At end of tether

Luckygirl you need a break , no question of not going to the music festival , I hope another place can take your OH for respite . Have you a social worker ? Surely they can organise something , my heart aches for you xxxxxxxx

Luckygirl your words paint a vivid picture of the frustrations and cares you are carrying. It may not get said by your husband, but I'm sure that somewhere there lurks in him an awareness that you are indeed a wife more precious than rubies.

(((Hugs))) lucky. I can't do much else but we are here to listen.

I am sitting here watching him now - he is asleep in a crumpled heap on the sofa - that is how he spends most of his time. He cannot keep his head up himself and wears a neck collar support some of the time.

Special chair coming for him on Monday, so at least he might be more comfortable.

Every day he gets worse - it is like watching him slowly fade away. There is no pleasure in his life. But nothing to be done.

My heart goes out to you, you are not alone, I am struggling with similar situation. But my other half is a bit more understanding, but I resent his illness with a passion, and I feel very angry a lot of the time, and yes very guilty at feeling that way. I am lucky that I have friends I can offload to, but I sometimes feel they must be fed up with my misery too. I have found it very helpful to offload here and had many understanding replies and support. Sending big ?

Thank you Bluebell. I hope you are feeling the love and support here luckygirl. One day at a time for
Many of us

I am late to this thread too but just want to say how sympathetic I feel and how well you have done to have the honest conversation with him about how you feel. That is a huge hurdle. Guilt is a very difficult emotion, and often gets in the way of logical decision making. I have ongoing problems with my mother, but nothing like you are coping with your OH, and I came to the realisation some time ago that I need to have some fun and independence in my life as this is the only life I will have. Self preservation at the end of the day. You have done everything you possibly can for your OH, so try and live a little without the guilt. Life passes us by in the blink of an eye. Big hugs to you.

Luckygirl I've come late to this thread. I'm so sorry you're finding things so immensely difficult at the moment. I wish I had some words of wisdom or experience I could offer, but you've had lots of good suggestions and sympathetic support on this thread. I'm pleased you've had the conversation with your DH and really hope he can now begin to understand your frustration and stress.
Please don't give up on the music festival - I do so hope you find a way to get there, as I know how important it is to you.
Sending you virtual (((((hugs))))) and

Sorry you're feeling so low and trapped, Lucky Girl: that's a miserable life for anyone...I agree with others who have suggested asking around for befriending or Carers Associations. There's a kind of local FB here where you can ask for help/recommendations for various jobs....perhaps you have one too?
My DH has Alzheimer's and it took me until last year to recognise I needed to plan respite for myself or I would be totally burnt out with caring. I plan a weekend away, staying with friends, once a month and a couple of longer breaks away - sometimes solo - as the holidays I used to take my husband on were too stressful for us both. If you haven't already read it, do get The Selfish Pigs Guide To Caring, which is a sad/funny read but really helps with guilt and the kinds of thoughts you wouldn't want to say out loud.
Sending you a virtual hug and hope you can organise something soon - for both your sakes.

Luckygirl Sending love and many virtual hugs. This must be awful.

Algeswifeval - am in a similar situation to yourself, I do go out most days for my sanity, perhaps only to buy a newspaper, my faith keeps us both strong.

I felt the frustrations with my Nan and Mum and feel guilt that I wasn’t the perfect daughter granddaughter at times when i feel I should have been i felt I tried my best at the time
This is not a post about me but I just wanted to say I understand and truly feel for you and hope it improves for both of you Good luck and peace ?
Izabella many kind thoughts and good wishes to you ?

luckygirl and other carers, I salute you. I have not had the experience of caring for a husband, but was a fulltime carer for severely mentally ill AC for years. It nearly broke me. The constant guilt trips. Looking back (ain't hindsight grand!?) I would have done things differently. Those years of total dependency have left me with longterm health conditions of my own ironically.
Please, please research every possible option for support. You need and deserve help as a carer.
luckygirl you were so right to have that difficult conversation.

I feel for you Luckygirl. DH has PD with associated dementia. I used to leave him for short periods too, but he wouldn't have been able to call for help or take meds. He was anti everything. Nothing I did was right, and he was becoming aggressive.. It is very wearing. He finally left home, having some very strange ideas in his head. To cut a very long story short, he is in a Nursing home. It has made life more bearable on one level, but I'm plagued by shame that I'm not looking after him, so just can't really move on. Comfort yourself with the thought that you are still doing your best for him. Are there any local charities or organisations that can provide a 'sitter' while you are out? Carers are supposed to have a right to support, but I know from experience that no one will come knocking at your door. Most of all, take care of yourself as much as you can, and don't feel bad about having a moan. Better out than in!

Don't give up the festival! You have time to work out how you are going to get there and, hopefully, now with your OH's help. Outside helpful organisations have been suggested - AgeUK, Carers Centre - and that seems a good way if you don't have any options besides the hospice. You are also entitled to a 'carer assessment' as the carer for your OH. These things take time (contact your local council, doctor, anyone who can speed this along) but they may be able to provide some respite care for you in the form of some temporary care for your OH. Even with you as his carer, he can be assessed to have additional care. Don't ever feel guilty for the way you feel, acknowledge that you have good reason and try to find a solution.

My husband has asbestosis and not going to get better.He is house bound. He is very poorly most days and not so bad on other days. However, I do. Are a point of going out everyday. If I stayed indoors I would go demented. He also gets grumpy. He does not object or try to stop me leading my own life as much as I can. He would not deprive me of having happiness where I can find it. Maybe you are not so lucky. I feel for you, you need to get out daily.

Would it perhaps be less stressful even though disappointing to give the festival a miss this time around? best wishes it’s a difficult & sad situation

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.

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

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)

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, 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.

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.

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

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!!