1. Casbow

    Casbow Registered User

    Sep 3, 2013
    I do not know how to feel happy any more. My husbands dementia is so bad now and I feel so lonely. There is no life anymore. Just to get through each day is all I do. There is no conversation, no interest in anything, he paces about in and out of the house usually for about 3 hours in the afternoon. He moves things about and I spend half my time looking for missing items. Hearing aid has been missing for 3 weeks so now he can 't hear me unless I raise my voice but there is no point in bothering to do that as he has no interest in anything I say. We go to Singing for the brain which is for 1 and a half hours once a fortnight and this is probably the only time I feel a bit happy. I am such a misery that its no wonder I don't see much of my friends and relatives. What do other carers do to keep happy.? My husband by the way has been diognosed for 7 years so is really quite bad now. Sorry to moan so much.
  2. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    North East Lincs
    You have plenty to moan about. Watching someone's decline as the condition progresses is heartbreaking.
  3. pamann

    pamann Registered User

    Oct 28, 2013
    Hello casbow so sorry you are feeling so sad, could you get a carer to come in for a few hrs, that would enable you to go out!, maybe meet a friend, my hubby is much the same he has no capacity, l do play bowls 2 evenings a week, my son is here to look after him. Get in touch with Crossroads, or Social services they will be able to help you, or even day care would give you a break. Thinking of you.
  4. marionq

    marionq Registered User

    Apr 24, 2013
    I truly wish I had an instant cure for unhappiness because it is so debilitating. I find that some of my lows make me feel as if I can't go on and then something happens to lift my spirits again and on we go until the next emotional crash. Mostly for me it is to do with my husband's uncontrollable need to be " going somewhere". We are out somewhere of course every day and often again and again as he instantly forgets even though he is exhausted and suffering with his damaged knee.

    It is of course understandable that people with dementia are so demanding of our time and emotion but that doesnt solve how little is left for ourselves.

    Can you get any home care which would give you a few hours to recover a little of yourself?
  5. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    Ah, Casbow. My heart truly goes out to you, having been in this position myself for so long. Is there no chance of getting a bit of respite for yourself? You are worn out, my dear.

    Dementia is hard on our heads, too. We need a rest from the day-to-day of it just to function at all. Do speak to your GP about how bad you're feeling. You are legally entitled to a Carer's Assessment. Someone else will have to give you the details as that never happened to me. I believe you have to contact your local council and ask for one. It's either that, or your local social services department. Whatever, I would urge you at least to chat with your doctor. Perhaps this will help get things started for you.

    Whilst my hubby was still living with me, (he's in full-time care, now), I insisted I had things to do that I loved. Music and reading helped a lot. If you can - pick something you really enjoy doing and just do it. You'll be surprised at how much a hobby really helps get you over the bad patches, xxxxxxxx
  6. nannylondon

    nannylondon Registered User

    Apr 7, 2014
    I don't know what to say we get so caught up.caring for our loved ones that we have no time to care for ourselves as others have said can you get carers or sitters to come in to.give you a break like even just to.meet friends for a coffee like Chuggalug I also.found music a great help.My own husband has now gone into full time care and that has brought a different kind of loneliness but I have found TP good company x
  7. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    I'm so sorry to hear of your unhappiness, Casbow, and wish there was something I could suggest to help. It must be very lonely to be in your position and my heart goes out to you and anyone else in the same situation.

    There is always someone to talk to on TP, and we don't always talk about dementia - have you seen the Tea Room? There are lots of light hearted threads on there that can help to take our minds off our problems even if just for a few minutes.

    I'm not trying to make light of your difficulties, just trying to let you know that there are friends out there - I've made lots of them here and they have helped me so much.

  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Casbow

    Seven years caring with no help is a long time and I take my hat off to you. Now your husband's condition has deteriorated to the level wher the good times are very few it makes your life even more isolated and you more lonely.

    Could you post on TP more regularly? It's where I got my support when I was more or less housebound and very isolated.

    There are many here who will identify with you.
  9. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    My heart goes out to you, as I know how debilitating this constant caring can be. I agree with what others have said. Crossroads Care (now part of Carers Org) was my salvation. I don't know if your area is the same, but I was given 12 hours care every 4 weeks, to be apportioned however I wanted it.

    I opted for 3 x 1 hour sessions weekly, and they bathed John, and chatted to him, whilst I slept. I paid £3.75 per hour, for 6 hours and then got 6 free, and it was funded by the Peoples Lottery. Hope this helps. xxx
  10. beverrino

    beverrino Registered User

    Jan 12, 2015
    hi Casbow - so sorry to hear of your unhappiness. I cannot begin to imagine what it must be like for you having a partner with this horrible disease.
    I find it difficult enough with my Mum, I visit her daily, but sometimes it is soul destroying. On bad days it has such a traumatic effect on me mentally, I just find it difficult to snap out of the feelings of despair.
    But living this way with a partner must be even worse. I have every sympathy for you, but it sounds as though you need some help.
    Do you have any friends that could visit - or perhaps someone that could sit with your husband so you can have some time on your own - maybe just to go for a coffee or visit the hairdressers - some me time.
    TP are such lovely caring people and it helps to talk it really does. Take care xx
  11. Essie

    Essie Registered User

    Feb 11, 2015
    Casbow I too am very sorry that you are so unhappy though honestly I'm not surprised - I am well aware of that feeling that all you are doing is existing rather living. There is help out there as others have said, do reach out and get it - this is a link for carer support in your area http://www.ccvs.org/what-we-do/community-development/resources/information-for-carers/ The advice there and the various different options for help should at least be a start.

