What I've Learned in the Last Five Months

One hundred thirty eight days ago my dad’s heart doctors told him and my mom that there was nothing more they could do for him and encouraged my parents to contact hospice. Thirteen days ago my dad died from congestive heart failure. It’s been a difficult five months. But I’ve learned some things during these months; things that I want to remember.

Death can be a gradual process. I’m thankful that my dad felt well enough to move around the house and enjoy visits from family and friends for much of the time. When we first contacted Hospice, dad was fairly strong and felt pretty good. As time went on, however, he gradually had more difficulty keeping his balance and began using a cane, and then a walker to help him get around. It was hard to see my father, once so strong, now walking slowly and unsteady.

Just when you think you have things figured out, they change. As my dad needed more help, we’d adjust his care. The cane and walker helped him get around. Then he got a different recliner chair with a remote control that helped him get up. During the last month he struggled with monitoring his medications and became more confused and disoriented. Just as we’d adjust to each new “stage,” something else would change. Thankfully the Hospice staff (Spectrum Hospice) guided us through each of these changes.

Things can change quickly. I talked with my dad on the phone the Wednesday before he died and he sounded fine. I asked if he wanted me to pick up a Mother’s Day card for him to give my mom the following Sunday. He said yes and also asked me to get a bouquet of flowers to give her. Two days later his health declined dramatically; by Saturday we had a hospital bed brought in and were told to begin administering special medication every two hours to keep him comfortable as he was now in the end stage.

You don’t know when it’s the last time you’ll … As he drifted in and out of consciousness that last weekend, I remember brief bits of conversation. He made a joke about the oxygen he was breathing, he was confused and kept asking when my friends were coming over, he wanted to sit up but wasn’t strong enough so I had him lean against me for a while, I told him I loved him and he said he loved me too. But I didn’t realize when I left for school Monday morning that I would never hear him talk to me again.

Death is not always pretty, holy, or sacred. From Monday afternoon to late Tuesday morning, the sounds of my dad gasping for breath were painful to watch and listen to. Although he was not in pain because of the morphine, it was very hard for us. It was not pretty or holy; it was horrible. The death rattle and its effects were evident. 

The heart continues to do its best for as long as it can. My dad’s breathing became shallow, quiet breaths for the last 10-12 hours of his life. As I sat next to him during his last hour, I counted the seconds between breaths. It was a constant 3 seconds, then a breath, 3 seconds, then another breath. I was amazed at the way this damaged, tired heart, which had struggled for so long was still continuing to work. Then there was a 9 second space, followed by a breath, 3 seconds, and then more irregular breathing. As my mom, my sister, and I stood around my dad’s bed, he slowly stopped breathing, just like a clock slowly winding down.

I wonder about the mystery of the transition from this life to heaven. As my dad stopped breathing I wondered what spiritual happenings were occurring that we couldn’t see. Was an angel in the room with us? Did my dad see us as he went to heaven? I have so many questions without answers.

I’m thankful for God’s gift of family. I am so glad that my mom, my sister, and I were with my dad when he died and could spend the next several days together, making arrangements. I’m thankful for the weekend our family had together: my brother-in-law, nephews, niece, and my brother (unfortunately his wife had to stay in Russia and couldn’t make the trip).

God provides. After a long day making funeral arrangements, we were just tired and had no idea what to do for supper. I said aloud, “I wish someone would just come to the door with supper for us.” Less than 30 seconds later the doorbell rang – a neighbor was there with supper for us! (Wow, God!) The next day I mentioned how nice it would be to have some brownies; within ten minutes another neighbor knocked at the door with supper and dessert! My sister and I needed appropriate funeral clothes and God led us to the right stores very quickly (and they were on sale too).

The Christian community is so important. The prayers, cards, notes, Facebook comments, and people who attended the visitation and memorial service have encouraged and uplifted my family. It is a reminder to me to also show this support to others.

You can praise God in the midst of grief. We did just that at my dad’s memorial service! And it felt good and right.

Knowing death is coming may make it easier, but it’s still not easy. We realized one hundred thirty eight days ago that my dad would most likely die within the next six months. I had the time to tell him I love him. I’m glad I was able to spend time with him and help care for him. I have no regrets. I’m happy that my dad is now free of pain and the heavy batteries that helped his heart. I’m glad he’s enjoying his new life in heaven with Jesus our Savior. But I’m sad at the same time. Grief is still grief. I miss him. I love you dad. And I’ll see you again someday.

Community

I think this has been the longest stretch between blog posts, but life has been just a bit hectic around here during the past three months. Dealing with my dad’s heart surgery and recovery, LVAD education classes, writing CarePage updates, and starting a new school year has left no time for writing blog posts.

As the Thanksgiving holiday approaches, there are many things I’m thankful for. A wonderful job, my new dog – Toby, the gift of salvation, and my loving family are some things that come to mind. This year I’m certainly thankful for medical technology and the staff at the Meijer Heart Center. I’m also very thankful my dad is here to celebrate this holiday and is gaining strength each day. But there’s something else that I’m especially thankful for this November – the gift of community.

