In Him There is No Darkness At All

In about one month Dad's 6 month term in hospice care will be up for review. At that time his medical team will decide whether he has been stable enough that he can be weaned off hospice, or whether his decline (which has been incremental) is enough that he will be given another term. It is ironic, but due to Mom's diligent care with feeding and staying on top of the staff at R center, he is doing very well. His weight has not decreased by much, he continues to eat with great appetite, even when he seems to be sleeping, and his color looks pretty good. 

I often wonder how caregivers feel about taking such good care of their loved ones with late state Dementia that it actually prolongs their life. On the one hand, if I were to ask Mom about this, she would indignantly (and probably rightfully) reply, "Well, do you think I should take care of him badly??" On the other hand, it makes the long goodbye even longer. Dad has been very talkative lately, but nothing he says is intelligible, and as I mentioned, he is so determinedly sleepy he sometimes literally snores between bites. Meanwhile, Mom's resources are getting to the point where beginning the process to apply for Medicaid is prudent. 

As I sit and write this, our country is in the middle of an uproar. President Trump's executive order to ban all refugees and immigrants from entering the US has left many, MANY travelers stranded. Whether in US airports where they are being detained, or deported back to their country of origin, even though they hold legal visas and green cards, they are suddenly, officially, unwelcome. I wondered what Dad would say and do were he in his original mind. He has always spoken up in public and forceful tones about equal rights, self-determination, and all the values written in our Constitution. I'm sure he would be LIVID right about now, and on the phone with his colleagues about whether PC(USA) (his and our church denomination) is clear about standing with the ones who need it. He would probably write a letter AND an email to the president. Dad would remind him that he claimed to be Presbyterian, and state that the mission of PC(USA) includes welcoming refugees and immigrants, so he should keep that in mind when issuing executive orders. It would be a VERY long letter, about how un-American, not to mention un-Christian this executive order is, and appeal to his sense of decency. It would not occur to Dad that the president has none, because in his mind everyone is created in the image of God, and therefore should be given the benefit of the doubt. 

But Dad is not in his original mind, he rests at R center, completely unaware that his second home country is roiling with discord. He is missing out. And so it was that I sat in church this morning, saddened by the fact that he is lost to this world that could have used him and his efforts.

Sometimes I think God meets us by using the people around us to put signs into place. Today's sermon text was Micah 6:1-8, and the choir anthem was, "I Want to Walk as a Child of the Light." Now if you are not familiar with this hymn, I encourage you to look it up, because it is truly a light for these troubled times, for anyone who asks, "What am I supposed to do??" I personally, can never get through it without breaking down, because each time some part of it pierces me deep. But today a different verse spoke to me. 

I’m looking for the coming of Christ;

I want to be with Jesus.

When we have run with patience the race,

We shall know the joy of Jesus.

In him there is no darkness at all;

The night and the day are both alike.

The Lamb is the light of the city of God;

Shine in my heart, Lord Jesus.

As I sat there and sang these words, I realized this is where Dad

is headed. Deep in the recesses of his fading mind, he has 
always known this, and it's the one thing he hasn't forgotten.  
No matter how crazy the world gets, even the machinations of 
bad world leaders can't change the fact that we are all marching 
toward this light, if only we can see it. And what about me, 
my family, those around us, the ones who will be left, what do 
we do? We continue the work of those who have gone before 
us, knowing that we too, will one day get there. 

T'was the Night Before Christmas

This morning I read a most beautiful FB post by my sister Eileen, reflecting on how, in spite of how awful 2016 seems to have been, there is still so much to be thankful for. To that end, I post my own reflections.

Some might say, that 2016 was the hardest year for all of us, but especially Mom and Dad. True, Dad experienced a severe decline during the two weeks that we were away, a decline that was the harbinger of things to come. He spent a month in the Geropsyche unit, during which I saw behaviors that I had never seen in him before. It was the year that we came face to face with the reality that Dad could no longer live at home. We just couldn't give him the care he needed round the clock. We had to put him in a nursing facility, something we thought we could avoid, if not forever, for a very long time. It was the year I got pneumonia for the first time ever, knocking me out of commission during what is usually the busiest week of the school year for me. First I was sick from germs, then I was sick from the meds. For the first time I understood how sometimes the cure can be almost more painful than the illness. Yes, from one persepctive 2016 was a banner year, and not in a good way.

