Sleeping/staying in bed

SallyKat

Registered User
Apr 3, 2017
39
0
Hello

I’m interested in other people’s experiences of the person with mixed dementia sleeping long hours and now refusing to get up and out of bed? My Dad has a mixed dementia diagnosis and has in the last week or so decided it’s better for him if he just stays in bed. He sleeps a lot. Will take on liquid and some food but really only biscuits, cakes or chocolate. He’s using incontinence pants because too exhausted to get up to go the toilet. Does this sound familiar to anyone? Thank you
 

Weasell

Registered User
Oct 21, 2019
1,778
0


This is something I did for someone else, so it’s a bit one size fits all, but there may be something of interest for you?


Excessive sleeping in dementia.

Excessive sleeping is not unusual in dementia.

Also look out for ‘ behaviour loops’ where they go though a period of sleeping for most of the time ,to reverting to their old more active selves, then looping around to the excessive sleeping again.

One question to ask is why?

You could start looking at these to answer that? Obviously it could be many other things as well! Though in my opinion the most likely reason will be the ‘just’ the dementia.

Are they escaping pain?

You could try a couple of days on paracetamol to test this.

Are they constipated, this can sometimes manifest as tiredness?

If you are aware they have opened their bowels then write BO ( bowel open) on that day on the calendar, also make a note of anything else that might help build a pattern.

Has there been a change in medication?

Could they have a urine infection?

Perhaps this doesn’t seem very likely? but I always think, a urine
infection ( UTI) should always be your first thought , when a person with dementia exhibits any behaviour change that causes concern. You can always request the GP sends a sample to the lab to check?

Has their thyroid function changed ? Could they be anaemic ?( blood test )

Heart failure or kidney failure can cause the type of exhaustion that gives some people the desire to take to their beds.

( Breathlessness while walking might be an signpost to this condition, as well as swelling of the feet and ankles). People can live for many years with heart failure.

Have you asked the GP if they deficient in any vitamin? Vitamin D and vitamin B deserving special mentions.

One of the big problems with excessive sleeping is drinking Sufficient fluids. Other than ceaseless reminding by you, and upping moist foods ( grapes etc) one idea would be to put an Alexa in the bedroom and every time you leave a drink say ‘ Alexa please set a reminder for five minutes’ to say ‘John drink up your tea’. But ultimately you have to sit beside them and prompt every single sip.

If you buy the Echo show then extended family can use it to ‘ drop in ‘ for video call. But you need to be aware of the privacy issues this may cause, example, you don’t want people ‘dropping in’ when personal care is taking place.

Don’t feel guilty if the person with dementia springs to life when receiving ‘outside’ attention.

This is host/ hostess syndrome cutting in. They will be able to maintain this for short period of time before reverting. Please don’t think they could maintain this new persona for any extended period.

One problem for the carer is maintaining good mental health, while caring on an open ticket!

When you see someone sleeping 20 hours a day it is easy to think
‘ this can’t go on for that long! But the truth is it can go on for years,(especially in the home environment) so carving out the best possible life for yourself, and to try and prevent that ‘limbo’ feeling is a good way to go. One excellent thing to do is make sure you walk for a minimum of 30 minutes a day. Research shows that 30 minutes vigorous exercise releases the same amount of ‘feel good’ chemicals into the body as one anti depressant tablet. It might be debatable if walking counts as ‘ vigorous excecise’ but you have to start somewhere!

Personal care can be problematic.

Remember the person with dementia can have damage to the brain that prevents them processing logic, so the lectures of the need to wash, getting an infection etc, may simply cut no ice with them.

One tip would be to try the ‘ambush’ technique. this means waiting until they mobilise to use the toilet, and then walking into the bathroom at the correct moment and saying ‘ your clean nightwear is on the radiator getting warm.’ Or do you wish to wear this nightwear or that nightwear? This communicates that getting clean doesn’t mean getting up. At this point you turn on the shower, but don’t use the ‘shower’ word just say ‘quick wash won’t take a minute’. Like most solutions it won’t always work, but remember tomorrow is another day!

