I feel the same way. It has been a year since my husband's official diagnosis and a year since I started caring for him full time, but he has been symptomatic for years. I used to feel "lucky" because other people had it worse--but I think that was just denial as a coping mechanism. It will get worse--we're just at the beginning. It is a very heavy load and it is a relief that so far no one has posted about how "he didn't chose to be sick" etc. There's a lot of that on the American forums. My son seems to have that attitude or just muscle through while my daughter acknowledges the toll this is taking on me & would be more supportive of daycare options etc if i could just find them!
why do we have to reach breaking point?
- Thread starter jay6
- Start date
Evo 2810 ke,
I've been feeling like that & it scares me to death (no pun intended) since I am only 51. I would really like to find a care option soon. It's like I am on house arrest.
I hate that about not choosing to be sick but you didn’t get the choice about being a carer. Dementia, more than other disease I can think of has such an impact on the carer. It’s a bit like the saying that it’s the dementia talking which I loath too. A disease can’t talk and it is still the person, damaged as they might be, who is doing the talking.
I think caring for a person with dementia is very different to others who care for cancer patients, those with heart conditions, accident trauma etc. Along with their person who has the disease, dementia also destroys relationships, not only with the carer but for the carer whose families refuse or can’t understand the nature of the disease.
Hi,
I'm usually a glass half full person, naturally waking up with a smile to face another day of whatever it brings. I try to keep my spirits up. I've been posting a joke or funny line on the tea time thread every other day,
But... I have to admit that after v nearly 7 years of full time caring for my wonderful OH, there are - and gradually increasing in frequency - days when I feel I don't know if I can carry on, or more usually, what's the point. Every day prolonging the heartache of her life and me watching her disappear as a member of the living dead. Yes, I've had three full days out in the last 12 months. Yes I have supportive children so far as their lives, families, work etc allow. Yes, I haven't got Alz's. So why should I moan, There are plenty of people worse off than me. I've become numb to the situation, to some extent. Sometimes I feel I just can't cry anymore than I have. For all I know, I may have another 7 years to go. What a life.........
I'm usually a glass half full person, naturally waking up with a smile to face another day of whatever it brings. I try to keep my spirits up. I've been posting a joke or funny line on the tea time thread every other day,
But... I have to admit that after v nearly 7 years of full time caring for my wonderful OH, there are - and gradually increasing in frequency - days when I feel I don't know if I can carry on, or more usually, what's the point. Every day prolonging the heartache of her life and me watching her disappear as a member of the living dead. Yes, I've had three full days out in the last 12 months. Yes I have supportive children so far as their lives, families, work etc allow. Yes, I haven't got Alz's. So why should I moan, There are plenty of people worse off than me. I've become numb to the situation, to some extent. Sometimes I feel I just can't cry anymore than I have. For all I know, I may have another 7 years to go. What a life.........
Hi there. I had the same problem a couple of months back. My husband also has dementia. He went into the hospital for a couple of day due to behaviour problems etc. I did not go with him as I needed a bit respite like you. The next day when I went to see him at 1.30pm like your husband, he was also sitting just in pants and a pad. It was so undignified. Also the floor where he was sitting was wet. I asked could someone clean it up, that was on deaf ears. I demanded that I was taking him out that day . I told them i will stay here all day till i see the doctor. They said it would take a couple of days before he will get assessed . I put my foot down and took him out. He needs 24hr care as he has a balance issue so he has to get takin to toilet etc as he can't walk alone as he will fall due to having a gait problem. I also have a wheelchair to get him around the house at times. To try and get him into the chair is a mission at times. He will just stand and look at it for at least 15 min especially when he gets up in the morning, you waste your time speaking to him, it's like talking to a brick wall. I also get abuse, verbal etc, and at breaking point most days, tears and just burn out. I can't even take my husband out the house now as we stay upstairs in a block of flats, so that makes it so difficult . His life has been taken away, also mine. There are days that i don't want to go out due to just being tired and drained , can't drive the car some days as i am too tired. Well that is my story . You are not alone. Enjoy a cu☕p of coffee.
What a relief to read this thread and to see how so many are in that same awful position as me where the person we are caring for , in my case my husband, ’isn't as bad as all that’. People say ‘you’d never know there was anything wrong with him’. Well they wouldn’t, would they, as he doesn’t accuse them of being wrong, he doesn’t sit there while they try and rectify mistakes he’s made, or find things he’s ‘lost’. They don’t get accused of saying they’ve done things they haven’t as HE knows for a fact that HE did whatever it was, not them.