But if we turn the picture just a little, I can see that there is so, so much more to be thankful for. And here is where I am gonna name names, because I know some of these people read my blog, and they need to know how much they have meant to me and my family. To begin with, there is Bev H. Bev has enveloped Mom AND Dad in friendship since practically the day they came to NH. She called soon after they arrived, and offered her support. Being loathe to push herself forward, she offered from afar at first. But each Sunday that we saw her at church she would greet Mom and Dad warmly, and sit with them during coffee hour. When we went away and Dad went to respite care, she went to visit him every day and emailed me a report of all the doings. When Dad went to R Center she visited him there. Once Mom was essentially more "free," she invited her on outings to lunch. When Mom went away for a week, and I had to cover for her, Bev went to feed Dad dinner each day because I wasn't able to get there until the bedtime hour. In all of Mom's life (her words) she has never known such a generous, loving, GIVING friend. I'm her daughter, and we sorta hang out, but it has made an immense difference in her life here to have a real friend.

Then there are Eliza and Sean M. Eliza is a friend and fellow partner in ministry at church. One day she emailed and said, "Hey, we on the Children's ministry committee would like to bring dinner to you one week, so just let us know what week works best for you." I was floored, because I've brought dinner to people before, but they are usually very ill, have had surgery, a new baby, death in the family. And I felt a little weird getting dinner when nothing was wrong. Besides, most of the committee members have young kids and work fulltime. So I tried to refuse. Her response was, "your objection is duly noted, but it's going to happen." Well soon the opportunity presented itself when I got laid up with pneumonia. The first day Sean showed up with a 3 course dinner for more than 6 people. It was the bomb, it was so amazing. Then a young lady whom I did not recognize but turned out to be one of the youth Sunday School teachers came with dinner. I also want to thank Chrisann D., and Marie R., because they showed up with dinner as well, and I was so moved because I know how incredibly busy their lives are. Marie R. I want to send particular hugs to because she is a fellow daughter of someone with Alzheimer's. Just texting back and forth some of the wacky, frustrating things our parents do has helped me feel less like we're the only family that has fallen down the rabbit hole.

Separately, there's Cheryl B., Eliza, and Traci C., and Cher B., women I'm starting to consider girlfriends, and I haven't had girlfriends since my single days! These women get that my life is more than just Mom and Dad.  I have 3 daughters whom I love dearly, but sometimes want to strangle on a daily basis. They listen to my rants without judgement, offering only commiseration and support, laughter, and the total, "I get it. Truly." Without them my life would be sparser indeed.

This reflection would not be complete without a huge shout out and thank you to all the folks at Bedford Presbyterian Church. From the ladies in handbell choir, our fearless director Barb F. to my wonderful pastors Karen and John. They have visited with Dad, prayed with him, sung to him. All of this makes a huge difference, not only to Dad but to Mom as well. People at church ask after Dad, ask me how Mom is doing. Whenever I go, I know that people CARE. They really do.

Pastor John likes to say, "Church is better every Sunday when y'all are here."  To my friends and family, my community, our lives are better this year because y'all are here. Here with us. Merry Christmas.
12:11 am. 12/25/2016.

Mindful Meditation: Or, Zen in the art of feeding

Mom is on respite and taking care of business in CA, so for the past few days I have been covering for her by feeding Dad most of his meals and getting him ready for bed. Each meal follows the same basic routine: A glass of OJ first, because he has been sleeping for some time beforehand and is very thirsty. Then, for breakfast, it's a whole banana, that he eats steadily one bite at a time, followed by a pureed meal. Dad had had a lot of trouble with textures for some months, so by the time he came to R Center he was on a pureed diet. This means that foods you and I normally bite and chew are blended until they are completely smooth and the consistency of pudding or mashed potatoes (we don't know why banana is an exception!). It may seem off putting to eat meat and veggies that looks like a scoop of paste, but it enables Dad to get a full days worth of calories, as long as he eats it all. Many residents at R Center are self-feeding, but some require assistance, that ranges from having their food cut up into finger food sizes, to being spoon fed. Dad is in the latter category, so he is dependent on someone feeding him one bite at a time. Mom did not have complete confidence in the staff to do this for Dad at every meal, which is understandable if your personal priority is to make sure a person gets a full meal. There are not enough staff at any facility on this planet for each person to have their own personal feeding attendant. So Mom has gone in every weekday to feed him breakfast and dinner. On weekends she goes in for all 3 meals. During the week we are blessed to have an LNA to come in and feed him lunch. This is a hospice benefit and frees up Mom just enough to she can attend to herself and have a break.

