Living well with dementia - NOT

[Silversally]

A recent article in The Guardian - realistic and touching. Quite a long read.

‘It comes for your very soul’: how Alzheimer’s undid my dazzling, creative wife in her 40s

The long read: By the time my wife got a diagnosis, her long and harrowing deterioration had already begun. By the end, I was in awe of her

www.theguardian.com

 

[Alisongs]

A recent article in The Guardian - realistic and touching. Quite a long read.

‘It comes for your very soul’: how Alzheimer’s undid my dazzling, creative wife in her 40s

The long read: By the time my wife got a diagnosis, her long and harrowing deterioration had already begun. By the end, I was in awe of her

www.theguardian.com

So sad

 

[Kevinl]

It is a long read but worth it, I've been on the site here for over 10 years, wife first with early onset then mum too with a mild cognitive impairment, luckily both of them got on together, I had my own little care home going on here. Sadly both have now passed away.
At the time it wasn't that good but I'd do it all over again if I could.
Caring is hard, being alone is too, don't even ask about moving on, still trying to do it. K

 

[sapphire turner]

A recent article in The Guardian - realistic and touching. Quite a long read.

‘It comes for your very soul’: how Alzheimer’s undid my dazzling, creative wife in her 40s

The long read: By the time my wife got a diagnosis, her long and harrowing deterioration had already begun. By the end, I was in awe of her

www.theguardian.com

Wow this is an amazing article, it articulates so much that I have so far been unable to put into words.
I too thought that physical problems would be the reason to consider the next stage - maybe a respite stay in a care home - but like this man I think I may be facing carer breakdown in the face of stubborn refusal of my support from my husband which may ultimately result in violent outbursts, and ever more damaging medication
I am now wondering if I should consider whether it would be better for him to receive the care he needs in a nice care home sooner rather than later, rather than end up as an over medicated high risk case that nobody wants to take on?
It’s a hard one to decide, especially as my husband’s family are still very much in denial about his decline.
I would be grateful for anyone’s thoughts

 

[Gosling]

As you say @Silversally a very touching and sad article. It brings the physical and emotional toll of this cruel disease to the reality of many of us here. Hard decisions and emotional rollercoaster. Thank you for posting.

 

[sapphire turner]

Just to be clear about
the medication that he is receiving from the doctors (memantine and mirtazapine) and the medication I have refused to keep giving him (anti Alzheimer’s meds like donepezil and rivastigmine)
These choices have been made because I can no longer look after him when he is aggressive and I would otherwise have to leave for my own safety- and he would not be safe here without me.
But man it makes me feel so guilty, like I am sedating him for my own convenience 🙈🙈🙈

 

[Alisongs]

It is a long read but worth it, I've been on the site here for over 10 years, wife first with early onset then mum too with a mild cognitive impairment, luckily both of them got on together, I had my own little care home going on here. Sadly both have now passed away.
At the time it wasn't that good but I'd do it all over again if I could.
Caring is hard, being alone is too, don't even ask about moving on, still trying to do it. K

♥

 

[SAP]

Wow this is an amazing article, it articulates so much that I have so far been unable to put into words.
I too thought that physical problems would be the reason to consider the next stage - maybe a respite stay in a care home - but like this man I think I may be facing carer breakdown in the face of stubborn refusal of my support from my husband which may ultimately result in violent outbursts, and ever more damaging medication
I am now wondering if I should consider whether it would be better for him to receive the care he needs in a nice care home sooner rather than later, rather than end up as an over medicated high risk case that nobody wants to take on?
It’s a hard one to decide, especially as my husband’s family are still very much in denial about his decline.
I would be grateful for anyone’s thoughts

I would say do what is best for you. If you feel you are on the brink of carer breakdown then you need to consider yourself as well as him. If you fall to pieces, who will take over. Sadly when dementia comes to its end , where ever the person is , the carers, spouses, friends and family are left reeling but have to manage to carry one. It is not a bad thing to consider residential care , it’s hard yes but not selfish or unkind. You matter just as much as he does.

