Stressedstressedstressed!

[LadyA]

So, at the moment, I have managed to hold on to my part time work - 4 hours a week. Someone from Wm's church comes (paid) to stay with him while I work, two mornings. I live half an hour or so from work, so each time, it's an extra hour for travelling time. This arrangement was put in place about 1 1/2 years ago, with help from his Minister, and some of Wm's family (also part of the same church - as was I, but I left). Anyway, the minister has a business, which the guy that stays with Wm also works for part time. Now, he is working for the minister more - and he is now asking me to see if I can change one of the days I work as Monday is busy in the business, and they need him then. I'm kind of afraid this is heading to him not being able to help here any more. I'm really stressing about it. Today I phoned a private home care agency to enquire- because eventually I will need to buy in more help. They charge 20 euro per hour!! I earn 11 euro per hour from my job.
And I would need them for 4 hours, because they charge on a per hour basis, and it would be 3 1/2 hours by the time I would get to and from work. So, the longer I can put off having to use them, the better. Dau (who is here ranting at me about boyfriend, work, all sorts of stuff, in my ear, yak,yak,yak!) says to just tell him that no, it won't suit either me or the person I work for to change (and I know it won't suit her), because they did assure me originally that the two mornings he worked for me, would be kept for me.

I suppose if it comes to it, I will have to give up work. But it's literally the only time I get away from Wm. I am rapidly reaching the end of my rope. The only help being offered is to put him in for Respite to a nursing home, and I am not doing that - he has such a horror of nursing homes, it would destroy him.

Sorry, just needed a rant about it. I can feel the house of cards that's our life is starting to wobble dangerously as each new card is added!
Going to bed!

 

[Izzy]

Oh Lady A I'm so sorry. Your situation is awful. I'm glad you were able to get some of off your chest here. It doesn't change anything but it might release a bit of tension.

I do hope you're able to get some sleep tonight. x

 

[garnuft]

I think your Daughter's right. Don't let go of the rope, DON'T. Get her to tell them if you can't face it. She's right. They made a promise, when it gets uncomfortable they will take it away? Err, no. Christian charity and all that....get your daughter to tell them, no, no and again, NO. It's too important to the balance of your lives. Works in the Ministers' business...away with yer! This is the Minister's business, William and you. See them off! Maybe make a peppercorn donation to the church but make them keep their word. Love, Gwen X

 

[Onlyme]

I think you said William was a minister. Go and tell them that William worked all those years for the church and now is the time for them to remember their promise.

 

[Coletta]

So, at the moment, I have managed to hold on to my part time work - 4 hours a week. Someone from Wm's church comes (paid) to stay with him while I work, two mornings. I live half an hour or so from work, so each time, it's an extra hour for travelling time. This arrangement was put in place about 1 1/2 years ago, with help from his Minister, and some of Wm's family (also part of the same church - as was I, but I left). Anyway, the minister has a business, which the guy that stays with Wm also works for part time. Now, he is working for the minister more - and he is now asking me to see if I can change one of the days I work as Monday is busy in the business, and they need him then. I'm kind of afraid this is heading to him not being able to help here any more. I'm really stressing about it. Today I phoned a private home care agency to enquire- because eventually I will need to buy in more help. They charge 20 euro per hour!! I earn 11 euro per hour from my job.
And I would need them for 4 hours, because they charge on a per hour basis, and it would be 3 1/2 hours by the time I would get to and from work. So, the longer I can put off having to use them, the better. Dau (who is here ranting at me about boyfriend, work, all sorts of stuff, in my ear, yak,yak,yak!) says to just tell him that no, it won't suit either me or the person I work for to change (and I know it won't suit her), because they did assure me originally that the two mornings he worked for me, would be kept for me.

I suppose if it comes to it, I will have to give up work. But it's literally the only time I get away from Wm. I am rapidly reaching the end of my rope. The only help being offered is to put him in for Respite to a nursing home, and I am not doing that - he has such a horror of nursing homes, it would destroy him.

Sorry, just needed a rant about it. I can feel the house of cards that's our life is starting to wobble dangerously as each new card is added!
Going to bed!

Things may have changed over the past 2 years, but I recall my SW saying that carers have a right to help to carry on working and she was going to get me extra funding to cover some of the cost of care at home whilst I was at work. It never materialised as I was made redundant and retired, but I would have a word with your SW about it.

