It's been strange, not writing on the Caring Bridge this past couple of weeks. I wanted to share a few thoughts with you. First, Thank you. I can't express how wonderful it was to see so many of you at Dan's funeral. It was a truly special day. I only wish that I could have had more time so that I could have talked to everyone. As I have been going through the guest book, my heart has been so warmed by the names I see there. It's hard to describe how much it means to know that you came to be with our family during the most difficult time we will ever experience.
These early days without Dan have been filled with every emotion. I find that I want to talk about Dan all of the time. Our kids are each learning how to cope in their own ways and each at their own pace. We have greatly appreciated your prayers for our family these last, near 7 years. Please continue to carry us to the Lord in your prayers.
Life, for better or worse, doesn’t slow down for our grieving. Our oldest daughter, Emily, is moving with her family from California to Pennsylvania. Summer and Sam are finishing up their final exams, Summer at St. Thomas, and Sam at Anoka Ramsey. Josiah and Eli have full time jobs that they must attend to in the midst of loss. Youngest daughter Emily will never have what her siblings had, driving lessons from Dad, graduation with him smiling proudly, advice on relationships. These are things that we all take for granted.
As for me, I am trying to wade through these days withought my best friend and confidante at my side. Our car broke down one time too many, so I am now car shopping with our Sammy who, thanks to her mechanical know-how, at the age of 17, Dan dubbed her the man of the house in the days before he died.
After much prayer and thought, I’ve decided to continue selling Real Estate. So, if you or someone you know wants to buy or sell, give me a call.
Finally, if you haven’t yet sent your memories of Dan, take a few minutes to share one or two. We have really enjoyed reading these stories. We actually set up an email address, just for this purpose: DanEricksonMemories@gmail.com.
Someone recently told me that while friends will remember much of a funeral, family won’t. Somehow to get through the pain of the funeral, your brain goes into a sort of fog. Unfortunately, this can interfere with absorbing the things that people say, things that can be so encouraging. Because of that, it was recommended that we record the funeral on video, to watch later. This can be incredibly moving and healing.
We have been looking for someone who could do a really good job of recording Dan’s funeral. Unfortunately, we are coming up empty. As well as recording the funeral, we are hoping they would also record friends and family who share individual memories in a room we have available, just for that purpose.
It seems so strange to use Dan’s Caring Bridge to make this request, but it is part of his story. If you or someone you know are a good videographer with equipment to do the job well, and would be willing to do this for our family, please contact me via text at 612-850-0599.
Today we woke way too early after too little sleep to visit the funeral home. We chose Johnson's Funeral Home in Waconia, after going to my great-aunt Verna's funeral a year and a half ago. Johnson's did such a beautiful job. They treated her and the family with such honor and respect. We knew that they were the right people to take care of Dan.
Funerals have always been important to Dan. When someone he cared for died or lost a loved one, he made a point of going to the funeral because he rightly believed in giving that person and their family the support that they needed so much at that time.
Long before Dan was ever diagnosed with cancer, we would attend funerals together and talk about what we wanted to be done when we died. Of course, that was very theoretical. It's a very different thing when you are facing imminent death. Your priorities and perspective shifts, somewhat. Dan was making decisions right to the end of his life. He was talking to family about them. These decisions were about things such as music, casket bearers, eulogists, and cremation vs. burial. Even what he would wear (which was brought up, but never decided, so I made that decision). Above all, Dan wanted God to be glorified. And, he wanted his family to feel loved. His values needed to be recognized.
There is a lot that goes into a funeral. SO much more than I was ever prepared for. I've never been behind the scenes of a funeral. The closest I have been was when my family had the honor of bearing the casket of my beloved great-aunt Verna. Dan's funeral is a bit complex. There are so many details. Today, when we went to the funeral home (which, by the way, is an hour away) I was supposed to bring all of the clothing he would wear: a shirt, t-shirt, socks, slacks, everything he would wear if he was going out of the house for a nice function such as a funeral. I forgot one important item...his belt. You can't imagine how upset that made me feel. He always wore a belt. How could I forget that? I saw him put on a belt every day.
There are decisions I feel good about. Like the flowers for his casket. We were offered services by an affiliate of the funeral home, but I declined. The memory came to me of Dan buying me flowers this past Valentine's Day. He was gone for about an hour and a half--and the florist was only about a mile away. Dan came home telling me about the wonderful owner of the shop. They got to talking about God, Dan's favorite subject. He really liked this man and said that he would like to go there again to talk some more. That's classic Dan. He cares about people. So, I decided I would go there for the flowers. I'm glad I did. The owner was as kind as Dan said. He remembered Dan when I showed him Dan's picture. I left feeling very good about that.