 

[sapphire turner]

I would say do what is best for you. If you feel you are on the brink of carer breakdown then you need to consider yourself as well as him. If you fall to pieces, who will take over. Sadly when dementia comes to its end , where ever the person is , the carers, spouses, friends and family are left reeling but have to manage to carry one. It is not a bad thing to consider residential care , it’s hard yes but not selfish or unkind. You matter just as much as he does.

❤️❤️❤️

 

[Kristo]

Wow this is an amazing article, it articulates so much that I have so far been unable to put into words.
I too thought that physical problems would be the reason to consider the next stage - maybe a respite stay in a care home - but like this man I think I may be facing carer breakdown in the face of stubborn refusal of my support from my husband which may ultimately result in violent outbursts, and ever more damaging medication
I am now wondering if I should consider whether it would be better for him to receive the care he needs in a nice care home sooner rather than later, rather than end up as an over medicated high risk case that nobody wants to take on?
It’s a hard one to decide, especially as my husband’s family are still very much in denial about his decline.
I would be grateful for anyone’s thoughts

Send him to stay with his family for a week and see if they are still in denial at the end of it. It infuriates me when friends and family pass judgement on how we, as unpaid and untrained carers, are seen to be exaggerating, or making the wrong decisions when no-one else makes any effort at all to help or understand. Rant over! Do what is best for BOTH of you. Do not let dementia destroy two lives. My Dad is now in a care home and it was the best decision for him (and us). Might be different for others, but we were the ones living it 24/7. Good luck x

 

[sapphire turner]

Send him to stay with his family for a week and see if they are still in denial at the end of it. It infuriates me when friends and family pass judgement on how we, as unpaid and untrained carers, are seen to be exaggerating, or making the wrong decisions when no-one else makes any effort at all to help or understand. Rant over! Do what is best for BOTH of you. Do not let dementia destroy two lives. My Dad is now in a care home and it was the best decision for him (and us). Might be different for others, but we were the ones living it 24/7. Good luck x

Thank you ❤️❤️❤️

 

[Rishile]

Send him to stay with his family for a week and see if they are still in denial at the end of it. It infuriates me when friends and family pass judgement on how we, as unpaid and untrained carers, are seen to be exaggerating, or making the wrong decisions when no-one else makes any effort at all to help or understand. Rant over! Do what is best for BOTH of you. Do not let dementia destroy two lives. My Dad is now in a care home and it was the best decision for him (and us). Might be different for others, but we were the ones living it 24/7. Good luck x

I agree about friends and family passing judgement but it works the other way too. I know a lot of people thought my husband should have stayed in a Care Home but I knew it was wrong for him. Friends and family probably had the attitude of ' you have made your bed, now lie on it' but have no idea that I was right because they have all kept away. We all have to do what we believe is right for ourselves and our loved ones and, preferably, without judgement.

I have lost count of the amount of times I was given ' advice' by people who knows someone who knows someone who has dementia. Unless you live with it 24/7, you have no idea.

 

[Ioan]

I agree about friends and family passing judgement but it works the other way too. I know a lot of people thought my husband should have stayed in a Care Home but I knew it was wrong for him. Friends and family probably had the attitude of ' you have made your bed, now lie on it' but have no idea that I was right because they have all kept away. We all have to do what we believe is right for ourselves and our loved ones and, preferably, without judgement.

I have lost count of the amount of times I was given ' advice' by people who knows someone who knows someone who has dementia. Unless you live with it 24/7, you have no idea.

Agree too many people judge without having lived what we as careers go through

 

[Kristo]

I agree about friends and family passing judgement but it works the other way too. I know a lot of people thought my husband should have stayed in a Care Home but I knew it was wrong for him. Friends and family probably had the attitude of ' you have made your bed, now lie on it' but have no idea that I was right because they have all kept away. We all have to do what we believe is right for ourselves and our loved ones and, preferably, without judgement.

I have lost count of the amount of times I was given ' advice' by people who knows someone who knows someone who has dementia. Unless you live with it 24/7, you have no idea.

