Fighting for My Dad's Life

Parting words

2006-10-05T12:40:00.000-10:00

Well, it's been almost three weeks since Dad's funeral (and my last post on this blog). It was a hectic few weeks. From planning the funeral to writing thank you notes to taking care of paperwork (insurance, investments, etc.). And, now I'm once again out of town on business, trying to get back into the groove of my life before dad's passing.

But, it feels different. Of course, I feel as if a burden has been lifted off of my shoulders. Of course, I feel a sense of loss and loneliness. What's different is that I feel a renewed sense of purpose and am truly at peace with myself. I did what I had to do. And, now I'm moving on. Some people are still worried about me because of all that I've had to go through these past two years and because I'm now the only remaining member of my family.

I'm okay. I have a lot of caring relatives and friends who have supported me through these difficult times. And, of course, I had some great people caring for my parents and sister in their time of need. They were our family's guardian angels.

At my dad's funeral, I took the opportunity to thank not just those people who were directly responsible for my dad's care in his final years, but I also thanked those who cared for my mom and sister. I wanted everyone in attendance to acknowledge these special people and to take a moment to re-examine their lives and the people around them, and to "re-appreciate" (if there is such a word) COMPASSION -- the elixir of life. Without the compassion of our guardian angels, my parents and sister would have gone a lot sooner than they did, and I would not have had the chance to spend as much time with them as I did in their final days.

I was at my dad's side when he passed on, as I was when my mom and sister did. Some people find it too difficult to watch their loved ones pass on. But, I didn't. My dad almost left us (without me) more than a few times, but he held on. His nurse coached me to encourage him to "move on" in his final moments, and those were some of the most difficult words for me to utter. He held on just long enough for me to be there by his side at the end. That was his final gift to me.

Not everyone gets to be with their parents when they go. I'm just glad that I was. I believe that they knew I was there, even in semi-consciousness. I also believe that they are with me right now as I "move on" with my life. Just as I encouraged my dad to "move on," so too must I.

You fought the good fight, Dad.

Thanks for giving me the courage to fight along with you.

The obituary and the moth

2006-09-14T09:04:00.000-10:00

Dad's obituary finally appeared in the local papers, letting the world know that he was gone. A lot of people I know read the obits. My dad used to read them all the time. I don't. This is only the third time in my life that I anxiously searched the papers for an obituary -- the other two times being when my mom and sister died in 2004.

So, it's official. Obituaries. They're the one "guaranteed" opportunity everyone has to get their name in the papers. Seeing dad's name in the obituary columns was at once sad yet so final. Like a period at the end of a sentence. The obituary noted that he was only survived by me. Alone. So, now I have three angels looking out for me. That's reassuring. I guess.

Last night as I was preparing the printed program for Dad's funeral, I suddenly saw a moth flying near the lamp on my desk. It startled me at first and then I said, "Hey Dad!" (see my previous posting about moths). When I woke up this morning, I saw a honeybee buzzing around one of the lamps near my bed that I had left on overnight. I turned off the light and the honeybee flew away. Out the window, I assumed.

When I went to turn off the lamp on the other side of my bed, guess what I saw sitting on the lampshade? You guessed it. Dad! I mean, a moth! (I assume the same one I saw last night.) Sitting pretty on the lampshade. So, I decided to leave the light on. Then, I looked down at the floor just below that lamp.

I found, not one, but TWO honeybees. Dead on the floor!

Had Dad the Mighty Moth fought off the Evil Honeybees that threatened to sting his dear son? Maybe if this were an animated movie. It sure was a peculiar scene. It's funny what goes through your mind at traumatic times like these. Everything around you takes on some kind of symbolism. I guess that's part of the mystery of life.

And, of death.

Truly at peace

2006-09-09T15:31:00.000-10:00

Today we held my dad's "final viewing" service for our relatives to pay their last respects to my dad prior to cremation. Before the service started, I went to say hello to dad and he looked SO peaceful. I was so relieved to see him looking good, wearing one of his favorite polo shirts and resting so peacefully. The service was held in the Buddhist tradition, with Japanese chants and incense offerings by all present. What was most amazing about this service was that I hardly cried. I think it was because I felt that Dad was truly at peace and so was I.

I guess I had no reason to cry because I knew he was happy and once again with my mom and sister. Or, at least, he would soon be with them. Buddhist tradition says that the deceased's spirit stays on Earth for 49 days before going to nirvana (heaven), so I'm sure Dad is enjoying his new spiritual form and checking things out around town as he never could before.

Dad's "angel" caregiver (who is half Filipino, half Caucasian) told me that Filipino tradition states that a deceased's spirit can often remain on Earth in the form of a butterfly or moth, and she thinks she may have seen my dad's spirit the other day. She was coming out of Dad's doctor's office and going to her car and, there right above the car door handle sat a moth. "Angel" looked at "Dad" and said a prayer to him. And, then "he" flew away.

Free as a...moth!

His final breath

2006-09-07T03:32:00.000-10:00

This afternoon at 1:45pm my dad drew his last breath on this earth. It was a peaceful end. I stood watch over him, along with his angel nurse and her husband. A few minutes before that final moment, we said a prayer for him and for us.

Thank God for allowing Dad to be with us these past six months.

Thank God for bringing his angelic caregivers into Dad's life.

These past six months were a pure blessing for me. An amazing journey with my amazing dad and his amazing caregivers. He showed me the meaning of courage. And, his caregivers and doctors showed me the meaning of compassion. Dad was allowed to remain on this earth with me for a reason. I may never fully understand that reason, but I must now live my life remembering his courage and their compassion.

As I wrote back in March of this year, "As long as we feel hope, there is hope."

Their strength is now my strength.

No pain

2006-09-06T01:01:00.000-10:00

Dad made it through yet another day and, again, I feel blessed. His breathing is still a bit fast, but he looks just like anyone else in a deep sleep. I keep thinking he'll wake up in a normal slumber and ask me, "Where am I?"

He still displayed some discomfort when we moved him today, so his doctor paid my dad a visit to see for himself how Dad was doing. The doctor seemed quite amazed at how stable my dad's condition is, despite being off feeding for over 5 days now. But, the expressions of discomfort had the doctor concerned, so he decided (and I agreed) to increase the dosage of pain relief medication on Dad's patch. At this level, supposedly, he should feel no pain and be in total comfort -- the ultimate goal.

I continue to be amazed at my dad's resilience.

He truly is a fighter. And, an inspiration.