    Contact with others and periods where your OH is looked after by someone else so that you can have a break, time to yourself and the chance to do something for you is vital. It's your life too, you must redress the balance a bit and get things on a more even keel or you will run yourself in to the ground and that's no good for anyone. You do sound a bit depressed so maybe seeing your GP about you, and your needs would be the very minimum you need to do...

    My advice would be say Yes to everything that's available, if it turns out not to be right for you and OH then you can always cancel but I found that once you are 'in the system' other help is offered too but when you are 'outside' and just coping on your own that's a very hard and lonely place to be.
  12. Casbow

    Casbow Registered User

    Sep 3, 2013
    I am so unhappy

    I am not very clever with this internet lark. Thankyou for everyone who answered my plea. I have tried two day centres but they say they cannot keep him there as he will not settle and is disruptive. I have crossroads for 2 hours a fortnight. I can have four hours a week but it clashes with singing for the brain which I really enjoy and in a funny way I think he does but he doesn't participate anymore. My problems seem to get worse by the day. he keeps walking out to the corner of our road. checking,checking, locking and unlocking the gate. He says they tell him and they do it. My heart breaks to see his turmoil. He talks nonsense, undoes his seat belt which is scary.In means out and up means down. I don't know whats going on any more. I think I have dementia as well. x
  13. Essie

    Essie Registered User

    Feb 11, 2015
    Oh Casbow, I do feel for you. My advice would be see your/OH's GP - asap. If OH's condition is deteriorating then a reassessment of his meds might help but also a reassessment of your needs as a carer - your GP should be able to help with referring you for for that assessment.

    Whilst the day centres you have tried may not have been suitable for OH's needs that won't be the case for everywhere and if he is too much work for professional carers then that surely says a lot about how hard you are working on a daily basis... The Crossroads sitting service should be flexible in terms of when you have it so that it doesn't clash with the one bit of outside enjoyment you have - I know it can be hard asking and negotiating things but often things aren't as bad or as hard as we fear they will be so do, if you can, ask and see if you can alter the hours offered so that you are having as much as possible.

    The link I listed does show phone numbers for all the services listed so you don't have to do it online but the phone number for Colchester Carers Centre is 01206 560997 and they should be able to help you or point you in the right direction.
  14. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    Take this last post Casbow. Print it out and take it to your GP. You must get help now. It sounds as if you're on the brink of carer breakdown. I can hear your desperation. You must get help, my dear. Please, do it for me, xxxxxxxxxxxxxx
  15. Essie

    Essie Registered User

    Feb 11, 2015
    I'll second that Chuggs.
  16. Jinx

    Jinx Registered User

    Mar 13, 2014
    Please follow Chuggalug's advice, you must get some help. x

    Sent from my iPad using Talking Point
  17. 1mindy

    1mindy Registered User

    Jul 21, 2015
    This is exactly how I have felt and I'm sure many others. My OH is not so bad yet in that he doesn't wander.But its the lack of sensible conversation ,things going missing ,in particular keys,which wasn't him ,so daily hunts . We have always done everything together so at first I did nothing without him if he didn't want to go I would stay with him.Now I see our friends socially when he won't go. I see my girl friends. I go to the cinema alone which felt a bit strange at first . I have days out with my daughter,go and see my son. He doesn't want to do anything ,we do discuss it but he says he feels secure at home.
    Now I know you can't leave your OH but you can get carers i n which you so clearly need or you will become ill yourself and not be able to cope.
    Take that post to the doctor I'm certain they will get you the support you so clearly need.You do need a life too xx
  18. Casbow

    Casbow Registered User

    Sep 3, 2013

    Once again thankyou to everyone for taking the time to write to me with your kindness and advice. On thursday last week our local Mental health hospital rang and offered us an appointment. It came as a surprise as I had been previously told that there was nothing more they could do. I think we are probably going to be offered different medication, at the moment he has diazipam which can help but not always. The problem with medication is that he will probably be so sleepy and then I feel what little life we have left will be gone. The sundowning is getting worse and going on for longer. A neighbour bought him back the other day. He normally walks to the top on the road (not far) and then after he's checked out both ways he comes back. This time he turned right and started walking towards the other end of the road which is a long way.Going out is such a problem that I have almost given up. Which makes life even more boring.Toilet problems as well! Sorry I am moaning again. I hope the hospital appointment will help. Will let you know.
  19. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    Hi Casbow,

    You are in the exact same situation as my mum. I live abroad, but I speak to her on Skype every day. She is usually on for anything up to an hour and it is her way to unload all her stress. Is it possible for you to talk to someone regularly in a similar way? I know it isn't much help, but it's better than nothing.

  20. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    Let's hope this appointment helps, but also, Casbow, do speak to your GP. That message you left on here the other day really worried me. Much love to you.

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