At end of tether

Ah, Luckygirl, like so many others, I know just what you mean. My OH (dead now) had a package of support to allow me to get out of the house but refused to have anything to do with any of the carers. He even at one stage had a car and driver to take him anywhere he wanted - to the pub for lunch, to look at the countryside - but refused to go because 'I could take him'. I kept on for too many years, with him very difficult. I thought it was because of dementia. Eventually the professionals said it was deliberate controlling behaviour.

At one point I had an anniversary event I was desperate to go to and arranged for two days' respite care for him in a good residential home. He went. He had to. They told me how chatty he was and how he joined in with things. When he came home he never said a word, but was a bit nicer to me.

In the end I had a breakdown so he had to go into care.

This sort of break is available in residential homes, as well as hospices. Ask. Or you will break, and both of you will suffer.

I feel for you. My husband has MS and the start of dementia, up until a few months ago I did absolutely everything. It is only in the last few months that we have received help. I think the emotional blackmail is the worse part. As I have had the recent help I now have time for myself and no longer feel guilty. It took a lot to accept outside help. It might be easy for me to say as we are all different but tough love might have to come in to it; use the wheelchair or stay at home, if he wants to balk at something let him.Take the control out of his hands. Luckygirl you’re not a bad person for having these feelings, I totally understand where you are coming from, I have been there. In the last few months I have decided I need a life too, it was just making that decision that has improved my life. Sending you a big hug.

Luckygirl, what is actually wrong with your hubby? You mention a hospice. Is he terminally ill? Life can be very difficult once our loved ones change into somebody not very loveable. I cannot give advice but there are several ideas by other grans.
My husband had Alzheimers for 4 years before his stroke. I looked after him devotedly, took him to the shops and church, and even on a holiday. He grew steadily worse, began accusing me in public of trying to kill him etc. and after his stroke was in hospital and then a care home for about 2 years, during which time I visited him for 5 hours a day. I told him about our family and friends, and gave him his meals. if he could eat them. As he could not speak and seemed not to understand, I don't know how much he actually gained. In the end I don't think he even knew who I was.
When he finally passed away I felt relieved. I grieved, and still do, not for how he had been at the end but for the loving husband and father he had once been.

Age UK offer a "sitting with" service, or they did when my husband was alive. It was I think either free for the first hour or a nominal fee. I don't know if they still do it, or if they only do it in some places.

LuckyGirl, there are carers out there, Bluebird is one of them. I'm about to use them as I have to have an operation and might need help. You appear to be the victim of emotional blackmail. Gagagran speaks sense.

My friend worked for an organisation called Crossroads. She worked on a voluntary basis and did sitting with patients in their own home to give their carers some respite. Please do try and get a little respite yourself. Having worked with elderly and demented people for almost 30 years I know the strain it puts on carers. I'm so sorry you are having to live with this every day.

Oh lucky girl , what resonance . My OH watches tv from 8 in morning through TIL midnight + .... he’s done it joe for 12 years .... all through me working full time the part time... through his grandchildren being born and growing away from him( as he craned past their little faces to see the tv) these people are so narcissistic , they don’t know what they’re missing or who they’re missing out on . Mine won’t even walk up the street with me . Suggesting I buy a electric scooter for him,is met with disdain and absolutely no explanation. I then decided I had two choices ..... join him in his self inflicted penance of daytime tv .... or live what’s left of my life basically without him. I chose the latter. He of course would like me to watch him , watching tv all day .... but it ain’t gonna happen. He’s fallen a few times while I’ve been out .... if he hasn’t managed it himself ,I pick him up when I get in. He refuses to ‘ master’ a mobile phone. All this nonesense is to force me to look after him 24/7. I won’t do it. My guilt is non existent now .... been there and now destroyed all the t- shirts.

Luckygirl, it is such a shame that you are having to deal with all these painful emotions as it sounds as if you are doing a sterling job of caring for your husband. I agree with others that you do need to find some way of getting some time to yourself and of having some sort of a life apart from that as your husband's carer. I have some limited experience of caring for someone who was very difficult (my nan, dementia - such a cruel illness) so can understand where some of these thoughts and feelings come from. But it is from a few conversations I had with my long-term partner recently that makes me want to stress the importance of caring for yourself too...back to that old adage of 'who cares for the carers'? Anyway, I have chronic health problems and my partner does a lot for me. A recent episode saw me hospitalised, given a new 'nasty' diagnosis and needing more care. My partner was/is brilliant but said he even had thoughts along the lines of 'if she's going to die I hope it is now and not so I have to care for her long-term as she suffers' - makes me realise just how hard it is on those that love us and want to do right by us. I've learnt to text (at last), have the house phone and can do simple stuff for myself now so he is back to work and we are both happier. We know he may need 'time-out' and I don't mind what he does or where he goes as long as he can find an outlet, something he can enjoy, something that does not involve having to consider me and my needs. This is not about me...I think what I am trying to say is: 1: make time for yourself and remember you are not to blame for his current condition. 2: Give your husband a few options and if he refuses all of them tell him he must find his own solution (presuming that if he is manipulative enough to smother you with emotional blackmail he is capable of making choices). 3: Have friends and interests that do not involve him, that are totally separate from your caring 'responsibilities' - you must make the most of your life while you are able to do so. 4: Try and find some joy, light-heartedness, fun - do not let him stop you going to that music festival you mention for instance. 5: Try and find a relative, friend, befriender, carer, anyone who can give you a break every now and then - if your husband won't have any of it tell him it is his choice that he will be alone for 'X' period of time! You don't give specifics, but I was in a hospice years ago for respite then day care (yes, I was one who defied the odds and improved for a time), but hospice care is usually for those with chronic or life-threatening, life-limiting illnesses, palliative care etc - they must be full/busy if they are unable to offer respite when you asked for it - maybe ask them if they could bear you in mind if a place does become available - never know what could happen between now and the end of May. Please take care of yourself, don't beat yourself up for being human and know that Gransnet is full of people that can be supportive, can empathise, can make you smile/laugh, don't mind if you want to swear, let off steam or just have a good old moan etc - internet friends as such. and more because you more than deserve them

Oh luckygirl this so terrifies me that I will probably inflict this on my husband when my Alzheimer’s really affects my abilities and I feel so very very guilty. What a situation we are all in.