My amazing dad

2006-09-05T01:28:00.000-10:00

Here we are at the end of another day with my amazing dad. It's been four days since we stopped his feeding and he's still hanging in there. What a fighter! Each new day with my dad is a blessing.

I hope he's not struggling with the idea of leaving me behind. Maybe he didn't hear me last night? Maybe he heard me crying through my words. Dad's "angel" nurse told me today that the next time I tell him to "follow the light" or "don't worry about me" I mustn't cry. I need to be strong when I say those words, she said. He might worry if he hears me crying. It's not going to be easy, but I'll try.

Dad's breathing is becoming a little shorter, so I think the time is nearing. He still looks okay. Thinner, but still okay.

I hope he doesn't go while I'm asleep. I want to be there to say goodbye to him...

Follow the light!

2006-09-04T03:12:00.000-10:00

It was 2am and I had just woken up from a short nap in the extra bed in my dad's room. I went over to look at Dad and thought I noticed that his breathing was a little slower than usual. I called his nurse ("Angel") to check on this. She said his breathing was slowing down, but he was still okay. I also noticed that his eyes were opening, so I stood in front of him and waved so that he could see me. I'm not sure if he did or not, but I'm hoping he did.

After Angel shifted Dad in bed, as she does every two hours, he lay there facing up with his eyes still open. Angel said to me, "Tell him to follow the light. Tell him that you'll be okay." Those were the words that she told me would help him let go of his earthly bonds. I reluctantly, but willingly told him...

"Follow the light, Dad! Mom and Sis are waiting for you! I'll be okay! Don't worry about me!"

Those were some of the hardest words I've ever had to say.

Of course, I was crying the whole time.

But, I feel better now.

Whenever you're ready, Dad...

Spending time with Dad

2006-09-02T22:50:00.000-10:00

Beginning tonight, I'm sleeping in the same room with my dad at his care facility. There's an extra bed in his room and his nurse said it would be okay for me to sleep here from tonight. I don't plan to be here 24 hours a day, but sleeping over is my way of showing him that I'm there for him till the end.

Dad's been off his feeding since yesterday but he still looks good. His breathing is regular and his skin color is good.

Today, a family friend came by to say farewell to my dad and it was quite tearful. She told him how she remembered all the talks they used to have (my dad loved to talk about his job at the Health Dept. and his experiences during World War II). And, she told him not to worry about me and said he could go whenever he wanted to.

Dad's doctor said that giving a loved one "permission" to go when they are nearing death would help ease them into the other world. Perhaps I need to give "permission" myself, but I'm not ready to say those words just yet. I know my dad will go when he wants to, without my telling him.

Whenever Dad goes, I know that he'll go peacefully. He has the greatest caregivers right now and I'm just glad that I can spend his last few days together with him.

Crossing that line

2006-08-30T22:10:00.000-10:00

Today was the day I dreaded most. The day that I would have to make the ultimate decision of my dad's life.

He started "crossing the line." The line that his doctor said yesterday Dad was nearing.

I went to visit Dad today and his "angel" nurse warned me beforehand that he wasn't doing well. He had started moaning in pain almost constantly from last night. Just as his doctor had predicted at our meeting yesterday. What an amazing doctor!

When I saw Dad today, sure enough, he was moaning. Not particularly loudly, but he was definitely not happy. "Angel" said that he would moan even more when they moved him in bed (they have to shift him every two hours due to his bed sores). He has a new high-dosage pain relief patch on his chest now to help ease the pain. Yet, he continues to moan in pain.

He was crossing the line.

And, so was I.

Reluctantly, I decided today to let nature take its course from Friday. I'm going to allow "Angel" to remove Dad's feeding tube on that day and continue with full comfort care measures only. Although depriving him of any sustenance sounds cruel, "Angel" said that he will not feel hungry because he has other pain issues. Stopping his feeding will let the forces of nature take over. Painlessly and mercifully.

Today, after visiting Dad, I was driving home and saw a beautiful rainbow in front of me. As I turned the corner and looked back in my side-view mirror, I could see the end of the rainbow.

It was right over the church where my mother and sister are buried.

That was my sign.

Mom and Sis are saying it's okay.

It's almost time.

Meeting with Dad's doctor

2006-08-30T02:17:00.000-10:00

Today, I had a good long talk with Dad's doctor. It wasn't a particularly "critical" meeting. It was just an update and a chance for the doctor to find out where I am in terms of preparing myself for Dad's eventual passing.

Basically, Dad is still stable. He is responding to the anti-biotics to fight the staff germ that was recently found on his bed sores. It's apparently a nasty staff germ, called MRSA, that can be fatal to elderly people if not treated properly. Fortunately, Dad is responding to the anti-biotics well, so it's a so-far-so-good situation. But, the thing about this particular strain of staff is that it might become immune to the anti-biotics and turn into a "SUPERgerm." Then again, it might not. Let's hope it doesn't. If it turns into a supergerm, then there is a risk that it might infect other patients in my dad's care home and that would not be good.

One change that will be taking place eventually is, the doctor has suggested we increase Dad's anti-pain medication since he seems to be in a little more pain when they move him. So, he'll be in less pain, but he will also likely be more sleepy, so I may never be able to see his winning smile ever again. Sad. The doctor said that increasing anti-pain medication is usually a sign that a patient is moving one step closer to the end.

But, the doctor assured me that we may be one step closer, but we haven't "crossed that line" yet, so I can continue to live my life.

Anyway, I had a very, very good conversation with Dad's doctor today. I don't think I've ever spent that much time with a doctor before nor ever felt so comfortable talking about death. He is indeed a special doctor. Incredibly compassionate. A very rare breed today.

Although the end may be nearer for my dad, I'm not worried. Sad, of course, but I'm confident that everything will happen just as it should.

Better than I expected

2006-08-28T15:33:00.000-10:00

This morning I got back from another long business trip and visited my dad soon after landing. I had been informed by his nurse ("Angel") that some of his bed sores were not healing well, so that wasn't a good sign. That was last week.

But, today, Angel's tone was totally different! She said Dad was responding surprisingly well to his new antibiotics and even his doctor is pleased with Dad's recent progress.

What a relief!

During the past week, I had been thinking about losing Dad after his gallant fight over these past six months -- months he wasn't expected to have. I was preparing for the worst but, instead, got some good news!

I guess it's not his time yet.

When will his time be? Only God knows.

I'm still counting my blessings every day.

Signing away my dad's life?

