It`s the little things which bug me....
- Thread starter Anthoula
- Start date
I agree with every word , you said l am now at a stage where l know, that because of the generation we are in , caring for a relative is seen as a red flag. I honestly am not offended by this , as l have said to myself l could NEVER take care of a partner should they become unwell.
That's a direct result of the mental & physical exhaustion of doing it with a relative with dementia. It is sad when the home goes , to pay for care. I wonder if when the next generation becomes elderly the social system in relation to social care residential homes will collapse too much demand but not enough care homes. I know carers have saved the government millions of pounds as a collective .. l also seen a YT video with pretty young people, some caring for both relatives. The single girl ,who had no children said it's almost impossible to find a partner ,because of her caring role. Now if we get in to mental health, physical health issues life expectancy of carers we have really opened a can of worms...surely one day there will be stats on this
I know how you feel, but you know what if mental health professionals in GP surgery have big SIGNS saying no emotional abuse, or the person will be asked to leave , clearly they are in the medical field to some degree.
Then they are making all people aware, including those with dementia that aggression will not be tolerated.l personally feel some of the carers on here are codependent & have no healthy boundaries . Not meaning to cause offence, but l study human behaviour & l have seen a person with dementia assault or attempt to a relative ,& then switch to a peaceful temperate for a health care professional. Ironically trade services have no issues, banning people with dementia who are emotionally or physically aggressive from their services.
Respectfully can l just agree with Anthoula l'm not interested in any advice .Thank you
" Living mental bereavement" you give me hope that there is someone on the planet that is aware of the grief cycle. And how confusing it is with dementia.Imagine going through, anger, bargaining , acceptance & denial thousands of time. In fact cruse bereavement have a dementia bereavement course, but it takes ages to get on it.
In fact it is ambiguous grief, because the person is still physically there, but mentally checked out but then can reappear or remember things .It feels destabilising , learnt that from an author , who wrote on dementia , l have literally searched high & low for someone to understand what l was feeling and finally found it in a book after 13 years . I personally think it's in human nature, to get fed up with the woes of caregiving especially,when it goes on for extended periods of time. Compassion seems to be a rare commodity these days.
This is called Host Mode, or Showtiming, and is a feature of dementia
Not advising, just informing
But I agree, aggression and violence is not to be tolerated
i am quite insulted by the tone and the attitude you are expressing. studying a topic and actually living the topic are very different things. im certainly not co-dependant on my husband or any one else and believe me i have very healthy boundaries thank you. i suggest you get back to the theory and i will continue in practice. university of life and all that.
Hey, I feel exactly the same, I feel sad and cross all at the same time, I fear for the future. I’m sure we are all allowed to experience these feelings, selfishness included. Take care
@really78 said "In fact it is ambiguous grief, because the person is still physically there, but mentally checked out but then can reappear or remember things .It feels destabilising , learnt that from an author , who wrote on dementia , l have literally searched high & low for someone to understand what l was feeling and finally found it in a book after 13 years . I personally think it's in human nature, to get fed up with the woes of caregiving especially, when it goes on for extended periods of time. Compassion seems to be a rare commodity these days."
I respectfully disagree with your statement that anticipatory grief is ambiguous grief, as I believe that anticipatory grief is real grief, and even if the PWD may on odd occasions have small periods of lucidity, the loss suffered and felt by the carer is not lessened. These odd periods of lucidity can highlight the loss, and in my case with my OH I have not felt destabilised.
If a carer is absolutely fed up with the woes of caregiving, whether for short or extended periods the carer does not have to continue to be a carer.
Many people cannot cope with that and cease to be carers.
There's nothing wrong in a carer getting fed up and angry etc, and it's quite understandable that this occurs, but, in my opinion. that doesn't help the situation and that isn't sustainable in the long term and thus, the carer, if they are going to continue to be a carer would have to adjust and change their approach with the PWD to try and prevent that anger arising, if at all possible. Again, in my humble opinion, the carer has to get to acceptance of the situation (including it's deterioration) to be able to manage.
I respectfully disagree with your statement that anticipatory grief is ambiguous grief, as I believe that anticipatory grief is real grief, and even if the PWD may on odd occasions have small periods of lucidity, the loss suffered and felt by the carer is not lessened. These odd periods of lucidity can highlight the loss, and in my case with my OH I have not felt destabilised.
