My Hospice Experience

As I have been looking back over this past year, I realize how much of November and December of 2021 was a blur to me. Life crawled by, yet went so fast. On December 21st of 2021, we signed Elise into the care of hospice. It was a truly numbing experience. I "knew" it was most likely that Elise would pass away before I would. But, to sit with that realization as it happens was pretty surreal. We were as "prepared" as could be I believe, but that did not make it any easier. 

First, it is probably important to note that I didn't want her to die at home. The idea of it all was terrifying to me. My biggest fear was that I didn't want her to "haunt" me in some way for years to come. I didn't want to see her image as I rounded every corner and walked into every room. I did not like any of it! As with all good marriages, we felt differently about this issue. I was honest from the beginning that my biggest issue was fear. During Elise's life, I sat with her through so many experiences that terrified me that I cannot even begin to count them. This would be no different. Home was where she, and we, belonged. 

We are fortunate to have Good Shephard Homecare and Hospice here in Manhattan. They are a great organization that provides palliative and hospice care both in homes and in their own facility. With Christmas coming 4 days later, there was a push to get everything lined up for her to ensure that we would be set over the holidays. In the end, almost none of the services were needed. She passed away peacefully, at home, in the early morning hours of Christmas Day.

My initial experience with hospice was frustration. At the time, I wrote it off as we were going through a stressful time, which was true. After thinking about it for a couple of months, I began to realize that hospice wasn't really all that different from our daily life. The one exception is that they handled everything related to the pharmacy. We had more than 10 years experience dealing with pharmacies in Elise's care. In our house, we navigated the system far better than most people. Working with the pharmacy was something that we did many times per month over those 10 years. So, their being "helpful" was really more of a hinderance to getting things done quickly. I don't believe that most people would have this same sentiment. But, I have come to realize that most people didn't lead the type of life we were leading. 

When I look back at Elise's life after cancer, it could probably be viewed as a 10+ year hospice experience. Kelly and I, and several helpers over the years, provided around the clock care for her 365 days per year. If she needed moved - we moved her. If she needed fed - we fed her. If she needed cleaned - we cleaned her. If she needed medicine - we medicated her. It was a full time job for multiple people for several years. Hospice care was no different. Deciding to keep her at home, as it turned out, really was no burden at all. It was no different than it had been all that time. We were used to tracking everything that was happening with her, giving medicine at specific times and overall managing her care. 

As I think back about the decision to put her into hospice care, I think it really was the mental shift that is most challenging for me. Like many, I viewed it as "throwing in the towel". We spent 10+ years pushing hard to help her make improvements, increase her quality of life, and searching for the next thing to help "cure" whatever was ailing her at the moment. But, signing the hospice paperwork was an admission that she would not get better. Outside of a miracle, we were out of options. 

When we left Children's Mercy, during one of her stays the last two months of her life, we had a legal document that allowed us refuse further treatment for her in the instance that she would experience something major (like heart failure for example) while she was at home before we put her in to hospice care. This was a document that we could use at our discretion. Nobody had to know that we had the document. And, to this day, I'm not positive we mentioned it to anyone. In the State of Kansas, even the parents cannot refuse life saving measures for their child without a doctor signing off on it. With this paper, we could stop the EMT's from treating her at our home and stop a local medical team from going any further. Think of it like a do not resuscitate order, but for overall medical care. That piece of paper, and hospice care, are the two heaviest pieces of paper I have ever signed in my life. No parent should experience that. 

Abby painted the image in this blog as Elise's last Christmas gift. Thanks to Elise's last helper Emma, this had become kind of a mantra for Elise the last couple of years. Honestly, she probably didn't need the reminder. She did big and scary things every day. However, I have continued to appreciate it and use that mantra still today. 

Would I recommend hospice care for others? Absolutely! While I cannot say that it made everything "easier" for us, it was still worth it. The night Elise died, there were no lights and sirens. No gawking neighbors. No emergency situation. Instead, it was a call to the nurse line, a home visit from the nurse, and ultimately a visit from the funeral home to pick her up. No bright flashing lights and loud radio chatter. Instead, it was an unmarked minivan and two well dressed gentlemen as professional as can be. Quiet. Peaceful. Respectful. Not scary at all. 

