1. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,336
    East of England
    I am with you on this because I have had a difficult weekend too. He hasn’t shaved, showered or changed his clothes lately and looks terrible, he is not going out of the house and his only exercise is going up and down the stairs. For two days he has lived in his night clothes. Getting him to do these things is a struggle for me and when I do get him cleaned up he looks good, like normal as he used to be. Yesterday I had a moment when I thought, here I am struggling away doing absolutely everything while he says I want this and I want that during the short periods he is up. For a brief moment I felt grim, and faced him with this truth and he said yes I must help more and my heart broke. I have to say to myself that he cannot help it, he is a very sick man who thinks he is fine which protects him from the truth. He picked up a photograph of himself taken 10-15 years ago and said ‘I don’t think I have changed much’, and I just said mm.
     
  2. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,293
    Female
    South of the Border
    #742 maryjoan, Jun 30, 2019
    Last edited: Jun 30, 2019
    Oh My Goodness! This is just like my other half. Not quite as bad in the dressing stakes, but really thinks he is just like he was - how do you feel about it??
    I find it very hard to put into words, but the nearest I can get is that I am living a lie.
    I know how things really are, know what the future is for him - but he has not a clue, and needs not have a clue.

    I sometimes wonder is it him that is living the lie, or is it me?

    Must be me and thee @Grahamstown - because they don't know they are, and we do.........
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,359
    Bless him, it is heartbreaking isn't it. Yet how long can we go on? Just physically even if we want to.
     
  4. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,336
    East of England
    I feel that it’s no wonder looking after someone with this disease plays havoc with your mental health. Living with anyone who has a mental illness of some sort, which the dementias are, is very detrimental to the person caring for them. Many years ago, I gave a home with our family to a family friend who suffered from bi-polar disorder. It became a sort of talking therapy with daily support, and she eventually managed to get on her feet and with the right treatment has lived until now in her 70s with occasional hospital treatments, but she has never been what I would call normal and living with her was like walking on eggshells. This was a good lesson for today, only living 24/7 with someone can you fully understand the toll it takes. I was a lot younger then with two children and working part time, so plenty of energy and positive attitude. Now there is no treatment, no hope of improvement and complete mental chaos every day. This must affect you, and it takes a very robust person to sail through it untouched. A catholic friend of mine appears to be just such a person, her husband having been declining for twenty years undiagnosed and she just seems saintly in her attitude. Of course I don’t know what really goes on, and he has enough medical ailments to be more of a worry. I now fall back on my two weeks holiday which definitely helped but it’s only a short break from the daily routine. It’s not an answer just a sticking plaster. I think that’s what really gets to me, because there is no answer, not care home, not death, I cannot get back that life we have had for over 50 years now and it’s facing up to that is so hard to do. After all we can’t live for ever, which media articles seem to imply, everything is ‘life threatening’. Yes, well life is! As for my husband, I am letting him make the decisions that are not life threatening, it doesn’t matter if he doesn’t do this or that, as long as he is contented, fed and watered, that’s it. I get cross enough as it is that it’s like kicking a puppy, and he is so vulnerable. He will have a shower and I will take him for a proper shave and help him dress eventually but not with an argument every single day. When I can keep calm and let him be, it’s easier for me because he is immune to reason.
     
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,336
    East of England
    #745 Grahamstown, Jun 30, 2019
    Last edited: Jun 30, 2019
    Well after all that, he has come down, a couple of hours earlier than the past few days, has shaved and dressed needing a bit of help with his buttons and quite perky. So that’s me told! I know it won’t last but it’s good while it does.

    No it doesn’t last. Constantly being caught out by this disease.
     
  6. Dutchman

    Dutchman Registered User

    May 26, 2017
    270
    I wonder what would happen if we said ‘that’s it, I can’t cope anymore and I’m calling it a day ‘. My wife’s at that point where she is doesn’t just look at the floor, is fairly mobile, has a degree of awareness but is away with the fairies most the time. It’s sad to realise that I’m looking forward to the point where she has to go into a home so l can reclaim some of my life while I still have some left.

    I’m looking at her now dozing on the settee and ask myself would I miss her or am I just in love with the memory of her before dementia. She can’t empathise with my feelings anymore so there’s no support there . I’m not physically attracted to her anymore. So what’s left? Memories only and we can’t live on those.
     
  7. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    @Dutchman - I cant remember, have you tried getting her into a care home previously?
     
  8. LizzieM

    LizzieM Registered User

    May 6, 2019
    27
    Your text ‘I cannot get back the life that we have had’ hit home and is the nub of most of the angst for me. My OH (pwd) is a lot older than I am and I find it hard that so many people and our friends of same age as him are pretty much OK (good for them though - keep doing what they’re doing :), little holidays, big holidays, meals out, shared interests, shared dreams, spontaneity, planning, independence, discussion, debate, conversation - all with their loved one. His seemingly never-ending procession of serious ailments over the last 12 years was already taking a toll but the vascular dementia is the absolute pits. I feel I’m living a very constrained single life that is not of my choosing (who would?), tied to an almost complete stranger that bears an unsettling resemblance to someone that I love very much indeed but can no longer reach or find. I cannot change it, I cannot fix it, I cannot make it better - anticipatory grief and mourning it is, not to mention the incessant whirring worry (I’m still the breadwinner trying to keep a roof over our heads) of finance etc.
    Today I’ve shouted, sworn, had a few tears and so on because to cap it all he has yet another sodding UTI, can’t fathom his **** from his elbow literally, and it’s yet another beautiful Sunday waiting for 111 to call back and sort a prescription for yet more bloody antibiotics. And now I’m going to have to go as he’s just called me as he is wet again, the catheter bag is leaking somewhere, his trousers are sopping, the carpet is now sopping and I might as well be living in a urinal....
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    ((((((((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))) Lizzie
     