If that fails you could consider a product like ‘ Drench’ wipes, available on Amazon, cost lots of money, but enable to to clean the essential areas of someone in seconds rather than minutes.
There are shampoo caps, like a shower cap, that you warm up in the microwave, put on their head massage, remove then towel dry, no rinsing. I recently purchased some from Boots online, they work quite well.

Also remember your body language, less words, more smiles!

Remember the brain stores ‘feelings’ in a separate section to ‘memories’, so once the personal care is complete use lots of praise/ positivity, example, ‘ that didn’t take long’, ‘you smell so nice now’. That way they exit from the experience with that ‘feel good’ emotion in place.

Sometimes waiting for them to use the bathroom can take several hours. So if you purchase a YI camera from Amazon ( or similar product) and point it down the corridor it will send a message to your phone when the beam is broken. (When they mobilise to the toilet)This saves you ‘listening out’ which can be quite stressful.

Another good item is a day clock or Memrabel2. This can go near the bed. This means if they lose track of night or day it shows the information ‘ afternoon etc ’. Of course there will come a point where even that doesn’t work.

You should be claiming your top level Attendance allowance. When that has been approved apply for free or reduced community charge. this gives you a pot of money if you choose to buy in some help.

Don’t forget to claim carers allowance if you are entitled.

If there is any resistance to taking medication then consider purchasing a Pivotell with tipper. This way it isn’t YOU nagging again, it is the machine telling them to take their medication.

Should they have any problem swallowing the medication , then that is what petit fillous was invented for !! give them one spoon of yoghurt and then tell them the tablets are in the next spoonful. Mary Poppins would have recommended it if it had been invented.

If the person is in a normal bed, not a hospital bed with specialised mattress, then consider purchasing 2 Kylie bed mats . I mean proper branded Kylie bed mats, not lookie likee ones. Should there be accidents of any kind the Kylie will cope with any fluids.

If there is any risk of them wandering, and you have an iPhone, then consider the purchase of a £29 airtag. It is the size of a two pound coin on steroids, and may fit into a small pocket of nightwear. This enables easy tracking and you can locate their whereabouts on your phone. No contact to pay and no battery problems either.

A carelink type pendant means they have the means to summon emergency help should they fall when you are not there.

If getting them to ‘ walk a lap’ is a problem, then consider purchasing a ‘ joy for life’ cat. ( Robotic cat). If you place it in another room, then at least once a day they can be encouraged to go and stroke the cat. The cat is for your sanity, not theirs, it just saves you sounding like a disgruntled physiotherapist on a few occasions.

Don’t feel guilty they are in bed all the time. Try putting it to the test occasionally? ‘ We could go for tea at the garden centre? ‘ Would you fancy today or tomorrow? The answer will nearly always be ‘tomorrow’.

Their reality, time structure, priorities, values, wants and needs are now very different than your own. By supporting their choice to stay in bed, you are empowering them to feel safe.
 

SallyKat

Registered User
Apr 3, 2017
39
0


This is something I did for someone else, so it’s a bit one size fits all, but there may be something of interest for you?


Excessive sleeping in dementia.

Excessive sleeping is not unusual in dementia.

Also look out for ‘ behaviour loops’ where they go though a period of sleeping for most of the time ,to reverting to their old more active selves, then looping around to the excessive sleeping again.

One question to ask is why?

You could start looking at these to answer that? Obviously it could be many other things as well! Though in my opinion the most likely reason will be the ‘just’ the dementia.

Are they escaping pain?

You could try a couple of days on paracetamol to test this.

Are they constipated, this can sometimes manifest as tiredness?

If you are aware they have opened their bowels then write BO ( bowel open) on that day on the calendar, also make a note of anything else that might help build a pattern.

Has there been a change in medication?

Could they have a urine infection?

Perhaps this doesn’t seem very likely? but I always think, a urine
infection ( UTI) should always be your first thought , when a person with dementia exhibits any behaviour change that causes concern. You can always request the GP sends a sample to the lab to check?

Has their thyroid function changed ? Could they be anaemic ?( blood test )

Heart failure or kidney failure can cause the type of exhaustion that gives some people the desire to take to their beds.

