Here's the truth: no matter how "prepared" you are to say goodbye to your loved one, it will always be one of the most difficult heartaches you'll ever have to heal from. Whether you've been journeying for years with someone throughout their fight with a particular disease or whether you lose someone unexpectedly in a horrific accident, your heart breaks into a million pieces nonetheless. As the saying goes, "grief is the price we pay for having loved deeply and fiercely."
In our care homes, we experience loss in many different ways. Sometimes, we bear witness to someone losing more and more of their mental or physical functioning; sometimes, we lose a resident unexpectedly who has peacefully passed away in their sleep; sometimes, a resident who has been hospitalized does not return back to our home; And sometimes, we lose a resident who has been in hospice care -- which is what I want to unpack in this blog post today.
Oftentimes, when people hear the word "hospice" it feels like a death sentence. There's this misconception that it means a person only has a few days left to live. The word "hospice" is derived from the Latin word "hospitum" meaning hospitality or place of rest and protection for the ill and weary. For a person with an advanced illness with a prognosis of less than 6 months, hospice care might be a viable option. While the approach of modern medicine is to do everything it takes to cure the disease though various medical procedures or medications, the philosophy of hospice care is to provide comfort for the person and their loved ones as their condition progresses. Its goal is to improve the person's quality of life as they let go and allow the natural life-cycle to play out. That could mean a few days, or a few months or even a few years. We have had residents on hospice for only a couple of days and we have had residents receiving hospice care for over two years.
Hospice care gives the person (whether in their own home or in an assisted living facility) access to 24-hour medical care from a hospice doctor and nurse, a home health aide to assist with bathing or grooming, medication to help alleviate any pain or symptoms, medical equipment such as a hospital bed, wheelchair, etc., music, massage and pet therapy and even a spiritual counselor or chaplain. These benefits are fully covered by medicare and/or private insurance. But most importantly, I feel the number one benefit hospice care offers to a person and their loved ones is the gift of intentional time.
As I indicated in the beginning, no one is ever ready to say goodbye to a person they love and care about. But what certainly helps the process of saying goodbye feel less brutal is knowing you have the ability to express your love for someone in the ways you've always wanted. Perhaps you feel like you never said "I love you" enough or more fully -- with hospice, you've been given a chance to communicate that love. Or perhaps you've been meaning to share a particular meal, go on that trip you've always wanted to take together, or even to just be able to dedicate more quality time to this person. Hospice gives you the chance to be so incredibly intentional with how you spend that time together. Holding their hand and feeling them squeeze it back feels more special; hugs are more encompassing; hearing them laugh becomes more magical.
I listened to a podcast recently where they discussed two different forms of time: chronos time and kairos time. Chronos time: chronological or sequential time. It's the everyday passing of minutes. It's the time you spend plugging away at work. The time you spend meticulously cleaning your house. The time you are in agonizing traffic on the 101 freeway. The time you spend waiting anxiously in the emergency room to find out if your loved one is going to be ok. It's the time you dedicate to being the caregiver for your aging loved one, helping them in the shower, changing their diapers, or reminding them for the nth time to use their walker so they don't fall. It's the hours you lose at night when you can't sleep due to the fear and worrying you do over your loved one's deteriorating health.
And then, there's kairos time: an appointed time, an opportune moment. It's time outside of time. It's the moments during the day that take your breath away, that fill up your cup so fully that you are able to swim in that sense of joy and delight many moments thereafter. It's dedicated moments to truly be in someone's presence, without the thoughts about the endless to-do lists. It's time you've set aside to genuinely connect on multiple levels with your loved one. Ask someone who has lost someone unexpectedly, and they will tell you, the one thing they wish they had was a chance to tell them how much they loved them, to be able to right a wrong, to forgive or be forgiven. In this sense, there is no doubt that while the hospice chapter in someone's life may indicate the proximity of the end of that person's story, it is also such a profound and often underrated blessing to be able to have a chance to spend kairos time with their loved one.