Every decision seems so big. And how do you sum up a life like Dan's in the space of a funeral? It's really impossible. So I am so thankful for the kind messages that people have shared. There is such healing in remembering and giving thanks. The last thing that Dan heard were the prayers of myself and his children, thanking God for allowing us to have Dan in our lives. None of us could have asked for a better husband, father, or friend. His hearing was especially acute the past few days and surely he heard those words and what he means to us.
It's important to continue to share those memories. Sometimes, people worry that if they talk about the person we've lost, they will cause us to remember and be sad. The truth is, we are already sad. We are grieving the deepest of losses. Talking about him is what brings us joy. He was such a special person. I've never met anyone like him. I like to think he was specially made for me, but I'm not that arrogant. He was specially made to glorify God in all he did. He did this in his professional life, his faith walk, the interest he took in complete strangers like the florist and his family life. He was forgiving, loyal, generous, and above all, loving. We want to remember that.
So many people are grieving. It is better to do this together. Dan really wanted to have a weekend funeral so that as many people could attend, as possible. I really hope that you are able to come and be with us as we honor a life well lived. We know that there are people who have supported us with their prayers, even though we have never personally met. You have a story as well, about how Dan's life has affected yours. Our family and I would consider it a great honor to meet you on Saturday.
Here is Dan's Obituary. Memorials in lieu of flowers will be for the Angel Foundation, an organization that supports families facing cancer with young children. They have been there for our family over the past 6 1/2 years.
Thank you so much for your continued prayers. God bless you,
email@example.com 554 98th Ave. NE Blaine, MN, 55434
Last night, Dan woke up at about 3 am. I had only fallen asleep an hour earlier, so I wasn't too thrilled to have him aim his iPhone flashlight in my eyes. This went on for quite some time as he began rearranging the items on his bedside table. He was up for over an hour before falling back to sleep.
Then at 6 am my alarm went off because it was time to give him part of his medication. This is the medication that should make waking up easier, later on. Unfortunately, he wanted to start his day at that time. I reminded him that we weren't waking up yet, and helped him fall back asleep with some guided imagery.
Then at 8:30 it was time for the rest of his morning medication. After he takes these meds, he's supposed to wait a half an hour for them to kick in, before he starts the day. I know this seems like a lot of waiting around, but it was the plan that the hospice team came up with to help him have better mornings. But at 8:30, Dan jumped up, ready to start the day. Even with jumping the gun, he did pretty well.
His massage therapist came and gave him a massage. He quickly fell asleep during this time. Then the CNA came and gave him a sponge bath. He was in and out of consciousness as I played a Fernando Ortega Hymns CD. The CNA knew the music and sang along. She has a beautiful voice. Once she left, he was pretty tired and difficult to wake. When the nurses came, he didn't wake for them, either. Still, we weren't going to get too worried about things. It was possible he was just tired.
By 8 PM, I was pretty nervous. I thought it would be a good idea to let a few family members who hadn't seen Dan recently, know that he was really sleeping hard, just in case. Just as his sister arrived, he was waking up and was very disoriented. He knew that the day must have been an odd one to have a lot of family members sitting there staring at him. He did have memories of the day when he was awake, so it wasn't like the last time.
It was so difficult for me to know what to do when all of this was going on. Do I sound the alarm or do I wait to see how it all plays out? These aren't easy decisions to make. Dan did begin to feel claustrophobic, so we broke up the party.
Our daughters weren't really happy because I didn't call them to tell them what was going on. Instead, they had to come home to a driveway full of cars. This was scary for them. I just didn't have the time to call them or their brothers, because of Dan waking up and needing my help. I'm definitely going to need to formulate a clear plan of how to decide when to call whom. Hopefully, Dan can help make the plan.
Today was a hard day for several reasons. Dan woke up to a panic attack that took an hour to come down from. Two nurses came from hospice to reassess his medications and come up with a plan to help him have better mornings, days and nights. This is how it works. You have a plan that works for a couple of days and then things progress and you have to come up with a new plan. This took 2 hours. Then, a therapist/social worker came to help Dan learn how to use visualization to relax. An hour later, she left and he was sleeping soundly. That was 2 o'clock.