2006-08-17T21:46:00.000-10:00

The other day, I signed a document that officially declared my dad to be at "No Code" status, which means that in the event of a medical trauma we will not call 911 to get other medical professionals involved in saving my dad's life. I will only allow my dad's nurse (his "angel") and assistants who are familiar with him to apply life-saving techniques, but NOT CPR. If they cannot save his life, we will let Dad go.

The document I signed was titled "Code Status: Cardiopulmonary Resuscitation (CPR) Order. There were check boxes for "CPR (FULL CODE)" and "NO CPR (NO CODE)." We checked off the box next to "NO CPR" and I signed on the lines that read "Client/Representative Signature" and "Signature of Resident/Guardian."

I looked at the signed document before faxing it back to my dad's nurse and took a deep breath. Was I signing away my dad's life? "No," I told myself. "You're doing the right thing."

It was a heavy-duty moment of reflection.

But, I'm not feeling any guilt.

My dad is still hanging in there and stable. One of his wounds has an infection, but "Angel" said that he's responding well to the antibiotics his doctor recommended and will probably continue to be fine.

If he doesn't respond well... We'll cross that bridge when we reach it.

Right now, that bridge is still far away.

Moving on

2006-08-06T15:40:00.000-10:00

I'm a little behind with my postings here. Early last week, we moved my dad to a bigger care facility -- still private and still owned by my dad's "angel." The facility is licensed to take in patients requiring my dad's level of care, so he continues to be in good hands.

The last couple of times I've gone to see him in the new facility, he's been either sleeping or half-sleeping, so I haven't been able to enjoy one of his winning smiles lately. But, "Angel" said that he gave her a BIG smile on the day he was going to be moved and then again after he got moved. I'm sure he sensed something good was going to happen and I'm sure he was happy that his "angel" was going to be with him all the way.

My dad's "angel" and I were joking the other day that we shouldn't say that my dad is going to be in a better "place" because that's what people say after someone has died. So, instead, we say that he has moved onto a better "facility."

A subtle difference but, from my perspective, it's a BIG difference.

Full Code or No Code?

2006-07-13T18:38:00.000-10:00

Today I spoke by phone with my dad's nurse ("angel") and we had another very good talk about my dad's condition. He's still doing well and we're getting ready to move him to a slightly bigger facility sometime in August.

Part of our conversation dealt with the "code" status that we want to keep my dad at in the event that he experiences some kind of life-threatening trauma. Patients like him must be placed at either what is called "Full Code" or "No Code."

A typical example of a Full Code situation is: after a patient experiences some kind of trauma and you call 911 for an ambulance and the paramedics come to the patient's aid using CPR and attach life support mechanisms that keep him/her alive before and during hospitalization.

A No Code situation is: life saving techniques are initiated, but not full-on techniques as described above. This is the code that allows people near death to die with dignity.

My dad has been at Full Code status since being moved out of the "nursing home from hell" in March, but today I agreed to change him to No Code status.

The reason? As my dad's doctor was filling out the paperwork for the move to the bigger facility, he noticed that Dad was at Full Code status. So, he asked "Angel" why this was and she explained that his son (that's me) wanted to have him sustained long enough (in case I was out of town) so that I could be there at the time of my dad's passing. The doctor reminded "Angel" (who then reminded me) that my dad is so frail right now that he probably wouldn't survive a CPR intervention and would likely only suffer if his life were prolonged by support mechanisms.

In discussing the status change, Dad's doctor put it this way, "There is a fine line between Dad's dignity and his son's emotions."

My thinking about my dad's end-of-life scenario has evolved quite a bit since March and I am now more prepared than ever to accept my dad's passing without aggressive life support actions. I never expected him to live this long after being moved from the "nursing home from hell," so every additional day that he is here on Earth and each additional time that I get to see him are pure blessings.

Of course, I want to be there when my dad eventually goes (as I was when my mom and sister died in 2004, just seven months apart) and, if that happens, that would be ideal. If it doesn't, I will accept that. I am now fine with just having his nurse and doctor do all that they can to support my dad's life within their own means, short of calling 911. At this point, my dad's life is totally in their hands. I am not going to let my selfish emotions get in the way of having my dad die with dignity. Right now, I believe that he is living with dignity, without suffering, and continues to be happy. I want him to stay this way until his very last moment on this earth.

I hate thinking about my dad's passing, but it is an inevitability. But now, when I do think about it, I visualize his passing with dignity.

And, that is the way all of us deserve to go.

A Happy Father's Day indeed

2006-06-20T06:43:00.000-10:00

It's been awhile since I posted any updates about my dad on this blog, but that's because I've had nothing really new to report other than that he continues to do well. As his caregiver ("Angel") likes to say, "No news is good news." So, while I was away for a few weeks on an overseas business trip recently, I had to fight back the urge to call home, trusting those words.

But, she was right.

I got back from my business trip just in time for Father's Day and was pleased to see dad looking good. He was half-sleeping when I visited, but when he opened his eyes and gazed at me, not only did he give me his winning smile, but his entire face literally transformed into a full-on expression of joy.

That made the long plane ride home worthwhile.

He was indeed a happy father and it was truly his day.

"He's out of the woods"

2006-05-09T01:34:00.000-10:00

Just two days ago, I heard the five words I dreaded most...

"Your Dad's going to die."

This morning, after arriving home from my business trip, I heard the five words I longed to hear...

"He's out of the woods."

It sounds like a cliche but, to me, those were the words I wanted to hear after an anxious 48 hours. I went to see Dad this afternoon and his eyes were wide open and he looked relaxed. He still had a bit of phlegm in his cough, but nothing to be worried about.

His caregiver (a.k.a. "Angel") recounted the harrowing night that she spent rescuing my dad from the jaws of death. It was a combination of experience, alternative therapy and prayer that brought dad through what might have been his last night on Earth.

I listened in awe to her heroic (as far as I'm concerned) story and again thanked God (and my deceased mom) for bringing this lifesaver into our lives.

"Angel" calls what she does for a living "God's work."

Indeed.

What a difference three hours makes

2006-05-06T15:10:00.000-10:00

My cel phone rang.
It was 5:30 a.m.
I was on an overseas business trip.
It was my dad's caregiver calling.

"Your dad's going to die."

The five words I dreaded most.

But, then in her next breath, she said...

"Actually, no, he's not. We thought he was, though."

Last night, Dad aspirated. He had water accumulating in his lungs and he couldn't spit it out. His caregiver (also a respiratory therapist, fortunately) detailed to me all that had happened in the ensuing six hours after she found Dad aspirating. Her words were a blur. I just wanted to know if he was going to be alright.

He was.

"You don't need to rush home. You can come home when you originally planned."
Which will be tomorrow.