When you spoonfeed a person all of their meals day after day, you start to notice every gesture of their mouth, every chewing pattern, whether they have truly swallowed their food, if they have food caught between their lips, or when they are about to burp. It is not unlike feeding a baby or young toddler. The difference with feeding a person with late stage Alzheimer's is that it takes well over an hour to feed a single meal, with each bite taking up to a minute or more from start to finish. Between bites you watch to see whether they have fully swallowed their food, because if they haven't they may refuse another. There is NO HURRYING a person along when you are feeding someone in this condition. This morning in the middle of breakfast Dad suddenly stopped eating. One moment he was eating happily, and the next he was pouching his food somewhere, not swallowing. For several minutes I tried to see if offering him juice would encourage him to swallow and continue. This tactic works about 30% of the time (no precise studies have been done but this is my guess :) ). But this time it had no effect, and he was starting to snore. No amount of calling and rubbing his face and chest could get him to open his eyes for more than a second. Normally at this point if the resident is being fed by a staff member, they will either assume he was done and clear away the tray, or they will move on to someone else who IS eating and maybe come back to him later. If they are able. What I decided to do was take a much needed trip to the bathroom, so I asked the nurse to not let anyone take his tray because I was coming back. When I got back I rubbed his chest and called his name and he woke right up and was like, "Oh yeah!" And he started eating again, finishing just about everything on his tray. It was as if he just needed a break and re-set.

It seems incredible I can sit here 2 to 3 times a day, for well over an hour, feeding one spoon of food after another into my dad. Certainly I can understand why staff cannot do this. But there is an element of mindfulness to this time. I stop only to change the music when one playlist ends. Otherwise my attention is entirely focused on watching Dad chew, Dad swallow, Dad breathe between bites or open his lips for more. If he starts to pouch his food, I think about what I can try to get him to swallow. I notice when he has detected a bit of texture, like a stray raspberry seed in his yogurt, or fiber in his roast beef. When this happens he will work it over between his lips for what seems like forever, until it either dissolves, or he can spit it out. I can recognize that turn of his lips when it's coming and get the napkin ready so it doesn't land in his lap. When I hold the straw to his lips I watch him swallow and know when he doesn't want any more juice by the way his lips start to relax.

In this way I've entered a zone where my mind is both in a state of laser-like focus on all of Dad's movements and habit, and simultaneous completely relaxed with the way one meal can proceed and end differently from another. There is no, "This the way it goes," expectation with someone who has Alzheimer's. One day might move along a little faster, and another might crawl along at snail's pace, and my brain has learned to slow down and accept these differences as they come.

When I sit with Dad like this I am treated to his momentary occasions of interactive energy and lucidity. Yesterday when I went in at lunchtime and greeted him, he opened his eyes, looked at me and smiled, saying, "Are you inviting me to lunch?" And when I said, "Yes, I am!" he looked so happy I thought he was going cry. This morning after breakfast he suddenly opened his eyes, and asked me,"The children, where are the children?" I said, "They're at church," and he said, "Church?" "Yes, they went to church," And he nodded and said, "OK," and closed his eyes again. These moments would not happen without my actually being there. When Mom goes in I hear about her interactions, and they are great. But when I go in, I have my own, and it's an incredible gift.

A Good Visit Day in a Not So Good Week

This week has been a very challenging one for either Mom or Dad, depending on how you look at it. Apparently most of the regular staff at R Center are out on vacation or some kind of leave. In their place Mom has seen subs from an agency, and a host of new faces who appear to be newbies. In her opinion the subs are actually very good. They tend to be experienced, and many are trained in working with patients with Dementia. They announce themselves, and tell the patient what they are going to do before they do it. In contrast, the newbies tend to just start in on their task without so much as a howdy. This, as some of you may know, is extremely jarring to someone with Dementia, especially if their sight is not good. As a result Dad has been pretty tense all week.

