Hi. My dad is in the advanced stage of PSP. He has been having more and more difficulty lately moving and swallowing and doing most things. We rushed him to the ER because he was struggling to breathe one morning and was wheezing. They intubated him, with our consent, because he was unable to get the required amount of oxygen otherwise. The doctors said that he is unable to breathe on his own and the intubation will be permanent. He is also being kept on Norepinephrine. The doctors don't give us much hope at this point and said that we should prepare for the worst, but at the same time this condition can last for days and weeks. I feel terrible seeing him like that, conscious and intubated, unable to talk and move most of his body. I was wondering if a tracheostomy might offer him more comfort compared to the intubation, for the time he has left. I don't even know if he wants that or how to even explain it to him and ask for his consent. We hadn't discussed this before as we didn't know it would come to this. It would help to hear any similar stories or experiences or some advice. Thanks.
Should I consider tracheostomy: Hi. My dad... - PSP Association
Should I consider tracheostomy
Hi Doris. So sorry to hear about the latest development with your Dad. I presume that chest Xrays were also done to rule out pneumonia , etc... In spite of a tracheostomy being a surgical procedure , there is no question that a tracheostomy is more comfortable and functional for the individual. Intubation is typically performed first as the need for oxygen asap takes precedence. However, in the event that a patient's need for long term mechanical ventilation is determined, a tracheostomy would then be performed. I would express your feelings and concerns to your Dad's doctors and discuss this. If you encounter a cold reception , don't be intimidated. The staff should be advocating for your Dad also !
The patient's well being should come first ! Good luck and I hope that your Dad will be much more comfortable soon.
💜 Elise
DorisVThe muscles and nerves that support breathing get weakened in PSP affecting breathing that necessitates ventilation into the lungs.
While endotracheal intubation passes into the mouth and through the vocal folds to provide ventilation into the lungs, the patient can not use the mouth for speech and swallowing. On the other hand, a tracheostomy tube is placed directly into the trachea at the cricoid cartilage. That is to say below the level of vocal folds. So, tracheostomy is more comfortable as it frees the upper airway allowing the patient to use his mouth both for speech and swallowing.
Best wishes to you and your dad.
Hello Doris,
I am sorry to hear about the situation of your dad. I know how terrible it could be.
My dad was in the exact same situation two months ago; Intensive care unit, he was twice intubated and under ventilation because his muscles were so affected by the disease.
After the first intubation we didn't want to resort to tracheostomy right away because it meant he would lose his voice and will need a feeding tube. We gave it a chance but it failed. He had porblems breathing and even reached high levels of Co2 in the brain that made him unconscious.
After the second intubation, we decided the tracheostomy is the way to go. My dad got the tracheostomy along with a gastric feeding tube. We didn't ask him, his neurologist just informed him before the procedure that this was what the doctors recommended and he put a thumbs up as a sign of agreement.
1,5 months later, he is home, unable to speak, drink water or eat food. PSP has progressed to the point where he only can slightly move his hand and feet. He is 24/24 hours under ventilation help (he breathes maybe 20% on his own and 80% are supplemented by the ventlation) and gets regular phlegm aspirations (3-4 times during a normal day, more during colds or pneumonia). He lost a lot of weight due to the feeding tube and was twice under serum due to dehydration. He got two pneumonias during this 1,5 month and one septic choc last weekend that almost killed him. And we don't know how long this situation could last, what he thinks of it or how he is managing and we are even afraid to ask.
We didn't ask him about any of the procedures becasuse of many reasons:
- We didn't want to put him in front of that choice because we felt scared for him.
- My family is a bit religious and for us we don't get to choose death, only god will.
- We had hope that he will slowly get rid of the ventilation's help (which we tried and it failed)
- He was spositive and optimistic and was hanging tight to life, which made us don't tell him because we thought we know what he wanted.
Now long story short: it is a miserable situation he is in. We have two nurses to help , day and night. I can feel sometimes the pain he goes through and it kills us. I wish we did ask him. At least that would make living with the situation way easier. If you have it in yourself to ask him and you know you can live with that decision that he makes, please do. Nobody deserves this.
Sending a lot of love and support towards you and your family.
Feel free to reach out if you have more questions.
Hello Doris V,
I am really sorry for the situation you are in, but just wanted to let you know you are not alone, my mother is exactly in the same situation. She is now in the hospital in the ICU and under ventilation, but the only difference is the that she had a lot of episodes of striders two years ago and we insisted to have tracheotomy to be able to breath. I know their condition is considered to be challenging for doctors because they are not used to face such cases with PSP and its complication, but as in our religion Islam we always try to do our best and then let things under the care of Allah he will choose the best for them.
Take care
Reema
Hi DorisV
I'm really sorry about the situation
My dad had a PEG tube when he was in an advanced stage and that was not a good choice, we realized later
If the patient's quality of life is already very low, any surgery is going to cause them pain and aggravation and their suffering may be prolonged
So this is something to be considered, if their body is already giving up, then is it required to keep them alive - if the patient can eat, drink, communicate, read the newspaper, play with their grandkids and have a generally good life, then procedures like these can help the patient - if they just prolong their life and they are still suffering, as a family it needs to considered if it's worth it
Best wishes
I'm so sorry you’re going through this; I completely understand how agonizing it is to watch a loved one in such a vulnerable state. My mom was in a very similar position last January. when she was intubated, seeing her like that—conscious but unable to speak or move—was just devastating. Ultimately, our family decided to go ahead with a tracheostomy, thinking it might give her some comfort and allow us to bring her home. Even then, we knew we were counting days, weeks, maybe a couple of months.
Unfortunately, she developed an infection from the surgery, which sent her back to the ICU, and she passed shortly after. While tracheostomies are generally considered safe, on some dark days, the whole family carries the weight of wondering if we added to her suffering. I think we would have still made the same call- because it lets your bring the patient home. The countdown clock doesnt stop. The anxiety of wondering every minute you are away- is this the last minute-doesnt go away.
If your father is overall strong- you should consider it- it will be less painful than the nasal tube. AND there is no right-wrong choice. even the dr's dont know what to do next. the tracheostomy allows you to take the patient home, and there are pluses-minuses of that. But there is no quality of life either way!
this stage of PSP is truly brutal—it’s like losing them little by little everyday, and the feeling of helplessness is overwhelming. My heart goes out to you as you navigate this, and know that whatever decision you make will be out of love and care. We are here to listen.
I am so sorry your loved one is experiencing this and for the difficult decisions you and your family are faced with. My husband (56) Is in the early chocking and aspiration stages of throat atrophy.I would be concerned about how anesthesia has been known to exasterbate PSP symptoms. I would also make sure your loved ones Neuro/motion specialist is on board and can evaluate that going through this procedure will positively outweigh the possible/probable negative complications.
I would also see if you can find any case study with regard to this being a viable option considering that its a result of PSP. For instance has it been performed successfully on a person with a neuro degenerative disease as opposed to someone without a compromised brain dictating the damage.
Godspeed to find the best answer for your loved one.
Acting out Dreams
He said, "I'm dying today."
Sudden loss of ability to move?
