I came across another interesting site in my search for ways to help loosen Lynn's hand from forming a fist. (contracture) There is a lot of helpful information about many different things and I like her perspective and honesty. Here is the link: http://thedementiaqueen.com/
From her site....
"Death Grip
Did you ever notice that someone in the later stages of dementia has a difficult time letting go of things?
Maybe he can’t put his fork down, or let go of the walker or grab bar?
And telling him over and over to “let go” just doesn’t seem to work… so you pull the item out of his hand, or pry his fingers off of the bar.
There are a number of issues at play here: 1. Palmar reflex- the tendency of the hand to close tightly around something when the palm is stimulated. Many new parents show off their baby’s “strength” by how tightly the baby can hold onto their parents’ fingers. The reflex is a developmental motor pattern that we needed long ago to hold onto our mamas while they swung from tree to tree. We don’t need the reflex for that purpose any longer, but it is present in babies as a survival function (for feeding from breast or bottle) and as a stepping stone for future advanced movements. The newer movement patterns dampen the old reflexive ones. Newer movement patterns are just like newer memories- they are the first to go. As higher, more evolved movement patterns become damaged by Alzheimer’s disease, the reflex is no longer inhibited. The palm becomes very sensitive to closing around objects.
2.Apraxia- the inability to carry out a purposeful movement. Release of objects is a learned motor skill, one that is susceptible to damage from Alzheimer’s disease. People with Alzheimer’s require more time to carry out a motor command. Apraxia is a challenging problem.
3.Impaired language skills- the language centers become so damaged in Alzheimer’s disease that virtually all verbal communication becomes pointless (not conversational inflection, body language, and facial expression- but that’s for another post). Repeating the commands to “let go” accomplishes nothing, just as raising your voice only adds to the confusion and can cause an even tighter grip. Pulling on the person’s arm or prying the fingers off of a bar can also cause adverse reactions based on fear- if I don’t understand why you want me to let go, I’m only going to hold on tighter. I don’t want to fall.
4.Prying the fingers or pulling the fork out of the hand only promotes a clenched fist. What this means is that opportunities to practice purposeful release are taken away, and the hands will posture more and more often in a clenched position. This will ultimately lead to hand contractures and non-functional hands.
So what is the correct approach to managing this common symptom?
1. Demonstrate the action of opening your hand, and do it within 14 inches of his face so that he can visually attend to your action.
2. State a one word command like “Open”, or “Release”.
3. Allow at least 10 seconds for the hand to completely open.
The best way to prevent hand contractures and preserve functional release is to provide opportunities to grasp and release objects. Most people at this stage enjoy rummaging and manipulating objects, so be sure to encourage this activity instead of preventing it.
Keep Those Hands Open" ...........
I have to say in just a couple of weeks of doing this I already am noticing a difference with Lynn's hand. It is easier to open from the fist and when I exercise it he no longer says how badly it hurts. Poor bugger... just anything I can do I will try. Also for those who do not know, they sell aids to help keep the hand from contracting. I do not like these on Lynn 24/7 as I fear infection, but it is a good sleep aid for him. I use a variety of 4 different ones.
Here is a link to some of those: http://www.rehabmart.com/category/Hand_Contracture.htm
Those are some interesting points...I've read before about how many infantile reflexes return in patients with advanced dementias. Jeff's behaviors have become pretty primitive in this area. In general I find that it's better to rub his shoulders than hold his hand, simply because he does just that--grasps the object (hand) reflexively then attempts to move it toward his mouth. In addition to the myoclonic twitching he's had for some time, he does those little full-body, arms out jerks that you'll see babies do if a passing breeze or anything slightly startles them.
He can neither see, make purposeful movements, nor comprehend enough for therapies other than massage to be of much use. I can see in your photos that Lynn retains a sparkle and awareness of his environment. He's fortunate to have you working with him. I hope it helps him.
And likewise Emily, your last photo of Jeff........yeah, heartbreaking is the only word I have. ((hugs))
It is more evident than pictures and video can relay just how 'present' Lynn is. The sparkle in his eyes, that is what keeps me going.. and also why I feel I must fight so hard to give him the different therapies I feel he needs. He gets PT, OT and restorative care daily. Why I had to fight so hard to get these for him I still don't fully understand the logic. To me it isn't about getting him 'better', which seems to be the mind set of the PT department at his facility (they do a lot of short term care after surgeries etc. there) , it is more about trying to help him retain the function he does have, and to ward off atrophy and contractures.
It is helping without a doubt. He also gets what I call his standing therapy twice a day. He can't walk, or stand (he does that lift his legs up that this woman talks about in another of her pages) So what they do it use a machine called a Stand Lift. They raise him with it and he holds the stand for a given time, then is lowered back into his wheelchair. Then repeat 3 to 5 times depending on his mood and level of cooperation. His muscles get a good workout and the lung function improvement has been amazing.
Though they do work his hands (all joints) with range of motion type therapies, his hand still clenches in that tight fist. He does it so often that when you try to open his hand, he thinks he is holding tightly onto something and if he opens his hand he will drop it. I tell him I will put "it" in his wallet for safe keeping and he does relax his hand enough for me to pretend to take the imaginary object from his hand. Then I would try to gently massage his hand and palm, but he often cried out in pain. Acccck!
Since I have been using the above technique he doesn't say it hurts (of course I am still gentle). I can only draw the conclusion that it is because he has done the relaxing, " purposeful release", himself.
As a therapist who chose to work with dementia patients to help improve their function and quality of life, I found her website refreshing. The only thing I disagreed with her about was her comment that the bulk of caregiving usually went to the child closest to the patient. That isn't what I have lived nor what I have observed. My observations have been it is usually the spouse first and the children only step in if there is no spouse. (or both parents are ill) Then again, I can't hold it against her that her experiences have been different. Her advocacy is admirable as well. She also has a place where you can ask her a question, something that might be useful in the future.
I am going to try this for Dado's clenched fists Nikki, he gets MAD when I try to straighten his fingers. With observation it is really quite amazing how this disease progresses. I see that now, if I say something to him, like here is Pam to see you, it takes him about 5 minutes to digest and then he will look at her.
Thanks for that site I will bookmark it. How I wish I could do that wonderful standing up thing they do with Lynn. I try to get him to stand up and put his arms around me. Then I hold him tight at his lower back and try to STRETCH him . He seems to like it, and after reading what you said I will do it more. He can just barely stand up but not on his own.
Be careful trying to stand him alone Coco, you could really hurt yourself! Maybe one of the helpers there can help you stand him? I imagine it must feel good to him to have his back stretched, you are so sweet ♥ It is too bad they don't have the machine (Hoyer stand lift is what they have) but they are very pricey. It locks his legs in and this prevent him from his natural instinct now to pull his legs up. It also has a harness that goes around his body and attaches to the machine, then the machine does the standing, but Lynn does some of the work too. It works most of his body, even his arms and I am surprised at how much muscle tone he still has.
I wish I could post pictures and video here... with the hand exercises and Lynn manipulating "toys" like legos daily, his hand is getting better almost by the day. AND...... he has started to feed himself. Not a lot, but he IS lifting the spoon, loading it and taking bites. I wish I could get into his head and figure out what the heck is going on in there! He will take a few bites but then stop. Sometimes I can prompt him to start again, sometimes not. Some days he will not lift the spoon at all...But still.... Oh...My....God!! It has been since 2010 that he was able to take even one bite.
Never give up, keep those hands working.....keep them stimulated. I am now a firm believe in "purposeful release" ♥