Now I Have to Play God? So Daddy and I visited a lung specialist today who confirmed that there is a mass in his chest. With daddy's advanced age and other conditions, he feels it may be best to just let nature take its course.
The thing is...Daddy didn't make any advanced directives when he was of sound mind, and I'm left with the burden of deciding whether we should keep him alive when this mass rears its ugly head.
I have no support system as many of you know so I feel very alone right now. In a normal world I would discuss with the family but I can't take being railroaded by them right now or being called selfish for a DNR decision.
I'm angry. Why does this fall on me? Why should I suffer because he chose to smoke?
I'm afraid. I don't want this responsibility. I'm sad. I'm essentially left to decide his ultimate fate. I feel like a murderer.
This isn't fair. I don't know what to do.
We made our decision of DNR and no life extending measures for Mom when she went into the NH. She's 101, and the staff suggested we do so as anything like that would prolong her suffering and CPR would break her bones she is so fragile. As the cancer and dementia progress you will know what will be best for your Dad. God has a way of giving us a message if you leave it in his hands. (((((hugs)))))))
Having said that, a DNR can be defined as narrow or broad as you wish, at least in NJ. In my mother's case, we decided that we wanted intervention with a bipap if she was struggling to breathe, but if her heart failed and she had no pulse we did not want them intubating, shocking, or even doing compressions. We finally did agree to a meeting with Palliative care, only to learn that medicare and the insuracne companies are very involved in what qualifies as palliative and hospice. No wonder we were being pushed into one of those categories! We said no thanks to those people as well. When she was released from hospital into rehab, we (finally) realized that we could demand the same level of monitoring and preventative care for her that she was getting in the hospital. That was a revelation, as prior to that we were told that rehab and long term care are just "reactive" - i.e., they'll only treat something if it becomes a problem. My advice is to ask a lot of questions. Trust no one whose livelihood depends on the insurance industry. For now at least, they can't legally force you to do anything you don't want to do. So take your time if you have that luxury. When it's time for DNR you'll know, believe me.
Daddy never liked to talk about anything death related. He always thought he was invincible - hence his decision to continue smoking despite the doctor's MANY warnings.
I've been a ball of emotions today. Seeing Dad struggle with the oxygen tank really confirmed his frailty to HIM and me. He looks frustrated about the entire thing and I feel so guilty every time I leave him. Then I feel resentful for being placed in a position of having to feel guilty for needing (and wanting) to go to work.
I have decided to simply wait a while. A decision doesn't need to be made TOMORROW, and things are too stressful to even deal with a decision that major right now.
I found comfort in a book "Can We Talk About Something More Pleasant" by Roz Chast. It is a HILARIOUS depiction of the author's experiences while taking care of her aging parents. It literally got me through the day. I needed to laugh. It's an easy read!!!
Im my opinion, the Dr wanted to press you on the issue specifically regarding CPR, as they don't always have the time nor resources to find you and discuss whether or not you would wish them to proceed with CPR, and that goes for Anyone, not just your Mom at age 100, and still wanting to live.
IMO, the time when people fill out their Health Care Wishes, is normally a time when they Are of sound mind, are clear thinking, and would want their wishes abided by, even though at the time, it is a Very difficult decision to go along with them.
Our Mom had a very difficult time making those sorts of decisions too, at the end of my Dad's life too, for religious reasons, so I am most certainly not judging you.
Wow, 100 years old! That in itself is an amazing feat, and one not many achieve too often, you should be happy to have had your sweet Mom this long, and also that you come frome a good line of healthy DNA!
In the end, my recommendations to you are to decide on those most urgent decisions that require immediate attention and stick to them, acting as if you were your Mom making them, and if your Mom is still of sound mind, discuss them once again, and update her Advance Directive or 5 Wishes forms, and let them stand, this way, it is taken out of your hands at the time of high emotions. Then, there should be no guilt attached to those very tough decisions during a crisis. It is always tough though!
Dont put him thru this. You have many here's support --thise who have been where you are or know the pain and frustration of dealing with surgery that turns into long drawn out tumultuous recovery that sometimes never comes...just multi hospital visits to treat infections, woulnds that wont heal, dehydration, weakness when they cant get back in their feet.
Save you and your dad the heartache.
I definitely understand your Loving and Cherishing her, as I did my own Mom, God rest her soul. I too take care of my own 87 year old FIL, in my home, and have for the past 13+ years, and I (along with his Son) also am his Healthcare proxy. He and I have had many a discussion about end of life care and crisis care. He has an Advanced Directive which is very specifically completed, and I will abide by his wishes. At any time, should he wish to make changes, that too!
Having worked in Healthcare for 30+ years, including the Cardiac and Pulmonary department, I have seen on many occasions, patients "go down, and go unconscious" and unable to speak for themselves, and this is where those Directives come into play, as there is not a lot of time, sometimes only seconds, between calling 911 and the paramedics arriving, that CPR needs to begin, and checking to see if an Advanced Directive is in place, let alone call around to see if the Medical POA/HEALTHCARE PROXY is available for consultation, to make the crucial decisions to begin Cardio and Pulmonary Resuscitation, is not a viable option, and there could be the possibility that you aren't there with her at the time. Sadley, in some cases CPR was done, when the patient or family would have preffered that it not have been, and long term health issues then come into play. So honestly, "ask me at the time", is not a very smar decision.
I highly recommend that you research THE 5 WISHES. Which addresses Medical, Legal, Spiritual and Personal desires for end od life care, and is clear, consise, and addresses everything that I can think of for Loved ones discussing what is best for them. It also opens up a good family dialog, so that everyone concerned, or involved can understand the desires of the patient. But mainly, these are decisions the patient must make, and we as their Loved ones can abide by them with the confidence that it is what the Wish!
I love that you Love your Mom so very much, to do right by her, no matter how old she is! Age is just a number!
I don't believe Anyone should have a BLANKET Directive, and also believe that Advanced Directives should be discussed and Updated from time to time, as long as the Patient understands the decisions they are making.
stacey - you make some very good points. Things can happen very quickly and emotions run high. That's why these documents exist.