Stage 7 - am I doing the right things?

Amanda Frussell

New member
Mar 30, 2023
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0
My mum has declined rapidly over the past few weeks, she is definitely in stage 7, sleeping permanently unless we wake her for a drink or to shower her.
Do I let her sleep? Do I let the GP and Adult Social Services know the progression?
 

SAP

Registered User
Feb 18, 2017
1,345
0
You can call the helpline for advice about this

Or the following link is for the Admiral Nurses help line. They are specialist dementia nurses and will be able to offer you advice and let you know what to look for.
Are you caring for your mum on your own? Do you get any support. If not, it may be time to ask for some support or at least ask social services for an assessment of your mums needs .
 

Neveradullday!

Registered User
Oct 12, 2022
3,371
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England
I think your questions are excellent, @Amanda Frussell, I'd be interested in the replies you get for future reference for myself.

If nobody else answers on here, would you let us all know what info you get from the above helplines.
Thanks.
 
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northumbrian_k

Volunteer Host
Mar 2, 2017
4,500
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Newcastle
Hi @Amanda Frussell and welcome to Dementia Talking Point our supportive and friendly community. I don't really have an answer to your questions. I am not sure what stage my wife has reached but when I visit her she is as likely to be asleep as awake. The care home staff seem to have the knack of waking her in order to keep her fed and hydrated. Beyond that I don't see much point in waking her.

As for informing the GP and Social Services, my guess is that they wouldn't show much interest.
 

canary

Registered User
Feb 25, 2014
25,081
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South coast
It is difficult to know on a forum whether this is the "new normal" for your mum and its just the progression of the dementia, or whether there is something else going on. If you are concerned that she might be ill, then it might be a good idea to contact the GP to check her over.

I think at this stage, if you do not have carers in to help you with your mums personal care, then this would be helpful. You could also use them as a sounding board for your concerns so that you can decide whether to call the GP, or whatever. SS only need to know if your mum has progressed so that you need help meeting her needs - if she needs additional carers etc.
 

Weasell

Registered User
Oct 21, 2019
1,778
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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.
 
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Neveradullday!

Registered User
Oct 12, 2022
3,371
0
England
That's an incredibly detailed and helpful post, @Weasell - thank you.
It must have given you typer's cramp, especially if done on a smartphone.

Thanks, also, to our other friends who responded.