AboutMargot RN BScN CGN Expertise I nursed my own Mother and Grandmother at home when they were dying so I have personal experience with the emotions involved. I have also spent the last 15+ years as a Registered Nurse caring for The Elderly and Terminally Ill and it has brought me great satisfaction. I am willing to answer any questions I can.
Experience
Past/Present clients Hundreds of Long Term Care Residents as well as hundreds of Cleitns and families in the community (including my Mother and Grandmother).
Question I am going through a difficult time. My father has almost past away 3 times since feb.25 2006. He had difficulty breathing and the doctor ordered a heart cath... He was okay they said and a piece of plaque broke loose and he had a major heart attack 5 days later. He had 2 other occasions of near death due to CHF and Afib. They found a growth in his lungs shortly after his heart attack. Which was 9 mos. ago. I have been taking hime to 4 different doctors and have had many tests taken. Now 3 weeks ago he went into the hospital with trouble breathing. He has been on oxygen since his heart attack.His breathing has continually gotten worse. Well after admitted to the hospital again for some additional tests. He went down hill fast. They had to put him on a ventilator and his body started shutting down. We just found out 5 days ago after being on this ventilator for apprx. 3 weeks now that he has stage 4 non hodgkins b cell diffused lymphoma and it is in a progressive stage. There is nothing they can do for him at this point. The doctors said his immune system is too weak and is in his bone marrow. We also found out that he now has pneumnia and staph infection. He has a 7 blood transfusions and has been on dialysis. He has tubes coming out of every orface of his body. He has been in a specialized ICU unit and my mother has to decide on whether or not to pull him off the ventilator. At first they said it could be minutes to hours. Now it may be a few days before he passes if it it removed. His body has shut down but, he is brain is still in tact. Well, he has been sedated though. They are weaning him off of the pain med. and sedation for him to be more aware. We have told him his situation. He first said that he understood and we let him know that he needs to rest and stop fighting and go with the lord. Then he changed his mind and so this is why they are trying to get him more alert to help with the decision. They have to take him off of the ventilator he is on in like a trach. and then run a feeding tube througn his groin if they do this. They have told us that he may not survive it and he will eventually get sicker due to infection vulnerability. They have weaned his meds. the past few days and is getting really irrritable. I am wondering if it is spreading to his brain too. Anyways, all together this is a difficult situation. My mother does not want to take it out though and let him pass if that is not what he wants. Although, I do not think he is well enough to understand and make the decision. Plus, this is worse on him coming off of his meds. The meds. are leaving slowly due to no kidney funtion but, he is getting dialysis everyother day. We have requested a DNR but, am trying to keep him okay for the next few days as how aggressive to treat him. It is a shame that we didn't find this cancer out before the vent. was put in. He could of past away more natural. Now it is us making the decision for him and I am afraid that he is going through more misery. He is such a fighter. I have told him he does not need to fight anymore, etc... He is getting aggressive and am wondering if it is going to his brain. Is there any type of advice you can give me. I know there is nothing anyone can do or say to make things bettter but, would like some input and it helps to talk about it. The holidays are going to be a reminder now of his death. I am hurt that the doctors did not find this for the past 9 mos.. Until it was too late to even talk to him of what to do. He always said if there was no hope then he did not want to be on a machine but, it was more like brain dead. His mind is there but, his body isn't. I have to take care of my mother now . Which I have been basically taking care of both of them for the past few yrs. .. I am 30 yrs. old and I have 2 children divorced with now help from there father and am over whelmed...My father just turned 70 so it isn't like he is younger but it does not make things any easier. I feel like I am going to be lost without him but, I hate to see him in misery. Any thoughts or response I am sure would help me some.
Answer Hello Michelle and thanks for writing,
I am very sorry to read about your father's struggle - it must be very difficult to watch.
We always like to involve the patient and follow their wishes, but this is complicated when the patient is very sick and may not be fully aware of the implications of their decision. People with liver and or kidney failure have toxins build up in their system which can lead to confusion and agitation - so it's difficult to really know how cognitively aware your Dad is. The doctors may do a simple mental test (like ask him where he is, the year, etc) to determine his cognitive status as those who are confused are not usually consulted about life and death decisions, even their own.
My own Mother did not want to give up (I think she didn't want to let us down and worried for her children) and she even refused Morphine as she saw it as a sign of weakness and a step towards letting go. We struggled with the same issues but decided to giver her another Narcotic which she didn't recognize to promote her comfort - although it probably did shorten her life, she had very little quality of life left and as much as it hurt, we wanted to do what would keep her the most comfortable.
This is a decision your family needs to make together so no one if left feeling you did or didn't do the right thing, these thoughts can tear families apart. My personal feeling is to do whatever will promote your Dad's comfort, even if that may shorten his life or make him less conscious - but this is a decision for your family to make. Do not be afraid to ask as many questions as you need to from the nurses and doctors to make sure you know everything you want and need to before you make the decision; you can request a Care Conference where the team of doctors and nurses will sit with your family and discuss everything - these are often very helpful for families facing difficult decisions.
I hope this helps a little and my thoughts are with you. I too lost both my parents in December and Christmas is still a time of mixed emotions for me, but as they say "time does heal all wounds" and now I only remember the good stuff, and the painful stuff is forgotten (or subconsciously buried I suppose).