In one of our last hospital stays, the palliative care team told us we may eventually view the hospice opportunity as a gift. Most people don't get to plan how they leave this earth. I believe that Elise did everything she could to guide us through the process and I believe that we honored all that she wanted and needed until the very end. It truly was a gift, not just from hospice, but I believe from Elise and God as well. Not scary at all. And I am thankful for that.

Amazing Creatures

 

She always loved a car ride.

Kelly and I were parents to a dog well before we had kids. We raised our first dog, Bela, (named after the composer Bela Bartok - not some princess named Bella) from the time she was 8 weeks old. She was part of our lives for 7 years before Elise came along. She was not happy to be demoted in the family when a baby came along. She really wasn't happy to be demoted once again when Abby came along either.

Bela was frequently agitated by young kids pulling on her, trying to lay on her, and all the things that kids generally liked to do. But, when Elise was diagnosed with cancer, Bela instantly became a different dog. She would lay in Elise's bed the entire time Elise was in the hospital. She was gentler with Elise and it always appeared she just knew. I was always amazed by that. Bela even had seizures. We had no idea what we learned about our dog with seizures would set the foundation for the next 15+ years of our life with both a dog and child with seizures. Bela gave us 14+ great years and was with us during some serious life changing times. She was a great dog.

Life was drastically different between when we got Bela pre-kids and when she passed away more than 14 years later. Kelly and I needed a break. We had way more responsibilities than we wanted and adding a dog to the mix was not something we wanted. We told Abby we were going to take a year off and we could revisit getting another dog in a year. Each year she reminded us of that promise as we just didn't want to make the move to getting our next dog.

Sitting by the fire

But, with time now on our hands, we adopted Opal during the pandemic. She was about three years old (she was a stray so nobody is sure) and was a great fit for us right away. Elise's life consisted of a lot of equipment and our van was a little different than what most people have. All things that can be a bit scary for a dog. But, Opal was oblivious. She did not seem to care at all about any of the unusual aspects of our life. She just came to make herself at home and settled in easily.

Over the next couple of years, I noticed that Opal had many of the same traits of our last dog Bela. She didn't pay Elise a lot of attention. But, she was quick to lay in Elise's chair or her bed whenever Elise would go to the hospital. She didn't do these things when Elise went to school, but she would quickly do them if something was wrong. She could just sense it. That always amazed me.

The night that Elise passed away, we were all in her bedroom. Abby and Kelly were laying on mattresses on the floor and I was sitting in the chair next to Elise's bed. I was petting the dog with one hand and holding Elise's hand with the other. Lots of emotions. Like always, Opal would just sit there. She knew.

I finally decided to lay down with the others and try to get some sleep. After about 30 minutes, Opal got up and was pacing all over the room. I called her to come back to lay next to me and she would not lay down. I couldn't get her to just relax so I got back up and moved back to the chair. In that moment I knew it was all over. Elise was gone.

I have thought about that night many times over the past year. More than anything, I just wish I understood how dogs know things like this? How can they sense it? More than anything, I am just amazed by them. I appreciate their loving nature and the way they connect to us in ways that we cannot understand. They are truly amazing creatures.

Last Day of School

October, November and December are full of some of the most challenging times of my life as a father and as a human being. Cancer diagnosis and SO MANY hospitalizations happened over those months during a 12 year period. And obviously, this past December lead to Elise passing away which presented an entirely different set of challenges. My Facebook memories are full of challenging posts from this time of year.

On November 4, 2021 I picked Elise up from school for the last time. That has been weighing heavily on my mind in the past few weeks. I talked A LOT with Elise's teacher by text message throughout the school year. Dozens of times over the years I dropped everything to pick her up from school and deal with whatever health issue was happening at the time. November 4th was really no different than the many other times. As happened many times in these situations, her health struggles spiraled out of control and she landed herself in the hospital. Sadly, she was not able to bounce back this time.

I don't really know why there is a significance to me in Elise's last day of school. I suppose because it was a day like any other. It was not unusual for me to have to pick her up. It was not unusual to spend the night in the local ER only to drive to Kansas City to the hospital in the early morning hours. This was our "normal". 

