PSP and pain//jaw lock

[ilovedogs7]

Hi all

I have a very close relative in a nursing home right now and I’m really concerned about her being in pain.

She is unable to speak, can’t really move (she can very slowly move her arms)

Recently she has been writhing round in pain with her face scrunched up in agony and her mouth open in a silent scream.

This is incredibly heartbreaking to see. She’s recently been put on end of life care by the nursing home and doctors.

What is bothering me is the nursing home are only giving her paracetamol. I’ve said I don’t think paracetamol is quite cutting it but I’ve been told because she refuses paracetamol the doctors won’t prescribe her anything stronger.

I have tried to explain to them that she probably isn’t refusing the meds, I find she has jaw lock alot of the time which is a symptom of this stage of PSP so maybe they need to try again in half an hour but they don’t seem to understand this.

Am I overreacting here? Do people with PSP endure lots of pain? I’m someone who lives with chronic pain and I know what being in pain looks like and she definitely is in pain.

I have also walked in on the carers trying to force food in her mouth when she clearly has jaw lock or doesn’t want to eat. I am tired of trying to explain all the symptoms to everyone and I’m fed up of telling them that if she doesn’t want to eat then we have to respect that.

[messier]

That sounds awful for you and your loved one. I completely get the frustration of battling with nursing home staff. So many are obsessed with protecting their own backs and following the rules, and ticking boxes. Do you or someone else have Lasting Power of Attorney for health and welfare? Have they done a proper assessment of capacity to make decisions - including allowing for behaviours that might look like refusal actually just being a physical sign of the disease?

[ilovedogs7 in reply to messier]

she’s been assessed for continuing healthcare but I don’t have POA.

I just want to teach the staff about PSP but what stuff I do say goes in one ear and out the other 😢

[messier in reply to ilovedogs7]

Is she on any other medicine? If she’s not taking anything else the business of swallowing a paracetamol tablet might be too much for her. Or are they trying liquid paracetamol?

[ilovedogs7 in reply to messier]

I don’t think she’s on other medicine. She has liquid paracetamol. She’s on strictly puréed food and also thickened drinks.

I’m going to have a chat with my family. I just don’t want them to think I’m overreacting. I also regularly get told to back off but I don’t want to. I want her to be as comfortable as possible and she doesn’t have the voice to tell us so I want to be her voice

[LuisRodicioRodicio]

Hi ilovedogs7!!

I applaud your courage to defend a patient who cannot defend himself.

The attitude of the residence caretakers seems cruel and unprofessional to me. There is a wide range of analgesics that avoid suffering the patient unnecessarily.

I don't know if it's an absurd idea, but it occurs to me that visiting a patient accompanied by a notary public and another family member could mean a powerful call to action and a change in attitude.

In advanced stages of the disease there are notable difficulties in opening the mouth. Muscle degeneration has simply reached the muscles that open and close the mouth.

We have tried this maneuver with "variable" success:

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.

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).

From what I have been able to read about PSP and our experience is that the patient retains almost all of her mental capacity so he may be suffering not only from pain but from abuse. He may resist being fed to end the ordeal but I doubt more than reject painkillers.

Hug, luck and maintain courage.

Luis

[ilovedogs7 in reply to LuisRodicioRodicio]

thank you for the advice. I’ll try that. I know they don’t use a syringe but I may suggest it.

[ncgardener799]

How awful for your loved one, and for you too. Is it possible for physician to prescribe pain medication that can be given via an injection, or skin patch? If she is on Hospice care then food is offered but if refused it can be documented as refused and no repreucisions would occur. Hospice/end of life care in the US is comfort measures only and if patient does not want to eat they encourage that family not force food. Sorry to hear other family members are not responding to your concerns. Hope matters can be resolved for all .

[Becky4321]

This is infuriating! You are wonderful to be taking an active interest. Hospice services should be available for your relative, and all the pain management tools they have. PSP qualifies for hospice regardless of how much more life is projected. The advice above about massaging the mouth sounds very interesting as well. Best of luck.

[Red1990]

I am with my psper mother in her own home with the assistance of a lovely aide. We have a great deal more consistency and less time constraints in our little world than in a facility. Your description of your loved one seems remarkably similar to my mom. She also has a great deal of contractures and dystonia symptoms.

I feel she has esophageal spasms or achalasia happening although not substantiated with any test. Feeding becomes more challenging later in the day. Bronchospasms also seem to be present at times. The throat is lined with fine muscles; it seems logical to me that those muscles would be slowing as well. Certain consistencies, such as a banana or pudding seem to hang up more intensely later in the day. Popsicles have a coating that sticks also at times.

Locked jaw or feeding resistance is not something that I normally sense. Although I will sadly admit that our aide is much more effective in her efforts than I am. I attribute it to mother/daughter dynamic.

The last words she surprised us with after many months of silence were, "I'm hungry." Heart wrenching. My guess is that difficulties in opening mouth is more of a neuro messaging issue. Her mouth often falls open when sleeping. I would think if a mechanical locking this would not happen.

When this happens in the very early AM, I will slide a Tizanidine dose in and the swallow seems problem-free and auto-reflex when unconscious. Strange. Some of the neuro- type tricks that Luis described are helpful.

Her meds are mild doses of Tizanidine (muscle relaxer). We time the doses along with medical marijuana and CBD drops to accommodate a nap. Flat, so that head/neck can relax from the CV dystonia contortion. She eats better after napping flat for an hour or so. Certain chairs seem to be better for feeding than others. Our aide feels that music helps as well as a tiny dose of CL-Sinemet to help with movement. After many years of use, I feel the CL makes her contractures more intense. I defer to our aide in this topic.

Using a nebulizer, DuoNeb aka Ipratropium Bromide & Albuterol Sulfate strangely seems to calm and relax discomfort. She also commonly experiences discomfort from reflux, but a dose of Gaviscon usually takes care of that.

I really don't know how this would be readily be managed in a facility environment. Our aide tells me that in our area the staffing levels are usually 1:13. Feeding a tedious, time-consuming task. I can only imagine the trying this with 12 other patients needing attention. Meals seem like an optimal time for family to visit.

I hope something in here helps you to help your LO.

This is so hard. Hugs to you.

[ilovedogs7 in reply to Red1990]

thank you for your reply. This is helpful.

It is so heartbreaking. I just wish it was a disease we all know about. Not this 😓

Sending hugs to you too 💔