Ensure liquid meals

[Sun-flowerwearer]

Please could I ask if anyone has experience of surviving on liquid meals only. My 64 year old husband has PSP and is in advanced stages. He does not want to have a PEG fitted. His jaw has started to lock tight for long periods and it’s impossible to open his teeth enough to get a spoon inside. I have tried physically forcing my fingers between his teeth , touching his lips, massaging his cheeks etc. I have been told by Hospice Nurse and GP that they would not force his mouth open or put their fingers inside his mouth as he could bite their fingers. GP has prescribed Ensures and I offer these in a spouted cup as the liquid gets past his teeth and he can manage to swallow with some encouragement I ask him if he’s hungry as worry it’s his body saying stop feeding me but he often indicates yes … so I try very soft foods and if that fails go to liquid ensures. This has been getting progressively worse since 1 March! Has anyone else gone through this as I’m finding it very worrying.

[Leosta]

I didn't experience this so severely with my husband so I can't really help you. I just wanted to tell you that little by little my husband would eat less. Then he wasn't interested in food and was only sipping liquids. This was about 2 weeks before he passed. He did jaw clench but not for long periods. I'd talk to him gently and ask him to open his mouth and after a while he would, enough anyway to get a little something inside him. Please don't think about a PEG. Don't prolong his suffering. You've mentioned he is in the advanced stage. As hard as it may be to accept his body is shutting down. Be strong.I'll keep you you both in my prayers 🙏

[Sun-flowerwearer in reply to Leosta]

Thank you for your reply. We are definately not going to have a PEG. It’s just very hard knowing that once the eating stops that’s the end! He’s drinking Ensures as I can tip the liquid in through his teeth and they are 300 calories each so they may keep him going for the while longer !

[Leosta in reply to Sun-flowerwearer]

It's so hard, I know. 💟

[LFG3]

Hello,

My husband with PSP did not have the tight jaw clench that you describe, but I have read about others that did and they used a syringe to put pureed foods, ensure, and thickened fluids in their mouth. I fed my husband a lot of smooth yogurt and I found some with high protein. I see you are from the United States. If you don't already know this, this support board is based in the UK and their healthcare system is very different than ours. There is a USA based support board at Smart patients.com. You have to join the PSP and CBD health issues to see the related posts. They may be more helpful to you. I'm just outside Knoxville, TN and my 67 year old husband passed away last August. Feel free to direct message me if I can be of any help.

[Sun-flowerwearer in reply to LFG3]

Hi

Thank you for your reply. I am UK based in England. I agree the healthcare side is different than n the two countries. I am really sorry to hear your husband passed away last year … that outcome is on my mind xxxx.

[LFG3 in reply to Sun-flowerwearer]

I'm sorry. I misread your information. The two healthcare systems are so different.

I'm so sorry you and your dear husband are on this PSP journey. It is such a devastating disease for both the person and the caregiver.

My husband had the classic Richardson's type of PSP so he had every one of the classic symptoms and it progressed very rapidly. 5 years, 8 months since the dizziness and falls began plus 3 more years of anger and behavioral issues described as a personality change. Truly a living hell for both of us! I miss him everyday but I'm truly relieved his suffering is over. I'm sure he would feel the same way. He had his mind until the end and actually told me he was going to "pull the plug this afternoon" the day before he died. Hospice was a godsend for us although we only had them for his last 2.5 months.

My thoughts and prayers are with you both during this very difficult time. ❤️

[Sun-flowerwearer in reply to LFG3]

Thankyou ❤️

[LuisRodicioRodicio]

Hi Sun-flowerwearer!

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

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.

Scottoppy suggest:

My wife has a similar problem and has been given a "Headmaster" neck brace by the orthotics people. Google it for more info but it is a comfortable, adjustable brace that she tolerates better than the old foam one. Also try a 'V' pillow at night and in her chair this helps to keep the head straight and comfortable.”

pmcdonough1 suggest:

“My husband had PSP and when he started to aspirate when drinking his doctor prescribed Donepezil 10 mg (Donezepil is a cholinesterase inhibitor) . After just a few doses his eyes lit up like there was a light turned on in his head. His swallowing improved. After a couple years when he started aspirating again his doctor increased the dose of Donepezil to 20 mg. His speech therapist was amazed at his improvement. In the United States on the NIH website under Progressive Supranuclear Palsy it lists that ”some PSP patients” benefit from up to 20 mg of Donepezil.

Richard33 point out: “Cholinesterase inhibitors are not recommended if severe motor features are present, as any positive effects on memory may be negated by worsening of motor symptoms. That said, everyone's journey is different and it may help someone where they still have good mobility”.

Let doctor know about the article on the NIH website as a resource.“

Hug and luck.

Luis