Not Brushing teeth and other self care

[Hope_eternal]

I caretake for my 20 yr old son. He’s been bed ridden for over a year. His energy is so low he states he can barely make trips to the bathroom. He hasn’t brushed his teeth consistently for the year, maybe a handful of times and he can take a shower only once or twice a month., I worry about his mouth hygiene. Is there anything I can do to help him with this? I’ve offered to help him brush (he says no to that) and there have been times I’ve left fresh water and a bucket with his tooth brush and tooth paste by his bedside but he doesn’t use it. I don’t want to overwhelm him so I don’t push the issue but am very concerned about his mouth health and all that bacteria getting into his body. I would appreciate any suggestions you may have.

Also because of the infrequent showers things can get quite potent after a while. I’ve left clean shirts and wipes but he seldom uses them. Again I don’t want to overwhelm him so I don’t press the issue. I suspect he is very low energy wise and has to pick and choose what he can do. If you have any suggestions I’d be greatly appreciative.

My last concern is I feel he’s on his laptop way too much. He is on it all waking hours. I spoke with him about this possibility keeping him in his zapped state as it might be too stimulating. He doesn’t want to give it up understandably because then there’s nothing for him to do. I suggested listening to audio books or doing visualization relaxation throughout the day but…Ug he resists. I know this illnesses takes away so much so I sympathize with him and his situation. All he has is us and that lap top. 😭 it’s a very difficult place to be. Again, any suggestions would be greatly appreciated.

 

[BrightCandle]

Swishing mouthwash might help with the mouth hygiene and be a lot less energy. I use an electric toothbrush to reduce brushing energy use alongside mouthwash when I can't do standing in front of a sink. You can also get probiotics for the mouth microbiome that can shift the biome to a healthier state (worth some research) and you can address hygiene issues that way as well.

Wipes are the best way to shower in bed but its a lot of effort. I needed help it was the only way when I was that severe. We get pretty icky honestly and we don't have much choice and the more severe we are the worse that is.

Its immensely boring laying down all the time and I spend too much time on my tablet in bed as well. When things were worse I couldn't do it and the suffering involved with all the pain and boredom was immense. Its quite likely the laptop is providing the social interaction he needs and is the lesser of the evils. I personally use this to distract from pain and other suffering and I suspect your son does as well. Suffering doing nothing is a lot harder and I end up suicidal if I do that for too long.

One possibility is "replacing" the laptop with a more consumption oriented device such as a tablet. It moves the hands and arms down to the sides and is a less energetic device to use focussed more on reading, listening and watching rather than typing and producing. The need to do can't be removed its hard wired into all humans but perhaps a more comfortable device biases things to a little less energy strain.

 

[Hope_eternal]

Swishing mouthwash might help with the mouth hygiene and be a lot less energy. I use an electric toothbrush to reduce brushing energy use alongside mouthwash when I can't do standing in front of a sink. You can also get probiotics for the mouth microbiome that can shift the biome to a healthier state (worth some research) and you can address hygiene issues that way as well.

Wipes are the best way to shower in bed but its a lot of effort. I needed help it was the only way when I was that severe. We get pretty icky honestly and we don't have much choice and the more severe we are the worse that is.

Its immensely boring laying down all the time and I spend too much time on my tablet in bed as well. When things were worse I couldn't do it and the suffering involved with all the pain and boredom was immense. Its quite likely the laptop is providing the social interaction he needs and is the lesser of the evils. I personally use this to distract from pain and other suffering and I suspect your son does as well. Suffering doing nothing is a lot harder and I end up suicidal if I do that for too long.

One possibility is "replacing" the laptop with a more consumption oriented device such as a tablet. It moves the hands and arms down to the sides and is a less energetic device to use focussed more on reading, listening and watching rather than typing and producing. The need to do can't be removed its hard wired into all humans but perhaps a more comfortable device biases things to a little less energy strain.

Sending you warm hugs. As a mother seeing and hearing the monumental physical and mental effects of this illness shakes me to the core emotionally. I pray a breakthrough comes in for you all ❤️‍🩹 Thank you so much for taking the time to respond. You provided wonderful advice and suggestions. I very much appreciate your message.

 

[crussher]

For technology, I use an app called Freedom. It allows you to set up schedules in advance - e.g. blocking the entire internet for periods or just certain websites rather than others. I use this to keep my internet off until 4.30 PM (except email). It gives me greater balance in my life and allows the first half of my day to be less tech-heavy. I'd be on it all day too if I didn't do this. The app allows for total choice in the kinds of blocks you make though I don't know if it would appeal to your son. I like it as it takes willpower out of the situation.