As I look back through the chain of text messages between myself and Elise's teacher, I read a lot of challenging times. None of it was easy, but it was the life I led. I suppose, unknowingly, November 4th was the day that Elise's GI system began to fail and some of the hardest decisions I have ever had to make began to move into motion.

I am fortunate to say that Elise had many great teachers, paras and helpers over the years. While November 4th will be a challenging day, I am appreciative of the impact that those people had on her life and mine.

Why Can't We Talk About Death?

It has been nine and a half months since Elise passed away. Leading up to her death, and in the nine months since she passed away, I have really struggled to comprehend why we are so terrible about talking about death in our society. Especially when so many other societies and cultures embrace death so openly.

As I have reflected on this, I think we as a society focus too much on the how and why somebody has died, rather than the life they lived. As a society, we want the "gossip" and "juicy details", but we are so quick to run away from things that make us uncomfortable. I have friends that have lost loved ones in some truly heinous crimes, terrible accidents, suicide and through debilitating illness. For all of them (and myself) the result is the same. Their loved one is gone! There is deep sadness that comes with the death of a loved one no matter the circumstances. 

The circumstances surrounding the death of Elise are a part of the grief process for me, but that doesn't mean I can't or don't want to talk about it. She is gone and no amount of avoidance is going to bring her back or bring about great healing for me. It doesn't work that way! Rather than some vague blog post, I'll go through some of how this happened in our house.

Over numerous years, Elise experienced several episodes of her gastrointestinal (GI) system failing on her. Various medical interventions over the years worked to get her back on track. Sometimes this was a slow process and sometimes it happened pretty quickly. During one of these times of failure, in November of 2021, the medical team was not able to find any real cause. The struggle for a cause had gone on for more than a week and the doctor on service that week mentioned casually, "this is common in kids with brain dysfunction". It was such a passing comment that I was caught off guard. As we began to discuss this, the doctor was shocked that this was never something discussed with us previously.

We were fortunate to have started a relationship with the palliative care team the year before during another time of tremendous struggle for Elise. The doctor offered to have that team come by and discuss this more in depth which I certainly welcomed. When the palliative care team showed up later that day, they had this book to share with me. Those that know me well know that I am not a huge reader. Seeing that book just reminded me of homework and I had very little interest! However, I skimmed it and told Kelly it looked like it had great information. She is the reader in our relationship. She read portions, made lots of notes and felt it was full of some potentially helpful information. Sometime that following week, I felt that I needed to take a more serious look at the book and see what it said. As it turned out, I read the whole thing in about three days. Trust me, that is a record for me! So much of that book could have been a blueprint for our life with Elise. We wished we would have had it years earlier. It may not have changed the outcome, but we would have felt more informed as we struggled along with so many of the "common" aspects of our child with "severe neurological impairment".

Elise went into the hospital because she could not keep anything down and was vomiting constantly. As often happened, the vomiting lead to higher seizure activity and the hunt was on for a cause. She went through periods of complete "gut rest", which is taking in no food or fluids. In the last couple months of her life, she would go in to the hospital with her GI system not working and things would immediately improve. After a couple of days in the hospital, we would be sent home only for failure to start within hours of being home. It was a challenging time for sure. In one of those short stints at home, in the midst of GI failure, it occurred to us that maybe this was her way of communicating with us. She could not say "I don't want to do this any more." But, she could show vast improvement in the hospital only to be sent home to go right back to square one. We changed everything we could in how and what she was being fed and nothing was working.

The last time she was released from the hospital, we knew that it was completely up to her what would happen. She would either thrive on this new plan, or we were out of options and had to call in hospice. Nobody wants that to be their two options. In the end, her GI system failed and her body began to shut down. Her time on hospice was pretty short and the end came very peacefully. For that I am thankful.

Losing a child is "out of order" in the circle of life. It is hard to comprehend. There is an odd peace and also so much internal struggle. It is hard to explain. When talking with someone that has recently lost a love one, don't be afraid to ask them about it. You should be able to tell in the first few seconds if they want to talk about it or not. Sit in your own discomfort and deal with it. You will get to leave that conversation and your discomfort will be over soon. The person who lost the love one will be sitting with that loss of a loved one for the rest of their lives.

