"The Last Days" is the special debut program for the bereavement community where Host Michael Liben interviews bereaved mother, Nancy Jensen, about what it was like to raise a child with a chronic, terminal illness. Nancy talks with Michael about what it's like to live with hospice and how her family dealt with raising and then losing their precious daughter. Michael talks with Nancy about her faith and the role it plays in her life. Nancy's answers will offer insight and inspire you on your own bereavement journey.
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Welcome to our talk with Michael, featuring your host Michael. Even our program is designed to empower the bereaved community with information and stories from those who have suffered the most terrible loss. Michael, leavin himself a bereaved father, will be meeting with people from around the world to share and to draw hope from their experiences. And now here, Michael even
welcome friends to the first episode of the first season of Heart to Heart with Michael Ah, program for the Braves community. Our purpose is to empower community. Today's show is the last days, and here with us to discuss this topic is our guest, Nancy Jensen. Nancy and her husband, Carl, have three heart healthy sons, and Jessica Jessica was born with tetralogy of fellow pulmonary atresia, severe pulmonary artery stenosis, non conflict pulmonary branches, major aorta, pulmonary collateral arteries and the George Syndrome. Jessica was blue her whole life because, despite five heart surgeries, she never had a complete repair. Jessica became oxygen dependent and needed a motorized wheelchair as walking became more difficult for her. Jessica had two strokes, which greatly affected her development, but miraculously she mostly recovered from them, surprising just about everyone Jessica never progressed beyond the level of a seven or eight year old child and remained a sweet little girl, even though she suffered from separation anxiety and bouts of depression. Sadly, Jessica passed away in October 4th, 2010. She survived 22 years. Despite all her medical issues, Nancy continues to support the CHD community, offering compassion to CHD warriors, their families and bereaved parents, including yours truly. And I hope we get to that later on. So thank you, Nancy, for coming onto heart to heart with Michael. It's a pleasure to see you.
Let's get right into it. We have a lot to discuss. Tell me a little bit about life with Jessica on a typical day.
Well, in the very beginning, she was very, very sick, and we practically lived at the hospital. And as she grew a little older, she became oxygen dependent and needed ah, motorized wheelchair in order to be able to get around because she couldn't walk and breathe at the same time. And as her health deteriorated, she, um, ended up spending a good part of her time in her hospital bed and doing things in her room. She also had a ski me of the bowels that I think we forgot to put in there, and that caused her a lot of pain. And, um, she also had lung bleeds for a while, so she had a lot of anxiety and, um, the last quite a few years of her life. Um, she stayed up really late at night due to anxiety and fear. And so I would stay up most the night with her. We would watch your TV shows, we would color, we'd be necklaces. Um, and we spent a lot of quality time. And, you know, there were nights when she was crying and really had a difficult time getting to sleep. But other nights, it was nice. Um, my husband would get up early in the morning. He was working days so he could get it the boys and get them up and get them ready for school and take them to school. And I would sleep in and I would get up late morning, and, um, help Jessica get prepared for the day. She, um, as I said, had a lot of abdominal ping. So, um, it took her a good part of the day for that pain to subside enough for her to eat very much. And her eating times were like, late at night. And so that's when I would stay up and, uh, make sure she got food and what not
You obviously had to spend a lot of time with her more than an average parent would spend with a child. How did your other sons feel about all the time that you had to spend with her and not with them?
Well, they kind of grew up with it. Um, because, you know, one cent is older and the other two came along, and she is already She always needed a lot of attention. She had strokes, so she needed therapy. And she always needed help. You know, preparing our food, help having a bath. Um, she was in pull ups and I and they kind of grew up with it. Every once in a while, they would get jealous, but I tried to spend quality time with each of my sons or as a group, or as they needed it. One son in particular had a more difficult time, and so I would take time to explain to him why she needed that attention. And he now has told me that he has thanked me for teaching him that just because someone needs more attention doesn't mean that their loved more than other Children,
that's really true. And sometimes actually, the other way around. It's, you know you can if you love someone, to trust them, where you can let them be on their own war and you know they're going to be all right. But what what is it like to, you know, spend quality time with them? So did you feel guilty for not being with her at the time that you were with them? Was that were you torn apart like that?
Yes, always. I was always torn apart when I mean, I would miss my sense drama performances or, um, I feel bad because there were other things that I had one to do with them when they were younger, like go on field trips. But I wasn't able to, so I have still have some feelings of guilt about that. But I know in my heart that I did what I needed to do in order to care for all four of my Children
as your kids now are more grown up to the D sense that they've become better adults because of this.
Yes, every single one of them have said that. And I have explained to me different ways that how they have grown, Ah, because of their sister. And like they would say, Well, without Jessica, I wouldn't have the compassion for others that I have now or our family wouldn't be a strong as it is now. So it's really nice to see them maturing and and growing and learning what? Realizing what they have learned.
Karl has a very difficult job. He's a police officer. I know he's working shifts. I know it's not an easy job to carry. How did you manage between the two of you to share that load? Raising everybody, keeping everything together. And you yourself we haven't talked about this, but you have your own medical issues.