Yes, he can still care for himself re personal hygiene. No, he’s not wandering the house all night so what have I got to complain about?. He can still take the dog for a walk. So many have it a lot worse than me and I feel guilty for moaning but…but…I’m TIRED. I am so fed up with explaining things for the umpteenth time - what’s happening in a film, what day it is, yes, the dog’s been fed, and no, it was me who fed her. No, you can’t remember where you took her for a walk this morning because you didn’t, that’s why we’re taking her out now so she’s fine and there’s no need to worry….You haven’t lost your glasses, no, you’ve not lost your bank card 😳..well because you don’t take it with you. Yes, I know the shower drain needs clearing, I’ll do it in a minute but I can’t bend down that easily because of my hip.
All trivial maybe but all add up. Add to that being told to,‘shut it’, to, ‘keep that mouth of yours closed, do you hear me!’ to, ‘you haven’t got a clue, have you’ (all this from a man who used to be so quiet and gentle and who rarely swore or lost his temper) and I’ll shut up now because I’m welling up as I write.
Everything people have said on here has struck such a chord with me, that somehow it began to pour out. Thank you so much and I do feel for all of you because I, too, know what it’s like and sod the business about ‘it’s the dementia talking’. Maybe the disease causes it but the fact is it’s my husband of 50 years who is standing there shouting at me and hurling abuse before going off to sulk and slamming doors and all the logical reasoning and blaming on dementia doesn’t help me feeling so hurt and depressed and helpless . X
Yes, he can still care for himself re personal hygiene. No, he’s not wandering the house all night so what have I got to complain about?. He can still take the dog for a walk. So many have it a lot worse than me and I feel guilty for moaning but…but…I’m TIRED. I am so fed up with explaining things for the umpteenth time - what’s happening in a film, what day it is, yes, the dog’s been fed, and no, it was me who fed her. No, you can’t remember where you took her for a walk this morning because you didn’t, that’s why we’re taking her out now so she’s fine and there’s no need to worry….You haven’t lost your glasses, no, you’ve not lost your bank card 😳..well because you don’t take it with you. Yes, I know the shower drain needs clearing, I’ll do it in a minute but I can’t bend down that easily because of my hip.
All trivial maybe but all add up. Add to that being told to,‘shut it’, to, ‘keep that mouth of yours closed, do you hear me!’ to, ‘you haven’t got a clue, have you’ (all this from a man who used to be so quiet and gentle and who rarely swore or lost his temper) and I’ll shut up now because I’m welling up as I write.
Everything people have said on here has struck such a chord with me, that somehow it began to pour out. Thank you so much and I do feel for all of you because I, too, know what it’s like and sod the business about ‘it’s the dementia talking’. Maybe the disease causes it but the fact is it’s my husband of 50 years who is standing there shouting at me and hurling abuse before going off to sulk and slamming doors and all the logical reasoning and blaming on dementia doesn’t help me feeling so hurt and depressed and helpless . X
I think that when it is your spouse who is changing from dementia it is especially hard. My mum had Alzheimers and now OH is in cognitive decline. I have suffered abuse from both of them - mum accused me of stealing from her, shouting at her and hitting her (although in reality it was the other way around) and OH said I was telling lies about him, taking him over, treating him like a child and preventing him from doing things. We've had porngate and on one memorable occasion he literally kicked the bathroom door down while I was having a bath.
Of the two I have found it hardest to cope with OH. He looks and sounds like my OH, my soulmate, but he doesnt behave like him. I once wrote (on another forum) - "the fairies have stolen my husband away and left this changeling in his place". That is just what it felt like.
I have learned to step back emotionally, build invisible walls round myself and grow a rhino thick skin. At one stage I pretended to myself that I was a professional carer and he was a client of mine. It is the only way I have been able to survive. As he has advanced his anger has burned out (or perhaps I have learned not to provoke it) and his gait and facial expression has changed, so he is altogether more frail and vulnerable. This means that it is easier to be compassionate, even though the love I once had is gone.
Someone on here said that caring for someone with dementia changes you and you never get back to what you were. I think they are right.
Of the two I have found it hardest to cope with OH. He looks and sounds like my OH, my soulmate, but he doesnt behave like him. I once wrote (on another forum) - "the fairies have stolen my husband away and left this changeling in his place". That is just what it felt like.
I have learned to step back emotionally, build invisible walls round myself and grow a rhino thick skin. At one stage I pretended to myself that I was a professional carer and he was a client of mine. It is the only way I have been able to survive. As he has advanced his anger has burned out (or perhaps I have learned not to provoke it) and his gait and facial expression has changed, so he is altogether more frail and vulnerable. This means that it is easier to be compassionate, even though the love I once had is gone.