Does God Really Answer Prayers?

This is a topic I have wrestled with for YEARS! If you are only here for the synopsis of my thoughts on this topic, the answer is yes. But, the answer may not come in your time frame and/or you may not like the answer when it comes.

I generally contemplate this thought when going through some difficult health situation or when seeing friends and acquaintances going through something difficult. We (collective we as a society) grasp on to the "I'm praying hard for you", "Praise God for answering our prayers", "I know that God will make everything alright for you". If we get the outcome that we want, then life is full of, "Prayer works!", "Thank God for answering our prayers", "Your faith brought you through", etc. But, how true is all of this? Let me walk you through a multiple year example of this in my life.

Back in 2009, my daughter Elise was diagnosed with cancer. Obviously, there were a ton of prayers for complete healing for her by our friends, family, acquaintances and people we didn't even know. After many months of treatment, she was cancer free. Our prayers were answered! Right? During cancer treatment, Elise contracted a virus on her brain and lost all of her skills up to that point in her life. In case you wondered, I don't think anyone prayed for that to happen to her. She was cancer free, but now she was saddled with a lifetime of issues that remained from that brain infection. Was this God's answer to anyone's prayers? She was cancer free, but now had an entirely different issue.

During the last 12 years of her life, Elise suffered from a severe form of seizures that impacted her life in many ways. Many times per year she would have a day where the seizures were out of control and we would have to do some kind of medical intervention. Before it came to that, more times than I can count, I found myself on my knees next to her praying for the seizures to stop. RARELY did this ever happen. I have a vivid memory of one of my most challenging nights grasping that "God Answers Prayers" when I was holding her hand and praying out loud for God to make the seizures stop. It didn't happen and in a matter of time I was sitting next to her at the hospital instead. Where was "God Answers Prayers" in this instance?

I can recall a time when Elise was probably 5 or so and we were all REALLY struggling with everything that seizures bring into your lives. There was so little working and so much frustration. In one of those really tough nights I remember going outside and having an out loud conversation with God. She did not deserve this. Was she, and ultimately we, being punished for something with this awful experience? I remember at that time challenging God to make them stop or take her off this earth and stop her struggle. Honestly, I know I said out loud, "Stop fucking around with this and DO something!" Probably not the way to talk with God huh? But, I also know that he knew full well I was thinking it, might as well get it out there. Little did I know there would be years more of struggle with her seizure disorder and unanswered prayers.

I had a conversation like that with God many times over the years. While I still don't have a clear understanding of the "why" life was like this for her, I did gain a much clearer perspective over time. What was I praying for? Complete healing? Relief from all struggles? All of the above?

I can say with certainty that she was happy all the way to the end of her life. As we were really struggling with how best to help her in the last couple months of her life, I sat next to her and asked her lots of questions. If you knew Elise, you know that she was non-verbal. Conversations were pretty unconventional. But, we had learned over the years that she would answer yes and no questions by pointing to one of those options on a "Yes/No" card that we had. As we struggled with how aggressive to be in helping her, I really wanted her to have some kind of say if possible. We talked with her about all that was being said to us by the various doctors. Near the end of that conversation, where we had been talking about quality of her life, I asked her "Are you happy?" She answered yes pretty quickly. And, I absolutely believe that.

This picture was taken on the day of that conversation. Twenty two days later, she was gone from this earth. So, can I say that my prayers were answered? Maybe I guess. But, which prayer was it?

Toxic Positivity?

I believe I first encountered this term a couple of years ago through the social media post of a friend. The article, at the time, put into perspective what I was often thinking and wondering to myself. So many people, myself included, have gone (or are going) through some heavy stuff. Rather than embracing the difficulty, the American way is to diminish the difficulty in any way possible. We say things like, "at least it isn't (insert term here)" or, "everything happens for a reason." Are those things helpful?

We are a make it go away society. We want to be able to put our heads in the sand and believe that everything above ground is sunshine and roses. Unfortunately, that just isn't the case. In my experience, those places with the most toxic positivity are truly just the most toxic in general.

