Breaking point

[muse]

Hi

I seem to have found two places in the world where competition/judgement is not an issue. One is yoga (for which I don't find much time now), and the other is TP. I can accept my weaknesses because you do, and I don't need to feel judged. We all do our best. If my breaking point comes sooner than some of you, I still feel supported. Breaking pont is bad, wherever it occurs. We all have our own individual limits. But it's also good, because it gives us a kick in the a... to change things.

My love goes out to Sue and Roseanne, and my thanks to all of you
Kathy

 

[Grannie G]

Try not to get to breaking point Kathy.

Most of us know our own strengths and weaknesses and it might be best to avoid breaking point. We have nothing to prove, it is not a competition to see who can tolerate the most suffering.

This is an illness which cannot be controlled or undone and when the time comes when we feel we are nearing the edge, then we need to recognize it`s time to act to change things.

It`s a sad and sorry time but so is carer breakdown which should be avoided at all costs.

Love xx

 

[TinaT]

Granny G has said it all so wisely.

xxTinaT

 

[Goingitalone]

Hi Kathy,

It's nice to meet you.

I've been reading some of your earlier threads and how I feel for you! You are doing so well, caring for your husband and working full-time in a demanding job. Why are you so hard on yourself?

To me you are an absolute star who deserves a medal. You get so much less time off than me and I often feel at breaking point, so you're one up on me, Lass!

I know you've had some respite and have had some problems since, but I think it would be worth your booking the next respite so that you have something to look forward to and so that you will have some thinking time to get some more care sorted for hubby. If you are planning to care at home long term you will need regular breaks and more than a couple of hours here and there.

I'm not an expert, but one responder to your earlier thread suggested the time may have come for hubby to go into full-time care. Is that an option?

Your son sounds a real gem. Again, you have been sheltering him from all this and it has been taking it's toll on you.

You desperatly need 'me' time. It's not selfish to arrange for that.

You can't go on like this.

I have come to realise that this disease is just too big for one person to be able to deal with alone. No-one will judge you for asking for help, Kathy.

I couldn't agree with you more about TP. It has kept me sane tonight, too.

(((BIG HUG)))

Maggie

 

[Rosalind]

Hello Kathy

Reading your post has made me remember the horrors of living 24/7 with a sufferer - I have looked back at posts I left years ago, and can feel the back of my neck knotting up just from the memory.

It is so dreadfully difficult to understand what is going on inside the head of the person you once knew. When my husband went into care he objected quite strongly at first, but never once asked when he was coming home. Visits were difficult, but mainly because he had such weird ideas - e.g. the Chinese were buying up whole villages in Wiltshire, with malicious intent, and he had been out all day collecting dead bodies from Salisbury Plain.

No one can make the decision for you, but life in a good care home, with staff who enjoy their work, could be a better option for the sufferer than living with a stressed out partner. I used to spend hours 'hiding' from Guy, pretending to be working at my computer, simply to get a bit of space, but even that did not stop occasional outbursts on my part.

I used to deeply admire the determination of people on TP who would move heaven and earth to keep their partner with them, but unless you have that attitude it could be better all round to consider residential care.

Rosalind

 

[muse]

Thanks, Rosalind. I'm now slowly working towards that solution

Kathy

 

[Padraig]

A price to pay

It has been said here many times 'everyone is different' and no matter how well or badly ones copes with caring, there is a price to pay. I once got some stick for mentioning that I was referred to as 'a one off.' I chose to care for my wife all on my own up to her death. How I've been paying for it since. I didn't feel lonely so long as I had her. More than two years on and I've been unable to adjust to a new life. No one to talk to most days and house work, cooking, shopping etc have become a real effort. Life is empty with no purpose, but I just live with a little hope. I tell myself it's the price to pay.
Caring alone, is not something I would recommend, even to those physically and mentally capable. Like many carers experience, friends and relatives vanish during the caring years. All my wife's lot did. Afterwords they move on with their lives and you are soon forgotten.
Would I do it all again? I know no different. Just, maybe I would have accepted help and made a friend.

 

[gigi]

Just, maybe I would have accepted help and made a friend.