( Breathlessness while walking might be an signpost to this condition, as well as swelling of the feet and ankles). People can live for many years with heart failure.

Have you asked the GP if they deficient in any vitamin? Vitamin D and vitamin B deserving special mentions.

One of the big problems with excessive sleeping is drinking Sufficient fluids. Other than ceaseless reminding by you, and upping moist foods ( grapes etc) one idea would be to put an Alexa in the bedroom and every time you leave a drink say ‘ Alexa please set a reminder for five minutes’ to say ‘John drink up your tea’. But ultimately you have to sit beside them and prompt every single sip.

If you buy the Echo show then extended family can use it to ‘ drop in ‘ for video call. But you need to be aware of the privacy issues this may cause, example, you don’t want people ‘dropping in’ when personal care is taking place.

Don’t feel guilty if the person with dementia springs to life when receiving ‘outside’ attention.

This is host/ hostess syndrome cutting in. They will be able to maintain this for short period of time before reverting. Please don’t think they could maintain this new persona for any extended period.

One problem for the carer is maintaining good mental health, while caring on an open ticket!

When you see someone sleeping 20 hours a day it is easy to think
‘ this can’t go on for that long! But the truth is it can go on for years,(especially in the home environment) so carving out the best possible life for yourself, and to try and prevent that ‘limbo’ feeling is a good way to go. One excellent thing to do is make sure you walk for a minimum of 30 minutes a day. Research shows that 30 minutes vigorous exercise releases the same amount of ‘feel good’ chemicals into the body as one anti depressant tablet. It might be debatable if walking counts as ‘ vigorous excecise’ but you have to start somewhere!

Personal care can be problematic.

Remember the person with dementia can have damage to the brain that prevents them processing logic, so the lectures of the need to wash, getting an infection etc, may simply cut no ice with them.

One tip would be to try the ‘ambush’ technique. this means waiting until they mobilise to use the toilet, and then walking into the bathroom at the correct moment and saying ‘ your clean nightwear is on the radiator getting warm.’ Or do you wish to wear this nightwear or that nightwear? This communicates that getting clean doesn’t mean getting up. At this point you turn on the shower, but don’t use the ‘shower’ word just say ‘quick wash won’t take a minute’. Like most solutions it won’t always work, but remember tomorrow is another day!

If that fails you could consider a product like ‘ Drench’ wipes, available on Amazon, cost lots of money, but enable to to clean the essential areas of someone in seconds rather than minutes.
There are shampoo caps, like a shower cap, that you warm up in the microwave, put on their head massage, remove then towel dry, no rinsing. I recently purchased some from Boots online, they work quite well.

Also remember your body language, less words, more smiles!

Remember the brain stores ‘feelings’ in a separate section to ‘memories’, so once the personal care is complete use lots of praise/ positivity, example, ‘ that didn’t take long’, ‘you smell so nice now’. That way they exit from the experience with that ‘feel good’ emotion in place.

Sometimes waiting for them to use the bathroom can take several hours. So if you purchase a YI camera from Amazon ( or similar product) and point it down the corridor it will send a message to your phone when the beam is broken. (When they mobilise to the toilet)This saves you ‘listening out’ which can be quite stressful.

Another good item is a day clock or Memrabel2. This can go near the bed. This means if they lose track of night or day it shows the information ‘ afternoon etc ’. Of course there will come a point where even that doesn’t work.

You should be claiming your top level Attendance allowance. When that has been approved apply for free or reduced community charge. this gives you a pot of money if you choose to buy in some help.

Don’t forget to claim carers allowance if you are entitled.

If there is any resistance to taking medication then consider purchasing a Pivotell with tipper. This way it isn’t YOU nagging again, it is the machine telling them to take their medication.

Should they have any problem swallowing the medication , then that is what petit fillous was invented for !! give them one spoon of yoghurt and then tell them the tablets are in the next spoonful. Mary Poppins would have recommended it if it had been invented.