While the therapist was helping Dan, I took the opportunity to help our daughter, Sam with her cell phone. Her carrier switched networks and she was unable to get her phone to activate for several days. We got it fixed and she saw that all of her voicemails were gone. I saw the horror in her eyes.
"Was there a particular voicemail that you needed?" I asked. "I had one from Dad that I was saving." I told reminded her that her Dad had recently recorded some memories with her, with Randy, the hospice volunteer who has been helping him with a legacy project. "I know," she said. "But this voice mail was from before...before the oxygen."
I told her how sorry I was that the voicemail was gone. There was no way to retrieve it, that piece of history, a memory of a different time. It hurt terribly. These things that we can't spare our children from, no matter how hard we try. It broke her heart and mine.
I spoke to the social worker/therapist about this before she left. She urged me to take care of myself (She probably thought I was a basket case). She observed that I looked tired and that I was moving more slowly than the last time she saw me. "You are teaching your daughters by what you do. They are watching you. Teach them to take care of themselves so they can better care for others." It was an admonition I needed to hear.
The day ended on a calmer note than it began. And for some strange reason, I feel at peace as we prepare for bed.
I hope that you had a wonderful Easter weekend. Ours was very different from normal because, for the first time since I became a Christian 19 years ago, We didn't go to church to celebrate Easter Sunday. It's a wonderful thing to be able to celebrate the resurrection of our Lord with believers at church. This also was a reminder of how much has changed in our lives--and how much will change.
Dan and I haven't left the house since he came home from the hospital on April 2nd, 2019. He can't leave the house, even in his wheelchair, because there isn't a portable tank that can keep up with the of the amount of oxygen he needs, and he needs the supplemental oxygen 24/7. I choose to stay home with him because I don't want to miss a single minute of life with him. It's time we wouldn't be able to get back. Besides, there is so much that needs to be done within these walls.
So, I thought that for this CaringBridge post, I would paint a picture of life with end-stage cancer. Of course, everyone's experience will be unique to them, but this is a glimpse of ours.
Lately, everything except time itself seems to move slowly. Imagine dividing a day up--first between hours awake, and hours asleep. Then, take those awake hours and minus the time that your brain is a bit muddled from the disease process, and at times, the drugs you take just to be able to breathe. Then, take away the time it takes to do self-care tasks: going to the bathroom, changing your clothes, brushing your teeth, shaving (while having to maneuver around your oxygen mask), eating, etc. All of these things take much longer in a wheelchair and on oxygen.
Then, there are appointments. For example, yesterday Dan had a bath by the CNA and then a nurse visit. Each took about an hour and a half (3 hours total). What you have left are very little time and energy. Yet, we haven't even gotten to the visits from family, phone calls, and text messages. And these are really important to Dan. They are the extra encouragement that lifts him up and keeps him going when times are difficult.
What is left is usually about 15-30 minutes each day to do the things that he wants to do for his family, and make decisions about his funeral.
And as for me, I am with him in all of these situations. Helping him express himself when his words get mixed up. I keep track of his medications and give them to him on schedule. I help him with his personal care needs and make sure that he is safe. Plus, I try to be there for the kids and run the household.
One thing we did to help manage all of these activities was to put a whiteboard on the wall where he can always see it. Our daughter Sam hung it with the tools Dan gave her for her 17th birthday. On it, I write the big things that are happening during the next few days: who is coming from the hospice team, who is visiting, who is bringing a meal, and lately, what legal or financial matters do I need to attend to.
And in the midst of it all, are the emotions of everyone in the family. The only reason I enumerate all of this is that I had no idea before we were in this position, what life looks like for people on hospice.
Right now, we are in the living room. That's where Dan's hospital bed is. So each night I sleep next to him on the sofa. I still have a hard time falling asleep at a decent time. But We get up by 8:30 each morning, ready to start again.
So if you think about it, please pray for more time...more time in each day to do the things that must be done, and more time in Dan's life.
The last 24 hours have been very difficult. We are trying to balance Dan’s lack of energy with all of the things that must be done each day. Everything takes much longer to do, than it used to.
Dan needs your prayers right now. We all do. We are grateful that we have them. We apologize if any of you feels that we aren’t giving you enough time. We try to keep up with communication, but sometimes we drop the ball. Please know that we appreciate you.