Apparently, at around 2 a.m. they had called me and also sent me an email, but I was fast asleep. The content of the voice and email messages was that Dad wasn't looking good.

Three hours later, when I finally heard the phone ring, the news was much better.

It wasn't a false alarm, but it was certainly an ALARM.

Once again, the power of my dad's caregiver's and doctor's love and compassion, as well as my dad's own will to live came through.

Apparently, even Dad's doctor was on the phone with the caregiver throughout most of the recovery effort.

"No other doctor would do this, you know," she reminded me.

I know. Thank God for compassionate doctors like him.

So, this became the second time in five months that Dad almost left us.

But, he turned away from Death's door. Again.

Why? No one knows.

Well, I guess God knows.

Hang in there, Dad! We love you!

The phone call - Freedom!

2006-04-11T22:17:00.000-10:00

It was the morning of February 27th. My cel phone rang and it was Dad's doctor from the nursing home. He had called to inform me that my time was up. No more delays. The speech therapist had determined once and for all that Dad was never going to eat through his mouth again. It was time to pull Dad's plug. The doctor had a duty to fulfill -- follow the letter of the law and honor an 8-year old directive. It's what Dad would have wanted.

Or was it?

Fast forward six weeks. Dad's bed sores are almost all healed. He's awake almost all day long. He continues to smile and laugh spontaneously. He's eating apple sauce and a variety of baby foods. He even says a few words now and then.

Signs of a dying man? More like signs of a THRIVING man. A man with a will to live. Saved by a caregiver's will to love.

This afternoon, my cel phone rang. It was hospice calling. Dad was going to be discharged. He was free to LIVE! No longer was he in the shadow of a policy that promoted death. Granted, hospice was there for us when we orchestrated Dad's elaborate "escape" from his previous nursing home, and I appreciate their understanding and flexibility in allowing us to extend Dad's life instead of end it.

It was just not his time.

Today's phone call represented a triumph of wills -- the will to live and the will to let live. And, yes, it was also a defeat of wills -- a doctor's will to suspend a patient's life and, of course, the will that led to all of this commotion -- the living will.

Oh, how I wish Dad's (now former) doctor could see him now.

Dad's starting to eat again

2006-04-02T00:42:00.000-10:00

Four days before I started this blog, a speech therapist at my dad's former nursing home made his final determination that Dad would not be able to swallow or eat safely again. This determination was the primary reason for Dad's former doctor deciding to suddenly and arbitrarily remove Dad's feeding tube and begin the dying process. As those of you who have been reading this blog from the beginning know, that is the reason I decided to "fight for my dad's life."

Today, almost exactly one month after that fateful determination was made, I saw my dad eat an entire cup of apple sauce. Actually, his caregivers had been slowly trying to feed him for awhile already, only because they firmly believed that he could, based on their expertise as respiratory therapists.

Dad's caregiver ("Angel") said that it is not uncommon for speech or respiratory therapists to basically give up on patients because these so-called medical professionals don't want to risk the potential for (and liability of) a patient's aspiration, caused when liquids go down the wrong "pipe" to the lungs.

Today, my admiration of Dad's caregivers moved beyond admiring their compassion and commitment. These people are courageous.

Life is full of risks. Without taking any risks, life would be, well, lifeless. Had I not taken a risk to save Dad, he would most likely be lifeless by now. America's overly litigious society has turned our medical professionals into a bunch of cowards. That in turn transforms patients and their families into a bunch of cowards. It's a sad, sad situation.

I'm sure if my dad could speak, he would be thanking his caregivers for their courage. For believing in him.

"As long as we feel hope, there is hope."

Yes, indeed.

My conflict with hospice

2006-04-01T04:08:00.000-10:00

Ever since my dad was moved to his new private care home, he and his caregivers have been visited by nurses from a local hospice twice a week. Part of the deal to get my dad out of the "evil" nursing home last month was to agree to put him under hospice care.

As you probably know, the primary purpose of hospice care is to provide support to the family and caregivers of a terminally ill patient during his/her final days. Hospice is not allowed to sanction or encourage any efforts to sustain or prolong life. That includes medications that might help the dying patient get better. The point of their services is to ensure a comfortable exit from this world.

I don't have a problem with the concept of hospice. In fact, I even thought of becoming a hospice volunteer when I was in college. I felt it would be the ultimate test of my "compassion skills." What I've discovered through this experience, however, is that hospice people can be quite UNcompassionate. Especially when they have to work with people like me and my dad's extremely compassionate caregivers and doctor.

For example, we're now trying to "fatten" up my dad to reduce his risk of increased bed sores, so the doctor has agreed to up my dad's daily dosage of high-calorie liquid supplements from 5 cans a day to 6. The hospice people are not happy about this. Also, we have started giving my dad (who is diabetic) insulin to keep his blood sugar levels at a reasonable level. Sounds good, right? Not to the hospice people.

I have told my dad's caregivers that I am not afraid of losing my dad. I think I'm about as emotionally prepared as I ever will be for that inevitability. My conflict with hospice is their constant -- I would call it annoying -- effort to get us to "let go" sooner than later. I just don't understand this. Of course, our situation is not a typical hospice situation since we have him on a feeding tube, which a regular hospice patient wouldn't be on.

I just want hospice to leave us alone and let my dad enjoy his new lease on life and the wonderful care he is getting. He is not in a rush to die. That's very clear to us -- especially to his caregivers, who see him 24/7 and continue to report of his regular fits of laughter and increasingly fluid responses to their cues.

Dad's caregiver ("Angel") said that she has had numerous patients get taken off of hospice services because they got better under her care. That is my hope for Dad right now. I'm sure he can sense hospice's "negative" agenda when they are visiting him, especially now that he is surrounded by love and caring all the time.

I think maybe it's time for hospice to move on and leave my dad alone to enjoy himself. He'll leave us when he's good and ready. Not when hospice is.

Dad speaks!

2006-03-22T10:42:00.000-10:00

(My apologies for the recent absence of updates to this blog, but I've been on a business trip for the past week. Dad's condition has stabilized and his guardian angel said that it would be alright for me to slowly get back to some former routines. That includes getting back on track with this blog and the excerpts from the book about early grief. Stay tuned...)

I called my dad's guardian angel this morning to get an update on his condition and amidst the flurry of details about his care and his steady progress, she excitedly reported that Dad clearly SPOKE to her the other day. She was doing some simple range-of-motion exercises with him (moving his arms, legs) when he suddenly blurted out, "That's sore." She said she couldn't believe her ears because that was the first time he had said something specifically directed at one of her actions. (Before I left on my business trip, I asked him if he was going to be okay and he said, "Yeah," which in itself was pretty significant!)

