Here, and yet not here.

Three weeks and change since Dad's passing, I've lost count of the number of expressions of sympathy, EMPATHY, and "How are you doing? How is your Mom?" I've gotten. The first Sunday after was hard. Mom asked me to thank the church for all of their support. "I can't do it, I never know what to say, and I'll start crying anyway, so you do it." Thanks Mom! I got up during the time of prayer and of course I didn't get past, "My mom and family would like," before my windpipe got stuck. Somehow I made it through, and I'm thankful, because I meant all of the expressions of appreciation and more. After worship a recent widow came to give me a hug. She had lost her husband somewhat suddenly only a few weeks before. I can't fully describe how it felt when she enveloped me into her arms and held on tight. I told her, "you know, it's not that I'm sad, even though I guess I am. I am just overwhelmed by how many people care, and how much they care. I never realized how much people DO care, and when it came home to me, it was just too much." And she nodded her head in full agreement, "It IS overwhelming, knowing how much people care. But they DO care, and their care will help you through this."

What's been going on since that day? Well, life I suppose. That's one thing about having a family, esp. with younger children. Life goes on, whether you are ready for it or not. Kids need to be fed, they need help with their homework, rides to dance class, hugs and kisses before bed, to be yelled at when they get too annoying. Mom has gone along for that ride. Suddenly freed from having to go feed Dad twice/three times a day, she helps make dinner. Sometimes she MAKES dinner. And she's back to de facto babysitter when Mike and I need to go out. A couple of weeks ago she helped someone with their math homework.

One less desirable result of losing a spouse, esp. a primary spouse, is the process of making sure all of your official paperwork reflects your new status correctly without losing any of your benefits. We have had to inform social security of Dad's death, and apply for spousal benefits. We also spent several extremely frustrating days trying to figure out why, when one spouse dies, their entire insurance coverage account gets disenrolled, forcing the surviving spouse to navigate the formal process of reapplying. In the end, everything was straightened out, but this is yet another example of what happens when two bureaucracies bungle their communication, when the administrator of health coverage is not the provider, and yet a third body is responsible for prescription drug coverage. Too many layers between a single person and their benefits results in frantic phone calls and sleepless nights.

Mom is also experiencing some release from months of tension. When I come to the sudden end of a stressful period, I get sick, and it appears Mom is no different. 3 days ago she had an appointment with her PCP, where she was diagnosed with a double ear infection. Then she was given a pneumonia booster, which resulted in such an adverse reaction that I had to take her to urgent care that evening because she couldn't move her swollen arm. Today, partway through a course of steroids and antibiotic ear drops (I had no idea they were a thing!), she is feeling so much better that she went out and pruned our fruit trees. For the record, I haven't touched them since I planted them 3 years ago.

Aside from the everyday routine, my siblings and I continue see and feel Dad's presence. My brother and youngest sister have had dreams about Dad, and I have heard his voice talking and laughing just before sleep. Some of these "visions," end in tears, and in all of them his presence is so real.

Last week I had just finished making dinner and told my kids, "Go upstairs and tell Akong and Amah it's time to eat." Elfgirl said, "what? Akong's not here." When I corrected myself, she said, "It's sad Akong's not here anymore," even though he had not been here at home for months. And yet sometimes he's very much here, in my head, telling me all the things he used to tell me.

Til Traveling Days are Done

To our dear family and friends:

On Thursday, March 16, Edward Gibin Tanng went home to meet his Lord. As horrible this disease was, the end was every bit as peaceful as it could be. We received a morning call from the nurses at R Center asking for permission to begin administering morphine. Dad's breathing was becoming labored and showing signs of discomfort. Mom gave permission over the phone, then left soon after to be with him. An hour later she called me and told me the nurses said it was time to call our pastors. I managed to reach Pastor John, and he promised to get there as soon as he could.

I arrived a few minutes after 9, to see Pastor John already there with Mom. Dad had been given some oxygen the night before to help his breathing, but I could see that he was already experiencing Cheynne-Stokes breathing. To the onlooker it appears that the person's chest is heaving, taking huge deep breaths in rapid succession, but the look on Dad's face showed absolutely no pain or discomfort. If it hadn't been for his chest moving the way it was I would have assumed he was sleeping peacefully, which in fact he was.