If the person is in a normal bed, not a hospital bed with specialised mattress, then consider purchasing 2 Kylie bed mats . I mean proper branded Kylie bed mats, not lookie likee ones. Should there be accidents of any kind the Kylie will cope with any fluids.

If there is any risk of them wandering, and you have an iPhone, then consider the purchase of a £29 airtag. It is the size of a two pound coin on steroids, and may fit into a small pocket of nightwear. This enables easy tracking and you can locate their whereabouts on your phone. No contact to pay and no battery problems either.

A carelink type pendant means they have the means to summon emergency help should they fall when you are not there.

If getting them to ‘ walk a lap’ is a problem, then consider purchasing a ‘ joy for life’ cat. ( Robotic cat). If you place it in another room, then at least once a day they can be encouraged to go and stroke the cat. The cat is for your sanity, not theirs, it just saves you sounding like a disgruntled physiotherapist on a few occasions.

Don’t feel guilty they are in bed all the time. Try putting it to the test occasionally? ‘ We could go for tea at the garden centre? ‘ Would you fancy today or tomorrow? The answer will nearly always be ‘tomorrow’.

Their reality, time structure, priorities, values, wants and needs are now very different than your own. By supporting their choice to stay in bed, you are empowering them to feel safe.
Thank you so much! Lots of really helpful information. Really appreciate the reply
 

TessB

Registered User
Nov 14, 2023
136
0


This is something I did for someone else, so it’s a bit one size fits all, but there may be something of interest for you?


Excessive sleeping in dementia.

Excessive sleeping is not unusual in dementia.

Also look out for ‘ behaviour loops’ where they go though a period of sleeping for most of the time ,to reverting to their old more active selves, then looping around to the excessive sleeping again.

One question to ask is why?

You could start looking at these to answer that? Obviously it could be many other things as well! Though in my opinion the most likely reason will be the ‘just’ the dementia.

Are they escaping pain?

You could try a couple of days on paracetamol to test this.

Are they constipated, this can sometimes manifest as tiredness?

If you are aware they have opened their bowels then write BO ( bowel open) on that day on the calendar, also make a note of anything else that might help build a pattern.

Has there been a change in medication?

Could they have a urine infection?

Perhaps this doesn’t seem very likely? but I always think, a urine
infection ( UTI) should always be your first thought , when a person with dementia exhibits any behaviour change that causes concern. You can always request the GP sends a sample to the lab to check?

Has their thyroid function changed ? Could they be anaemic ?( blood test )

Heart failure or kidney failure can cause the type of exhaustion that gives some people the desire to take to their beds.

( Breathlessness while walking might be an signpost to this condition, as well as swelling of the feet and ankles). People can live for many years with heart failure.

Have you asked the GP if they deficient in any vitamin? Vitamin D and vitamin B deserving special mentions.

One of the big problems with excessive sleeping is drinking Sufficient fluids. Other than ceaseless reminding by you, and upping moist foods ( grapes etc) one idea would be to put an Alexa in the bedroom and every time you leave a drink say ‘ Alexa please set a reminder for five minutes’ to say ‘John drink up your tea’. But ultimately you have to sit beside them and prompt every single sip.

If you buy the Echo show then extended family can use it to ‘ drop in ‘ for video call. But you need to be aware of the privacy issues this may cause, example, you don’t want people ‘dropping in’ when personal care is taking place.

Don’t feel guilty if the person with dementia springs to life when receiving ‘outside’ attention.

This is host/ hostess syndrome cutting in. They will be able to maintain this for short period of time before reverting. Please don’t think they could maintain this new persona for any extended period.

One problem for the carer is maintaining good mental health, while caring on an open ticket!

When you see someone sleeping 20 hours a day it is easy to think
‘ this can’t go on for that long! But the truth is it can go on for years,(especially in the home environment) so carving out the best possible life for yourself, and to try and prevent that ‘limbo’ feeling is a good way to go. One excellent thing to do is make sure you walk for a minimum of 30 minutes a day. Research shows that 30 minutes vigorous exercise releases the same amount of ‘feel good’ chemicals into the body as one anti depressant tablet. It might be debatable if walking counts as ‘ vigorous excecise’ but you have to start somewhere!