Yesterday though, Mom came home after putting him to bed, looking quite happy. Apparently one of our pastors, Pastor J, went to see him. He had arrived shortly before Mom and sung, "Amazing Grace," to him. Well, it must've done something dramatic, because when Mom got there Dad's eyes were wide open and very bright, even though he wasn't wearing his glasses. Normally his eyes are closed until you call his name, and even when or if they open, it's pretty momentary. But Dad looked bright-eyed and much more interactive, which is a change from lately. He asked Mom, "Who is that?" Mom said, "It's Pastor J, Bok-Su (Pastor in Taiwanese)," and Dad nodded as if to say, "Ah." Later Pastor J prayed and just before he started Dad folded his hands.

This has been a bright spot in an otherwise aggravating week. In addition to staff issues, a lot of Dad's clothing have gone missing. After a couple of things accidentally got taken to the laundry, the director of nursing advised us to put nametags on all of Dad's clothing. This we did, and yesterday Mom took a pile of pants and shirts newly tagged, to Dad's room and put them in his dresser. This morning she came home and told me that two of his pants were missing. Also missing was a blanket he wears during the day, that she put away last night after putting Dad to bead.  I have a hard time wrapping my head around clothes that disappear even before they get worn, but I have heard this is a common problem in nursing facilities. Eventually they will probably turn up. But now I will be looking for iron-on or sew-on nametags so they won't fall as easily.

A very boring update :)

Well, it's been over a month since my last post. For all the friends and readers who've been checking in to make sure Dad is okay, thank you so much. The main reason I haven't written is because Dad has been pretty stable since the last post. As of this writing he remains so. Hospice has been amazing for him. He continues to have "good days," when he is pretty alert and engages with visitors, talks to Mom, and is very cooperative with his LNAs. Occasionally he has a "bad day," which I define as him appearing to shut down. He keeps his eyes closed, eats very little, and doesn't respond much even to Mom. Sometimes he has two consecutive bad days, followed by a string of good days.

Bad days used to stress Mom out greatly. She would come home convinced that Dad was declining rapidly. She would attribute his day to lack of consistent care, or just gradual decline. This would lead to sleepless or restless nights, as she tried to puzzle out what the cause behind his non-responsiveness. We suggested counseling, but she wasn't really into the concept. I found her a 5 minute bedtime yoga video, and she liked it a lot, found it helpful. But she wouldn't do it consistently.

The key to Dad's mood was discovered by accident a couple of weeks ago. All of his regular LNAs went on vacation, and even his hospice LNA took a week off to move. This meant that Dad was cared for by LNAs from another floor who were not familiar to him or with his quirks. In the same week a new LNA was introduced on his floor, and she was green as can be. She didn't know the proper way to approach someone with dementia, and she was also very petite and certainly not strong enough to manage him alone. Nothing makes Dad close in and shut down faster than a caregiver who is unfamiliar and doesn't seem to know what they are doing. A week went by, during which Dad kept his eyes firmly shut, shook his head when Mom tried to ask him what was wrong, and barely ate. Mom barely slept, and I started to wonder if we were in yet another stage. During the following weekend, his regular LNA came back, and wow, what a difference! His eyes flew open, and he smiled and nodded when she started on his routine.

It's been a week since this all went down, and as far as I can tell, Dad is back to his regular self. He has his alert days, and his sleepy days, his hungry days and his not so hungry days. Mom has taken to napping in the afternoons, which I think is a wise move. My only regret is that I haven't been able to visit much this summer because of the kids. I can take them with me, but then the visit lasts a very short while before they get restless. Fortunately, school is starting in a couple of weeks, and I will be free during days again.

When Hospice Is a Good Thing

Today Dad has been back at R Center for a little over a week. The care team at the GPU determined that he was stable enough to be released. At our last meeting both the social worker and palliative care doc encouraged us to enter Dad in hospice, on the grounds that 1) he surely qualified, and 2) he would get a lot more personalized care. So as soon as Dad was settled in, we contacted two local hospice agencies. Both came recommended to us, and the head nurse of the dementia unit where Dad is living told me she had experiences with both, knew how to work with them, and would surely let me know if they were not doing their job. We had an admission interview and assessment with both agencies, decided on one, and Hospice began Friday morning. 