Pastor John opened his bible, and began to read a liturgy of scripture and prayer to usher one over the bridge. He prayed a blessing for Dad's long and full life, and asked that his spirit be received so that he could rest. After he finished we sat and watched. A couple of times Dad experienced apnea, and his chest stopped moving completely. But after a few moments they would begin to heave again. However, each time I noticed that the movements were a bit smaller, a bit gentler. The hospice nurse came in and said she was ordering a larger dose of morphine, so it would hold Dad longer, instead of us giving it to him so often. She said she would make sure there was someone to come and sit with him through the night, then she left.

At one point Pastor John remembered an experience in which dabbing a bit of someone's favorite drink on their lips could sometimes be a comfort. Mom immediately said Dad loved orange juice, and she left to get him some. We continued to watch, and talk. Then I noticed that Dad was not coming out of his apnea. I leaned closer, then John and I both walked toward the bed. I put my hands on Dad chest, his neck, trying to feel for a pulse, and noticed immediately he felt cooler than he had. I asked Pastor John to fetch the nurse while I continue to try and feel for a pulse. The nurse came but after a few minutes couldn't feel anything, so he fetched the charge nurse.

There is a protocol for confirming someone's demise. First you try to find heart sounds. Finding none, you try to find blood pressure. After several minutes she turned to us and said she was calling the time of death at 9:46 am. It had been about 40 minutes since I arrived.

I've often wondered about the experience of watching someone die after a long illness. Is if filled with grief, regret, loss, relief? For me it was none of those things. It was only love. As the charge nurse talked to Mom about what came next I leaned over Dad, slid the oxygen tubing off his face, for one last time pressed his face between my hand and my cheek. I had no words, I just held him. And then the tears finally came. For what, I don't know. I didn't feel any sorrow, maybe only a quiet gladness that he was finally free. The disease that had slowly stolen his mind and joy no longer held him.

Watching Mom caress the face of the man who has been her husband for almost 50 years, I understood that love covers all things, even death. She told him he had gone ahead, but she would join him soon. Then, standing between Pastor John and the nurse, she opened her Taiwanese hymnal, turned to a page and said, "He really liked this hymn," and began to sing the first verse of "What a Friend We have in Jesus." Then she turned again, and sang from, "Sweet Hour of Prayer," and I knew Dad had the end we all hoped for.

There are no words to express our deep thanks to the friends who have continued to reach out to us during Dad's illness. The ones from California who called regularly to check on Mom and ask how Dad was doing. Our cousin, who arranged for Mom to Skype with Dad's brother, who is now also on his journey with Alzheimer's. Our neighbors, who took our kids in when Mom and I were stuck at medical appointments and couldn't make it home to meet the bus, and showed up unbidden to clean out our driveway after a surprise blizzard two days before Dad's passing. The staff at R Center, who did all the was required of them and more, just to make Dad more comfortable. Pastor John, who stayed not only to pray the final blessing, but continued to sit with us until Dad was taken away. And there is you, who have come here to read our story. In so many ways, large and small, everyone been a part of our journey. And we are so thankful. Without our village our journey would have been much the poorer.

Yesterday evening, as I read through the many messages left by friends, I came across a post by a fellow musician. He sent it as a message of comfort. I leave it here, because the words so beautifully express the arc of Dad's life. Above all he loved God, and knew he was loved. And in God he had his rest.

"I heard the voice of Jesus Say"
https://www.youtube.com/watch?v=8mXMQqiLW9c

Status reset

At the end of last week, Mom started to think that maybe Dad should have someone from Hospice checking on him daily because he is no longer eating and drinking. So I called them, and on Sunday, Nurse Drew came to assess Dad. He checked heart, lungs, neuropathways, and his skin. Based on these areas he determined that Dad is not yet nearing transition. Transition means that death will usually occur within 48 hours, and there are physical signs that appear. The heartbeat will be weaker, breathing will be more labored, reflexes are decreased, and the skin will start to appeared mottled. None of these signs are currently present. All of Dad's basic functions are still at full or close to full capacity. 