Personal care can be problematic.

Remember the person with dementia can have damage to the brain that prevents them processing logic, so the lectures of the need to wash, getting an infection etc, may simply cut no ice with them.

One tip would be to try the ‘ambush’ technique. this means waiting until they mobilise to use the toilet, and then walking into the bathroom at the correct moment and saying ‘ your clean nightwear is on the radiator getting warm.’ Or do you wish to wear this nightwear or that nightwear? This communicates that getting clean doesn’t mean getting up. At this point you turn on the shower, but don’t use the ‘shower’ word just say ‘quick wash won’t take a minute’. Like most solutions it won’t always work, but remember tomorrow is another day!

If that fails you could consider a product like ‘ Drench’ wipes, available on Amazon, cost lots of money, but enable to to clean the essential areas of someone in seconds rather than minutes.
There are shampoo caps, like a shower cap, that you warm up in the microwave, put on their head massage, remove then towel dry, no rinsing. I recently purchased some from Boots online, they work quite well.

Also remember your body language, less words, more smiles!

Remember the brain stores ‘feelings’ in a separate section to ‘memories’, so once the personal care is complete use lots of praise/ positivity, example, ‘ that didn’t take long’, ‘you smell so nice now’. That way they exit from the experience with that ‘feel good’ emotion in place.

Sometimes waiting for them to use the bathroom can take several hours. So if you purchase a YI camera from Amazon ( or similar product) and point it down the corridor it will send a message to your phone when the beam is broken. (When they mobilise to the toilet)This saves you ‘listening out’ which can be quite stressful.

Another good item is a day clock or Memrabel2. This can go near the bed. This means if they lose track of night or day it shows the information ‘ afternoon etc ’. Of course there will come a point where even that doesn’t work.

You should be claiming your top level Attendance allowance. When that has been approved apply for free or reduced community charge. this gives you a pot of money if you choose to buy in some help.

Don’t forget to claim carers allowance if you are entitled.

If there is any resistance to taking medication then consider purchasing a Pivotell with tipper. This way it isn’t YOU nagging again, it is the machine telling them to take their medication.

Should they have any problem swallowing the medication , then that is what petit fillous was invented for !! give them one spoon of yoghurt and then tell them the tablets are in the next spoonful. Mary Poppins would have recommended it if it had been invented.

If the person is in a normal bed, not a hospital bed with specialised mattress, then consider purchasing 2 Kylie bed mats . I mean proper branded Kylie bed mats, not lookie likee ones. Should there be accidents of any kind the Kylie will cope with any fluids.

If there is any risk of them wandering, and you have an iPhone, then consider the purchase of a £29 airtag. It is the size of a two pound coin on steroids, and may fit into a small pocket of nightwear. This enables easy tracking and you can locate their whereabouts on your phone. No contact to pay and no battery problems either.

A carelink type pendant means they have the means to summon emergency help should they fall when you are not there.

If getting them to ‘ walk a lap’ is a problem, then consider purchasing a ‘ joy for life’ cat. ( Robotic cat). If you place it in another room, then at least once a day they can be encouraged to go and stroke the cat. The cat is for your sanity, not theirs, it just saves you sounding like a disgruntled physiotherapist on a few occasions.

Don’t feel guilty they are in bed all the time. Try putting it to the test occasionally? ‘ We could go for tea at the garden centre? ‘ Would you fancy today or tomorrow? The answer will nearly always be ‘tomorrow’.

