Troubleshooting Sleep Discomfort

[ManjiB]

Greetings friends, it is I.

Namaste|

I am here to ask you to help me troubleshoot a problem I am trying to solve. I am confident, between us we will have a solution in the not-too-distant future, so here goes

In case you prefer to read short posts, a summary version of the below post can be read here.

Some of you will know by noe that I am a carer for my elderly mother, in her mid-nineties and doing very nicely, thank you

She has survived a severe stroke and lived to tell the tale, except she can’t literally tell the tale as she has been robbed of verbalisation through aphasia and whatever else a severe stroke does to an octogenarian. As her carers we are forever having to work out what might be ailing her when she starts asking for help which she does by making sounds which get louder and louder and louder the longer she is not attended to That’s great as it means she usually gets the help and we eventually through experience and process of elimination work out what is bothering her and then make her comfortable accordingly

Get to the point, I hear you say !

I am here to ask you if you have experienced problems sleeping in bed. I highlight in bed because in the main, she will happily snooze/sleep in a riser/recliner chair and also in her wheel chair, but when she is put to bed for the night, that’s when the troubles start

It’s not that straightforward though. Normally, once put to bed, she will be OK for an hour or two or maybe even three, but then she will start calling

This is a recent phenomenon (she is in her sixth year of life after stroke), possible last couple of weeks but certainly no more than a month. I noe lose track of time as it is almost standing still with the deja vu life that we now live.

We have been very good at sorting the issues, but this one has got us licked and so I am hoping to fast-track it by asking you to help me understhand what might be causing the discomfort so I can do something about out. Here are a few more things that might help.

• Problem only in bed and usually after two or three hours
• She does seem to look at her non-paralysed hand as if suggesting the discomfort is in the hand
• It takes a long time, an hour or more to then make her comfortable again

I/we (I have a sister who helps me look after Mum) think that she may be experiencing some sort of blood circulation issues as in a “dead arm” caused by her body weight. Also, hand/arm sometimes feel really cold - circulation again?

The second thing that might be the cause is the Restless Leg Syndrome (RLS) as her paralysed leg has got some mobility back and so she might be trying to move the leg (or legs) and this may be causing unpleasant sensations and tingling (which may also be happening in the arm/hand Not sure if there is such as thing as Restless Arm Syndrome?

Anyway, I may have shot myself in the foot here in terms of getting some help as I have rambled on for far too long and people will have lost interest

No matter, all I need is one person to say, “Yup, I’ve been there and here’s what you do to address the problem …”

Thank you in anticipation.

Namaste|

[Bagrat]

@ManjiB au contraire, the more info the better and I shall ask even more.
Does your dear Mother sleep on her back or is she moved from side to side as well.
When I was a bedside nurse on the wards over 25 years ago, it was apparent most people have a favourite position and they settled best in that way but we insisted people were moved regularly for many reasons.
Consider what is different when in the recliner, how limbs are supported, background noise,tv, music, lighting.
You say this is a new phenomenon. Did something different occur around that time?
Thinking of something that caused her anxiety around then. What were nights like before, it sounds like, both you and your sister will get very tired if this isn’t changed or managed.
Does she understand your reassurances, sorry to be so forensic. Once settled is there a longer period of sleep for you all?
I hesitate to suggest but is this now a waking habit as well as discomfort, not deliberate, but the body has learnt a new routine. None of this helps in the slightest.
When first in bed is she settled in the same position each night to sleep?
I’m tentatively thinking of a change of bedtime routine but quite understand that could throw her completely.
I’m just rambling. One would hope that it could stop as it started, for no specific reason.
This must be exhausting .

[pando]

Hey Manji

Straight away I would ground her (electrically) at night (wristband to her ankle). If you need a primer read “Earthing” by Clint Ober, Sinatra and Zucker. This will also protect her (umbrella effect) against unwanted EMF field from wires in wall, etc. This will also solve the arthritis / inflammation in hand and RLS (yes, I have gone through this… Mg will help) by normalizing her muscle tone (correct electrolytes too, as in coconut water). Grounding will certainly increase her circulation.

Grounding Mat Results Based on Science! | Shopping on Amazon 2024

You could align the bed according to the Earth’s magnetic field. This is far less crucial a step, though. Sleeping on her side ? Try 45 deg angle which is the most popular with stroke survivors. Vitamin D is very important. But this is not an easy process to get right (since D is synthetic, unless you have a UVB panel like me); you need to know about Mg, K2, boron, and a couple of co-factors.

I have a list of therapies here:

My List of Therapies (this list is a work in progress) - Stroke Improvement...

Scrolling through the therapies… try some raw honey, and wheatgrass juice in the morning (you should grow your own, and can sweeten with apple juice). Peppermint oil can relax muscles. Green Tea in the morning. Getting outside for fresh air. Tart cherry juice for sleep. I think I’ve suggested enough remedies to reanimate Frankenstein. I’m sure you know most or all of these, but do follow up if you’d like any more specific pointers.