The way Hospice works is, the patient has a team consisting of a visiting nurse (RN), a nurse's aide (LNA), social worker, chaplain, and volunteers. The RN will visit Dad twice a week to check on his condition, make sure he is not experiencing discomfort, and to take measures if he is. The LNA will come 5 mornings a week to administer care. In Dad's case she will get him washed up, dressed, and ready for the day, feed him breakfast if she can. The social worker comes once a week or every other week, the chaplain the same. The volunteer will come a few times each week to hang out with Dad, do things with him that he is interested in, which might mean reading to him, listening to music, or just sitting. I'm not sure what happens during that time as a patient will dementia continues to fail, but they are there. All members of the team will report to us how their visit went, and to the nurse if they notice anything new. If at any time we ourselves notice a problem, we should call the RN and they will take care of it. As things start changing and Dad gets closer to the end, the visits will increase in frequency as needed. After he passes, the chaplain will continue to follow up with us for (I think) a year. 

In addition, Dad got some new equipment. He has some kind of air mattress that is much more comfortable for someone who is bedbound, as well as a reclining wheelchair that helps prevent bedsores. 

Ironically, since Dad has settled in at R Center and Hospice has begun, he has suddenly gotten a second wind! He seems very happy to see Mom and me when we visit, and is suddenly trying to become more mobile. One day the nurse came into his room and found him standing up, trying to open one of his dresser drawers. As a result he is now on a new status, which means they are using a two person assist for toileting instead of the hoyer lift, which he much prefers. Also, when he is sitting in the chair, he is in the hallway instead of his room. I used to wonder why people in chairs were sitting in the hallway, but it's so they are always within sight of staff, in case they suddenly try to get up. Of course, after a couple of days of being frisky and chatty, Dad will suddenly have a day where he naps practically the entire day. But Mom has been wheeling him outside into a park like area across the parking lot, and he loves that. One day when she wheeled him out there he looked around and said, "Oh this is nice, just the two of us." His appetite seems to have returned as well. Since entering R Center, he has gained 3 lbs in about a week's time. This seems like a strange state of affairs for someone on Hospice, but I have read and have been told that many people on Hospice end up living longer than initially projected. 

The only thing that makes Mom sad is that Dad will occasionally ask if he can go home. A fair question, since he seems to be doing so well. She can only tell him, "No you need to stay here where so many people can take care of you." I have guilt feelings because I know were it not for the kids, she would try to bring him home. And it would almost seem feasible, just three adults caring for him. I don't think she is resentful, it's just the way things are. On the other hand, I feel like her being home with the kids gives her a daily dose of normal life. If Dad were home her days and evenings would be consumed with taking care of Dad, just because she wouldn't be able to stop herself. The way things are now, she can go twice a day and feed him dinner, something they both enjoy, hang out for a while, and let the staff do all the heavy work. The last few days she would come home and tell me about some hilarious thing Dad said, like the other day when he asked her if she was married! Even when she remembers that she bursts again into laughter. She is honestly not sad about that, because, "I know this just happens." 

Turning the Corner

Today marks Day 6 that Dad has received a higher dose of Zyprexa, and Day 6 of stability. From a psychiatric standpoint, he is stable enough to be discharged from the GPU, and stable enough to go back to R Center, the nursing home he was in. All told Dad has been in the GPU for almost 4 weeks, the longest he has been anywhere since leaving home over a month ago. We are so thankful to his entire care team at the GPU, but most especially to Palliative care Doc, who has guided us through the decisions we've made about how we want Dad to spend the remainder of his time.

Theoretically, Dad was cleared on Monday, 6/23, but a medical issue cropped up that needed to be clarified between all parties before he could be released. It seems that in the last 2 weeks Dad's red blood cell count has dropped quite a bit. For whatever reason (I still don't understand how or why a test was done, since it was a surprise to Palliative care Doc), a blood draw was done on Monday and his count had dropped from 34 to 21. So he is definitely anemic. Palliative care doc called and left a voicemail saying he was going to repeat the test in 24 hours to make sure it wasn't a math error. On Tuesday he called and left another voicemail saying the low number was correct, and we now had to decide what, if anything, we wanted to do to pursue it. For two days I was in the middle of dress rehearsals for the girls' dance concert this weekend, and was barely able to listen to the voicemails and call back to leave HIM a voicemail. So it wasn't until today that we were able to meet. I learned that Dad could not be cleared for discharge until we had decided what we wanted to do about the anemia.