Coletta xx

 

[Francine]

Hi Lady A

As the others have said don't give up work you sound as if it is something you need to keep doing. I agree with the others it really is bad to let you down like this especially as it has been a long term arrangement and the chap is being paid, but if he genuinely does need to work on Mondays by really making a stand about it there is always the awful chance he may stop all together.
I know this may be difficult but have you thought of having a word with the minister to explain how this will affect you and see if he can come up with a solution for all of you as it is partly his fault that this situation has arisen, and he does have a responsibilty towards Wm and yourself. Could he find a replacement person for Wm on Mondays?
I would avoid changing your working days to suit this chap, as your work days are the priority here. Sorry if this sounds a bit negative just trying to find a positive solution!

 

[LadyA]

Yes, it would be nice if his church took some interest in him - but they somehow (apart from saying nice hellos to him when I take him over there onSundays) don't. No-one visits him, even though I wrote to all of them twice explaining exactly how his illness affects him, how isolating it is for him, and how he needs visitors - but how long visits are tiring both for him and the visitor, so short visits of about 15 minutes are best, and would be really appreciated. Only one or two have come. ONly one has come without further prompting from me, and he is a man who is regarded as being "simple" - he's a bit intellectually slow and has almost no social skills, but he comes when he can, his own health isn't good and he doesn't drive.

The system here is completely different. There aren't SW's involved. The PHN is the only one involved and everything is done through her. The only home care offered officially is a Home Help which we have for two hours per week, to help with housework. (HOme Help hours are being slashed in austerity cutbacks at the moment. Haven;t heard yet if ours will be affected or not, most likely will be, because Wm doesn't live alone!), or Home Care Assistant to do things like help with dressing, bathing etc. Any other help comes from Carer's Association or Alz Society. Neither of which have anyone available. Or hire privately - although you can claim Tax Relief on the costs of that, but we are below the tax net.

I am going to tell him that I can't change the day. It's in my contract that I have to be flexible with work times from the lady's point of view - so if she wanted me to change, I would have to try. But on Mondays, after work I drop her in to a therapy class as they don't have a car and she is disabled (I work in HOme Care!) And while dau will rant at me about it (and everything else), she won't actually get involved.

 

[SisterAct]

Sorry you are so stressed...we all know on here what that is like!
Can the PHN get the extra hours for you at their rates, as I'm sure they will be much cheaper rather than paying 20 euros? Or any Day care on offer?
Polly x

 

[LadyA]

Sorry you are so stressed...we all know on here what that is like!
Can the PHN get the extra hours for you at their rates, as I'm sure they will be much cheaper rather than paying 20 euros? Or any Day care on offer?
Polly x

No - they are certainly no extra hours on offer, I'll be lucky if we get to keep the Home Help at all - and that's another story! Theoretically, I'm supposed to be able to go out while she's here. In practise, William won't stay with her. I went for a walk one day - just down the road (we live in the country), and found him out on the road when I got back ten minutes later, with his coat on, insisting "I'm going to look for my wife!" - and the home help couldn't get him in. So I'm nervous about leaving him. I go in the garden to work, and he keeps coming to the window to make sure I'm there.

We tried a Day Centre. He hated it- went twice and refused to go back. But if something doesn't happen soon, I'm thinking that I will just have to insist on him going. But he really did hate it, and was very distressed about it.

 

[Christin]

Hello LadyA, I am sorry to read your post. I am not sure what rights you have in Ireland, can I suggest that you phone the National Helpline for some advice. It may be that you are entitled to a carer's assessment for your own needs and I would urge you to take this if it is available.

The helpline is now open on the Saturdays, the link will give you the opening times and contact numbers.

Very best wishes to you, and please do let us know how you get on. x

 

[Butter]

All the advice you've had so far makes total sense to me - helpline - of course - and of course you have to insist the church keep its promise. And of course you must not give up your job.

So you have been offered respite in day centre? And you husband has been and does not like it? Is upset. Hates it. But - what are the options? He will be much more upset if you push things too far onto yourself and are not able to manage a smooth transition to day centre. So don't you have to get him into day centre to start unbuilding your wobbly pack of cards? Then you may be able to go on and on and on with a new way of life indefinitely. Yes he may not be enthused. But he would still be coming home every day, from what you say. He would be very very fortunate, you know. He is a lucky chap.

 

[LadyA]

Coming home every day Butter?? It was once a week!