In response to Dad's unexpected remark, Angel started giving him some Tylenol, which seems to be helping to relieve the apparent pain. Fortunately, this does not appear to be an ongoing ailment. He still smiles and responds positively to Angel, so that momentary expression of anguish was just that...momentary. The important thing about his remark was that he knew what to say and it was a clear directive. That's progress!

With each passing day, Dad appears to be moving further away from Death's door. And yet, I'm prepared for his condition to worsen at any given moment. As I quoted in my previous posting, "As long as we feel hope, there is hope." I believe my dad truly FEELS hope in his new care environment, and that means there IS hope for him to experience a better quality of life than he's had in a long time.

And, if I can help it, no one will be allowed to take that hope away from him.

What is "early grief"?

2006-03-12T00:07:00.000-10:00

"As long as we feel hope, there is hope."

That was the quote at the top of Chapter 1 of Smiling Through Your Tears: Anticipating Grief. It couldn't have been a more appropriate way to start off my journey of learning and insight.

The concept of "early grief" was first defined by a psychiatrist named Dr. Eric Lindemann in 1940. He observed that patients who had a forewarning of imminent death reacted differently when the death actually occurred than those for whom death was totally unexpected. "Forewarning" is the key word. According to Dr. Lindemann, early grief starts the minute you hear the awful news. He continues that, although we somehow manage to cope, the struggle is constant and our early grief keeps getting worse. But, the authors of "Smiling" say that coping with early grief is knowing the factors that make it unique.

(To be continued...)

Learning from this experience

2006-03-11T14:26:00.000-10:00

My reason for wanting to start this blog 11 days ago was impulsive. Instinctive. I wanted to vent my anger at an uncaring doctor. An uncaring system. It was a way to relieve stress.

Recently, this blog has become less of a forum for my angry thoughts and has evolved into a learning tool -- a way for me to organize my thoughts about the impending loss of my dad and a way (hopefully) for those of you reading this blog to prepare for the loss of a loved one someday or to deal with some significant change in your life.

Coping with the loss of a loved one is a learning experience, for sure. PREPARING to cope with such a loss is yet another one in itself, I've come to realize. Caring for someone, like my dad, who has Alzheimer's Disease or any terminal disease, for that matter, requires a different set of "coping strategies" from dealing with a sudden death (i.e., from a car accident, murder, etc.).

Today, I started reading a book about one such coping strategy -- early grieving. Until today, I never knew there was such a term for what I'm going through. "Early grief (also known as anticipatory grief) is a feeling of loss before a death or dreaded event occurs." That was the first sentence in this book. When I read that, I said to myself, "I gotta keep reading!" Actually, the title of the book tipped me off (Smiling Through Your Tears: Anticipating Grief by Harriet Hodgson and Lois Krahn) but I had no idea how interesting and USEFUL this book would turn out to be for me.

And, since this is a subject that every one of us will have to deal with at some point in our lives, I've decided to intersperse my personal thoughts in this blog about my dad with the "healing steps" (as the authors call them) found in this book.

Stay tuned...

At peace with myself

2006-03-11T11:19:00.000-10:00

I just got off the phone with my dad's guardian angel. Dad aspirated last night. That means some fluids got down into his lungs. He was coughing a lot and was quite "phlegm-y," so that's what contributed to it. He might have gone last night. But, "Angel" knew just what to do (she's also a respiratory specialist), so he's back up in his wheelchair today and responding to her loving calls. He's not smiling as much and looks a bit tired, but that's to be expected.

I visited Dad last night and he was already in bed sleeping. He opened his eyes a few times to look at me but seemed a little groggy and didn't give me one of his winning smiles. That's okay. At least he was still opening his eyes. It could have been my last visit with him but, fortunately, I have another opportunity to see his winning smile.

What I found interesting about my reaction to the phone call this morning from "Angel" was that I didn't have my usual "sinking feeling" followed by heavy heartbeat, which I used to get every time I got some "bad" news from Dad's previous caregiver. When "Angel" said, "Dad aspirated last night," I didn't panic. I just wanted to hear what happened. She gives me very detailed explanations, so I almost never have any questions.

I thought about my reaction and concluded that I must now be at peace with myself about Dad's situation. That is, I'm ready for the end. It may come in the next 2 minutes. It may come in the next 2 years. But, I think I'm ready for either possibility. Nowadays, when "Angel" talks about my choice of mortuary or the scene that would likely take place at the moments prior to and after Dad's passing, I have no difficulty talking about such things. It may help that I've already experienced and witnessed the passings of my mom and sister before my eyes in 2004.

But, I also think that I'm at peace with myself because I did all that I could last week to ensure that my dad is in a caring, loving place at the end of his life. I've stopped wondering how everything that happened last week could have happened so smoothly and (for the most part) effortlessly. "Angel" keeps saying to me that I'm truly blessed, and there have been a few signs during the past week that my late mother had a hand in all of this. In any case, whatever the reason, everything happened just as it was supposed to. Whether I find out the reason or not doesn't matter anymore.

For now, I'm going with the flow and living my life without any regrets. Just as we all should.

Quality of end-of-life

2006-03-07T23:46:00.000-10:00

It's been four days since the "Great Escape" (see previous posting) and Dad seems to be doing VERY well in his new safe haven. I visited him yesterday and he looked absolutely content, relaxed and very happy. His reflexes seem to have improved because whenever his new caregiver (a.k.a. his guardian angel) calls his name, he almost immediately turns, looks at her and grins. I think he knows that he's in good hands. And, he probably senses her reassuring air of confidence and willingness to ease whatever might be ailing him. Needless to say, I'm elated at Dad's positive response to his guardian angel and the marked improvement in his physical appearance.

Today, I spoke with "Angel" (not her real name) and she told me that Dad's blood sugar levels were a little high and that he still had a few bed sores that were slow in healing. But, she had gotten "Dr. Compassion's" approval to get the necessary medications needed to remedy these ailments. It was at that point that I wondered what I would be doing if I had never met "Angel" or "Dr. Compassion" last week...

I would be at home watching Dad slowly die, helpless to provide him with any medications to improve his situation (against hospice rules). His blood sugar levels would be going through the roof, his bed sores would slowly be getting worse, he would be losing weight, becoming dehydrated.

