I need some help for my dad.

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Can anybody help me understand a problem I am having.  My dad has severe COPD, CHF, PAD and Cancer of lungs.  He is 86 so I don't expect any miracles at this age.  He recently went on full oxygen after a 15 day admission to hospital with CHF.  He has these hand and feet jerky movements.  The neurologist said he does not have Parkinsons.  I have noticed this has increased lately.  When he goes to get up his legs give out.  I always seem to have problems with him more at night.  His oxygen hose falls out (don't know for how long) his lifeline is off his neck or all twisted with hose.  I also gave him a bell to ring just in case.  Last night he rang the bell and when I went in again everything all over the place.  He will not lay up on the bed which is supported by the wedge.  He is always found side sleepiing sideways on the bed.   I got him to sit up and offered him a cup of tea because he is so stressed out knowing his oxygen fell off.  While sitting on the bed he suddenly jerk so hard his tea went flying and his whole 220 pounds jerk back on the bed and his legs and hands violently shook.  Thank god he fell back on the bed.  This upsets him so much and scares me too.  I am scared to let him walk anymore because these come on so suddenly and I don't want him to fall.  I keep saying to the doctors he keeps jerking but nobody says anything.  Has anybody experienced this and can help me with any advise with positioning, oxygen hose and what this is.  I am his daughter and decided to move in with him and care for him, but I am worried too.  He has homecare one visit a day but they can't help.  I have ask his nurse who visits one day a week, but she doesn't know.  Thanks.  

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  • Posted

    I am sorry for the rough time you are having.

    I cannot help much except maybe with the positioning of the oxygen tube (it's called a nasal canula)

    The normal way to wear is to insert in nostrils, put over the ears like spectacles and then under the chin, tightening up with the transparent tube.

    If coming loose with movement and alternative is to put it over the ears but unstead of gooing under the chin, CARRY ON OVER THE HEAD SO IT REST ON THE BACK OF THE KNECK, THEN TIGHTEN WITH THE TRANSPARENT TUBE.

    That way it is much less prone to work loose.  Ask the visiting nurse to give you some micropore adhesive plaster and tape to cheek boes as an extra, that may help as well.

    Keep in touch as there is plenty of help, support and sympathy on the forum.

    Good luck and take care,


  • Posted

    I am wondering if you Dad ends up sideways on the bed because the wedge is actually too high.  I once had a wedge and always found myself down the bed with feet hanging out the other end and I'm only 5ft 2".  Now instead of the wedge I sleep with two pillows and a neck hook. I personally find, two pillows help keep the chest slightly elevated allowing easier breathing.

    Just searching your comment regarding the ' jerk back and legs and hands violently shook ' on google and myoclonus comes up, there are it appears connections with anxiety, oxygen deprivation, and other  -   if you check into this yourself on a google search you may get some insight into what may be happening with your Dad and with that information you could go back to his doctor for further advice on what can be done to help your Dad.

    I would say you need to determine if these jerks and violent shakes only occur when his oxygen canuula falls off, if this is the case then its a question of finding a way to keep the cannula in place.  The inspire forum has a discussion on this subject, pm me if you can't find the link on google.

    If the jerks and shakes occur at any time whether oxygen in place or not there will be something else that is causing them.  Of course it may be nothing at all to do with myoclonus but if you find after reading about it, it fits, then search for symptoms and causes to get more insight into it, record how often your Dad is experiencing the jerks and shakes and what time of day or night etc. all this information his doctor will want to know.

    Mayo Clinic on myoclonus indicates:


    When to see a doctor

    If your myoclonus symptoms become frequent and persistent, talk to your doctor for further evaluation and proper diagnosis and treatment.  "

    Hope the situation improves for your Dad and hope you find some of the information helpful.

    Best wishes V



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