There's no such thing as Carer's Assessments over here. With the Carer's Allowance, you are entitled to work up to 15 hours per week, and still keep your Carer's Allowance - but it's up to you to ensure that there is adequate alternate arrangements for care for your loved one while you are out. I think this situation stems from Ireland being formerly run by the Roman Catholic tradition - the teaching of the strong family unit, the strong community - and care of ill, elderly etc. was taught as the responsibility of the family and the local community. It's taking a long while for things to catch up! To be honest, and to a point, in one way I can see the benefit of that system (care being the responsibility of the family & local community, rather than the State) but in the modern age, with the dispersion of families and the destruction of the local community, it just doesn't fly anymore. There needs to be a new model for care - I'm not sure State responsibility is the best, but not sure what the alternative would be. I ramble. Time to go eat! That's a whole different discussion!

Going to tell the guy on Monday that I can't change the day. And you know what? When I thought about it, I realised that most of my wages are going to pay him anyway. And sitting here today with Wm, I realised that being here with him, I don't mind - that doesn't stress me. It's trying to get all the other stuff done as well that's stressing me. So, if it comes to it, I've decided I will just not fight so hard. I'll quit the job and just trust in God to supply future needs. "Each day has enough trouble of it's own" - but (and this is the good bit!) continue to get William's children to contribute their portion of the guy's wages to me, and then if he can't come on Mondays, but can still do Thursdays - I could take that morning for myself, couldn't I? Because Wm and I had the house to ourselves for the afternoon - dau went out after having a row with me about how boyfriend's brother and his family are moving in with him, and what happens if she and boyfriend get married, she can't live with another family - or maybe TWO other families cos there might be another family coming in the new year, she would end up isolated in her own home, the only one not able to speak the language, blah blah blah! (boyfriend is a lovely guy, not from around these-here parts! cultures sometimes clash!) And I just kept saying that she would just have to make time and opportunity to discuss it with him. And she kept shouting at me that she cant GET an opportunity cos there's always someone there! But - my point is that once she left, calm descended, Wm and I sat in our armchairs for a couple of hours, me reading and dozing, him just dozing and had a lovely time. Then I defrosted the freezer (with the hairdryer, and I know they say you shouldn't, but I always have done it that way! Done & dusted in less than an hour!). And we are about to eat and watch dvd's for the evening. We were in town together this morning, and had breakfast out (well, my breakfast, Wm's lunch!).

So, thanks for listening to my ravings - feeling a lot calmer. And you know what?? I think I will skip in the morning - send him to church with someone else if he wants to go, and go for a walk in the air, by the sea!

 

[Isabella41]

Hi Lady A
I live in Northern Ireland but was born and raised in Southern Ireland. My mum has dementia and up until Christmas 2011 was still living down south. Although a 90 min drive seperated us it was like another world. I was gobsmacked to discover how little care there was available. Apparently there is one social worker to cover 4 counties. If she was lucky mum might have been given a carer to go in for 15 minutes once per day. I took her across the border and with a bit of effort she now has carers 4 times per day and additional time for cleaning and shopping.

My heart really does go out to you. My next door neighbour is a retired vicar. He went into a home recently as his wife could no longer cope. It was really sad to see her struggle and like in your case very few from the church called round to support them. Its sad that your husband had probably given a large part of his life to public service and support and yet here in his own hour of need there is no one to support him in the church.

I think if I were you I'd dig my heels in with regard to holding on to your job for as long as possible as it seems to be your only break time. This guy gave you an undertaking to help you out so don't make it easy for him to wiggle out of it.

Isabella

 

[Big Effort]

Hi LadyA,
I too hail from the Republic, now in France though.
Too bad about those church colleagues not having enough Christian stamina to visit on a regular basis - you must feel very let down. And it is hard to insist......

Some one in Ireland told me there was a scheme for school kids doing transition year to visit elderly/sick/dementia people on a regular basis. This should be free. I wonder if a couple of well-meaning and caring 16 year olds would help you out through the year? you could ask the local secondary school. Just a daft idea, but if you don't ask you won't get.

I so sympathise. This is a tough spot. Hope you work things out with work. They need to accommodate YOU - tell them that.
Love BE

 

[LadyA]

Hi LadyA,
I too hail from the Republic, now in France though.
Too bad about those church colleagues not having enough Christian stamina to visit on a regular basis - you must feel very let down. And it is hard to insist......

Some one in Ireland told me there was a scheme for school kids doing transition year to visit elderly/sick/dementia people on a regular basis. This should be free. I wonder if a couple of well-meaning and caring 16 year olds would help you out through the year? you could ask the local secondary school. Just a daft idea, but if you don't ask you won't get.

I so sympathise. This is a tough spot. Hope you work things out with work. They need to accommodate YOU - tell them that.
Love BE

We are out in the sticks - there isn't a local secondary school. That's part of the problem. The Carer's Association don't cover this area either, as it's out of their way - even though they cover a much smaller village just a few miles from here.