Is this the end?

[Give me sunshine]

Hi everyone

My lovely dad started living in the dementia unit of a nursing home six weeks ago. When he joined he was incredibly mobile and happily got involved with activities, was quite sociable, had a good appetite, seemed content (despite being aggressively resistant to personal care). Slowly slowly he started sleeping more and eating less and in the past fortnight has declined very rapidly. He sleeps for most of the day, is refusing food and drink, is confused and jumpy and is absolutely vicious with the carers when they try and help. He's in a bad way.

Yesterday the unit lead talked to me about it and what they are doing ie offering food/drink as much as possible but not forcing. She explained that this is a common thing to happen in the late stages of dementia and there's not loads they can do. I just wondered what else I should be asking them? I'm concerned about my dad's comfort levels and also about the state of his mouth, which is very very dry indeed. Also what happens next? Do we just wait and watch him die? Seems so brutal, undignified and sudden. I just want to him to be as comfortable and calm as possible.

If anyone has any suggestions, I be very grateful. But most of all it's just good to be able to off-load here, so thank you for reading.

 

[Grannie G]

Hello @Give me sunshine

I think the care home staff are correct in what they are saying but I would ask they keep his mouth moisturised. This can be done by a feeding cup offered regularly and sponged moisture applied to his mouth .

This is from the Alzheimers Society fact sheet

Care professionals should provide regular mouth care, keeping it moist and clean. They may provide sips of iced water or juice, or gently rub an ice cube on the person’s lips, if they can still swallow. They may also apply a balm to keep the person’s lips from becoming cracked and uncomfortable. This might be something you’d like to help with


All you can do is try to make sure your dad is kept pain free and comfortable. I would even go so far as to ask if calming medication could be prescribed. I would prefer that for someone of mine to them being jumpy and anxious.

 

[HLA]

Hello,
I just wanted to say I really feel for you, that must be so hard, especially with a quick change like that.
My mother has been in a care home for a short while now, and feels like she is slipping away, so I can empathise.
I don't have any practical tips from a point of knowledge, however do you think he has enough of the right stimulation and one on one attention? Does he respond well to any of the carers at all? Can you work with the care home to put in place some personalised care? And, how is your father when you visit, does he perk up? Can you take him out of the home/into a garden at all?

I remember from my Grandmother, that pineapple juice can be helpful for a dry and sticky mouth, even swiping around, if not a small sip. This is because of the enzymes in the pineapple.

A quick check on the NHS website looks at compassionate care, which might be helpful. NHS/conditions/end-of-life-care/what-to-expect-from-care/

My heart goes out to you,


H

 

[Izzy]

It’s heartbreaking @Give me sunshine. Such a hard time for you all.

I wondered if this link would be of any help -

End of life care for a person with dementia

While it may be upsetting to think about, having important conversations with the person with dementia, and planning ahead, can mean they have a better experience at the end of their life.

www.alzheimers.org.uk

Thinking of you, wishing you strenghth and your dad peace.

 

[Roman223]

Hi everyone

My lovely dad started living in the dementia unit of a nursing home six weeks ago. When he joined he was incredibly mobile and happily got involved with activities, was quite sociable, had a good appetite, seemed content (despite being aggressively resistant to personal care). Slowly slowly he started sleeping more and eating less and in the past fortnight has declined very rapidly. He sleeps for most of the day, is refusing food and drink, is confused and jumpy and is absolutely vicious with the carers when they try and help. He's in a bad way.

Yesterday the unit lead talked to me about it and what they are doing ie offering food/drink as much as possible but not forcing. She explained that this is a common thing to happen in the late stages of dementia and there's not loads they can do. I just wondered what else I should be asking them? I'm concerned about my dad's comfort levels and also about the state of his mouth, which is very very dry indeed. Also what happens next? Do we just wait and watch him die? Seems so brutal, undignified and sudden. I just want to him to be as comfortable and calm as possible.

If anyone has any suggestions, I be very grateful. But most of all it's just good to be able to off-load here, so thank you for reading.

Give me sunshine: Hello. This is what happened with my mum weeks before she passed away last week! I am so sorry to hear about your dad and your circumstances. If it were me, I would ring the NH & advise them to have a GP out to visit your dad & possibly prescribe pain relief meds & special syringes to keep his mouth moisturised since he has deteriorated and you are worried about him. May put your mind to rest. X

 

[Give me sunshine]

Hello @Give me sunshine

I think the care home staff are correct in what they are saying but I would ask they keep his mouth moisturised. This can be done by a feeding cup offered regularly and sponged moisture applied to his mouth .

This is from the Alzheimers Society fact sheet

Care professionals should provide regular mouth care, keeping it moist and clean. They may provide sips of iced water or juice, or gently rub an ice cube on the person’s lips, if they can still swallow. They may also apply a balm to keep the person’s lips from becoming cracked and uncomfortable. This might be something you’d like to help with


All you can do is try to make sure your dad is kept pain free and comfortable. I would even go so far as to ask if calming medication could be prescribed. I would prefer that for someone of mine to them being jumpy and anxious.