On February 2, 2015, I received a call from my father's doctor saying it was time for him to begin his hospice journey. He had been fighting stage 4 lung cancer for two years and was hospitalized three times already in the past month and a half due to his lungs filling up with fluid, pneumonia, etc. After they performed a CT scan, they found that his cancer had spread to his bones, liver, spleen and possibly his brain. He was in agonizing pain and it was time to focus on alleviating that pain through hospice care. Like many people, when I heard the word "hospice", I was devastated. I felt like we (the doctors, his family and my father) were giving up, even though he fought such a good fight and was able to attain some wins throughout his battle. But I also knew I didn't want him to suffer any more than he had already suffered. One of the hardest things to go through is having to watch someone you care about in so much pain.
He was admitted into Creekside Hospice Inpatient Care, which was a 13-bed facility with a full hospice staff in Las Vegas, Nevada. The great thing about that facility was each room had a couch that converted into a sleeper, its own private bathroom, a refrigerator and microwave. It was perfect for a family like ours who intended to "camp out" with him and be there as his body slowly shut down. We were told he didn't have much time left so we were prepared to just stay there with him, knowing one of his greatest fears was to die alone.
I was seven months pregnant at the time and was there with my four-year-old daughter, my husband, my twin brother and his wife and my younger brother. While we were all heart-broken and devastated, we were also determined to spend however many chronos days it took in a complete kairos bubble. Since my dad was in so much pain, he was on very heavy pain medication so he wasn't able to engage very much. But since we knew his sense of hearing would be the last thing to go, we made sure we told him how much we loved and cared about him, how proud we were to have had him as a father and how inspired we were to see how hard he chose to fight his war with cancer for the sake of his kids and grandkids. His favorite songs were played on repeat; we laughed; we cried; we prayed without ceasing. On February 5th, at around 2:30am, he woke up with me holding his hand (I was on night duty that particular evening) and asked me in Tagalog if he was dying. I told him yes, he was indeed dying, and that it was ok if he decided to go. That we would be alright, albeit sad. I asked him if he was ready to die and he nodded and told me he loved me. After being so out of it for many days, I feel so blessed to have been given a chance to speak to him in that way while he was lucid. Even if the moment was fleeting, it is a moment that has given me so much peace. A moment that will stay with me forever. Kairos time. He had a few more of those rare but incredibly special lucid moments with my brothers, his relatives in the Philippines over FaceTime and with my daughter, his favorite person in the whole world. Kairos time. He passed away peacefully on February 7, 2015, surrounded by his family and while his passing is something we are all still healing from (six years later), the time we all got to spend together while he was receiving hospice care will always be a special and sacred time for me and my family. Kairos time.
In our care homes, I've seen many families find peace and so much joy during their hospice journey. I've witnessed a daughter read a letter she wrote for her father pouring her heart out in each word and getting the closure she needed to move forward; I've witnessed a wife ease the worries of her dying husband by assuring him she would be fine and that she would take care of herself when he was no longer there. I have witnessed arch enemies make amends. I have been a part of beautiful family rosaries and last rites being administered. I have witnessed the incredible empathy and compassion from nurses and home health aides in providing relief from pain and suffering. I have witnessed the power of music being played or the way the mood of the whole room gets lifted when a cute little puppy is brought in to cheer everyone up.
So if you or a loved one are in a position where you're ready to focus more on quality of life rather than do all the things that you hope would extend that life, marinate a bit on the idea of hospice care. We have worked with some amazing hospice care agencies and can help provide some resources for you as you discern next steps. Aside from all the helpful and practical ways hospice can help in chronos time, explore the possibility of the peace and joy that can come from the kairos time you can be given a chance to pursue.
I miss my dad every single day and because I loved him so deeply, I know the ache I feel when I think of him won't ever really go away. Nor would I want it to. And while I wish he was here to be able to see his granddaughters and to be a part of our lives in a physical sense, I am so grateful we had that kairos time together at Creekside Hospice. What I know for sure is that that moment of time was, indeed, a blessing.
Hospice care or not, may we strive to reach for and create as many kairos moments throughout our days so that the chronicity of our lives can be filled with meaning and purpose.