That's very sad, Padraig..but thankyou for sharing the benefit of your wisdom through hindsight.

The erosion of friendship and family relations when we're caring 24/7 happens so gradually. It takes a huge effort to nurture and maintain outside relationships...and sometimes it's too much of an effort so we don't bother..and then we become isolated.

Most of us know our own strengths and weaknesses and it might be best to avoid breaking point. We have nothing to prove, it is not a competition to see who can tolerate the most suffering.

Wise words, Sylvia. As one who has reached breaking point and returned I now know that I have my limits.
Things are relatively settled for now..but today I'm decidely under the weather and am thankful that Eric has gone to Day Care without too much persuasion.
I do know that it wouldn't take much for that breaking point to be reached again...so it's sensible, Kathy , to have contingency plans in place.
Change things while you're in control...if you wait for breaking point you may not have the energy or the wherewithall to engineer the change.

Love xx

 

[Izzy]

Padraig - at least you have friends on Talking Point. Take care of yourself. Izzy x

 

[Lynne]

The erosion of friendship and family relations when we're caring 24/7 happens so gradually. It takes a huge effort to nurture and maintain outside relationships...and sometimes it's too much of an effort so we don't bother..and then we become isolated.

And wise words from you too, Gigi.
It is not always that friends & family 'abandon' us - sometimes we fail them because we haven't enough energy or wherewithal to make the effort to include them.
Or the carer wishes to protect them from the realities, & preserve their memories of their parent/son/daughter pre-dementia. (We've seen that often here, haven't we.)

I'm sure it's as difficult - perhaps more so - to break INTO that bubble of pain, strain & confusion as it is for the carer to escape from it & get a breath of 'freedom' & normality.
Of course, it takes a brave & special kind of person to WANT to break in!

Kathy, look after yourself please. You matter too.

 

[PostTenebrasLux]

Dear Kathy,
Sending you love and support - one day at a time, half a day at a time. Book in "me time" in your diary - get cover for your own time off, even for one hour.
Just think of how in aircraft instructions, we are advised to put on our own oxygen masks before helping children and others with theirs!
M

 

[muse]

Dealing with SW

Hi

Philip's SS Care Manager is coming in on Thursday for an assessment. I've not had much contact with him, apart from the emergency assessment for respite care and a couple of e-mail conversations since then. He doesn't strike me as the most sympathetic of people, more as the type who's trying to gain Browny points by saving the Council money, and I feel rather intimidated by him. He's more or less told me that "this is about your husband's needs, not yours". Ok, fair enough. Yes, I also have my husband's best interest in mind. But at the same time I think I have a right to survive. Actually, having grown up as the youngest of 4, I just want to kick his shin.

But I won't. I enquired about getting a "budget" under the Self-Directed Support scheme (which, in our area, is supposed to have kicked in in Aug 2009), because I fear that his assessment of Philip's needs will be much lower than what I would consider his needs to be. I just want the best care for Philip, and get what's due to him, and make up the difference. He replied that SDS wasn't available yet. My carer's support manager tells me that her father is being assessed for SDS next week, and if this particular care manager hasn't been trained yet, ask for a different one who has.

Has anyone had any similar experience? Any suggestions/advice about how to handle the meeting with the ambitious SW? What I really want out of it is some Day Care at weekends (to find some time to myself in my own home) and some presence on a couple of evenings to allow me to persue my own intersts (yoga and singing). I've asked for Philip to be assessed as if he was living on his own, stressing that if I didn't get the necessary help, I'd have no choice but to move out and leave him to SS.

I suppose that's what gave him the idea that I was a selfish *****

 

[TinaT]

You do have the right to ask for a change of Social Worker! If you are not satisfied with him and do not get the help you need I would certainly ask for another person. If you are still not satisfied write a very strong letter of complaint to the CQC (its called something like the Quality Care Commisssion - I'm sure someone here on TP knows how to get in touch with them) They inspect every local authority social services department and award them stars etc., If the social worker thinks you will put the cat amongst the pigions by doing this it may just be the kick up the backside he needs.

There is also an elected committee of local councillors called the 'Overview and Scruiteny Committee' in my area. I'm sure a word to one of them will result in the Director of Social Services in your area having to also sit up and take notice.