Someone on here said that caring for someone with dementia changes you and you never get back to what you were. I think they are right.
I’m so sorry to hear your experiences @canary. When you said that your OH looks like him, sounds like him, your soulmate but…he doesn’t behave like him - yes, that’s it. He’s been taken by the fairies and left a changeling sums it up perfectly.
I wish I knew how you grew that rhino skin. How did you manage to tell yourself that this was a client? As my OH has declined I do find myself explain things to him as I would to one of my students or even to one of the kids. Then I realise how I’ve just gone into teaching mode - maybe that’s the way, to concentrate on forcing yourself to be like that.
That’s changing us though, isn’t it? Please, someone, wave a magic wand and make it all as it used to be. Someone??? Anyone??? Thank you for sharing @canary.
I wish I knew how you grew that rhino skin. How did you manage to tell yourself that this was a client? As my OH has declined I do find myself explain things to him as I would to one of my students or even to one of the kids. Then I realise how I’ve just gone into teaching mode - maybe that’s the way, to concentrate on forcing yourself to be like that.
That’s changing us though, isn’t it? Please, someone, wave a magic wand and make it all as it used to be. Someone??? Anyone??? Thank you for sharing @canary.
Im not sure there any one way to grow a rhino skin, but maybe the way for you is go into teacher mode and treat him like one of your students
xx
Hi there, Don't worry about welling up, or crying , I am doing that every day, I think that is the only way for me to get things out of my system and not to start shouting at my husband. We had not a bad night last night. I have stopped giving him lorazepam for agitation as it makes him worse as he has a balance issue. I have stared giving him 2 at night now and again to help him and myself get a better night and it seems to help. Anyway just you enjoy taking your dog for a walk, at least you can still get about with your husband. 🦋
I think that the strategies you use when you have been a ’chalkie’ are very valuable and I use them all the time. I was a teacher for years and I know that experience has helped me enormously. When you are teaching children, you are mentally are ten steps ahead of them, anticipating problems, working out solutions and developing what I call the ’quick step‘ of heading off trouble.
Sure, you can’t get it right all of the time with either the kids or the OH but personally, I use that same sense of remaining a little detached but still responsible with OH. That doesn’t mean that I treat him like a child, just that I respond to childish behaviour like the grown up in the room.
I grew a crocodile skin, because I knew all the horrible things OH said were untrue so learned to never, never, never take it personally. I also try to take things one day at a time which has been a little difficult lately but that is something I try to put into practice.
That is what I was saying to my husband the other day. I can't remember who I was before Mum was diagnosed with Alzheimer's. The last four years have been so awful and sad. I've fallen out with my 'invisible' sister too. Mum passed in August, so I'm still grieving. I want to be back how I was before all this, but I can't find my way. The last four years are in my head and have changed me. Hopefully time will sort it.
Gosh that just voices everything I am feeling at the moment. It is good to know it is not just me! Not that it helps much day to day. Talking nonsense, ‘fixing and sorting’ things all the time which I need to then put right. No empathy, no personal space and today he even opened a parcel I had packed for our son, and was going to post tomorrow, and started eating all of the chocolates in it. He couldn’t see what was wrong. The bucket of patience is getting rather empty at the moment. He is not coming to bed but is up all night mooching about so I am not sleeping either wondering what he is doing and getting up to check. I have lost my husband and the future seems endless.
Hi there. Yes I have the same with my husband. He has a fall problem and also I have to walk all over the house with him when he decides to get up. I sleep in the same bed as him as If I go into the lounge he will try and get up to see where I am and falls then it takes about 1/2 hour to get him up and he just laughs, then will do the same thing again. Big joke!! I have not slept all night due to him getting up wanting tea and toast. Then when he is awake in bed it is always touching me, relentless. Lucky I have my older daughter staying with us. She is also getting to rock bottom as well. We are upstairs in a flat and I can't take my Husband out due to his falling. He has been in the house for 1 year now. We are all like prisoners. Rush to the shops, that's what I do 2 days a week if that. I can't drive all the time as I am too exhausted. Well that is my moan. Try and have good day. Take care.💦
Totally understand you not visiting for 4 days. My husband is going into respite today for second time and has two weeks away. I woke in breathing panic and had to come online where I feel supported. Having been his carer for 5 or 6 years with only recent respite I just want to be alone. He is still physically mobile but needs my brain for all decisions. I love him but hate his illness. Enjoy your alone time and leave the guilt. You are entitled to a some time to do what you like. Guilt is for those who don't care not for those who do!!
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