First post ... feeling desperate
- Thread starter Sunseeker1977
- Start date
Hi sunseeker. I'm on this road but without too much abuse and my husband does cooperate but I've been exhausted from lack of sleep and got him into respite for two nights this week. The difference in me is amazing. You need help, both of you, to get a hold on this situation. Don't hesitate to explore day centre and respite with social services. It will be the making of you. Please, go for it!
Hi sunseeker
definitely get back to your GP and let them know your wife's behaviour has changed - it may be that some meds may help your wife settle
and organise a test for a UTI (just take a sample in to the surgery, if you can, and explain that you need it tested)
I agree with Florence that day care can make such a difference - you have a carer coming in in the morning; contact Adult Services and ask for a re-assessment of your wife's care needs, hopefully to include more visits, day care and some respite - you need a break to be able to continue to be a carer
definitely get back to your GP and let them know your wife's behaviour has changed - it may be that some meds may help your wife settle
and organise a test for a UTI (just take a sample in to the surgery, if you can, and explain that you need it tested)
I agree with Florence that day care can make such a difference - you have a carer coming in in the morning; contact Adult Services and ask for a re-assessment of your wife's care needs, hopefully to include more visits, day care and some respite - you need a break to be able to continue to be a carer
I know lots of others have already said similar but have you thought about the next stage of care? There comes a point when either internally (in your soul) or externally (someone's behaviour) become too difficult to deal with and we are in grave danger of damaging our own health. Sometimes it is necessary to think of her having care in a different environment where others take responsibility for all the personal care and you do the 'quality' bit - the visiting, the bringing treats, the revisiting old memories - and of course being an advocate and making sure the person is well looked after - that is just as much caring as what you are doing at the moment . I really think you should think about it and talk to others. I go regularly to a carers cafe (lifeline) and one chap there was in a very similar position to you several months ago - I thought he was unnervingly close to a breakdown. His wife is now in a home and he chooses to spend time with her most days and he is a changed man - he is full of life, his eyes are bright, he is sleeping and he is much happier and his wife is very well cared for (he says they are closer now than they have been for a number of years). It's worth thinking about xxxxxx
Thank you... I know you are right ... indeed many people have given me similar advice... and I would also give myself that same advice .... therein lies the problem!! I am good at giving advice ... but rubbish at taking it!! I am thinking about it, I have looked at respite and my wife is due a trial weekend shortly!
I will share with you my respite experience. My husband went 18months ago, twice. Told me dreadful stories and I felt so guilty, so he didn't go again. I fell for the guilt trip! EIghteen months later I was on my knees with exhaustion, so it was either him or me that would go under and it wouldn't have been him. I booked respite for two nights and listened to the professionals "you need this, you will go under without it .. Don't let him guilt trip you with stories that are untrue. He will be fine". Those that read my post of the first weekend I packed for him to go will know I felt the worst I could have and cried a river. I was pathetic. He went, I didn't contact him and he came back and said he was okay and could go again. I had eaten my heart out for him. Needlessly. This week he went again for two nights. I had a really relaxing time, slept, chilled, read and did a lot of thinking. He's back tonight, no problem, some daft stories but I know it's rubbish. What I'm saying Sunseeker is that it's your own guilt you need to get over. Just go for it. YOur wife will be fine but you need to do this. Once you get used to it you will be fine. It is worse for you than her, believe me. Take the plunge and get some life back. I did and I will never give it up again.x
That is a good idea and will give you mini break to - golden rule absolutely no housework is allowed on a respite break - tea with friends, drinks with that friend that you haven't seen for the past x years, perhaps a meal out with someone you know well - all these are allowed but NO WORK lol
You aren't rubbish, you are under HUGE stress and that makes decisions so much harder and anyway for me at least it often takes me months to think something through (in the back of my mind) before I make a decision so we can't both be rubbish lol neither of us are xx
Oh fizzle you are so right! The last time my husband went to respite I steam cleaned everything in sight in his room. This time .. Zilch!! Me time. Special breakfast in PJs, coffee with sister in law and natter, rubbish t.v. and special meals just for me in the evening. The carpets need hoovering, dusting needed doing .. Tough! I'm getting there. Also, I think we know when we have tough decisions to make In the future, like permanent care, and it takes us a while to look at the page and keep putting it away. We know it's there but it's so frightening we soldier on and hope. That's my story anyway.x
I know you are all right ... I know what the experts say, but it means much more hearing it from people in similar situations. 'Thank you ' I'll let you know how it goes!!
Well today is that day .... my wife is going away for a trial respite weekend ... I am dreading it!! Our children are going to spend time with me to keep me occupied, and to prevent me drinking myself into oblivion!!!
I feel such a failure, but the constant battles for even the simplest of tasks, and the lack of a good nights sleep has really taken its toll! I really hope this works.
You are NOT a failure! You're a normal human being made of flesh and bone who is exhausted. I do hope you're able to at least recharge your batteries this weekend.