Drew told us that even though Dad is not eating or drinking (we are now on Day 7), he could linger for quite some time. However, he would put in the call to the case manager and someone would begin checking on his status daily. Today our town is the middle of a N'oreaster, and everyone is pretty much snowbound. However, a nurse did show up early this morning to check on Dad, and he still looks pretty good. Mom also saw him and said that today, like yesterday, Dad did nothing but sleep, did not seem to want to engage, and took nothing. Today he also refused mouth care, which normally takes place every two hours. One of Dad's regular LNAs has decided to sit with him as much as she is able. 

One of the topics Drew and I discussed was the use of morphine near the end. Sometimes, he explained, a patient will begin Cheyne-Stokes  breathing, in which they will breath quickly and deeply several times in succession, then experience apnea, when they stop breathing altogether for a period as long as a minute. This is the body's way of reacting to the level of CO2 in the bloodstream. Although there isn't any data to suggest this is uncomfortable for the patient, it can be distressing for family members to see this and so morphine can be administered, which will bind to the CO2 receptors (I hope I'm remembering this correctly!), so that they will no longer detect the rise of CO2 in the bloodstream. It is our choice whether or not we want to use morphine in this situation, but Drew assured us that this is a very natural process that takes place near the end. However, there is another scenario which can in happen, in which the patient is actually struggling to breath because the lungs are shutting down. This can lead to great anxiety. This is a situation in which morphine is highly recommended, because it will immediately ease not only that anxiety, but the body will no longer perceive its lack of oxygen, and the patient will be much calmer. I talked with the director of nursing at R Center, and she confirmed that they only use morphine when they see that a patient is struggling, and they use it AFTER informing the family, in very small doses to start. This is something Mom was concerned about. She doesn't want Dad to suffer. But she also doesn't want them to start Dad on morphine without telling her and then he passes without her knowledge. The nursing director assured me that R Center has a distinct protocol regarding the use of morphine (every center is different, Drew said). But, she said to me, "Melinda, you do not ever want to see your family member dying, and struggling at the same time. It is so disheartening; you really don't want to see that." There was something incredibly weighted in not only her words, but her tone, that I took it seriously, and passed it on to Mom with the same emphasis. 

This morning when Mom got home from visiting Dad she confirmed that the order for morphine has been written in an MAR (medical record) for Dad, so it is ready if/when he needs it. He is sleeping very soundly for the moment. And so we continue to wait. 

This Time, It is a Gift

This morning I went to see Dad. When I arrived Mom said, "He's awake!" She told me last night that he was quite alert, although he had no desire to eat. He responded affirmatively to all she said. Dad was still in bed, and when I leaned over, he looked right at me and smiled. I said, "Hi Dad!" and took both of his hands. He started to chuckle and said, "It's too cold!" Oops, sorry Dad, my hands were freezing from being outside. That's when I noticed that I was able to take his hands because they weren't clenched as usual. They were simply lying on top of each other under his blanket. In all the months since Dad first left home, this was the most relaxed I had ever seen him. This was also the most interactive I've seen him since well before Christmas. His eyes would be closed for several minutes, then they would open slightly and he would look around, and if I made eye contact with him he would nod and smile, mumble something I couldn't make out. Mom had to leave a few minutes before me, so we were alone. When I finally got up, I leaned over and took Dad's hand and said,"I have to go, but I'll be back," and he nodded and said, "Yeah." Then I put one hand on his cheek, and pressed my face against his other cheek. And I felt him patting my arm.

I went to see him again this afternoon. His hands were more restless. They kept moving towards each other as if they were going to clasp together again, but it never quite happened, and he would quiet down. I read in the hospice guide that this is one of the signs one may see towards the end, and that I should not try to restrain or quiet him down physically, just keep talking to him or play music. I rubbed his arm and chest, played music, and after a few seconds his hands would quiet down again.

This time, it is a gift.

Maybe the End isn't That Far?

My dear friends, I am writing on behalf of our family to ask for prayers for Dad. He was diagnosed with double pneumonia Monday morning. He had not been eating much, had the occasional low-grade fever, and occasionally was coughing phlegm. The doctor at R Center ordered an X-ray Monday and was able to make an immediate diagnosis. He prescribed an antibiotic for the infection, and Tylenol for the fever. In the meantime Dad was sort of eating, but refused to drink anything except pre-thickened juice from a small spoon. 