Good luck, & best wishes to your dear mother,
Ciao, Roland

[Mrs5K]

@ManjiB not stroke related but for many years i had loads of trouble sleeping. I think after a while it became more of a habit than anything else so i had to try & break thar habit.

A bedtime routine is very important and it sounds like you have that. I wonder if you could try pushing her bedtime back a little bit? Also, could you and your sister take it in turns to sort hee in the night so that atvleast one of you is getting enough rest. It’s probably not that simple but might be worth a try.

Not that i am experienced in it (as I never had any children) but they often tell you to ignore a child crying in the night as they get used to the attention and then will cry because they think they’re going to get some attention. I’m not suggesting your mum is attention seeking but maybe she would lie a bit quieter if she was left a bit longer.

In relation to pain /unpleasant sensations happening. It is very possible that this is the case. I had a situation a couple of weeks back where I got woken in the night by, what I can oy describe as like an electrical shock type of pain in my toes & they were twitching on their own. It was quite painful but thankfully only lasted 5 - 10 mins. If yiur mym is getting thar I can understand her being unsettled.

In relation to breaking the not sleeping habit believe it or not it only got better after I had my stroke. I have had very little trouble sleeping since apart from a very few occasions.

All of that has probably not helped in the slightest but thought I would share my experience.

Hope you find some solutions soon.

Best wishes

Ann

[Bagrat]

@pando I nearly mentioned Magnesium, I take Magnesium Taurate for heart issues but have been advised to take them at least 2 hours apart from anticoagulant apixaban,

[pando]

@Bagrat

anticoagulant apixaban,

this is exactly what grounding is for ; prevention of rouleaux effect (clumping of blood) by increasing the zeta potential ( Zeta potential is a measure of the electrical potential between particles in a suspension. It’s also known as electrokinetic potential. )
R

[Bagrat]

Can you recommend some easy reading on the subject. FInd I can’t concentrate for long.
Did look at it a while back, pre stroke , but mea culpa never did anything about it.

[pando]

Hello Bagrat,

Are you asking me for a recommendation for reading up on grounding?
“Earthing” by Ober, Sinatra & Zucker

I was also thinking of writing a simple introduction … a “Grounding 101” primer. Mainly for my book, but I could copy it to a few sites, including here (SA). There doesn’t seem to be a following here, but worldwide (pun intended), it’s huge !!

R

[Bagrat]

@pando, thank you, yes I was, wasn’t very clear was I?
Wendy

[pando]

Perfectly clear at your end, Wendy !
ciao, Roland

[ManjiB]

This is to say thank you to Wendy, Roland and Ann (@Bagrat , @pando and @Mrs5K ) for coming back so quickly with suggestions.

I am pleased to say we had pretty much thought of and tried all the things you suggest apart from Roland’s suggestions which I would never have thought of

The biggest challenge is having to interpret her communications without having spoken words to help us.

Roland - your ideas are great in principle, but I am not I can implement most if any of them. Mum is nil-by-mouth and gets all her dietary and ad-hoc meds via a PEG and we are very careful not to give her anything other than absolute essentials via the PEG as it is prone to get blocked and it is a nightmare trying to unblock it. You may have seen from my previous posts the horrendous history of the PEG which is now a “buried bumper” and which the specialist consultant has refused to replace on the grounds it requires an operation under sedation, and it is too risky.

The earth mat is an option, but Mum is double incontinent (as a result of the stroke) and I am worried in case there is a leakage and she might get electrocuted - might sound crazy to you, but it is a real fear and challenge for us to keep Mum safe. As well as being nil-by-mouth and double incontinent, her mobility level is low and she requires double-up carers to help her. She has to be hoisted out of bed into the riser recliner and the wheelchair.

Wendy - Mum is an absolute darling and she definitely understands our reassurances, but sometimes the pain she feels is more overpowering and she has to do what she has to do to relieve it. She hates being a burden on us (she always said when she was well that she would not want to be a burden on us and she was always helping us).

We were told as part of the discharge summary care plan that she should be turned every two hours. We try to make her comfortable when we put her to bed, by making sure her limbs are not trapped under her body weight, the legs/feet are supported by pillows etc. etc.
We turn her when she becomes uncomfortable and found she prefers to be on her sides in the main. Occasionally we do put her on her back just so that different muscle groups are in use etc. Over time her needs change and we adapt her support accordingly, so whereas in the early days she was happy on her back these days we know she isn’t.

She is cared for in a “text book” style doing things that experts tell us we should do and then based on our own experiences we adapt these to suit her. So now the 2 hour turns are not so hard and fast.