How difficult for you - does he have any medical condition that might contribute to his not wanting to go out? If not he sounds a bit like my OH who is, basically, anti-social and more interested in his dogs than people. We had words and I told him I wouldn't stop him doing what he wanted i.e. dogs but, equally, I was and am not prepared to sit at home waiting for him to be free to go out / on holiday etc. I think he has got the message as he still hates being on his own but doesn't moan when I go away / out - good luck

Hi I am also a carer for my brother I have found Carers Uk are excellent for advice

Firstly I have to send to Izabella - this must be so hard for you; and I am grateful that you took the trouble to contribute to this thread when life is a challenge for you.

Just by way of explanation, my OH has had PD for over 10 years and is already an outpatient at our local hospice.

I am touched by the kindness of Gransnetters and their willingness to "fess up" to similar uncomfortable negative emotions.

I did sit down with him this morning and told him clearly that I cannot put my life on total hold without becoming resentful and unhappy, and that therefore I would be going out to do things that give me some satisfaction in life - but that I would always take the necessary steps to make sure he was as safe as he can be. And that these might in time include carers coming in to sit with him, respite care etc. I also made it clear that I am very happy for him to come with me where appropriate (e.g. to an open garden etc.), and that this might involve using a wheelchair, but that if he did not want to come then I would still go, having made the necessary arrangements for his care.

He mostly took this on the chin; and, thanks to the support of all you kind people, I do not feel guilty and have made up my mind that I must stop myself going down that route.

I can only send thanks to you all; and also good wishes to those facing similar situations.

Luckygirl - I suspect every carer sometimes feels trapped. I know our neighbour in her 70s does as she cares for a very grumpy and unreasonable husband with dementia. She apologised to us not long ago for sounding weary and for criticising her husband when we had a chat. We sympathised. She feels her own life is very limited now.

You are doing a brilliant job Luckygirl so please sound off on here. No one will criticise you. You need an outlet. I think your plight highlights the problem of so many who are 'stuck' to a certain degree. Government (any government - now and in the future ) really does have to look at the increasing need for elderly care/minding and introduce more measures to ensure carers can get regular respite from their nursing roles.

I hope you are able to get away later in the year to your music festival. You are so deserving of a break.

Well done Luckygirl, these things are hard to broach, especially when you are both emotional.
Does your DH retain the things you talk about, or is he forgetful? I only ask because I wondered whether you could write them down, in a pretty card, or similar, so that he could read it perhaps when he is getting fraught with circumstances.

Luckygirl I can see you problem/ angst. My husband always been a bit anti social and now is worse so my life has shrunk even more and I feel cheated and resentful. I have to do virtually everything that requires a brain. Been told to do own thing but is difficult as have heath issues myself. Please try to get out and about. Don’t feel guilty. We must be careful not to make ourselves poorly at the selfish pressures of partners. Good luck and best wishes. Thank god for gransnet to let off steam.

Luckygirl, you really need to take care of yourself and not feel guilty having any time off. I have a neighbour who is in the same situation, and she has now developed dementia with so much stress. Can your husband not see that if you are ill there will be no-one to look after him?

Have you read "The Selfish Pig's Guide To Caring: How to cope with the emotional and practical aspects of caring for someone." If not, do read it. My sister bought it for me after I had finished looking after my Grandad who had dementia. I wish I had bought it whilst he was still alive, it would have been so useful.

conni, it is very doubtful that your neighbour's dementia is caused by stress.

Lucky, well done on talking to your DH. Keep coming back here if you need help to stick with it!!

Well done Luckygirl you and your other half have faced up to life as it really is. Good luck to you both.

Start looking now for a reliable 'live in' carer and introduce gradually so you can go to your music festival, if you have no family or friends who can step in and cover you. Or try care homes in your area who may have space (at a price though). Are there any run by charities as they are a bit cheaper e.g. the Quaker Society.

Luckygirl, I could give you a big hug for finding the courage to have that difficult conversation with your husband and for being assertive enough to state you will be living your life as well as keeping him as safe as humanly possible - good on you.

PD is another one of those particularly cruel illnesses (I recently went to my uncle's funeral and could see how caring for him with his PD had taken a toll on my aunt). It's good that your husband is an outpatient at your local hospice - my experience of hospice care was that it was excellent on every front and any time he is there you can breathe a bit knowing he is in good hands, as such. Take care of yourself and avail yourself of Gransnet support as much as you want or need to.

My husband was an expert at emotional blackmail, no health issues at the time but did not like me to have any kind of life without his being involved.

Luckygirl well done for spelling it out with your DH.

If you give people a choice of reasonable options, and none are acceptable, then the problem is theirs (although of course in some ways, it is still yours, iykwim)

Useful advice I once heard
“when you get to the end of your rope, tie a knot, and hang on!”

Luckygirl, my heart goes out to you, you need some freedom, in your situation, is there a service for a "sitter" to relieve you for a few hours and gradually increase the time, so that by May you can perhaps have someone for the time you are away, or a respite place for the few days, you must try to get to the music festival it sounds just what you need.Good luck and please let us know what happens.Sending hugs.