Today he did not eat or drink anything. He refused to open his mouth for anything, including his meds, so by this afternoon the doctor gave his antibiotics by injection. He told Mom that Dad seemed to be laboring to breathe, so he recommended giving very low doses of morphine by mouth. Mom was very reluctant to do this because when her mother was at the end of her battle with cancer, she was given morphine, and succumbed within a day. The doctor said that my grandma must have been given a very high dose, and assured Mom that this was a very low dose he was recommending. After some deliberation Mom asked me to call a friend, who is a pharmacist. The friend was able to assure us that all the morphine would do is alleviate any pain or discomfort Dad might be experiencing. "But will it make him pass?" "Oh he's going to pass, sooner or later, but the morphine will make his life much easier." "So if he succumbs, the morphine will not be the cause?" "NO, not at all." 

I was happy to convey this information to Mom, because my concern is that IF she agrees to morphine and Dad passes, she will be agonizing over whether she hastened his demise. For this evening she decided to do nothing, as Dad seemed to be sleeping very peacefully, and the LNA was shortly going to be putting him to bed. First thing tomorrow an NP is going to be evaluating him, in order to see if he qualifies for hospice. Mom will meet with a nurse from the hospice agency. 

It seems to me, based on observation of other people's experiences, that these things tend to run according to pattern. Dad may recover from pneumonia, but if he doesn't eat for long enough (maybe due to discomfort?) he will probably forget how to swallow. He is already having trouble swallowing. In his condition, not taking in any food or fluid over a long enough period can signal the end is near. What we all want for him is the end, whenever it comes, to be smooth, without struggle. 

Meditation on a Family Funeral

A week ago today one of Mike's uncles passed. This weekend we traveled to NY for his memorial service. Uncle MK was probably a few years younger than Dad, but he was of the same generation, and his path to the US had a familiar ring. He immigrated to continue his studies, then built a career and raised his family as Taiwanese American citizens. Uncle MK helped found a Taiwanese church and was an active elder. After his passing, many friends from this church came to say their farewells and pay tribute to a beloved elder, friend and brother.

The funeral was entirely in Taiwanese, with translation for key spoken/read parts (sermon, prayers, announcements, eulogies and tributes). For anyone who is an old hand at translated worship services, you know that this makes the entire experience run almost twice as long. In this case it was about 90 minutes, which Mom later said is actually pretty typical, even for non-translated services.

At one point, a choir comprised of friends of Uncle MK and his family sang, If it was not the most technically optimal performance, what more than made up for it was the heartfelt passion that everyone poured into the song. I was suddenly struck with one of those, "this is SO TAIWANESE," thoughts. And for the next few minutes I was back in church where Dad was preaching. A choir was singing, but instead of wondering when it was going to be over, I was wishing that time would stand still, just for a while. And the tears came, both for Uncle and Dad, for times that are now memories, that one day will pass into legend. With their lives they gifted us our unique Taiwanese heritage, which we have claimed and now remade as Taiwanese American, which we in turn will gift to our children. The evolution and legend of this heritage is made precious by our desire to see it so, and in the telling of these stories once and again.

As the service drew to a close, the pastor pronounced the benediction, which was not translated, but once again I could hear Dad's voice clearly in my head, saying, "May the peace of our heavenly Lord, the love of Jesus Christ, and the fellowship of the holy spirit be with you, now and forevermore." I could hear his desire to say these words with conviction, the way his voice always cracked when he emphasized " the LOVE of Jesus Christ," because Dad was not a loud man, and the benediction was the only time he had to project his voice without a mic. Once again, I was overcome, because I knew I would never hear him say these words again. For when he is finally restored, there will be no longer any need to say these words.

When the End is.......Further Away Than We Think.

Last Friday Dad was taken off hospice. 9 months ago when we agreed to hospice and palliative care, we were told that in the event that Dad stabilized and seemed to be doing well, he could be taken off. We nodded to all this, but without thinking it could actually happen. We started preparing for the eventuality of his passing. Mom made arrangements with a local funeral home, and purchased a plot in the town cemetery. All this was to avoid, "having to make huge decisions while grieving." It seemed like prudent advice at the time, and looking back I don't think we have any regrets about pre-planning. But it meant that we were in a certain head space regarding the near future. 