There are a couple of schools of thought concerning what to do when a patient is discovered to have anemia. Normally, if the patient were already at the hospital, they would be wheeled to the proper departments and have a battery of tests done: endoscopy, colonoscopy, imaging. However, in Dad's case, a person with late stage dementia, such testing can seem invasive and instigatory. The logistics of testing would probably involved Dad being either physically or chemically restrained. Knowing how Dad reacted to simply having an IV drip in his arm only a few weeks ago, we understood that this would be a problem. Initially Mom thought, why not keep him here a few more nights and do an endoscopic procedure. Dad had one done a few years ago. It was a very simple thing where they went in, looked around, saw an ulcer and lasered it. Done. The problem is, what seemed very simple a few years ago, is not simple now. Dad would have to be anesthetized, with an IV, AFTER a prep process. To even a rational person, this process is uncomfortable. To a person who rarely understands why anything unusual is happening, this could seem inexplicable, and downright terrifying. So she elected to not pursue it.

What does this mean? It means that we will likely not find out why Dad is anemic, and his anemia will continue. We can give him iron supplements (orally), hoping he will take them. But since we are not going to keep doing blood draws, we will only know by observation whether the supplements are helping. If they don't work, his anemia could get worse, and other than treating any symptoms of discomfort (although Palliative care Doc didn't think there should be any), we will do nothing. While this can initially feel so counter intuitive, as if we are abandoning Dad to his fate, Palliative care Doc reminded us of our goal: We want Dad to be comfortable, happy, and peaceful. The anemia may be another, "closing event," which may end in a cardiac event. But if he has shorter time that is as good as the last few days have been, we will have achieved our goal, and Dad will have gone in the best way possible. This instead of us poking and prodding and MAYBE finding a cause, then treating it, to give him a little more time, but in the meantime making him quite unhappy.

So what have the past few days been like for him? When Mom went to visit him, he was up in his chair, in the common room. A few times she arrived to find that he had already eaten his meal, whereas before he would refuse all food until she arrived. One day over the weekend when she arrived, he told the nurse, "This is my wife, Phek-Hun. She's my best friend." He would let the nurses feed him and thank them afterwards. He has started to experience the return of toileting urges, and would tell Mom that he needed to go. Once he said, "Well, let's just go home then so I can go to the bathroom." My sister arrived two days ago for a visit, and when she walked in Mom said, "Hey, it's Eileen!" Dad took her hand, looked right at her and kept repeating her name (Dad hasn't seen her since February). When I went to see him today, I took his hand and called his name. He opened his eyes, saw him and started nodding and smiling, saying, "Oh very good, very good!"

What surprises me most is the change in his attention and ability to engage. I assumed that because he was taking an anti-psychotic, he would be sedated most of the time, and he did seem very sleepy in the beginning. But in his lucid moments, which happen more frequently, he is very relaxed, alert, and happy to see people, instead of shutting down and wanting everyone to go away and leave him alone.

Tomorrow his entire care team will meet at their usual time. The social worker wants to make sure that all docs are on the same page, and ready to discharge. Barring any bizarre quirks, Dad should be ready to go by the afternoon. Palliative care Doc told us that the most critical time is the time of transfer. It is upon us to make it absolutely clear to R Center that Dad is on Palliative care, actually Hospice care (as soon as we can make it happen). Therefore, there will be no midnight ER runs, no calls telling us they are ordering some test. Even though the care team will have a complete write-up to give them, we are the front line in making sure our goals are met. We would appreciate prayers, especially for Mom during this transition. She's a little anxious because she has gotten so comfortable with the care Dad has gotten at GPU. She knows that it will not be the same at a nursing home, which is just the way things are. We are so thankful to R Center for keeping a bed for Dad as long as they did. Now he will be only 5 minutes away, we can see him any time, and so can the kids. We are blessed.