Their reality, time structure, priorities, values, wants and needs are now very different than your own. By supporting their choice to stay in bed, you are empowering them to feel safe.
Wow, thanks for posting this information, Weasell. Really useful. My mum has taken to staying in her chair all day and night. She can now barely stand and her legs are very swollen. She sleeps a lot during the day but often wakes and calls out in the night. Mum doesn't seem to understand the need for personal care. Thinking of getting a carer in the morning to help mum as she may realise on some level that I'm her daughter and feel embarrassed. Mum has higher rate attendance allowance and we have a carer to sit with mum 2 hours, 5 afternoons a week. What is the free or reduced community charge you refer to? Mum is more likely to do what someone else asks, rather than anything I ask. I get frustrated and try to explain to mum but, if course, it doesn't help. Must remember to talk less and smile more, though that doesn't always work and mum sometimes thinks my smiling has an ulterior motive! Thanks for the advice not to feel guilty if the PWD springs to life in company. This is definitely something mum does and I have felt very guilty, thinking I must be doing something wrong.
 

sdmhred

Registered User
Jan 26, 2022
2,419
0
Surrey
I think getting a carer in for a morning wash and freshen up sounds a great idea. They will hope have some skill in jollying her along - even if they just start with a face wash in the chair and move on as she feels comfortable,

I wonder too about requesting an OT assessment if her mobility is limited, I would be concerned about pressure sores if she’s not mobilising at all. they can be awful once set in so a carer could help monitor and an OT would be able to provide or refer for necessary pressure cushions too.

If it’s easier for a carer to do it - step back and focus on doing something positive with her.
 

Weasell

Registered User
Oct 21, 2019
1,778
0
Wow, thanks for posting this information, Weasell. Really useful. My mum has taken to staying in her chair all day and night. She can now barely stand and her legs are very swollen. She sleeps a lot during the day but often wakes and calls out in the night. Mum doesn't seem to understand the need for personal care. Thinking of getting a carer in the morning to help mum as she may realise on some level that I'm her daughter and feel embarrassed. Mum has higher rate attendance allowance and we have a carer to sit with mum 2 hours, 5 afternoons a week. What is the free or reduced community charge you refer to? Mum is more likely to do what someone else asks, rather than anything I ask. I get frustrated and try to explain to mum but, if course, it doesn't help. Must remember to talk less and smile more, though that doesn't always work and mum sometimes thinks my smiling has an ulterior motive! Thanks for the advice not to feel guilty if the PWD springs to life in company. This is definitely something mum does and I have felt very guilty, thinking I must be doing something wrong.
Hi @TessB
If you go onto your local authority web site you will find a form like this.

Council tax - severe mental impairment​

People are disregarded for council tax if they are severely mentally impaired and are stated to be such in a certificate from a registered medical practitioner.
If you would like to apply for this discount please complete the severe mental impairment discount form

Fill in the form.
Print the form.
Take the form to the GP and they will sign it.
I actually took mum’s diagnosis letter from the memory clinic with me and the free council tax was updated from that day.
Take the attendance allowance letter too.

The doctor did talk about mum’s dementia, which was difficult, as I never told mum she had dementia as it would make her so sad.
But given the huge amount of money at stake needs must.
I did a bit of re assuring on the way out. ‘Yes you do have dementia but it isn’t the bad kind’! And by the next day she had forgotten she ever went to the doctors.
You have to receive the attendance allowance to qualify ( so you are fine). I think it is possible you have to receive the attendance allowance for six months before you get the free ( if she lives on her own) council tax. But I just can’t remember that detail. So may be making it up.
Read the small print on the web site and if it didn’t mention it apply anyway.
 

TessB

Registered User
Nov 14, 2023
136
0
Hi @TessB
If you go onto your local authority web site you will find a form like this.

Council tax - severe mental impairment​

People are disregarded for council tax if they are severely mentally impaired and are stated to be such in a certificate from a registered medical practitioner.
If you would like to apply for this discount please complete the severe mental impairment discount form

Fill in the form.
Print the form.
Take the form to the GP and they will sign it.
I actually took mum’s diagnosis letter from the memory clinic with me and the free council tax was updated from that day.
Take the attendance allowance letter too.

The doctor did talk about mum’s dementia, which was difficult, as I never told mum she had dementia as it would make her so sad.
But given the huge amount of money at stake needs must.
I did a bit of re assuring on the way out. ‘Yes you do have dementia but it isn’t the bad kind’! And by the next day she had forgotten she ever went to the doctors.
You have to receive the attendance allowance to qualify ( so you are fine). I think it is possible you have to receive the attendance allowance for six months before you get the free ( if she lives on her own) council tax. But I just can’t remember that detail. So may be making it up.
Read the small print on the web site and if it didn’t mention it apply anyway.
Ah, thanks, Weasell. Yes, we have already applied for that.
 