Just thinking about this makes me shake my head in disbelief. I was less than 48 hours away from having my dad's only source of sustenance (his feeding tube) removed forever. Never to be replaced because a piece of paper he signed 8 years ago -- his living will -- states that he chooses not to be sustained by such a device.

My normally upbeat, positive personality would no doubt have been irreparably damaged. Dad and I would have been hopelessly helpless. Living in a state of purgatory. Hell on Earth. Dad's once-hopeful eyes would have been permanently saddened. His winning smile all but a memory.

My dreams of a quality end-of-life scenario for Dad would have been dashed because his doctor refused to acknowledge that his smile and his laugh were communicating a desire to live. Quality of life? Maybe not in an objective sense, but perhaps in a subjective one. One worthy of consideration. Dad was not in a coma. He was conscious. Alert. Smiling. Laughing. Living a quality of life that offered hope.

Fortunately, a Greater Power intervened (how else can I explain it?) to prevent such a dire situation from unfolding. I count my blessings every second of the day.

It's time to rethink living wills. To review them carefully and consider all the possible end-of-life scenarios. Medical professionals call it a "gift." A gift is not a gift without peace of mind for all concerned. A living will left unconsidered and undiscussed is not a gift. It's a CURSE.

A new beginning

2006-03-03T23:58:00.000-10:00

We met with Dad's new doctor around 5 o'clock today -- after-hours for him. He was a young-ish (late 40s?) MD. Full of vitality and, as I was soon to find out, tremendous compassion. While a believer in hospice, he also said that one should never "have to" remove a feeding tube for any reason. He was clearly not a traditional doctor. He was a healer. He prescribed some so-called alternative all-natural liquid supplements for my dad because he clearly lacked life-giving nutrients in his system. After all, for the past six weeks, he had been ingesting only one kind of generic liquid supplement through his feeding tube, 20 hours a day, 7 days a week. His new doctor was prescribing a variety of supplements that could, he said, give Dad the strength to loosen up his stiff limbs, relieve his dry skin and maybe -- just maybe -- get him to eat through his mouth again. Now THAT would be something!

But, this was just the beginning. A new start on the road to possible improvement of Dad's once-hopeless condition. "Don't worry," his guardian angel said. "Just trust and be positive." "I know," I said. "That has always been my outlook on life. Why do you think we're having this conversation?" She looked at me, and smiled.

After the doctor's meeting, we headed to dad's new care home. It was to be the last stop on our day-long escape mission from Death's Door. Throughout the day, I felt so lucky to have been given this amazing opportunity. This has proven to be one of the most precious times in my life. Granted, it was an exhausting ordeal, it taught me the importance of courage and conviction. And, it has made me realize that much of the medical care business is not so much about "care" as it is "business."

Medical professionals need to put COMPASSION back into their practice. And, patients and their families need to believe and commit themselves to LIVING and not resign themselves to dying.

The great escape

2006-03-03T23:44:00.000-10:00

It's T-Day. Tube Removal Day. The beginning of the end for my dad. At least that's what it was supposed to be, if the uncaring, uncompassionate so-called medical professionals at his nursing home had their way. But, I wasn't going to let them. Today was going to be a new beginning for my dad.

Arriving at the nursing home, I was nervously excited. Or, was that excitedly nervous? I signed Dad's discharge papers, ostensibly preparing to take him home to die. But, once we were out the door, he was free. Free to live. Instead of taking the off-ramp to go to my apartment, our driver knew just where to take us. We were going to make a pit-stop at a friend's home for a meeting with the hospice people and then, later in the day, meet with his new doctor and, ultimately, check in to his new home. The fun was just beginning.

The folks from the hospice (who were in on the "compassionate" plan) arrived and met with me. I signed their papers but it was just a formality. They examined dad and agreed with me that he was looking surprisingly well for someone who just four days earlier was essentially sentenced to death. They said that they would be available on an "as-needed' basis. I wasn't planning to "need" them. Not for awhile, at least.

The back door

2006-03-03T00:42:00.000-10:00

Today proved to be a critical turning point in my quest for a new lease on my dad's life. It was a day of detailed meetings, strategically-placed phone calls and careful coordination. T-Day (Tube Removal Day) was t-minus one day and counting. My dad's new guardian angel was the orchestra conductor. The baseball coach. She was the master of her domain -- a domain of quietly compassionate individuals from the medical service community who all understood the importance of discretion and silent maneuvering.

I was called into an emergency meeting of Dad's nursing home managers who wanted to interrogate me about my sudden decision to discharge my dad from their facility. What were they going to ask me? My dad's new guardian angel told me not to let them intimidate me. Stick to the "official" story and don't show any doubt. I needed some reassurance that I was doing the right thing. I went to my dad's bedside a few minutes before the meeting and asked him, "Dad, are we ready?" He smiled at me and then laughed. His eyes said to me, "Go get 'em, son!"

No fear.

I told the managers that I wanted to be my dad's primary caregiver during his final days on Earth. I wanted to ensure that he dies with dignity. Not just a body in a roomful of other bodies, but a human being surrounded by those who loved and cared for him the most. I was not going to go against the doctor's orders. I was going to follow procedure.

That was the "official" plan.*

The actual plan was a much more compassionate one -- one that would be masterfully orchestrated by the guardian angel. I briefed her on my discussion at the nursing home and she systematically started making her phone calls. She knew top management at every organization that was involved in executing the "official" plan. She was arranging the pieces of the "compassionate" plan. It was a sight to see.

As if emboldened with a mission from God, these medical professionals with hearts of gold knew just how to execute a "back door" maneuver. They had all done it before. They knew what to do and what not to do. Although I had never met any of them before, I could envision them huddled in their offices, preparing to set my dad free from the bonds of legal restrictions. I could feel their love. Their caring. Their compassion.

I felt safe. I felt secure. Dad, this is my gift to you. Keep on smiling. You're in good hands.

*Note: Had I not had an "official" plan, Dad's doctor would not have signed the discharge papers. In other words, if I had even suggested that I was planning to save my dad's life, they would have kept him at the nursing home to die.

Dad's new guardian angel? - Part 3

2006-03-01T23:13:00.000-10:00

So, I told this new caregiver candidate that I thought she was the right person to take care of my dad and she felt comfortable with me and the proposition. She told me that she had just turned down a female patient this morning because the family was a little too "OCD" (Obsessive Compulsive Disorder) and somewhat "koo-koo"! She said that she liked the patient, but didn't have a good feeling about the family.

So, we agreed to agree. She would take Dad in on Friday -- T-Day. The clock that started ticking on Monday just stopped ticking.