 

[linusbert]

I worry about his mouth hygiene. Is there anything I can do to help him with this?

yes you can maybe, there is oil pulling. you take like good extra virgin coconut oil or olive oil and put contents of a table spoon in your mouth and move it around your mouth, pull it through the teeth.
after like 10-15 minutes spit it out. do not swallow.

One possibility is "replacing" the laptop with a more consumption oriented device such as a tablet. It moves the hands and arms down to the sides and is a less energetic device to use focussed more on reading, listening and watching rather than typing and producing.

i personally dont like it, a tablet needs to be hold needing muscle energy to keep in place or interact with. you got to raise your arm up everytime u want to do anything.
laptop can just rest somewhere and also hands rest on it.
at least for me thats better.

why would you take away his only means of social life and connection to outer world? thats how it is, the only thing he can use. let him have it.
you might try a pomodoro timer. and help with time

 

[andyguitar]

My last concern is I feel he’s on his laptop way too much. He is on it all waking hours.

Doing this will use up a lot of his energy.

he can take a shower only once or twice a month.

How does he feel after a shower? Tired or crashed?

 

[BrightCandle]

Another possibility is a table that goes over the bed for the laptop and a track ball input device for the hand that can sit on the bed. This too might reduce effort and bias towards consumption. There are also keyboard redesigns for one handed or split between hands that could sit on the bed by the side and that would also bring the hands down.

 

[dave11]

For a tablet, I suggest an Amazon kindle. Besides surfing the web, books can be downloaded from Amazon. It is less physical effort to flip through pages on a tablet than to do so by hand with a paper book. Also, it is easier to hold a tablet than a book.

For teeth, xylitol comes in different forms for dental care. It kills bacteria. Tastes sweet like sugar. An old T-shirt can be ripped up for rubbing across the teeth. Fluoride free toothpaste can be finger rubbed on the teeth.

 

[Rufous McKinney]

I spend too much time on my tablet in bed as well.

me too.

Also, my four and a half year old granddaughter is now obsessed with the phone, and watching things on it : phone just confiscated, yet again. Melt down addiction screams ensued.

Swishing mouthwash might help with the mouth hygiene and be a lot less energy.

swishing with baking soda and water might be a simple way to alkalize the mouth and help reduce problems.
sea salt is good also.

After eating, do this swishing.

 

[Rufous McKinney]

For teeth, xylitol comes in different forms for dental care. It kills bacteria

isn't there a xylitol gum? maybe that would be helpful, and I want some.

 

[dave11]

isn't there a xylitol gum? maybe that would be helpful, and I want some.

Yes. There is a xylitol gum. The gum can grip to fragile fillings. I use powdered xylitol and hold it in my mouth for several minutes. Four times a day. Birch xylitol, not from GMO corn. I think it is better to spit it out. So as not to upset the digestive micro flora.

 

[Rufous McKinney]

I think it is better to spit it out.

definitely spit out.

Anything your rinsing with: spit it out and rinse again

Coconut Oil pulling is a nice edition to tooth maintenance, but it likely requires getting up, the sink, warm water later etc. But my daughter swears her gums are better now after doing some of that.

 

[Hope_eternal]

For technology, I use an app called Freedom. It allows you to set up schedules in advance - e.g. blocking the entire internet for periods or just certain websites rather than others. I use this to keep my internet off until 4.30 PM (except email). It gives me greater balance in my life and allows the first half of my day to be less tech-heavy. I'd be on it all day too if I didn't do this. The app allows for total choice in the kinds of blocks you make though I don't know if it would appeal to your son. I like it as it takes willpower out of the situation.

Thank you for the app info. I will see if he thinks it is something he can implement in f not every day may start with a day or two to give him a rest.

 

[hapl808]

Also, a toothbrush is helpful even without toothpaste. Sometimes I am too tired to put toothpaste on, brush, clean off brush, etc. It's hard to explain the 'sensory processing' involved since I can do some other things, but the whole process of brushing can be inexplicably tiring.

But I've used Spry xylitol gum at times, brushing without toothpaste, and then normal brushing when I'm able.