TessB

Registered User
Nov 14, 2023
136
0
I think getting a carer in for a morning wash and freshen up sounds a great idea. They will hope have some skill in jollying her along - even if they just start with a face wash in the chair and move on as she feels comfortable,

I wonder too about requesting an OT assessment if her mobility is limited, I would be concerned about pressure sores if she’s not mobilising at all. they can be awful once set in so a carer could help monitor and an OT would be able to provide or refer for necessary pressure cushions too.

If it’s easier for a carer to do it - step back and focus on doing something positive with her.
GP has now diagnosed mum with a level of heart failure and prescribed water tablets and antibiotics for possible infection. Mum is in the chair all day and night but an OT came out yesterday and a riser recliner chair with built in pressure relief has been supplied via Medequip, also a Sara Steady to help mum stand and make it easier for carers to wash her and change her pad. Carer is coming in twice a day which, I must say, is a relief as I think mum feels more comfortable having someone else doing her personal care and I do too. Physio has visited and given mum some exercises to do but mum has to be encouraged to do them. 🤞
 

Bubblesandsqueaks

New member
Oct 26, 2022
9
0


This is something I did for someone else, so it’s a bit one size fits all, but there may be something of interest for you?


Excessive sleeping in dementia.

Excessive sleeping is not unusual in dementia.

Also look out for ‘ behaviour loops’ where they go though a period of sleeping for most of the time ,to reverting to their old more active selves, then looping around to the excessive sleeping again.

One question to ask is why?

You could start looking at these to answer that? Obviously it could be many other things as well! Though in my opinion the most likely reason will be the ‘just’ the dementia.

Are they escaping pain?

You could try a couple of days on paracetamol to test this.

Are they constipated, this can sometimes manifest as tiredness?

If you are aware they have opened their bowels then write BO ( bowel open) on that day on the calendar, also make a note of anything else that might help build a pattern.

Has there been a change in medication?

Could they have a urine infection?

Perhaps this doesn’t seem very likely? but I always think, a urine
infection ( UTI) should always be your first thought , when a person with dementia exhibits any behaviour change that causes concern. You can always request the GP sends a sample to the lab to check?

Has their thyroid function changed ? Could they be anaemic ?( blood test )

Heart failure or kidney failure can cause the type of exhaustion that gives some people the desire to take to their beds.

( Breathlessness while walking might be an signpost to this condition, as well as swelling of the feet and ankles). People can live for many years with heart failure.

Have you asked the GP if they deficient in any vitamin? Vitamin D and vitamin B deserving special mentions.

One of the big problems with excessive sleeping is drinking Sufficient fluids. Other than ceaseless reminding by you, and upping moist foods ( grapes etc) one idea would be to put an Alexa in the bedroom and every time you leave a drink say ‘ Alexa please set a reminder for five minutes’ to say ‘John drink up your tea’. But ultimately you have to sit beside them and prompt every single sip.

If you buy the Echo show then extended family can use it to ‘ drop in ‘ for video call. But you need to be aware of the privacy issues this may cause, example, you don’t want people ‘dropping in’ when personal care is taking place.

Don’t feel guilty if the person with dementia springs to life when receiving ‘outside’ attention.

This is host/ hostess syndrome cutting in. They will be able to maintain this for short period of time before reverting. Please don’t think they could maintain this new persona for any extended period.

One problem for the carer is maintaining good mental health, while caring on an open ticket!

When you see someone sleeping 20 hours a day it is easy to think
‘ this can’t go on for that long! But the truth is it can go on for years,(especially in the home environment) so carving out the best possible life for yourself, and to try and prevent that ‘limbo’ feeling is a good way to go. One excellent thing to do is make sure you walk for a minimum of 30 minutes a day. Research shows that 30 minutes vigorous exercise releases the same amount of ‘feel good’ chemicals into the body as one anti depressant tablet. It might be debatable if walking counts as ‘ vigorous excecise’ but you have to start somewhere!

