Clenched Jaw

[Scottoppy]

My wife has displayed, over the past few days a reluctance to take food even in the form of puree. This morning she seemed unable to open her mouth and has drunk a little through clenched teeth. Because she cannot now speak we have to use a YES/No picture to get answers ,however in this instance she is being very evasive and answering yes and no to any questions so it is difficult to know what is the truth. Can she not open her mouth or is she just refusing to do so? Has anyone else experienced this phenomena ? She has just moved on to Level 4 diet (Pureed food) but is taking less and less each day.. She has an Advanced Directive stating that she does not want PEG feeding. Is this the beginning of the end? I am so scared!

[Willowden]

Hi, I am so sorry you are experiencing this. We seem to be in a similar place.

Mum has been losing weight over the last few months and is on level 5 and thickened drinks. The last couple of days she has been repeatedly saying “yes” although when asked a question she can answer appropriately. This week she has had 2 days with no food because her mouth was clenched and we couldn’t get any food in.

Yesterday I felt it must be the end but today she is a little brighter and has been able to open her mouth and eat a little soup and yoghurt. She wasn’t drinking much juice but then I offered her a coffee and she drank it all and then drank all the juice! We have also done a swab for possible UTI so will see what that brings back. I have the feeling that the mouth clenching is involuntary because she is able to say “no more” when she has had enough of something so can refuse in that way.

Sorry I’m not much help, I am finding this stage pretty tough. I just wanted to share that mum is showing similar behaviours to your wife and that you are not alone.

Sending strength and love xx

[Zerachiel]

Hi.

The clenched jaw can be due to muscle control as most other symptoms of PSP. Massage below the cheek bones near the ear can help to stimulate the muscles.

You can also have botox injections to relax the muscles

It may be worth asking a dietician for Fortisip or similar if she can still drink with a straw.

[pmcdonough1]

Scottoppy, you are a wonderful husband to be taking care of your wife through this journey. My husband had PSP, I can empathize with you, as I have walked your path. Based on experience at his point in the disease process, I would suggest you need to tell your wife's doctor what is happening and that you need help. You need support and a knowledgable medical professional to help you. This is a terrible disease that impacts the patient and the caregiver. Communicate to her doctor that you need help so that you can get the rest and knowledge you need to be the best advocate for your wife. You also need help so that you can also be the loving emotionally supportive husband your wife needs as well. CurePSP is a great source. I have called them many times and talked to them about what was happening, they were always kind and knowledgable. I wish you and your wife my best.

[David750]

Hi Scottoppy, I agree you need your GP & Dietician's help. Clenched jaw is not deliberate it is due to PSP where muscle control ceases eventually, even hand coordination in answer to questions. I think this is nearing the end as the key now is maintaining hydration for which she needs to drink more than it appears she is able. Fortified energy drinks your Dietician can prescribe may be key if your wife can drink them. When my wife (PSP) ceased to be able drink she was put on a morphine driver by her GP as he recognised it was the end. She passed away peacefully with our family by her side. The last function to go is hearing so please talk to her assuring her of your love and presence 🙏

[sammy90210]

I'm sorry to hear this... This is a very difficult time as well

In case it's a muscular stiffness, plz check with Neuro for Sinemet (carpidopa/levadopa) - it works for some patients in resolving stiffness and helping in swallowing

Otherwise, it may just be the body saying that it's reached the end of the road - if she doesn't eat or drink anymore, the body organs start slowing down due to nutritional deprivation (it's not starving) and from what I know, it's not painful - based on my own dad's experience with a PEG tube, this is not the right time to use it, it's prolonging the end with an addition of suffering - if she's already using cards for yes no, then it indicates she's not "enjoying life" as such and hence a PEG tube wouldn't improve her quality of life

I'm sorry if this has been hard to read but there comes a time when the diseases gets to a stage where the body feels like it is close to the end... Best wishes and hope it goes easy for you and your wife as well