Totally agree, every person’s circumstances are unique and people offering advice, however well-intentioned, really don’t understand unless they have lived it, and even then their experiences may be different to others x

 

[yoy]

Just to be clear about
the medication that he is receiving from the doctors (memantine and mirtazapine) and the medication I have refused to keep giving him (anti Alzheimer’s meds like donepezil and rivastigmine)
These choices have been made because I can no longer look after him when he is aggressive and I would otherwise have to leave for my own safety- and he would not be safe here without me.
But man it makes me feel so guilty, like I am sedating him for my own convenience 🙈🙈🙈

Do not feel guilty - you are doing what is needed. You need to be safe as well as him. My mum got aggressive, I think it was born out of fear, but you could not reason with her because she had lost the ability to understand. She had to be medicated, but I would rather her be medicated and stable and happier (as far as she can be) than to suffer the demons she had in her head without the meds.

 

[sapphire turner]

Do not feel guilty - you are doing what is needed. You need to be safe as well as him. My mum got aggressive, I think it was born out of fear, but you could not reason with her because she had lost the ability to understand. She had to be medicated, but I would rather her be medicated and stable and happier (as far as she can be) than to suffer the demons she had in her head without the meds.

Thank you ❤️❤️❤️

 

[JaxG]

What a wonderful article, the author manages to put into words the tragedy of this disease - for the sufferer and their carers.

A recent article in The Guardian - realistic and touching. Quite a long read.

‘It comes for your very soul’: how Alzheimer’s undid my dazzling, creative wife in her 40s

The long read: By the time my wife got a diagnosis, her long and harrowing deterioration had already begun. By the end, I was in awe of her

www.theguardian.com

 

[JaxG]

Just to be clear about
the medication that he is receiving from the doctors (memantine and mirtazapine) and the medication I have refused to keep giving him (anti Alzheimer’s meds like donepezil and rivastigmine)
These choices have been made because I can no longer look after him when he is aggressive and I would otherwise have to leave for my own safety- and he would not be safe here without me.
But man it makes me feel so guilty, like I am sedating him for my own convenience 🙈🙈

Please don't feel guilty - you have to do what you have to do to survive. My OH was physically violent - eventually he was prescribed Risperidone and for us it was transformative. He became calmer, but also more lucid, as if the fog of anger had lifted and allowed him to think a bit more clearly.
He is now in the process of going into long term care - I reached a point where I could no longer cope with the 24 hour nature of the disease, I was physically and mentally broken. I do not feel guilty, I have given my husband everything I could, but there came a point when I could no longer give him what he needed.
Only you can make the final decision about long term care, but you deserve to consider your own needs too. There is so much propaganda about caring for someone with dementia, 'Til death us do part' and 'Living well with Dementia' as the author of this article points out. I believe it is designed to guilt us into believing we have no right to practical help, we married them and it's our job. As carers we have rights too, and there comes a time when we cannot provide what the PWD needs. It sounds like you are reaching breaking point and this might be the time for permanent care. It is only now that my husband is in care that I can reflect on the terrible toll caring for him has taken on me. Being shouted at daily, threatened, pushed and shoved, and then moving to the point where my husband needs help with every aspect of daily living, pacing through the night, sleeping all day, demanding food at 10 o'clock at night, so much stress and anxiety. Please do consider your own life too, this cruel disease destroys so much.

 

[BeeBeeDee]

People saying
1. You would never know
2. He does well doesn't he
3. He was fine really
and other such phrases. Like his daughter who sees him for 2 hours per month.
What do you say in response to those sort of things - I want to say come and live with him for a couple of days and see if you still think that.

 

[Violet Jane]

I had the denial from the relative of an elderly friend whom I supported for three years. I was effectively NOK. As a result, we fell out, which was a shame as she really seemed to care about my friend.

I suggest that you find a reason to go away (e.g. sick relative needs visiting, old friend coming to the UK, someone having a special celebration) and insist that the relative come and stay for a couple of nights. Your PWD won't be able to keep up host mode for 48 hours.