Ugh. I am so frustrated! I really would like to hear from someone who has been in a similar siutation to this and how you dealt with it.
Myself, my husband, and our two daughters, ages 15 and 10, live with my parents. My father had a benign pituitary tumor surgically removed well over 10 years ago. However, the surgeon was unable to remove all of it because of a concern for bleeding. When my father left the hospital he was given a prescription for medication he was supposed to take orally to suppress further growth of the tumor. He never took it - ever. Surprise - his tumor grew back! And now it is bigger than ever and is starting to affect him in some very disturbing ways. He has made it very clear that he does not want to have surgery again and has no interest in prolonging his life.
Of course, his vision is failing. He experiences involuntary eye movements. His memory is also terrible. He was just hospitalized because on Friday he started talking nonsense, mostly real words but very random, and kept repeating himself over and over for the next two days. He would say things like "Mr. Gorbachev, tear down this wall, red, yellow, black" over and over. This lasted for two days before my mom called the doctor. It about drove her nuts, because she would tell him he wasn't making any sense and asked him to stop but he wouldn't. I don't know that he had any control over it, actually. Anyway, the Dr. told her to take him to the E/R. We couldn't get him out of his chair and so we called an ambulance. They had to take him forcibly, and all the while he was still babbling about nothing. It lasted until the E/R folks gave him a sedative and he finally fell asleep. So that was Saturday. Another MRI (one of many) in the hospital confirmed his brain tumor is still growing. The hospital of course does not understand (care?) that this is a man who hates hospitals, doctors and has complete distrust for anyone in the medical field. He is a very combative person especially when he feels people are trying to control him. He has left the hospital AMA before, has called the police from the hospital and told them he was being held against his will, you get the picture. We were hoping beyond hope that they would just do the surgery while he was in the hospital, sedated, so he couldn't resist. But the doctor said they cannot do the surgery right away. So they are releasing him today from the hospital, just as they have done before, with a prescription for eyedrops (which I guarantee you he will not use) and instructions to schedule an appointment with the neurosurgeon to have the tumor removed. As expected, he has already made it clear to my mom that he will NOT have the surgery and she needs to come pick him up.
The symptoms are getting worse, as anyone in their right mind could have predicted. He used to have spells now and then that would last maybe an hour where he couldn't communicate and would just sort of babble but this time he "left us" for 2 days and it was SO stressful for all of us. The part that hurt me the most was my 10-year old little girl crawling into bed with me saying "mommy, I'm scared."
The frustrating thing is that either he can't understand how this is affecting everyone around him - hurting them, scaring them, stressing them out - or he is just too fixated on his own self to care. We live with them due to a financial need and wouldn't have anywhere else to go. Also my mom is not in the physical condition to take care of her two-story house and her needs on her own anymore, so leaving her would just make things worse for her.
I just don't know how to deal with this anymore. What are we supposed to do when it gets so bad that he "leaves us" and doesn't come back? Or becomes completely blind? Or has a stroke or is paralyzed? Who will take care of him? My mom is in no shape to handle that. My husband and I both work. They are of limited means and all of these E/R and hospital visits are very quickly draining their savings account. She wouldn't be able to afford to put him in a "home" or have full-time care for him.
I feel like no one outside our family (including the doctors) understand what we are going through. Eventually this tumor will take his life, I have no doubt. I can accept that. Death is inevitable, and he has lived a long life. It is the suffering my family will be forced to endure due to my father's stubborn refusal to treat his tumor that is concerning me most, his inevitable decline and worsening symptoms. I am wondering how long this will last before it's over? Has anyone been through a situation like this? How long did it last? How did you cope? Someone, please talk to me...and if you have a moment, please pray for my family. My parents names are Gary and Carol.
Thank you so much for anyone taking the time to read this.
I don't know what type of tumor your father has but it sounds like a prolactinoma since suppressive medications worked (or rather would have worked on it).
The doctor as most doctor did not, as most did not and still do not - fail to understand that pituitary tumors have a tremendous effect on the emotional part of the person. I know a lot of people with them and most are diagnosed with depression and some even bi-polar or more. All of this is directly related to the lesion and should be treated as such, but alas, now that there are separate nice little pills, they try to treat it with the pills and sometimes that may or may not work since the body is fighting every step of the way.
If your dad was treated at a pituitary center, likely they would have done radiation after surgery if he was not compliant with the meds to prevent the tumor from getting large but it sounds like he did not get follow up. There is an adage - once a pituitary patient, always a pituitary patient. We do not like it but we cannot escape that our condition does not stay static and the emotional aspects of course, fights this.
In my case I am the patient and my husband was the long sufferer. For your father - an ER is simply not appropriate and he needs to be seen by a pituitary specialist. You should be able to send the films (CD) that you have now and try to do things as remotely as possible given his disposition.
But he needs treatment. I would contact pituitary centers. I will PM you some information. I would also contact the expert here.
I absolutely agree with you that he needs treatment. It seems everyone, except him, has an understanding of that need. But he absolutely refuses. And his family will have to deal with the consequences of that decision. It's so unfair of him to do that to us. Thank you for reading my message and responding.
At least keep up posted and if you need, you can blow off steam here. But at this point, your dad is probably mentally unable to make decisions that are good enough that thoughts about himself and his family and the consequences are not even there. It is almost a form of dementia.
Thank you so much for taking the time to talk to me. It really does help. Believe it or not, yesterday Dad said that now he wants to get the surgery because his "wires are shorting out". I am trying not to get my hopes up because he has agreed to the surgery before and then backed out. Seems like he was pretty coherent and knew what he was saying so hopefully he sticks with his word. His main concern is how much it will cost and he doesn't want to do it if they can't set up a payment plan. I am sure most people can't afford to pay for something like that in one lump payment, so I imagine my mom will be able to make arrangements with the surgeon. He has also agreed to take the 7 medications that were prescribed to him when he left the hospital - huge surprise, but again, we will see if he actually follows through with it. I will keep you updated. Trying not to get my hopes up, but it's hard not to....
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