Jaw not moving

[Stephanielayell82]

Hello to all!! My loved one is late to final stages with PSP. The last few days almost a week her lower jaw dosen't have any or very little movement. She isn't in pain. Her vitals are also good. Has anyone experienced the jaw issue? And with this disease does their vital signs normally stay in good range until death or they drop like other causes of death? Thanks for any help with my questions. I pray for strength for everyone that is affected by this disease.

[easterncedar]

Locked jaw is not uncommon. Folks have had to use syringes to provide water and nutrition in many cases.

[Stephanielayell82 in reply to easterncedar]

Thank you for responding. Yes we have been syringe feeding for almost 2 years now. Her muscles in tongue about that time frame. So between the tongue not working properly and swallowing difficultly we blended all her food. Just wondering how long not that bottom jaw muscle seems to be locking. What new challenges will come.

[Cbui]

Hi there - not too long ago, I posted about my mom being unable to open her mouth and then she also started experiencing jaw clenching/locking/biting that led to sores and blisters on her lips. She later got a feeding tube to support nutrition because of her desire to eat that was still clear to our family.

During this time as my moms chewing, jaw function diminished, her cognition and affect decreased. She started being more withdrawn and sleepy. Talking or verbalizing became impossible for her. We saw things dwindle over 3 months. She’s still with us trucking along.

If your loved one can still communicate, soak it in when you can. That might be soon dwindling if your loved ones path is similar to my moms.

Sending you strength and good wishes

[Stephanielayell82 in reply to Cbui]

Thank you for sharing your experience with me. Yes my love one is pretty much humming most of the time. No sores yet but lips very dry we keep them as moist as possible for her. Good luck on your journey with your Mom.

[Healthynotwealthy]

My mum seems to be affected by this recently. We haven't come to a conclusion but massage, hot packs seem to help at times. We also have a referral for a mouth guard to try and prevent cheek and tongue biting.

[Stephanielayell82 in reply to Healthynotwealthy]

Thank you for sharing your experience with this. It's so unpredictable.

[LuisRodicioRodicio]

Hi Stephanielayell82!

These are our experiences and informations:

In advanced stages of the disease, feeding the patient is a big problem. The patient is so bent forward and cannot tip his head back or move it, so feeding is now very difficult.

Before feeding the patient, give a circular finger massage for 1 minute just at the top of the jaw and under the ears, she can move her jaw better.

Our solution (which often works but sometimes does not) is as follows:

1) With the fiber-free part of the head of an electric toothbrush, we massage the outside of the jaw and the inside of the mouth to stimulate the muscles that open the mouth. Also, before feeding the patient, give a circular finger massage for 1 minute just at the top of the jaw and under the ears, she can move her jaw better.

2) Place a big napkin under the chin.

3) With the caregiver's left hand, the head is raised and with the right hand the spoon is inserted into the mouth and it is removed empty.

4) The head returns to the position where the chin is close to the chest (in this position it is easier to swallow) so that patient can swallow better.

5) Steps 3 and 4 are repeated as many times as necessary.

6) When feeding with a small spoon is very slow and difficult, we have used a 60 ml syringe, introducing the pureed food between the teeth and the cheek in small doses (10 ml each time).

It is normal for the napkin to get very dirty.

Note.- On the advanced phase in which we are, the patient tends to be frequently drowsy. If he is very sleepy it is useless to feed him. It is preferable that you take something the patient like very much (An ice cream for instance) to entertain the stomach and not force feed. This happens especially at dinner and in the morning our patient eat breakfast very well (generally the easiest and fastest meal of the day). Lunch is usually quite acceptable too.

Hoping to be useful.

Hug and luck.

Luis

[Stephanielayell82 in reply to LuisRodicioRodicio]

Thank you for all the great information. We will try these to see if they help!

[mlhayes60 in reply to LuisRodicioRodicio]

Hello

My husband is also fed a pureed diet with a 60 ml syringe. We add thickener to his juice and ensure drinks to a honey/pudding consistency. He likes yogurt and applesauce with thickener added that we can give by using a small spoon, and feeding very slowly. If fed too much or not slow enough, he will have coughing fits that sound "wet." We find giving him a nebulizer treatment when the coughing happens, helps tremendously. I often ask the hospice caregivers how much liquid/pureed food we should be given him daily, so as not to dehydrate or suffer from not enough nourishment and they say they have no answer. Can you tell me how much you are giving your patient or family member in total ounces per day? What are you giving them for breakfast, lunch, and dinner? My husband seems to be a little bored of the same diet each day, and I'm trying to get new ideas for pureed foods that can be put into a syringe that are calorie dense that he'll enjoy.

[LuisRodicioRodicio in reply to mlhayes60]

Hi mlhayes60!

Please, can you tell me what the "nebulizer treatment" consists of?

Thank you

Luis

[Stephanielayell82 in reply to mlhayes60]

For breakfast we do breakfast burrito, french toast sticks,pancakes,biscuits and gravy. Lunch is normally a type of soup. Dinner is a frozen dinner Marie Calendars or Amy brand. We use waters, syrups, broths to blend down to puree consistency. Not full meals child size portions.