Hi Sunseeker
Just read your thread! Your dark cloud and storm! Yes I do things quietly so as not to wake! Many things you describe I live! But I smother it all with love and care to hide it!
I do love and care (not in maintenace meaning) for my other half as you do!
Yesterday I went out for a kebab at lunchtime. It's three years plus since I did anything like that alone! It wasn't a particularly good kebab (quality of food) but bit of shopping and a coffee later. I sat there reeling!
They say every cloud has a silver lining!
Let's hope your cloud will grant you a silver lining of some respite!
Then it's get back in there boy, love care and being there as you have done!
I can read between the lines how much you care and love! Not some times easy for us blokes to admit! Your admissions are plain you love you care its obvious! Failure does not lie with you!
I can't find the words this morning because I am missing my girl! But I needed a break!
Hey going to create something new
(((((((man hug ))))))) you deserve it for your patients and tolerance!
John
hi Sunseeker1977
it's a tough time for you and your family - sounds as though they appreciate how hard it is for you and are rallying round; that's good to know
you are in fact a success - you have successfully organised support for your wife after successfully realising that you have done all you can and now need a break to enable you to continue to support her (the opposite (I refuse to use the word) would have been to obstinately wear yourself into the ground so you were no good to woman nor beast)
now have a successful respite by resting and recuperating
it's a tough time for you and your family - sounds as though they appreciate how hard it is for you and are rallying round; that's good to know
you are in fact a success - you have successfully organised support for your wife after successfully realising that you have done all you can and now need a break to enable you to continue to support her (the opposite (I refuse to use the word) would have been to obstinately wear yourself into the ground so you were no good to woman nor beast)
now have a successful respite by resting and recuperating
Well the weekend is well and truly over!!
I had a nice weekend, its amazing when being able to do things for myself.. just how liberating it is!! .. Conversely, now back in the care routine, I realise just how valuable respite is ... even only a few days!! I collected my wife yesterday afternoon and they had clearly looked after her well, she was happy and settled and had had a good weekend, without many of the unpleasant behaviours displayed at home!! My daughter says we must be doing something wrong as she seemed happier in the care home than at home!!
So back in the old routine today with the usual lack of co-operation and daily insults!! However I feel much more calm and patient today than I did previously ... and that was with only 3 days respite. Now I know she was settled and happy in the CH I will be confident of her staying there again .... next time for a week I think!! ... I might even have a holiday!!
I had a nice weekend, its amazing when being able to do things for myself.. just how liberating it is!! .. Conversely, now back in the care routine, I realise just how valuable respite is ... even only a few days!! I collected my wife yesterday afternoon and they had clearly looked after her well, she was happy and settled and had had a good weekend, without many of the unpleasant behaviours displayed at home!! My daughter says we must be doing something wrong as she seemed happier in the care home than at home!!
So back in the old routine today with the usual lack of co-operation and daily insults!! However I feel much more calm and patient today than I did previously ... and that was with only 3 days respite. Now I know she was settled and happy in the CH I will be confident of her staying there again .... next time for a week I think!! ... I might even have a holiday!!
Hello sunseeker, pleased that your wife was happy in the CH, there is always something going on to keep them occupied, l wish l had been strong enough to have respite for my husband, then l probably would have been able to look after him for longer. Try a week next time.
Don't feel reluctant about respite , it maybe the making of her. I like you went through thick and thin , assured him I would always look after him, even after very violent episodes, when as ,police and Drs were involved I resisted sectioning. When he came into my bedroom in the early hours and began shouting , beating , and not letting me leave the room , I gave in to full time care ( he had been in respite before,and took to it like a duck to water ).
Now he is calm, he has no pressures. They let him stay in bed and get up when he us ready, shower in his own time, dress in his own time,( usually all done by 10 ) plenty of food and drink. Can wander where he wants around the unit , without anyone questioning where he is going or what he is doing. Has lots of friends on the same wavelength.
Me? Still miss the man he was, miss his company as bad as it was, but no longer beat myself up about it all. Try to keep myself busy with good friends and family who are wonderful, I am very lucky. But am very lonely, as I am sure others are. Not how it was meant to be, but much better for him than being at home with me , of that I am certain.
Dear sunseeker. I just read all these posts. I'm taking respite (fingers crossed) next week- 3 nights in a hotel near our daughter, who's in graduate school. Family members are coming to stay with my husband, and I feel both blessed and determined, for both of us, that this should happen. But what I wanted to address was the awful stuff your wife says to you, because I get that too. Stuff that I couldn't even repeat here. Just horrible. And I've gradually worked out that no, I am not any of those things that my husband can say I am and that he is trying to hurt me because that is the one way he has of expressing his own fear, which hurts him. My guess is that you're wife feels safe with you, she knows you love her, and that you'll stick by her whatever. In any case, she doesn't 'mean' ANY of it; it really is the disease talking, not her. You are doing a wonderful job by her.
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