In a subsequent phone call to her tonight, she asked me if the nursing home was going to leave the feeding tube in my dad's nose when they discharged him and I hesitantly said, "They can't do that." Almost instinctively, she said, "Oh, a legal issue, huh?" She knew why I hesitated. I told her that I had to tell her something. She said, "Is it about a living will?" Oh my gosh. "Don't worry about it," she continued. "I'm on the side of family -- if they want to go against the patient's living will, I'm fine with it. Your doctor is one of those that don't care about people. To him, your dad is just another body. Not the doctor I will have assigned to your dad. He's not hung up on living will directives. Don't worry."

There is a God.

Dad's new guardian angel? - Part 2

2006-03-01T22:52:00.000-10:00

I met Dad's new caregiver candidate at the entrance to her building and she took me up to her unit and there in the middle of the main room sat a local Japanese uncle-type in a wheelchair, watching TV and grinning. It was a very clean room, with minimal "stuff" (as most people tend to have). We started talking about my dad and his condition. I told her that I was having problems with his doctor and wasn't happy with the care he was receiving at his nursing home and she said that she hears complaints all the time. I didn't mention anything about the living will and the feeding tube issue.

I got a little emotional at one point in our conversation as I told her how Dad's smile gave me hope yet I couldn't help but feel that he wasn't being properly cared for at the nursing home. Then she told me about how her father in California is in his final weeks of life, with a growing brain tumor, yet the family got together recently and all decided that they would do whatever it took to make his final days on Earth as happy as possible. That included letting him eat whatever he wanted -- regardless of his diabetic condition. What was important to her family was ensuring that their dad felt completely loved and totally cared for in his final days. Her eyes welled up with tears as she told me this.

She also told me about how she once took in a woman who supposedly only had two weeks to live. And yet, under her care, the patient lived an unexpected 6 months longer!

As I listened to her speak, I became more and more convinced that she was the person whom I wanted to care for my dad. She seemed to have just the right amount of strength of character and sense of caring that my dad deserved. It just felt right.

Dad's new guardian angel? - Part 1

2006-03-01T22:25:00.000-10:00

After considering the enormous undertaking that a legal action against my dad's doctor would be and the toll it would take on my dad and our family, I decided last night not to go to court over the living will issue. Instead, I talked with my dad's former caregiver and she said that she would try to find me an alternate caregiver and care facility for my dad -- one that is more sympathetic to my cause and one that could take him in by T-Day (Tube Removal Day) on Friday. I remained hopeful.

She introduced a few candidates to me but they were all unable to take someone in my dad's condition. Then, around 3:30pm, just when I was about to give up hope for the day, I received a phone call from Dad's caregiver and she said that she found a care provider with an available bed who was able to take in a non-ambulatory patient like my dad and was skilled in inserting and maintaining a feeding tube. She sounded good.

So, I hung up the phone and made a U-turn. This care provider is a Certified Nurse's Aide (CNA) and owns a private care home in central Honolulu. She specializes in Alzheimer's patients, and just happened to be looking for a new patient to fill one of her beds. When I spoke to her about directions to her place, she warned me about the problematic parking situation. For some reason, I wasn't worried. When I got to within a block of her place, I spotted an open metered stall -- with 3 minutes still on the meter! Ah, this is a good sign!

My legal options - Conclusion

2006-02-28T20:52:00.000-10:00

And, here are some parting words from our attorney regarding my legal options. Incidentally, this attorney's father also suffered from Alzheimer's and he told me that he had to confront many of the issues that I am dealing with now. This is indeed a very difficult and confusing process to consider. I truly appreciate the time he spent discussing this with me:

"Obviously, the only person with the right or ability to make the decision about how to proceed at this point is you. As I indicated to you on the telephone, if you need to proceed with a motion for a temporary restraining order and/or an injunction immediately because the doctor will not wait, my present case load and the immediate demands on my time are such that I would not be able to take the case. It is my understanding that you will be asking the doctor if he is willing to give you more time because of the nature of the decision that is involved."

My legal options - Part 3

2006-02-28T20:46:00.000-10:00

In this third excerpt from our attorney's letter, he talks about the possibility that a court case would not only be costly but might attract a lot of attention in the media since issues like this are "hot-button" ones right now. The cost he speaks of is not just monetary, but the cost in terms of loss of privacy:

"One of the factors that you need to evaluate in making your decision about how to proceed is that there will be cost considerations. If you are going to go to court you have to be prepared for the fact that there will be significant costs involved. You will have legal fees and the costs of the various expert witnesses that you may choose to call. If the doctor is unwilling to wait and you have to go into court to get a temporary restraining order and/or injunction, you may have to pay extra to get someone who is able and willing to drop everything to make the immediate and significant effort that would be involved in getting the matter before the court. As I indicated, if the media become aware of the matter and if it receives any publicity, you may find other groups trying to intervene or otherwise get involved because this is such a hot-button item right now. This will almost certainly increase the cost to you without necessarily making the issues any cleaner. If you lose at the trial level, you would be forced to appeal and request that a court issue an injunction pending the appeal. You also would probably need to seek an expedited appeal, a process which could also cost additional money. At any time in this process, your father could pass away from natural causes and at that point the matter would become moot and the legal proceedings would immediately end."

My legal options - Part 2

2006-02-28T20:38:00.000-10:00

In this excerpt from our attorney's letter, he talks about the Hawaii State law that requires medical professionals to honor the directives of their patients' living wills and some possible "attack" strategies we could undertake if we went to court (I don't plan to post the legal provisions he mentions since the document is quite long, but I would be willing to share it with any of you that care to read it.):

"Hawaii has adopted the Uniform Health-Care Decisions Act. I am attaching a copy of the pertinent provisions to this letter. From what you told me it does not appear that there is any question over your father’s capacity at the time that he made the living will. Therefore, if you are going to try to stop the doctor from implementing the terms of the will, I believe that it will have to be done through the courts pursuant to Section 327E-14. Your attack could take several directions. One could be based upon the argument that your father may regain his ability to swallow over time, thus eliminating the necessity for the feeding tube. If you are going to take that position, I believe that it would be necessary to support it with medical testimony. This means that you would have to hire an expert in the field and pay him to examine your father and his records in the hope that he would be able to find evidence that would support the position. It should be obvious that you may hire someone and go through the process only to find that there is no chance that he will regain his swallow reflex. Another approach would be to try to overturn the will based upon the argument that his condition has not reached the point where he would have intended that no further measures to save him be taken. If you are going to argue about the quality of his life, you again would have to hire expert witnesses to testify about the quality of his life and the degree to which he appreciates his surroundings."