We are under enough strain as it is without having to face a hostile and uncooperative Social Worker. And remind this person, the budget is no concern of yours! The government give money to each council specifically to help people in your position and also you have paid enough council taxes in your time to have your needs met.

xxTinaT

 

[Padraig]

A team

Hi Kathy,
I'm sorry to say when I read; "This is about your Husband's needs, not yours" I saw red. Sadly I experienced something similar in a Nursing Home. I was asked to leave the room whilst they changed my wife's pad. "Why" I asked. "For her dignity" came the reply. "I'm not leaving, who the hell do you think has been changing her for the past years before she came here." I got my way and I pointed out to the Matron that were had been married 47years and let no one come between us we.
Thank God I took her home to complete 52 years together.

The point I'm making is; when are they going to get the massage; that nobody is an entity. To come between loved ones, be it Mums, Dads, Wives/Husbands etc make the situation worse for all concerned. As for cost, I hate to think the vast amount spent on illnesses caused to carers treating stress, depression, in addition to loss of working hours. The presence of the person who knows and loves the patient can be the best medication. When will they learn to co-opt the carer into the team? Sorry for the rant.

 

[muse]

Thank you all for your replies and for sharing your experiences.

Philip had a catheter fitted last Friday. I took him to the out-of-hours medical centre as he seemed in great discomfort and agitation, shaking and feeling cold. He couldn't tell me why, didn't mention pain or discomfort, just said "if this lasts much longer I'll die". I - and the doctor - couldn't believe my eyes when they drained about 2 litres in half an hour! Poor man, he must have been in agony .

He had it removed yesterday. This morning he seemed just a little bit perkier than yesterday. Tonight, when I came home from work he was weak, shaky and agitated again. Unfortunately, he's had a different carer for the last couple of days, nowhere near as communicative as T (the super-angel). I observed him for a while, cooked dinner - he was sitting on his chair all leaning to one side. Getting from his comfy chair to the dining table seemed a huge effort, and I feared he'd fall over without assistance. He didn't eat much either. So I decided to call the out-of-hours medical service again. Some instincts start to kick in, as with infants and small children: they can't tell you how they're feeling, so if concerned, call the doctor.

Normally I would take Philip to bed now (he's fast asleep on the chair), but I'm now waiting for the doc to turn up.

Lots of love to you all - Kathy

 

[thatwoman]

Oh Kathy, I hope the doctor arrives soon. You're doing a really good job looking after Philip, so I hope they sort this out for you tonight. And as for your social worker, words fail me (that's a lie, but you're far too nice to know the words that come to mind!!!)If you aren't satisfied ask for another social worker, and if you have the energy complain to his line manager. But if you don't have the energy, just let it go for now, cos life's too short to bear grudges: they just make you feel worse.
Hope you get some sleep tonight, love and hugs, Sue

 

[muse]

Hello - yet another nice Sue

Thanks for your reply.

But if you don't have the energy, just let it go for now, cos life's too short to bear grudges

I wholeheartedly agree. I'll see how it goes. I might just be overreacting to one or two things the guy said. At the time when I needed emergency respite care he turned out quite co-operative in the end (after a kick from the Alzheimer's Society support worker). My husband has deteriorated drastically even since then (2 months ago), so even this guy should be able to recognise the difference.

Kathy

 

[muse]

The doc has been now. Re-fitted a catheter. Philip in bed and I'm absolutely exhausted, drained. I just want to close my eyes, enter a time capsule and be somewhere else, anywhere! Preferably in somebody's arms and crying? But there aren't any arms within sight. I can't see any more now - good job I did that secretarial course nearly 40 years ago, I can type without seeing .

Going to watch last night's football now. That should take my mind off things. God knows when I'll get up in the morning. Whenever I wake up. The world will just have to wait.

Love - Kathy

 

[Bookworm]

Kathy, I do hope you are more rested in the morning, Sue (another) xx

 

[larivy]

muse glad gp sorted Philip out mum is tucked up as well now but im wide awake mum has hospital appointment tomorrow for neck collar so early start oh well these things are meant to try us just wished they would not all come together have a good nights sleep larivy