Well, against expectations (though I'm told this is normal), Dad has not only stabilized, he has "Plateaued," an official term used by hospice agencies to mean that the patients demise is no longer imminent, or even within projection. I was not fully aware of the fact that his term was actually up back in December, but the hospice nurse had examined him and referred him for another 60 days. During this time his weight has remained more or less consistent, and his appetite continues to know no bounds. As long as someone is there to feed him, he will keep eating. His color is pretty good, and so is his breathing. The only issue that affects his care is the fact that he has become incredibly rigid. During care he will get so tense that it is very difficult to move him and hold him in place. One morning the nurse who went to wake him up reported two large bruises on his torso, under his arm and on his back. The hospice nurse examined him and determined that because of his rigidity he was pushing back against the LNA's hand while she was cleaning and changing him. This can cause a lot of bruising. So his care has been modified to the requirement of two people at all times. 

Mom kept hanging on to the hope that an outside evaluation by another NP might extend his his hospice care a while longer, but even though the NP herself was hopeful, in the end the concrete facts didn't bear out the need. Here is where we received a lesson in hospice care. It was created in the late 60s for the comfort of terminally ill patients who were projected to live for 6 months or less. If I think back to that time period, I'm pretty sure that patients with Alzheimer's and late stage dementia did not make up the majority of patients put on hospice. Though the demographic of patients may have changed, the parameters of hospice qualification have not. As soon as a patient has reached a "plateau," they are deemed no longer, "dying," and taken off. "This is not the way we want it!" exclaimed the NP. "For these patients we really want a term of 2 years, because Alzheimer's is so unpredictable, yet it's obvious they need the comfort care, as well as their primary caregivers!" 

The NP talked about how Dad's weight was steady and his appetite good. Mom exclaimed,"Well that's because I come to feed him every day! He needs someone to feed him or of course he wouldn't eat!" This is when I really appreciated the NP's empathy. "I know it feels like you are being punished for taking such good care of your husband. We hear this all the time. People take care of their loved ones well, and the loved ones hang on or improve, but then the benefit disappears even though the family is still in need, because the love one is still terminal. This system doesn't work well, it penalizes families for good care, which makes no sense at all." 

It took us, and especially Mom a few days to process the change. No longer would an LNA come during the week to feed Dad lunch. This caused Mom not a few moments of angst. "Should I start feeding him lunch as well?" I usually try to let Mom come to her own conclusions, but in this case I felt strongly that adding another feeding to her schedule (she already does this on weekends) was not in her best interest, something she doesn't tend to think about. "I really think you have to let this go. You have things scheduled during the time Dad eats lunch. Like your exercise class, doctor appointments right before or after. Do you really want to take them out? Dad will be fine with the R center staff feeding him. You still feed him breakfast and lunch, that's two good meals a day." She finally decided she would feed him lunch on Tuesdays, and in exchange she wouldn't go in for lunch on Sunday. That will free her to enjoy coffee hour after church and have lunch with us. 

Of bigger concern was some of the physical things hospice paid for. Dad's special chair, a mattress that prevented bed sores, an oxygen tank that was connected to his cpap machine for maximum breathing during sleep, these were all covered by Medicare under the hospice agreement. We are so thankful that the hospice nurse negotiated/arranged for all of these items to remain with Dad and to be paid for by R center. The NP told me it often happens that the facility  will pick up the fee because they see it as necessary to continue caring for a resident. 

It's only been a week, but Mom has adjusted pretty well. We are on vacation week, and yesterday she went shopping with me and the girls for special outfits they needed. For 2 hours she helped the kids try on dress after dress, shoe after shoe. It was the first time she has really interacted with them in a very long time, and we enjoyed the normalcy of it all. We even took time to visit Dad while he was at the tail end of lunch, by request of Elfgirl, who normally hates going to R center. As we were leaving the kids talked about missing having Akong at home, something that didn't occur to me. 

We continue to make financial arrangements, but otherwise we look now at the future as something that could stretch out for a long time to come, or change very shortly, in an instant. And we are okay with that.