My legal options - Part 1

2006-02-28T20:30:00.000-10:00

The following is the first in a series of excerpts from a letter sent to me by our attorney summarizing my conversation with him this morning about the legal options I have to stop my dad's doctor from removing his feeding tube. In this excerpt, he goes over the basics of my dad's situation:

"It is my understanding that your father presently is confined to a nursing home. It also is my understanding that he suffers from Alzheimer’s disease. Finally, it is my understanding that he recently has had a hospitalization and an evaluation after his return has determined that his swallow reflex is compromised with the result that he is no longer able to feed himself. He presently is being fed through a tube. In 1998, your father executed a living will indicating that if he had suffered the permanent loss of the ability to communicate regarding medical treatment decisions he did not want his life prolonged by feeding through a tube. Your father’s doctor has indicated that it is his intent to follow the directions of the will and remove the tube."

The tube

2006-02-28T19:18:00.000-10:00

So, if my dad didn't want to be sustained by a feeding tube, why is he hooked up to one right now? When my dad was transferred from his nursing home to a nearby hospital on January 18 due to aspiration resulting from pneumonia, I was in Japan and my dad's former caregiver asked the physicians at the hospital to sustain my dad until I got back to Honolulu. I returned on the 19th and, for whatever reason (which I choose not to question), he was kept on the tube throughout his 2-week hospital stay and then at the nursing home until today. Had the physician(s) at the hospital nitpicked and forced the issue of the language in the living will, my dad would not be alive today. To the physician(s) that allowed the feeding tube to be inserted into my dad, I owe a huge debt of gratitude.

The piece of paper

2006-02-28T18:24:00.000-10:00

Below is the text from my dad's living will, the piece of paper that determines whether he lives or dies in his current situation. He signed it in 1998, and the intent is clear, but the wording is a bit vague.

For example, it doesn't specifically mention if this applies if he is still conscious, which he is right now. I'm sure when my dad signed this document, he was envisioning a scenario in which he is in a vegetative state. If that was the case now, I would have no problem honoring his directive. But, he is not a vegetable right now.

Then there's the line about "If I should develop...a permanent loss of the ability to communicate." He communicates with me every day. With his eyes and his smile -- and, what they're saying to me now is, "I'm happy to see you," and "I'm not in pain."

The following is just one example of a living will, and I'm sure my parents (my mom had the same living will) did not wish to burden me with the decision of determining when to end their lives, but I feel that, as my dad's only surviving family member, I deserve a say in the timing of the end-of-life process. But, my legal options are limited, so I am considering other options (see future postings).

==========
LIVING WILL DECLARATION

This Declaration is made on August 7, 1998, I, (KKT), being of sound mind, and understanding that I have the right to request that my life be prolonged to the greatest extent possible, willfully and voluntarily make known my desire that my dying shall not be artificially prolonged under the circumstances set forth below. I wish to live and enjoy life as long as possible. However, I do not wish to receive medical treatment which will only postpone the moment of my death from an incurable and terminal condition or prolong an irreversible coma. I hereby declare:

My instructions shall prevail even if they create a conflict with the desires of my relatives, hospital policies, or the principles of those providing my care.

If I should develop a terminal condition or a permanent loss of the ability to communicate concerning medical treatment decisions, with no reasonable chance of regaining this ability, I do not want to have my life prolonged. I would not want to be subjected to surgery or resuscitation. Nor would I then wish to have life sustaining medicine or procedures. Instead, I request care, including medicine and procedures, for the purpose of providing comfort and pain relief.

I have also considered whether I want tube feeding to be provided and have selected one of the following provisions by putting my initials in the space provided:

__(KKT)__ I DO NOT want my life prolonged by tube or other artificial feeding or provision of fluids by a tube if my condition is as stated above.

_________ I DO want my life prolonged by tube or other artificial feeding and provision of fluids by a tube if my condition is as stated above.

If neither provision is selected or if both are selected, it shall be presumed that tube or artificial feeding or provision of fluids by a tube are requested to prolong the declarant's life.

This declaration shall control in all circumstances.

I understand the full import of this declaration and I am emotionally and mentally competent to make this decision.

Signed: (KKT)

The deadline

2006-02-28T09:20:00.000-10:00

Of all the words in the English language, the word "deadline" is my least favorite right now. Not only does it imply death, but it is something that I prefer not to set at this time. But, my dad's doctor insisted that I provide him with a deadline for "pulling the plug," which he originally planned to do right after he called me yesterday. Initially, I offered the 1st of March (tomorrow), but then after speaking with our social worker at the nursing home, we moved that to this Friday, March 3. But, my plan is to seek a deadline to be determined at a later time. As long as Dad is conscious and smiling, I don't feel the need to rush the process (unlike the doctor who seems hell-bent on moving on). I'm meeting with our estate lawyer today to discuss my options.

The phone call

2006-02-28T07:57:00.000-10:00

Yesterday, I received a life-changing phone call. A phone call that was supposed to change my dad's life and would ultimately change mine. My dad's doctor called to tell me that he was going to start the process of ending my dad's life. He said, "I'm going to pull out his feeding tube, okay?" He said it like he was about to unplug a vacuum cleaner or a lamp. Totally without concern for the implications of his actions.

Few things upset me. But that phone call upset me. Just 24 hours before, I had visited my dad at his nursing home. He was in their rec room in his wheelchair with his eyes closed. I walked up to him and asked him, as I always do, "Hey Sleepyhead, whatchu doing?" It took him a few seconds to open his eyes, but when he did, he gave me his winning smile. The smile that warms my heart and brings a tear to my eyes. The smile that tells me, "I'm glad to see you." The smile that says, "I'm glad to be alive."

My dad has Alzheimer's. And, he has a living will. His living will states that he does not wish to be sustained by a feeding tube at the end of his life. That was back in 1998, when he signed that piece of paper. But today, with a feeding tube in place since last month when he was transferred to a hospital for treatment of pneumonia, I believe he would be willing to reconsider the literal, vague wording of that directive and put up with having the tube. I mean, if he was so uncomfortable with it, he wouldn't be smiling as often as he does these days.

I'm not sure if my dad's doctor has seen my dad's winning smile. If he did, he would understand how I feel. It's not that I'm against honoring my dad's directive. I'm against not being able to have a say in when we can begin the process of ending his life. There is no wording in the living will that says when the process must be started. My dad is not unconscious. He is not in a coma. He is conscious. He is talking to me...with his eyes. And, he is NOT telling me that he wants to die.