In trying to understand why she is happy in the chairs and not the bed we still don’t have a answer other than chairs - seated, bed - lying and so maybe this is the problem. Maybe when she is lying, her upper arm which is now weaker do to lack of use becomes uncomfortable under the body weight?

Ann - yes, we do wonder if there is an element of attention seeking as it kind of fits that pattern, but as mentioned earlier, she never wanted to and we think she still doesn’t want to be a burden on us. Mum is too clever and ignoring her is not an option. By that I mean, she is saying, “You know I don’t want to be a burden on you, and I only ask for help when I really need it, so please help me!”. She starts gentle calling, waits patiently for a response. If no response is forthcoming, the volume level starts to increase. Because she genuinely needs help, she will NOT stop until she gets it. I know from experience when I have been spark out at night I have heard it in the subconscious, and it has become intolerable so I have had to get up to address the need. On occasions, the off-duty carer has even had to intervene

There is much more I can say, but I have probably already said it elsewhere so for now, thank you to all who came up with suggestions.

If it’s any consolation, last night I just put her to bed and went to bed myself. For five whole hours she just slept through So maybe it’s the case we should only help when SHE asks rather than when the care plan says e.g. turn her every 2 hours or change her pad every 4 hours or whatever.

Let’s see how we get on.

Namaste|

[ManjiB]

Roland - as you seem knowledgeable on things of this nature, I wonder if I can run something by you? In our attempts to make Mum’s life as comfortable and normal as possible we try all sorts of things. With her limited mobility and other constraints this can be quite challenging.

One area we are keen on improving is the physical activity and blood circulation. To that end I have tried a “walker” machine which is like a running machine in the gym. We place her feed on it and the pedals/footrests move forward and backward giving her legs movement. Not sure how beneficial it is but we do it.

Now the other thing we have is the Revitive Medic which I guess you may have seen as it has been advertised for a long time by Sir Ian Botham the famous English cricketer and more recently by Claire Baldwin, erstwhile jockey and now TV presenter.

I am wondering if you can comment on the effectiveness of otherwise of the Revitive Medic equipment as it uses electrical pulses to relax muscles and improve circulation.

I did ask the GP but they simply said we cannot comment on it

We already have it and use it, but as Mum can’t comment we are just wondering how effective or otherwise it might be.

Thanks in anticippation.

[Bagrat]

I am choosing my words with care as always worry a great deal about inadvertently causing upset.
I perhaps should have said that for the last 20 years of my nursing career I worked in palliative care both in hospice and as a Macmillan Nurse.
Firstly I am pretty sure that had your Mum been cared for in the best of nursing homes, with the best of expert staff, I doubt her life would have been as long or fulfilled as it is with you and your sister.
Having said that and knowing this forum is read by many, those who out of choice or necessity choose a nursing home for their nearest and dearest, do so because they know it is the best course for themas a family unit.
( I once had to break up a fight between two ladies at a support group along similar lines and it wasn’t pretty!!)
It may be some comfort to know that health care professionals struggle with the situation in which you find yourself. You adhere to the care plan which experience and research has shown to be best to prevent issues with undue pressure, ( to name but one) but this results in an unduly wakeful person being turned “by the book” and yet loosing out on sleep and relaxation.
Palliative care should provide the best possible relief for symptoms at any stage in a person’s life journey.
I assume your Mum has been provided with some form of pressure relieving mattress ( and I know some take some getting used to)?
If I was advising, which I promise, I am not, I would say what an amazing job you are doing. It is probably the best testament to what a wonderful mother you have, that you want to do this for her.
As for the turning religiously as per plan, sometimes, you have to look at the big picture.
Relieving your Mum’s distress, and you having the energy to continue as carers are also important parts of the jigsaw. Sounds like settling her and waiting for her first period of wakefulnees is a very valid way of managing this situation.
If after a few nights you notice her skin is suffering as a result, then maybe a rethink is needed, but if you are managing skin integrity in this situation taking age, immobility and peg feeding into account, you are doing extremely well.
Gosh this has turned into another bedtime story. You have my utmost respect Roland.
Kudos to you. Wendy

[pando]

@ManjiB

there is a leakage and she might get electrocuted

A simple Earthing wristband has a 100k ohm resistor to prevent short circuits in case of lightning. In case of water there is no problem. An Earthing wristband is not connected to the electricity but to the grounding pin of a socket (grounding prong of a plug, if you like).

Anyway, wishing you & mother all the best, Roland

[Mrs5K]

@ManjiB i have to agree with everything Wendy @Bagrat has said. Adhering to the care plan is great but sometimes you have to take the practicality of thecsituation into account. If she is sleeping well then try not turning her and see how you go.

We had similarvwith my dad at the end of his life and we turned him as required in thecday but didn’t at night. Turning him hurt him so it at least gave him some respite from that.

I too think you do an amazing job. You are a true inspiration.