If a carer is absolutely fed up with the woes of caregiving, whether for short or extended periods the carer does not have to continue to be a carer.
Many people cannot cope with that and cease to be carers.
There's nothing wrong in a carer getting fed up and angry etc, and it's quite understandable that this occurs, but, in my opinion. that doesn't help the situation and that isn't sustainable in the long term and thus, the carer, if they are going to continue to be a carer would have to adjust and change their approach with the PWD to try and prevent that anger arising, if at all possible. Again, in my humble opinion, the carer has to get to acceptance of the situation (including it's deterioration) to be able to manage.
Thanks scotlass. It is hard when you have to cope with everything isn't it? On days when you are in need of support and there is none, it's even harder. I swear if I told him I was having a heart attack, he wouldn't react! My other half has never been good at DIY, but he always knew someone who could do what needed doing. I have a go at most things, but I'm not very good! Some days the weight of responsibility for everything is overwhelming. Well done for sorting the gate out. I know the feeling of achieving something, only for it to be ignored. It is such a strange way to be living. 😢
My husband is convinced he still does everything he used to do. This led to a conversation recently where he said I had 'taken over'. I'm not sure what alternative there is. I had a puncture on the car recently and he said he dealt with it all even though I told him numerous times what was happening and why we just had to wait for it to be fixed. I'm not sure what was most stressful - the puncture or his attitude to it.
So much of this is familiar. My Dad needed help in the middle of the night, and he had to phone me while Mum just sat in the chair next to him looking vague. Luckily I’m only five miles away and managed to get there and call an ambulance, but Mum was no help at all. Dad writhed in pain for a couple of hours, was monitored and stabilised by paramedics over an hour, then was taken away in an ambulance. Mum just sat and watched. She didn’t even try to hold his hand. After which she just went back to bed like nothing had happened. Massive panic the next day because he wasn’t there, of course, but that was all about the things she needed him to do rather than any concerns about his wellbeing.
And heaven help me, I’m finding her martyred ‘poor me’ attitude increasingly difficult to not react to. According to her, she does all the housework, shopping and cooking, while Dad does nothing. In fact she sits in a recliner all day while Dad does all of that, plus looking after her and doing the gardening, all the while fighting health problems of which she is completely unaware. He’s exhausted and won’t accept help from me or my sister, but Mum never even sees it.
I know I know it’s the dementia, but it’s so frustrating to watch my Dad being ground into the floor by it. What gobsmacks me most, is that health professionals are perfectly prepared to take Mum’s word for it. Every time she has an appointment, I try to pre-empt it by emailing them an update from the real world. At the moment, I can do no more.
And heaven help me, I’m finding her martyred ‘poor me’ attitude increasingly difficult to not react to. According to her, she does all the housework, shopping and cooking, while Dad does nothing. In fact she sits in a recliner all day while Dad does all of that, plus looking after her and doing the gardening, all the while fighting health problems of which she is completely unaware. He’s exhausted and won’t accept help from me or my sister, but Mum never even sees it.
I know I know it’s the dementia, but it’s so frustrating to watch my Dad being ground into the floor by it. What gobsmacks me most, is that health professionals are perfectly prepared to take Mum’s word for it. Every time she has an appointment, I try to pre-empt it by emailing them an update from the real world. At the moment, I can do no more.
I'm really sorry to hear about your dad. I hope his condition is improving.
Sadly ,your mum isn't capable of changing. The dementia will mean that she lives in her own world and worry about her own needs.
Your dad,unless he is in the throes of dementia ,is capable of changing and for the sake of his health he needs to.
He needs to accept outside help with your mum or find a day centre where he can get a break., Maybe get a gardener,or cleaner. He isn't being fair to himself or you by not!
I know how hard accepting help is. I've just got my oh in to day care a day a week and I hated doing it ,but I needed to. I've also got a gardener a couple of hours a fortnight to help me
Perhaps dad can be persuaded after this health scare!
Sadly I know all of this - it’s been going on for years. Dad has long-term health issues, including unexplained weight loss which a raft of doctors and consultants have been unable to diagnose. My polite suggestions that from my observation, it’s a combo of not eating enough, not eating the right food, plus stress, has been completely ignored. He’s been through all sorts of medical tests right up to CT scans and an MRI, but unbelievably, nobody has yet asked him to keep a ruddy food diary or referred him to a dietician. Pretty sure that would point to the underlying issue fairly swiftly. But since they’ve discounted the Big Box causes like a recurrence or spread of his cancer, they’ve lost interest. He’s skin and bone.