Throughout the last two months, my parents and I have been enveloped in love and care by friends, colleagues, and relatives - the Community of Christ. I have always felt part of a community, but I now have a much stronger sense of what Christian community truly means. So many people have been the hands and feet of Jesus to us.

The friend who provided a hot meal, cooking in the crockpot and ready to eat, when we arrived home after a long day at the hospital on the day my dad was discharged.

My fellow staff members, who brought me and my parents numerous home-cooked meals, frozen and ready to microwave, during the busy weeks of preparing for school conferences and driving to Grand Rapids to visit my dad in the hospital.

The friend who took care of my dog for several days surrounding my dad’s surgery, so I could stay in Grand Rapids with my mom. This same friend also stopped by my house several different days to let Toby out after work when I needed to go right to the hospital after school.

The lady who came and spent a morning helping my mom and sister clean the house after the flooring was installed, so it would be ready for my dad.

The many people who have written messages on the CarePage updates and sent cards, letting us know they have been praying for us.

The parents of my second graders, who just last week filled my freezer with meals, so I don’t have to worry about cooking as I try to balance helping my parents with preparing for school.

Friends who have continued to inquire how my dad, my mom, and I am doing.

I have been moved to tears by these thoughtful acts of kindness from people who have reminded me in tangible ways what it truly means to Love one another and to live in Christian community.

Thank-you, Lord, for this wonderful gift.

The Heart Of It

A week ago I knew very little about picc lines, infusions, various kinds of catheters, or “hospital time.” I had never heard of Milrinone or an LVAD. It’s amazing how much one week can change your life. I’ve spent at least part of (almost) every day this week at the Meijer Heart Center in Grand Rapids, MI, where my father was admitted after a heart catheterization on Monday showed his heart has severely weakened. I’ve spent every spare minute researching the LVAD after the team of heart doctors mentioned this as a possible treatment, while my dad underwent a multitude of tests to see if he qualified for this procedure. What I learned amazed me on an analytical or theoretical level – technology can do amazing things! It also overwhelmed me and my parents on a practical level – living with this device requires a tremendous amount of care and lifestyle change; could my dad and our family really do this?

An LVAD (Left Ventricular Assist Device) is a mechanical pump that is implanted just below the diaphragm during open-heart surgery. One end is attached to the heart’s left ventrical. It continuously pumps blood out of the heart, through the titanium pump, to the other end (connected to the aorta), where it carries the oxygen-rich blood to the rest of the body. A driveline (tube going through the skin) connects the pump to a system controller, a small computer worn outside the body. The controller is the “brain” of the LVAD as it displays messages and warnings if there are any problems. The LVAD is powered by two batteries during the day and a wall unit at night. The batteries last around 10-12 hours, so you always need to be charging extra sets of batteries. Electricity is vital for the LVAD to work! The LVAD has primarily been used on patients waiting for a heart transplant, but during the last several years it has started to also be used as a “Destination Therapy” (which would be the case for my father, as he didn’t qualify for a heart transplant).

photo from Thoratec, HeartMate ll

this is the model they showed us in the hospital,

this type of pump would be implanted

After the surgery, the patient recovers in the hospital for 2-4 weeks. Once they return home, someone needs to be with them at all times for at least 90 days, in order to change the dressing and in case there are any problems with the device. There are also weekly (later monthly) visits to the LVAD clinic to make sure the device is working. The family and caregivers are also trained to know how to live with it and troubleshoot any possible difficulties. When leaving the house, a bag carrying extra batteries and other supplies must always be brought along.

My research showed many good results – most people have a much better quality of life and heartily recommend it. Complications can occur, however, due to infection or blood clots or issues with the device not working properly. The mechanical heart pump can extend someone’s life for 3-7 years.

We had lots of questions for the doctors; they were very helpful and patient as we struggled to decide whether this would be beneficial for my dad and our family. It is a huge step as life would change drastically. But we realized that life would change even if he didn’t have this procedure, as he would just continue getting weaker for the next 6-16 months.

After a lot of discussion, thinking, and prayer, we decided to proceed with the LVAD. My dad was released from the hospital today and has a small portable pump, which continuously infuses Milrinone, a heart medication, into his heart to strengthen it. He’ll remain on this for the next 2-3 weeks as we make preparations for the surgery, build a care support team (if anyone in the Grand Rapids area is willing to stay/visit with him for 1-3 hours per week from Oct-Dec, please let me know), and become more educated on life with the LVAD.

This week has been a whirlwind with lots to process. I feel like our lives are on hold. And yet, we’ve prayed for God’s clear direction and wisdom in our decision-making, and we feel God’s presence. We are so thankful for our Christian community – in Michigan and beyond – which has been upholding us in prayer. As I’ve listened to the radio on my drives to and from Grand Rapids this week, I was struck by how many Christian contemporary songs have the word heart in them. And how the heart of God is filled with love for us. In some ways, we are apprehensive about this impending surgery and life change. But we also know that God is with us and will continue to give us what we need each step along the way. And that is really the heart of it.