Personal care can be problematic.

Remember the person with dementia can have damage to the brain that prevents them processing logic, so the lectures of the need to wash, getting an infection etc, may simply cut no ice with them.

One tip would be to try the ‘ambush’ technique. this means waiting until they mobilise to use the toilet, and then walking into the bathroom at the correct moment and saying ‘ your clean nightwear is on the radiator getting warm.’ Or do you wish to wear this nightwear or that nightwear? This communicates that getting clean doesn’t mean getting up. At this point you turn on the shower, but don’t use the ‘shower’ word just say ‘quick wash won’t take a minute’. Like most solutions it won’t always work, but remember tomorrow is another day!

If that fails you could consider a product like ‘ Drench’ wipes, available on Amazon, cost lots of money, but enable to to clean the essential areas of someone in seconds rather than minutes.
There are shampoo caps, like a shower cap, that you warm up in the microwave, put on their head massage, remove then towel dry, no rinsing. I recently purchased some from Boots online, they work quite well.

Also remember your body language, less words, more smiles!

Remember the brain stores ‘feelings’ in a separate section to ‘memories’, so once the personal care is complete use lots of praise/ positivity, example, ‘ that didn’t take long’, ‘you smell so nice now’. That way they exit from the experience with that ‘feel good’ emotion in place.

Sometimes waiting for them to use the bathroom can take several hours. So if you purchase a YI camera from Amazon ( or similar product) and point it down the corridor it will send a message to your phone when the beam is broken. (When they mobilise to the toilet)This saves you ‘listening out’ which can be quite stressful.

Another good item is a day clock or Memrabel2. This can go near the bed. This means if they lose track of night or day it shows the information ‘ afternoon etc ’. Of course there will come a point where even that doesn’t work.

You should be claiming your top level Attendance allowance. When that has been approved apply for free or reduced community charge. this gives you a pot of money if you choose to buy in some help.

Don’t forget to claim carers allowance if you are entitled.

If there is any resistance to taking medication then consider purchasing a Pivotell with tipper. This way it isn’t YOU nagging again, it is the machine telling them to take their medication.

Should they have any problem swallowing the medication , then that is what petit fillous was invented for !! give them one spoon of yoghurt and then tell them the tablets are in the next spoonful. Mary Poppins would have recommended it if it had been invented.

If the person is in a normal bed, not a hospital bed with specialised mattress, then consider purchasing 2 Kylie bed mats . I mean proper branded Kylie bed mats, not lookie likee ones. Should there be accidents of any kind the Kylie will cope with any fluids.

If there is any risk of them wandering, and you have an iPhone, then consider the purchase of a £29 airtag. It is the size of a two pound coin on steroids, and may fit into a small pocket of nightwear. This enables easy tracking and you can locate their whereabouts on your phone. No contact to pay and no battery problems either.

A carelink type pendant means they have the means to summon emergency help should they fall when you are not there.

If getting them to ‘ walk a lap’ is a problem, then consider purchasing a ‘ joy for life’ cat. ( Robotic cat). If you place it in another room, then at least once a day they can be encouraged to go and stroke the cat. The cat is for your sanity, not theirs, it just saves you sounding like a disgruntled physiotherapist on a few occasions.

Don’t feel guilty they are in bed all the time. Try putting it to the test occasionally? ‘ We could go for tea at the garden centre? ‘ Would you fancy today or tomorrow? The answer will nearly always be ‘tomorrow’.

Their reality, time structure, priorities, values, wants and needs are now very different than your own. By supporting their choice to stay in bed, you are empowering them to feel safe.
So useful, thank you.
 

Mumbles2

New member
Oct 11, 2023
3
0
I could do with some advice, my husband has not slept in a bed for the past approx 6 years, sleeps in armchair day and night...this started at home, he has been in dementia care home for the past 2 years and 9 months never slept in bed, his legs are very swoolen, refuses most foods also medication, will not take part in activites (most of time ) will not go into garden...seems very tired most of time, conversation becoming shorter and shorter....any advice please?