It's been a few days since I have posted an update about how Dan is doing. The short answer is that he is doing remarkably well but still has daily struggles. Other than taking off his oxygen for a brief photograph, Dan must wear it 24/7. He can stand, and even take a few steps, but quickly he will find himself out of breath and weak. Unless there is a dramatic change in Dan's health, the only way he will ever leave our home, alive, is in an ambulance.
Yet, there is still fulfillment in this new way of living. Daily, he has family visitors. Often as one is leaving, another arrives. This has given Dan and those who care about him a chance to ensure that nothing goes unsaid.
There are some really unique things about hospice that help to facilitate this. Hospice takes a team approach to caring for patients near the end of their lives. Money that was once used to treat an illness is now used to make a patient's life meaningful and comfortable. Some of the people who are on Dan's hospice team include:
Dan's oncologist, the same one he has had since he was first diagnosed. She actually called him today to see how he is doing and to let him know that she was thinking about him and our family.
A hospice doctor. She recently made a house call. This doctor is the person who signs off on Dan's medications and advises the team on any questions about his care.
An RN and an LPN. These nurses make visits which could as often as daily if needed. They change bandages, adjust Dan's medications, and help me to help Dan, by teaching me the best ways to deal with various situations we may encounter in whatever stage of Dan's journey he is in. Today, Becky the RN encouraged Dan to discontinue using the albuterol nebulizer (which wasn't really working for him) and instead, read his Bible to help calm him down during times of distress. Once he is calm, he can breathe more easily. This is unique because of where Dan is at in his disease process. She is able to treat him in a more holistic, personal way.
Pharmacy and Medical Supply. One unique part of Dan's care is the rapid delivery of medical supplies and medication. We can always rest assured that he will have what he needs when he needs it. Our favorite "oxygen guy" from Midwest Medical (who has a contract with Fairview Home Health and Hospice), is Matthew. His kind, soft-spoken manner has warmed all of our hearts. He is so respectful of Dan's needs as well as our family. When you have someone coming into your home at a time when you feel vulnerable, it's important that they are considerate. Matthew always is.
A Music Therapist. Brenton is Dan's. He's a young man who plays the guitar and sings like Fernando Ortega. He also sang a traditional hymn in Swedish. He was able to play most of the songs that Dan requested, and he requested a wide variety. His music brought a lot of joy, (and tears) to us.
A Massage Therapist. Dana was here on the day that Dan wouldn't wake up. Although we couldn't move him, she was able to massage his arms, hands, legs, and feet.
A Hospice Volunteer. Randy is amazing! He has been helping Dan with a "legacy project." For Dan's legacy project, they are recording Dan telling stories, as well as him talking with each of his children, blessing them and their futures. All of this is recorded, digitally, for the kids to have in the future if they ever want to hear their dad's voice and be reassured of his love.
Supportive Friends and Family. They are part of the team, too--a big part! The meals, prayer, words of encouragement, and the loving hugs are all some of the best medicine Dan gets. You are a valuable part of this team.
Thankfully, Dan is holding steady right now, and while the days and nights are difficult, there isn't much of a change, so there is nothing to report. But we do want to keep you in the loop. SO I hope that this snapshot of Dan's hospice team has given you a glimpse of what's happening here. There is a lot more I could share, but I will save that for a future post.
We are so thankful for your prayers and support. I have loved hearing the ways that Dan has impacted your life. Some stories are from years back, and others are more recent. We appreciate them all.
It sounds like we are in for a ride. Lung Cancer spread to numerous lymph nodes. Time to rest in the love and compassion of our great God who is an ever present help in the time of trouble. This is a battle for life. We are encouraged that our God is not old and tired but is the same yesterday, today and forever. We take encouragement knowing that He heals terminal illnesses every day. We are now finding ourselves in line for a miracle. Please pray for us as we ask for the gift of life. Also, as you might imagine, this is a difficult time for our precious family. Please hold them up in your prayers.God bless you, dear friends.
On October 22, 2012 I found several hard, enlarged lymph nodes along my collarbone. It was clear that this wasn't right. We immediately began all kinds of tests and soon discovered cancer in several locations and the diagnosis of stage IV lung cancer with a bleak prognosis. Please pray daily for life, healing and for strength for the battle for our six precious children, families and many loved ones. We have a compassionate, merciful God and this has not escaped His notice. Let's appeal to Him for a miracle. Thank you, dear friends.
Dan, Heather and family
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