Sadly, social media hasn't been too helpful with this cultural problem. Posts are full of the most positive parts of our days, putting a positive spin on a terrible situation, or just flat out lying about current conditions to make it seem that all is right in our lives or the world. Why do we do this? Why do we feel it is important that everyone believe that we have it all together and that everything is sunshine and roses?

I can't even begin to recount all the unhelpful things that have been said to me over the years. In an effort not to embarrass my friends and family, I won't attempt to account for all of them either. I started to write this post back in February of this year. It was less than 2 months after Elise passed away and I was pretty tired of the everything has to be positive mentality. But, I never finished or published a post.

Now, several months later, I don't feel any differently about the post, but I might take a slightly different slant to presenting it. Maybe you haven't gone through what I have gone through (and I hope you haven't!), but that doesn't mean there aren't some heavy things going on in your life. It doesn't just have to be when someone significant in your life leaves or passes away. It could be dropping off your baby for the first time at daycare, school or college. Those can all be proud days, but also profoundly difficult. Why do we have to act like they are not?

Over the past several years, I have truly been trying to work on just meeting people where they are. When they are happy, I am happy for them. When they are struggling, I try and listen and not solve it. When they are hurting I hurt for them as well. It really isn't THAT hard, but it has to be intentional. Let's stop with the Toxic Positivity and learn to meet people where they are. That is my hope for all of you and our society as a whole.

Navigating the Road of Grief

Elise's Grave on July 11th

Both of my parents passed away several years ago. They are both buried in the Kansas Veterans Cemetery located between Fort Riley and Manhattan. If you have never dealt with a cemetery before, working with a veterans cemetery is about as easy as it gets. You have very few choices to make. They tell you where your loved one will be located and work with your funeral home on all of the details of the burial. Shortly after the burial, I believe it was within a week for both of my parents, the headstone is placed and the area is sodded. The first time you go to visit the grave, there is very little sign that anything has taken place there except for a new marker with the name of your loved one attached. It was certainly not like that with Elise's grave and I have found myself unprepared for that many times.

The "easiest" sign of all of that is the grave marker or headstone. The funeral home was very up front with us that these have been taking a VERY long time to be placed since the pandemic began. We may be lucky to see it in place before we reach a year of her passing. Other than supply issues, there is no real reason why it should take a year for these to be placed.

So, with that, we did not return to the site of Elise's burial and all was beautiful and serene. Far from it. I have actually found the appearance of her grave to kind of mirror how I have been feeling as I navigate the road of grief. The first time I went to visit Elise's grave, it was a bare mound of dirt that was probably 18 inches high. It remained that way for a while. That mound was bare and heavy helping the ground below it to be settled. Every time I visited it was a harsh reminder of how fresh her death was for me. Like the ground, I was unsettled and the weight was sometimes a lot. Over time, the weight of it all forced me to make space and allow life to settle around me, whatever that looked like.

After a couple of months, the grounds crew scraped the top off of the mound and made it more level to the ground. This created a different look and feel. Not better......just different. As the ground cracked and settled more, the crew continued to add dirt and finally a little grass seed when spring came. Like many places, we had a really dry winter and spring. That lead to not much growth and a lot of ground cracking. Probably the same could be said for me. I never really felt too settled and I was often discovering cracks that I didn't anticipate.

With spring and the planting of grass seed, we started to see a little growth. However, the weeds are more hardy than the grass. There are a lot of bare spots, and A LOT of weeds, but there is growth. As you see in the picture above, it is kind of a sad sight today. I have expressed my frustrations with the guy in charge of the cemetery. It improved for a little bit, but not for long. Elise's grave is the only new grave in her section. Sadly it sticks out like a sore thumb.

Her grave is a direct reflection of how I feel many times nowadays. I know it is more of an inner feeling than a reality (at least I hope so!). As I have navigated the road of grief, I have been surprised by many of the things that stick out. I have been surprised by the weeds that have popped up. And, I have been surprised by the amount of time it takes to see even small progress. But, I know that progress is happening. Progress has not been beautiful or smooth. It has been full of weeds and sometimes ugly.

In the next month or so, summer will subside and fall will begin. At that time I can focus on making her plot look better. That is important to me. In the mean time, I'll continue to work on myself and see where that takes me.