 

[Hope_eternal]

yes you can maybe, there is oil pulling. you take like good extra virgin coconut oil or olive oil and put contents of a table spoon in your mouth and move it around your mouth, pull it through the teeth.
after like 10-15 minutes spit it out. do not swallow.


i personally dont like it, a tablet needs to be hold needing muscle energy to keep in place or interact with. you got to raise your arm up everytime u want to do anything.
laptop can just rest somewhere and also hands rest on it.
at least for me thats better.

why would you take away his only means of social life and connection to outer world? thats how it is, the only thing he can use. let him have it.
you might try a pomodoro timer. and help with time

Thank you for your response. I have heard of oil pulling and actually did it many years ago. I will see if he can tolerate it. Thanks for the reminder 😊

why would you take away his only means of social life and connection to outer world? thats how it is, the only thing he can use. let him have it.

Oh absolutely agree, no, I wasn’t suggesting I’d take it away at all. Was just thinking if he could take small breaks from it here and there it might help him somewhat energy-wise. He even sleeps with it on with his headphones 🤨 I can’t imagine his brain gets any rest. Since his sleep is all over the place it’s hard for me to know when he’s asleep so I can shut it down. Lately he’s up past 3 am. Anyway was just wonder what others do to pass the time. I know it’s a very difficult place to be and wouldn’t want to make things more challenging.

 

[hapl808]

Oh absolutely agree, no, I wasn’t suggesting I’d take it away at all. Was just thinking if he could take small breaks from it here and there it might help him somewhat energy-wise.

It's a difficult balance. I think that any time I spend on the phone or computer probably affects me negatively, but it's also my only contact with the outside world. I sometimes try to rewatch YouTube stuff so I can lie in bed and actually not look at the screen but just half-listen. Screen time affects different people differently, but you're not wrong thinking that it could have some negative as well as positive aspects.

And credit to you for thinking of all this and taking it seriously. I've seen so many people whose families don't believe them, think they should just 'walk it off' kind of attitudes, etc. You're doing more than 99% of people.

 

[Hope_eternal]

Doing this will use up a lot of his energy.

How does he feel after a shower? Tired or crashed?

I agree. However it really upsets him when I suggest he cut down his screen time. This illness is quite new to him and he’s had to endure many losses like many of you. I don’t think he’s ready to make a change there u fortunately.

He’s pretty zapped after a shower. He cannot stand up to shower. He lays in the tub with the shower hose. I’d say he feels pretty close to crashed. He feels tired all the time. He’s been in bed for an over a year. He gets out use use the bathroom which he says takes a lot out of him and takes 1 trip downstairs most nights. So he’s in bed for 23 1/2 hrs of the day. He showers once or twice a month.

 

[Hope_eternal]

Also, a toothbrush is helpful even without toothpaste. Sometimes I am too tired to put toothpaste on, brush, clean off brush, etc. It's hard to explain the 'sensory processing' involved since I can do some other things, but the whole process of brushing can be inexplicably tiring.

But I've used Spry xylitol gum at times, brushing without toothpaste, and then normal brushing when I'm able.

Great suggestions, thank you so much for sharing.

 

[Hope_eternal]

me too.

Also, my four and a half year old granddaughter is now obsessed with the phone, and watching things on it : phone just confiscated, yet again. Melt down addiction screams ensued.



swishing with baking soda and water might be a simple way to alkalize the mouth and help reduce problems.
sea salt is good also.

After eating, do this swishing.

Thank you for the swishing suggestions. As for the electronic meltdowns I don’t think that ever stops 😂 my 20 yr still protests 🤪

 

[Hufsamor]

When I’m at my sickest, I sleep with headphones and sound on.
Different people have different problems, but if a racing mind is one of his problems, he might feel he need the sound to calm his head enough to get any sleep or rest at all. I use audiobooks and I put in a timer so it stops by itself, but if I wake up during the night, I turn on the book again, to be able to get back to sleep.
(While when I’m better, I wouldn’t dream of putting on sound in the middle of the night. But the headphones themselves gives a kind of calming effect, even without any sound)

I’m member of a Facebook group where we uses smartwatches to track how we respond to different situations. And while some gets a bit of a surprise when they discover how stressful online activities are for them, others are a lot calmer online. Some people have less stress in their body being online than when they sleep!

(And by the way…bathing/showering is one of the hardest activities of them all, for all of us, it seems. I visit my mother in law once a week, and sometimes I push her in her rolling chair around the block, up and down a little bit. But my watch shows me that the shower (even if I’m sitting on my shower chair) is far more stressful than the walking and the pushing of a heavy mother in law)

I’m very impressed by you, how you understand, and how you want to help him. It would perhaps be good for him to connect with someone else with me/cfs?