Expert: Mary Gordon - 10/4/2010

Question
Mom is 93, in care and nearing the end of our journey together. Three months ago I asked for palliative care because of witnessing care aids forcing her to eat.  Since then she has been more content, but eats very little thickened fluids and pureed food (pocketing).  She is so thin, only 80lbs. A year ago she was 90lbs  She is being treated for a past infected bedsore which is being controlled.  The last month I've notice she has one fist clenched all the time and when she tried to grab at something with her other arm, her movements are very jerky. It breaks my heart to see her like this, some days I'm ok with it and others I am not. Why do they clench their fists?  
Thank you

Answer
Hi Kim, I know this is very hard. They clench their hands from disuse. It's a form of contracture. Muscle fibers start to break down several months before the actual contraction takes form. Contractures can sometimes be prevented by performing simple exercises by flexing the limbs of the contracture-prone person. However, once the contractures form into contracted muscles they are irreversible.

There are several different types of contractures. Symptoms include a tightening of skin, muscles, ligaments, tendons or joint areas, which prevent normal activity and movement. Scarring and the lack of muscle or joint use from inactivity or immobility are the most common causes of this condition. Left untreated, some types of contractures may result in deformity.

Since it is sadly true that your mother will not regain the use of her hands, the only concern is whether the clenched hands are causing her pain or health complications. They can be so tightly clenched that it is impossible to clean or dry the palms, leading to hygiene problems and infection. Sometimes the nails will cut into the palms.

Treatments can sometimes include the use of splints and guards (i.e. orthotics), botox to relax the contractions, or even cutting the tendons - which sounds awful, but if it makes the person more comfortable, it can be worth considering if nothing else works. Doesn't sound like your mom's are that big a problem right now.

Here are a couple of examples of the orthotics.
http://www.pelicanmanufacturing.com.au/cgi-bin/store/commerce.cgi?pid=126&ppi=PI...
http://www.abledata.com/abledata.cfm?pageid=19327&ksectionid=19327&top=11845

I suspect the jerkiness is from the brain damage - it is called monoclonus. Myoclonus can be mild or severe. Muscles may jerk quickly or slowly, rhythmically or not. Myoclonus may occur once in a while or frequently. It may occur spontaneously or be triggered by a stimulus, such as a sudden noise, light, or a movement. For example, reaching for an object or taking step may trigger jerks that disrupt the movement.

This really is a miserable disease and I am so sorry both of you have been through so much.

Thinking of you and hope this helps. She's fortunate to have you looking out for her.

Mary