Why can't it end

[Sonya1]

Thank you, I've just been to see mum again, and realised that the cruellest part of this disease is the up and downs associated with it. Mums still not eating much and very tired but she had a few moments of real lucidity today, very fleeting but so lovely to see her back but then snatched away again.
I have a feeling we're all in for the long run x

HartleyHugs, that really resonated with me...it really is a rollercoaster isn't it. My dad was holding his head up today in his chair and spoke two clear words although the rest was garbled. But he stuck the spout for his cup up his nose. (which he would have found very funny back in the day). Yesterday he was like eeyore, hanging head and droopy and couldn't even suck on the cup. My poor Mum is finding it all so unbearable, they have had almost 70 years together. I'm so sorry about your Mum. I sometimes just don't know what to do for my Dad, except hold his hand (whilst he then tries to eat mine) and chatter inanely. Hugs to you xx

 

[Pejic]

I'm hoping to manage to keep to my resolve not to eat or drink when the time comes and in my advanced decision to refuse treatment I've included refusing permission to be cajoled, blackmailed, or bribed into eating or drinking; unfortunately you're not allowed to refuse to be offered food or drink. I think it is disgusting that I am not allowed to specify that I should be 'helped' on my way, when my wife is no longer able to care for at home.

 

[Firecatcher]

I'm hoping to manage to keep to my resolve not to eat or drink when the time comes and in my advanced decision to refuse treatment I've included refusing permission to be cajoled, blackmailed, or bribed into eating or drinking; unfortunately you're not allowed to refuse to be offered food or drink. I think it is disgusting that I am not allowed to specify that I should be 'helped' on my way, when my wife is no longer able to care for at home.

Sadly I think the resolve to stop eating and drinking diminishes as dementia progresses. I hate seeing people cajoled into having food and fluids. It might also be helpful to include being given vaccines against things that might finish you off if you contacted them and also being treated with antibiotics. I hope I haven’t inherited my Mum’s Alzheimer’s gene but suspect I will as her genes seem to have dominated in other characteristics. My biological Dad and his Mum died in their mid 40s and I now wish I had too.

 

[Pejic]

might also be helpful to include being given vaccines against things that might finish you off if you contacted them and also being treated with antibiotics

I have refused everything except painkillers and intravenous thiogamma which I suspect might help to clean the brain, but which nobody in UK (death rate from dementia 48 per 100,000 people) will let me have, whereas in Bulgaria (death rate from dementia one per 100,000 people) it is a treatment given to all suffering from peripheral neuropathy (results from nerve cells ceasing to function because of blockages in the capillaries nourishing them).

 

[HartleyHugs]

HartleyHugs, that really resonated with me...it really is a rollercoaster isn't it. My dad was holding his head up today in his chair and spoke two clear words although the rest was garbled. But he stuck the spout for his cup up his nose. (which he would have found very funny back in the day). Yesterday he was like eeyore, hanging head and droopy and couldn't even suck on the cup. My poor Mum is finding it all so unbearable, they have had almost 70 years together. I'm so sorry about your Mum. I sometimes just don't know what to do for my Dad, except hold his hand (whilst he then tries to eat mine) and chatter inanely. Hugs to you xx

The other day mum tried to eat the plate because she couldn't work out how to pick up the sandwich on the plate so I guess to her it was easier to bring the plate to her mouth. If I hadn't been living through this for the last year I would question why on earth I had to hide a giggle but at the moment I'll take them wherever I can.
Mum received a new wheelchair today, not sure what it's called but looks like a reclining chair on wheels, so they managed to take her down to the sun room today, she just looks so tiny in it as it's huge! Hopefully it will keep her up better for the time she can sit up as yesterday she was slumped so much I was worried she was going to get caught in the side of the old wheelchair!

 

[HartleyHugs]

I'm hoping to manage to keep to my resolve not to eat or drink when the time comes and in my advanced decision to refuse treatment I've included refusing permission to be cajoled, blackmailed, or bribed into eating or drinking; unfortunately you're not allowed to refuse to be offered food or drink. I think it is disgusting that I am not allowed to specify that I should be 'helped' on my way, when my wife is no longer able to care for at home.

