supply of incontinence pads and arranged for an occupational therapist to assess William and supply things like raised toilet seat with frame, bed lever, etc.
Aisling, have you had an OT out? They can be really helpful.

pH nurse seems to be leaving it all to the Pysc for elderly. She told latter that I couldnt get anymore help. I get 2 hours per week. I still cringe when I think of the meeting with SW!! Let's see how it goes. Will keep updating. Without TP, I would be bonkers at this stage.

Aisling

 

[LadyA]

pH nurse seems to be leaving it all to the Pysc for elderly. She told latter that I couldnt get anymore help. I get 2 hours per week. I still cringe when I think of the meeting with SW!! Let's see how it goes. Will keep updating. Without TP, I would be bonkers at this stage.

Aisling

Unfortunately, a lot seems to depend on who you deal with and their understanding. Our public health nurse changed about five times, and some were way better than others. Unfortunately, it's a case of the squeaky gate gets the most oil! Unless you are actively keeping after them, trying to get more help, they will choose to assume that you are fine, because there aren't enough resources.