Trust me, my father will not change until some sort of crisis forces change on him. My sister and I refer to it as the brick wall going up. It’s the blank expression he gets on his face when we know we’re saying something perfectly sensible that he’ll just ignore. It's not dementia. Not unless he’s had it for the last 60 years! Waiting for the crisis isn’t doing any of us much good, but it will inevitably happen.
Sorry, just venting. This is all on top of Mum’s dementia…
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I understand what you mean. It's just when we reach a certain stage where a PWD can no longer even bring a cup to their mouth and sip without needing assistance, those little things from the past (like the example at the beginning of this thread: not making a cup of tea for someone else) seem of such little importance looking back. I think sometimes people forget that their brain is literally shutting down, and they can't help it. But once you reach a bedbound stage where they can barely even speak, lift a cup or even swallow, it reminds us of what is actually the sad truth. It's a terribly cruel disease and it was never their fault when they forgot to do things, or acted inappropriately/ungratefully.
Hi all
I’ve followed everyone’s replies with interest, understanding, acknowledgement etc and just wanted to send massive hugs to you all.
It’s a dam awful disease that affects us just as much, if not more than our loved ones. They change beyond all recognition & in my case my OH does not acknowledge he has Alzheimer’s so doesn’t know he’s changing.
I’ve had to change and adapt and it’s mentally exhausting at times. I miss so many things such as having a normal conversation with my OH, a hug, a laugh... I could go on but I know you all understand where I’m coming from.
Let’s give ourselves a big pat on the back for doing the best we can in an awful, challenging situation.
Stay strong everyone and remember we have each other.
🙌
I’ve followed everyone’s replies with interest, understanding, acknowledgement etc and just wanted to send massive hugs to you all.
It’s a dam awful disease that affects us just as much, if not more than our loved ones. They change beyond all recognition & in my case my OH does not acknowledge he has Alzheimer’s so doesn’t know he’s changing.
I’ve had to change and adapt and it’s mentally exhausting at times. I miss so many things such as having a normal conversation with my OH, a hug, a laugh... I could go on but I know you all understand where I’m coming from.
Let’s give ourselves a big pat on the back for doing the best we can in an awful, challenging situation.
Stay strong everyone and remember we have each other.
🙌
Hi everyone who have recently posted on the Forum.
My dementia journey keeps going even though my wife has died after four years of a care home suffering from vascular dementia. I empathise with everyone and understand what you are all going through. I can’t get inside individual and intimate grief as everyone has a different story and difficult situations.
But there are common features here. The forgetfulness, incontinence ( maybe), not recognising you as you after years of a normal relationship, bizarre behaviour and aggression, lack of conversation, lack of time values, neglect of basic hygiene….the list continues.
I tried to cope on my own with all of the above and found it impossible in the end. I was trying the firefight the situation which refused to go out. The last straw was my wife trying to break out of our house to live somewhere else. She hated me for my not giving in to her delusions.
At first I desperately wanted her back and nearly collected her from the home just to have on the sofa next to me once more. Many friends, Admiral Nurses, The Samaritans, Alzheimers help line and this Forum strongly advised against it and, although it was tougher than I’d ever experienced before, I managed to take their advice. Finally, after some months, Bridget settled, became content and healthier with the dedicated professional staff looking after her.
No matter how much you want to, no matter how much you love them, you can’t hold back dementia. In the end my only loving last gift I could give give her was to get her properly looked after. I didn’t feel it at the time but now I do.
I feel guilty at times, make a nuisance of myself here on the Forum, continue with the “what ifs and if only”, and beat myself up thinking I could’ve more. It’ll take a long while to accept that I couldn’t have done anymore. Once your love one refuses to recognise you as their one and only love one and looks around for “you”, then the whole relationship changes and you become just a carer without a break, a holiday, little sleep and doing stuff as you would a child but without the cuteness.
I hope you will soon find acceptance and stop doubting yourself. I can only say I hope I cope as well as you did with such love and caring when my OH reaches the later stages.