I've been thinking about writing an advanced directive too but no idea where to start as I'm with you if I get anywhere close to how mum is I don't want anything given to me, let me catch anything that will take me quicker!

 

[Louise7]

I've been thinking about writing an advanced directive too but no idea where to start

Hi @HartleyHugs this fact sheet explains about advanced directives and also contains a template which you may find useful as a guide:

https://www.alzheimers.org.uk/get-support/legal-financial/download-free-template-advance-decision-form

 

[Pejic]

I've been thinking about writing an advanced directive too but no idea where to start

Compassion in dying www.mydecisions.org.uk are also helpful, and they suggest doing it before your LPA for Health and Welfare so that your ADR and adherence to your ADR can be specified in it.

 

[HartleyHugs]

Hi @HartleyHugs this fact sheet explains about advanced directives and also contains a template which you may find useful as a guide:

https://www.alzheimers.org.uk/get-support/legal-financial/download-free-template-advance-decision-form

Thank you for this, I'll have a good look when I get home

 

[HartleyHugs]

Compassion in dying www.mydecisions.org.uk are also helpful, and they suggest doing it before your LPA for Health and Welfare so that your ADR and adherence to your ADR can be specified in it.

Thank you, I've had a look at this website as someone else recommended it it looks helpful.

 

[Jenny11]

I have refused everything except painkillers and intravenous thiogamma which I suspect might help to clean the brain, but which nobody in UK (death rate from dementia 48 per 100,000 people) will let me have, whereas in Bulgaria (death rate from dementia one per 100,000 people) it is a treatment given to all suffering from peripheral neuropathy (results from nerve cells ceasing to function because of blockages in the capillaries nourishing them).

It's a horrible disease. I've just asked for my mother's medication to be stopped. Apart from the higher pain relief & sedatives to stop her getting distressed. I'd definitely consider letting them give you those if needed. ((((hugs)))))

 

[Firecatcher]

It's a horrible disease. I've just asked for my mother's medication to be stopped. Apart from the higher pain relief & sedatives to stop her getting distressed. I'd definitely consider letting them give you those if needed. ((((hugs)))))

I hope your Mum’s GP agrees to your request. The problem is there’s definitely a vested interest in keeping people alive regardless of their quality of life. I’m not sure if this is due to doctors fearing litigation from relatives or whether it’s purely financial. There was an article in the guardian recently about an owner of a group if dementia care homes paying themselves 21 million over the past five years. Dementia care is a fast growing business and whilst people shouldn’t make a profit from this awful illness some individuals certainly do. It wouldn’t surprise me if some GPs had shares in some homes.

 

[canary]

The problem is there’s definitely a vested interest in keeping people alive regardless of their quality of life. I’m not sure if this is due to doctors fearing litigation from relatives or whether it’s purely financial. There was an article in the guardian recently about an owner of a group if dementia care homes paying themselves 21 million over the past five years.

I doubt that there is a financial advantage in keeping people with dementia alive as there are waiting lists for most good dementia homes.
I suspect that its simply the mindset of saving peoples lives and things that can be done, should be done, as well as the fear of being sued for negligence if things arnt done. Its like resuscitation - unless there is a DNR in place doctors and paramedics are duty bound to attempt resuscitation

 

[Jenny11]

I hope your Mum’s GP agrees to your request. The problem is there’s definitely a vested interest in keeping people alive regardless of their quality of life. I’m not sure if this is due to doctors fearing litigation from relatives or whether it’s purely financial. There was an article in the guardian recently about an owner of a group if dementia care homes paying themselves 21 million over the past five years. Dementia care is a fast growing business and whilst people shouldn’t make a profit from this awful illness some individuals certainly do. It wouldn’t surprise me if some GPs had shares in some homes.

Indeed. The longer my mother is there, the more money they get. 😔 We'll see what the doctor says on Tuesday. 🤞🤞