  10. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    34
    Female
    Boston
    My OH is also older, has mixed dementia and has started refusing to go on trips or go with me places. He is mobile and still capable of personal hygiene but is dreadful with his meds and is obsessed with wanting to drive. I have organised for his family to help when I’ve had prearranged events but they have now found out how difficult it is and said I should’ve cancelled my plans to be there. I have a wedding coming up for some dear friends‘ son who I’ve known all his life. Am I supposed to not go despite the family having previously agreed it was ok? My OH is happy for me to go..
     
  11. Dutchman

    Dutchman Registered User

    May 26, 2017
    270
    No, that’s the issue here. She’s not that far advanced yet but I know it’s on the horizon, out there waiting for us like a storm. Two years since the official diagnosis of VD so what will it be like in 12 months?
     
  12. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    What makes you think that she is not that advanced @Dutchman ?
    From what you say, if you did pack up and leave, then she would probably have to move into a care home.
     
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    270
    Hm! Interesting comment. I suppose I read others situations in the forum and there’s a part of me that says that they have it worse than me and just get on with it. And there’s a part of me that can’t just leave as I’ve got too much invested in the home. I suppose I’ve got to reach horrendous point to consider leaving. Is that a cowardly attitude?
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    Not at all. I was interested in your reasoning. Its just that your wife sounds at about the same level as my mum was when she moved into a care home - late mid-stage, I would say. It is very easy to read other posts and think that you are not so bad, and yet it is.
    You are seriously not coping and yet you do not have any help and are talking about it having to get horrendous.
    What is your line in the sand?
     
  15. LizzieM

    LizzieM Registered User

    May 6, 2019
    27
    Thank you v much
    Bit calmer now but still waiting for a doc to home visit as out of hours service (phoned back 6 hours later) cannot apparently prescribe antibiotics by phone....
    It was suggested I could of course manhandle this limited mobility, highly confused, registered blind/partially sighted chap with dementia into a truck and drive 40 minutes to a 24hr clinic and wait for however long to be seen there... wonder how many changes of trousers, pads etc we’ll need for that.
     
  16. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    [​IMG]
     
  17. LizzieM

    LizzieM Registered User

    May 6, 2019
    27
    Indeed... gave me a wry smile. Thank you again.
     
  18. hatto22

    hatto22 Registered User

    Aug 24, 2018
    10
    Hi, I may be going off on a tangent here but I don't seem able to create a new thread so I'm going to intervene in this one. Sorry for any inconvenience. I need some help if poss. I look after my mum 24/7. She has Picks disease and has high anxiety about being left on her own so I am building up on carers coming to the home to sit with her. Presently I have 7 hours a week free and will shortly be increasing to 11. As time goes by I'm getting better at being calm with her but I still have a tendency to shout when my triggers are hit. This evening, just when I thought we would be going to bed my mum wanted to go and check up at my house to see if her mum was there. I tried to distract by rushing her off to bed but she wasn't having it. So I then went into default mode which is....'I've been with you since 9 this morning. All day I've been here and now when I want to go to bed you start this, etc, etc' in a raised voice .... I'm guessing that paints a picture. When I mention to the people around me they say 'I don't blame you, I don't know how you do it.' BUT I want to stop shouting at my mum. I managed to turn it around and we went up together and looked around my house so that she could see my nan wasn't there and then I apologised for shouting. And she was genuinely upset that she's being a nuisance. I guess I'm writing this down so that it's out in the open and serves as a cathartic measure. I really need for my own self respect and kindness to my mum to stop the 'meltdowns'.
     
  19. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,336
    East of England
    You are not going off at a tangent rest assured. This thread is full of people who have been pushed hard by the demands of looking after someone and I know all about the shouting. The trouble is the shouting only affects me and has very little effect on the behaviour which made me do it. I have developed lots of strategies to try and control it but it overcomes you at times because it is so repetitive. I always end up being cross even if I don’t shout through sheer frustration at the stupidity. I never thought my patience would be tested as much as it has done over the past few years. I thought today that he doesn’t think anything has changed, that he is still the same and he thinks we have a lovely life. The fact that he does absolutely nothing is meaningless. He is totally unaware of me now other than being there to look after him. Getting the frustration out really does help.
     
  20. AliceA

    AliceA Registered User

    May 27, 2016
    2,359
    The problem seems, Hatto, that going off on a tangent although perfectly understandable is counterproductive.
    We are the one that gets the boomerang back in the neck. Finding strategies and practising these when not worn out help a bit when exhausted at the end of the day.
    You are right that for our own sake we need to focus on ways of nurturing our our own self (respect) and finding meaning in what we do beyond the every day chores. Practicing loving kindness needs to be fully there in one sense but anchored. So you can reach out but not get swept of your feet.
    Rather like and actor fully in the role while doing it but not 'in real life'.
    Try and use your respite time for you. When I had babies I slept when they did, I am doing that now. Do not push your standards too high.
     

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