Ann

[pando]

Hi ManjiB,

I have not tried the Revitive Medic, but I have tried other EMS machines which did nothing for me. However, the concept is valid, I believe, and I can only suggest trying it on yourself! Do you feel an increase of circulation? Of course, you know I will say that grounding is a superior concept for circulation, especially.

I like the idea, but having not tried it, I have no valid opinion. I am open to comments, and would like to hear good testimonials on the machine. Any such link ?

One word of warning ; EMS, TENS machines and even a foot massager which over stimulated a nerve in my foot and still gives me problems to this day, can be a bit random. Helping some, but scrambling the muscles for others.

Good luck, Roland

[ManjiB]

Ok, so once again thank you all, Ann, Wendy and Roland for your responses.

I really appreciate your comments and find them very supportive and reassuring. Often, they echo what I myself have been thinking, doing or would do. Believe me Wendy, you do not have to choose your words carefully on my account as there is nothing you could say that would upset me - I respect your time and effort and know you would not knowingly set out to cause upset. I do understand that we all have to be careful with choice of words, as we found recently on another post, to ensure the wider audience is also not going to be harmed by our choice of words.

It’s very kind of you to say what you did about Mum’s quality and fulfilment of life had she not been cared for at home. If I may humbly say that we do agree that getting “one-on-one” care round the clock is very much a luxury that many may not get to enjoy. And yes, the fight you broke up could have been me and my sister - we have come to blows (not literally) on several occasions especially in the early days when the learning curve was so steep and the demands so huge. Over time we have learnt to manage our emotions and tempers and thankfully, we can now step out of the room to let things settle and are able to easily forgive and forget sooner. We both know neither of us could cope on our own and Mum would be the long term loser.

Mum is as you say pretty much in palliative care, but at the same time we are trying to give her the opportunity to get more out of life if possible, e.g. by giving her physio etc. It is incredibly joyous to see the smile on her face when we do something that really pleases us and for us it makes it worthwhile. It’s not easy but it makes better people of us

As far as I am aware, Mum has got all the aids e.g. pressure relieving mattress, comfortable clothing and most importantly 24/7 care. The only thing is we don’t know what we don’t know that would be/might be of help e.g. Roland’s Earthing gadgets.

We have been trying - biomagnetic bracelets, TNS stimulation pads, Revitive etc. but we can never be sure how effective or indeed damaging these things might be for Mum as she is non-verbal.

Her skin integrity has been hugely challenging with incontinence pad usage, moisture lesions and also the blood thinners making her skin easily bruised. But despite all the things she is put through she continues to amaze us.

We are looking forward to getting the centenary card from HRH King Charles III.

Roland - I am keen to try the earthing gadgets and will see what I can source, unless of course you already have something you would like to recommend.

I have to mention - Mum and you have (it seems to me) similar ideologies. She only takes Asprin today (she has no choice) and refused pharma medication all her life, choosing herbal and ayurvedic remedies or nothing i.e. let nature take its course.

She walked barefoot as much as she could and she used to bathe her feet in rainwater, though I am not sure she was aware that it might be “acid” rain in this day and age

Once again - thanks everyone. I really appreciate your input towards our cause.

[Mrs5K]

Just reading through your post about your m being non verbal and the added difficulties that causes when trying new things and not knowing if they are helping or not. You probably already have something in place but have you thought about getting a device or picture cards etc that she could point at to give you a clue? Not sure if her cognitive abilities are at a level where that is posible for her?

As I say you probably already have something in place so please feel free to ignore.

Have a great Sunday.

Ann xx

[pando]

@ManjiB

Roland - I am keen to try the earthing gadgets

To start try this ; goes around wrist or ankle
Vitamin D is also a thought

Tvouanz Grounding Wristband with 15ft UK Cord, Earthing Wrist Strap for Sleeping Better

Tvouanz Grounding Wristband with 15ft UK Cord, Earthing Wrist Strap for Sleeping...

[ManjiB]

Hi Roland - Amazon has frozen my account due to suspicious activity i.e. I haven’t bought stuff from them in over 10 years?

Anyway, lots of faffing around to get account re-activated and I really can’t be bothered.

So I am going for a similar product from a UK based company
Earthing Revolution - Join the Revolution

I found this to be the closest to your Tvouanz Grounding Wristband
Earthing Foot Band Kit | Earthing Revolution

I have ordered it and hope to report on progress soon - it might be tricky as Mum is non-verbal

I’ll ask the GP to do blood tests though I suspect these will show normal as she’s on a controlled Ensure Plus and Ensure Fibre liquid diet with supplementary salt added to her drinking water (nil-by-mouth) via her PEG tube.

All good stuff.

I’m really hoping for a good outcome as we previously used (and she still wears) biomagnetic bangles which seemed to do the trick when she exhibited similar symptoms/behaviour a few years ago.

I’ll keep ye posted.