A Parent's Living Will, I Had No Idea...

*Revised* If only I had known.....Almost three weeks ago my dad, who is 58 (at the time of this writing), called and excitedly said, "My Little Girl (his name for me), you'll be proud of me, I finally did what you have been telling me to do, I made a Living Will" (See end for details and information). That was pretty good news since most people never take the time, or they just don't want to think about things like that. Nonetheless, he was very proud of himself, as was I, for finally accomplishing this task. He frequently spoke about what I was to do in the event "something were to happen" to him; each time I explained the need for him to put it in writing so I would have more of a legal obligation to follow his orders, rather than going with my personal wishes to keep him around. To make sure I understood exactly what he wanted he went over it with me word for word. I received many in depth examples of, if he can't be just the way he is now then not to try to save his life. He did not want to live if was unable to go fishing or think for himself, or if all he was capable of doing was drooling, etc.,. I told him I understood exactly what he wanted and I would do what he wanted me to do. I had no idea that two days later I would receive a phone call from his best friend telling me my daddy had a major stroke and he was not expected to make it through the afternoon.
My heart sank, the thought of not ever being able to see or speak to him again made me ill. I immediately called the hospital he was taken to, in Mansfield, LA, and spoke with an ER nurse, he said my dad had a large bleed in his brain, was unable to talk or move his right side but his condition was stable and they were about to transport him to the Neuro ICU at LSU Health Sciences Center in Shreveport, LA. Shortly after his arrival at LSU I received a call asking me to consent to surgery to stop the bleed in his brain, and of course I did. He made it through surgery but was now on a ventilator and they were having to keep him sedated because he was attempting to get out of bed and pull out tubes and lines.

By day 3 the hospital staff said he would not follow commands but would respond to painful stimuli. They had also tried to take him off the ventilator but that was not successful. By day 6 there was no change in his condition. My younger brother called the hospital to check on our dad and just happened to get a resident doctor on the phone, we usually only get to speak to the nurse taking care of him. This doctor told my brother we needed to start thinking about whether we wanted to try to rehab Dad or withdraw care because he would probably never be the man we know and love, never walk or talk again. Based on what he had heard, my brother had his mind made up, he knew what my dad wanted and this wasn't it. I spoke with a nurse that voiced the same opinions regarding Dad's prognosis, none of it sounded promising. The nurse in me keeping thinking, "if I could see him with my own eyes I would know what to do and the choice would be easier". As his "little girl", I wanted to hear something better, something hopeful. Even though I knew what he wanted in this circumstance, I needed to know the situation was as dire as it sounded.

Day 7 I receive a call from a doctor, she said all of their attempts to wean him off the ventilator were unsuccessful (probably due to decades of smoking even though he quit 2 years ago) and they wanted my consent to give my dad a trach so they could make him more comfortable by removing the tube from his airway, so I consented. A couple of days later I get a call from a GI doctor wanting to know if I would consent to a surgical procedure to insert a G-tube (a tube inserted into the stomach via the abdomen to receive nutrition long term), so they could remove the NG-tube (a tube inserted into the stomach via the nose) because my dad's sinuses were beginning to break down. I explained to the doctor that I wasn't sure yet if we were going to withdraw care or try to rehab and I did not want to put my dad through an unnecessary procedure, he said they could wait another couple of days. At this point I felt even more compelled to see for myself, the condition my daddy was in. I had been trying for a week to go see him, it is about a 7 hour drive from our house to Shreveport, but my issue was our 3 school age kids. They were suppose to stay with our friend and neighbor but one of their kids contracted strep throat and we had to wait until all was clear. Then we were iced and snowed in for 2 days. My husband and I were finally able to go down to Shreveport to see him, with 3 out of 5 of our kids in tow.

Day 9, they did a CAT Scan of his brain right before we arrived at the hospital. That evening I met with the neurosurgeon that performed the surgery to stop the bleeding in his brain. She showed me his CAT Scan and explained what it all meant, there was no more bleeding and his brain was almost healed. She said she had expected him to wake up already and could not figure out why he had not. She also said that the area of the brain where he had the stroke she would expect him to have right sided weakness and the peripheral field of vision in his right eye might be cut off. She saw no reason he would not be able to recover and strongly suggested we give him that chance. A big difference from what my brother and I were previously told. She did want to get a MRI of his brain to make sure the CAT scan did not miss something. The MRI showed a small stroke to the left of the brain stem but she said he should still be okay.

During the week we stayed there I saw a few small improvements, but only after they turned off his IV pump of a high dose of strong pain medication. He was breathing on his own with ventilator backup a few hours at a time; I was finally able to get him to open his eyes for a few seconds; a couple of times when I held his eyelid(s) open his eye(s) would follow me; he began moving his right arm and leg and would sometimes squeeze my hand. I hated to leave, and as much as I wanted to stay until he got better we had to go home. I don't know if he ever heard anything I said to him, I hope he did because I told him how much I love him and need him, how much his grandkids would miss him and that he can be himself again.

In times like these it is difficult to think straight but I remember the many conversations I had with him. The problem with our conversations was he never told me what to do if there was even a slight chance he could recover, if the drooling and having someone wipe his bottom was only temporary. It may be a long, hard road for him, possibly a year or more but maybe less, he could still have decades left to live his life the way he wants to live it. If, no, I should say, When he gets better the trach and g-tube will be removed and the holes will be stitched closed. I CAN NOT let him go as long as that chance is there, even if it means he will be mad at me. It really is not up to me anymore, it is about his own will to live. I don't know if they will allow me to bring him closer to where I live so I can be there to support and encourage him but I am certainly going to try.

Please talk to your loved ones, let them know exactly what you want them to do in this situation. It is important to have Advance Directives, be specific about your desires, don't make the mistake of being too vague because your wishes may be disregarded, or taken to the opposite extreme (like my brother and I might have done) which is not reversible. You can pick up a form at any hospital or you can find them free online (see below), make copies and make sure your physician gets one.

Please check the following websites for more information:
Mayo Clinic Information on Living Wills and Advanced Directives
Download Your State's Advance Directives
National Institutes of Health Advance Directives Info
Do Your Own Will (Free, ease forms & Great information)

Living Wills and other Advance Directives are legal documents that speak for you when you're not able to speak for yourself, for instance, if you are unconscious or in a coma. They are used to describe your preferences regarding treatment if you are faced with a serious accident or illness.
It is important for all adults to have a Living Will and other Advance Directives they are not just for older adults. Unexpected end-of-life situations can happen at any age, so it is important for all adults to have advance directives.

Advance directives: More than just living wills

Advance directives are written instructions regarding your medical care preferences. Your family and doctors will consult your advance directives if you're unable to make your own health care decisions. Having written instructions can help reduce confusion or disagreement. Anyone age 18 or older may prepare advance directives.
Advance directives include:

• Living will. This written, legal document spells out the types of medical treatments and life-sustaining measures you do and don't want, such as mechanical breathing (respiration and ventilation), tube feeding or resuscitation. In some states, living wills may be called health care declarations or health care directives.
• Medical power of attorney (POA). The medical POA is a legal document that designates an individual — referred to as your health care agent or proxy — to make medical decisions for you in the event that you're unable to do so. A medical POA is sometimes called a durable power of attorney for health care. However, it is different from a power of attorney authorizing someone to make financial transactions for you.
• Do not resuscitate (DNR) order. This is a request to not have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. Advance directives do not have to include a DNR order, and you don't have to have an advance directive to have a DNR order. Your doctor can put a DNR order in your medical chart.