Thank you so much for your response, very helpful suggestions and reassuring words. Much appreciated.

 

[Give me sunshine]

It’s heartbreaking @Give me sunshine. Such a hard time for you all.

I wondered if this link would be of any help -

End of life care for a person with dementia

While it may be upsetting to think about, having important conversations with the person with dementia, and planning ahead, can mean they have a better experience at the end of their life.

www.alzheimers.org.uk

Thinking of you, wishing you strenghth and your dad peace.

Thank you so much for this link and for your kind, supportive words.

 

[Give me sunshine]

Give me sunshine: Hello. This is what happened with my mum weeks before she passed away last week! I am so sorry to hear about your dad and your circumstances. If it were me, I would ring the NH & advise them to have a GP out to visit your dad & possibly prescribe pain relief meds & special syringes to keep his mouth moisturised since he has deteriorated and you are worried about him. May put your mind to rest. X

I'm so so sorry to hear about your mum - my condolences to you. The GP is visiting my dad today so we'll see what happens after that. Hopefully he'll have some good suggestions. Thank you for taking the time to respond and for the very helpful suggestions. Take care x

 

[Give me sunshine]

Hello,
I just wanted to say I really feel for you, that must be so hard, especially with a quick change like that.
My mother has been in a care home for a short while now, and feels like she is slipping away, so I can empathise.
I don't have any practical tips from a point of knowledge, however do you think he has enough of the right stimulation and one on one attention? Does he respond well to any of the carers at all? Can you work with the care home to put in place some personalised care? And, how is your father when you visit, does he perk up? Can you take him out of the home/into a garden at all?

I remember from my Grandmother, that pineapple juice can be helpful for a dry and sticky mouth, even swiping around, if not a small sip. This is because of the enzymes in the pineapple.

A quick check on the NHS website looks at compassionate care, which might be helpful. NHS/conditions/end-of-life-care/what-to-expect-from-care/

My heart goes out to you,


H

Thank you so much for your most thoughtful and helpful reply. The support on this forum is phenomenal!

As for your question about the right stimulation, up until two weeks ago he was quite engaged with things happening at the home - he'd take part in activities, would sit in the lounge with the other residents, would engage well with the nurses and carers and whenever I visited I'd take him to the garden or nearby park. In fact only10 days ago I managed to take him to the park for a walk and to see my daughter, who he adores. But now he won't leave his room. He's either in his bed or in his chair and is just so angry, paranoid and confused - and is pretty indifferent when I turn up, to be honest. One of the lovely carers came to put a cushion behind his back yesterday so he could try and eat his lunch more easily and I could see the rage bubbling at the surface while she was doing this. I suspect a psychiatrist referral could on the cards, depending on what happens over the next few days. Horrible situation.

Thanks again for your support and kind words. Much appreciated

 

[HLA]

Thank you so much for your most thoughtful and helpful reply. The support on this forum is phenomenal!

As for your question about the right stimulation, up until two weeks ago he was quite engaged with things happening at the home - he'd take part in activities, would sit in the lounge with the other residents, would engage well with the nurses and carers and whenever I visited I'd take him to the garden or nearby park. In fact only10 days ago I managed to take him to the park for a walk and to see my daughter, who he adores. But now he won't leave his room. He's either in his bed or in his chair and is just so angry, paranoid and confused - and is pretty indifferent when I turn up, to be honest. One of the lovely carers came to put a cushion behind his back yesterday so he could try and eat his lunch more easily and I could see the rage bubbling at the surface while she was doing this. I suspect a psychiatrist referral could on the cards, depending on what happens over the next few days. Horrible situation.

Thanks again for your support and kind words. Much appreciated

Hello, I hope things have managed to settle somehow, with or without help from the psychiatrist.
After my intended-to-be-useful comment about stimulation - something I struggle to make sure is happening for my mother in the care home - I too am finding mum just is pretty angry, and certainly doesn't want to see me.
It's so hard to see isn't it...

 

[Give me sunshine]

Hello, I hope things have managed to settle somehow, with or without help from the psychiatrist.
After my intended-to-be-useful comment about stimulation - something I struggle to make sure is happening for my mother in the care home - I too am finding mum just is pretty angry, and certainly doesn't want to see me.
It's so hard to see isn't it..

Hello, I hope things have managed to settle somehow, with or without help from the psychiatrist.
After my intended-to-be-useful comment about stimulation - something I struggle to make sure is happening for my mother in the care home - I too am finding mum just is pretty angry, and certainly doesn't want to see me.
It's so hard to see isn't it...

Thank you for this. It was a very useful comment about stimulation and I was grateful for it - thank you. But yes, it's hard. So sorry about your mum too.

Sadly things are pretty bad with my dad. He's more calm but that's because he's mainly asleep and is totally disengaged from things now. He occasionally wakes up to have a mouthful of food or a sip of water but we otherwise can't really engage with him anymore. The speed of his decline has been absolutely shocking, even the care home staff are shocked.

Anyway, stay strong and take care. I hope things calm for your mum soon and that she's happy to see you again. I'm sure deep down that she is