Who says we kept everything together? Good. Good answer. Yeah. So yeah, and Carl had to go to, um court and you know his. He has a very demanding job, and sometimes it got very scary. But thankfully, through our state, we have help of home health aides, and they could come into our home and I could take a nap while they were here. And I did that a lot, especially the last 0678 10 years of Jessica's life when my health started to get worse. So that was really, really a lifesaver for me to be able to have them come in and they would visit with Jessica, they would fix her her food. They would bathe her so there would take some of the load off of me. And towards the end, when my husband was working day shift. Um, but he's also on a squad where he can call in and say, Hey, my wife needs to take our daughter to the doctors. She needs my help. So I'm gonna come in an hour late that he could do those. That was very nice, because towards the end I couldn't lift the oxygen war. It was very hard for me to tie the wheelchair, that £600 wheelchair onto the lift, which is on the back of the vehicle, and you know all that stuff. And so he was there to help do all that stuff and also to ask questions with the doctors, where in the beginning it was all me because he was in school and working several jobs. So it was so nice to have him there to help me with that.
Did you find that you were Jessica's mom and he was the boy's father and that there was a division that way?
That's kind of how we shared things with the boys, like scouting. My husband was a Boy Scout. There is a Boy Scout, and he would take them scouting and to the activities to, um, to camp. And for a while there he was taking the boys to church because I would be up all night with Jessica and we did not have a home health aide on Sunday, so I wasn't able to go. Jessica was too sick to go. So you take the boys to church and I mean, it was very helpful for us to be able to do it that way.
I think it's always very nice when it works, and this is the sort of thing that you know can either bind you so much more together or can, um, really just atomized the family, and you're very lucky. That's not what happened. Thank you so much, Nancy, for sharing your story with our listeners and for sharing Jessica with us. Now it's time for commercial break. But don't go far, because when we get back, we're going to talk about how your family prepared to say goodbye to Jessica and Jessica's own awareness of her oncoming death.
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You are listening to heart to heart with Michael. If you have a question or comment that you would like addressed on our program, please send an email to Michael even at Michael at heart to heart with michael dot com. Now back to her toe hurt with Michael.
Welcome back to a program. Heart to Heart. With Michael today we're talking with bereaved mother Nancy Jensen. Nancy. At a certain point, it became clear to you and your husband that Jessica was not doing well. So how did you come to accept that she would need hospice care? And what was the process of coming around to saying, We need this. We're gonna have to do this. This is this is the end.
Well, Michael, we actually had to do that twice. In 2004 Jessica was having lung blades, and they finally did a caftan endoscopy and found that she had collaterals going. The collateral she had going from her aorta to the lungs were bursting and bleeding into the lungs, and they coiled off two major ones. But that was her primary way of getting blood to her lungs due to her messed up pulmonary arteries. We knew it was the end, and it was just like a kick in the gut. And the lung leads were horrible because she would be coughing and choking on the blood crying. Now I'm not ready to die. My younger sons would go and hide in their bedroom. We're on the family room where they couldn't hear her and cry, so I would have to go and take care of them after I got her calm down when the longer blade would stop so that we got hospice in and it just was all like a for a wind. And fortunately, the hospice nurse came with me to a pulmonary appointment. And she had recommended during morphine therapy that they had found that giving morphine either orally or through a breathing treatment would help the pulmonary arteries relax. Well, with Jessica, it actually stopped. The lung bleeds, and they kicked us out of hops this after year because she hadn't had a lung bleed in six months. So we were very, very fortunate when that stopped. But we knew that she had still her CHD issues. And then we finally found an answer to the abdominal pain, which was caused by excuse bowels, and that was also terminal. So she had to terminal illnesses, and her pain kept getting worse and worse. We took her to doctor after doctor. Nobody want to increase from morphine. Nobody had answers on how to control or paying. I even called the previous hospice team in, and they refused to take her. And that was the spring of 2010 and she that I kept trying to tell the doctors she's retaining more fluid, but they didn't see it because it wasn't inter feet and ankles, but I told him she spends most of her day in bed with her feet up. But anyway, finally, after her 22nd birthday in June, her feet swelled up to what we called balloon feet. She was hospitalized and a palliative care doctor came in, and she's the 1st 1 that finally said she needs more pain medication. She needs more pain control. She was the one that recommended a hospice, which was also palliative care.
Well, at that point, was Jessica aware of her declining health? Did she understand what hospice Matt?
She did not understand what hospice meant when, when they came into the home, it was a different hospice. The doctor came to our house, and finally I knew I didn't have to drag her out really stupid doctor's appointments when they just want to see her, you know, um, the nurse was so compassionate. And towards the very end, like a few weeks before she died, she realized what was happening. So
we have You know that
because she said, Mommy, I don't want to die. But I know I'm gonna have to go.
things like that, she would say. And you know, we're Christians and we had a picture of Jesus up on her wall, along with other pictures that were important to her and family members, that Carl had printed up Earth ancestors, people that she was going to be meeting and so she would feel more safe and she would say the pointing at Jesus. I'm kind of mad at him. I said That's OK and we would talk and she didn't want talk about it. And we would say, Jessica, when you see of the light, you d to go to the light and your cousin Marcus will be there because her cousin had passed away two years prior to that, and I believe he helped her. Probably he helped her.
That's amazing. Let's turn again a little bit in a different direction. How did you explain all this to the to the boys that this is what was happening, what hospice meant And did they understand that the end was coming close?
We would talk about it privately, away from Jessica. And, um, I have always had a really, really good relationship with each one of my boys. They come to me when they have something that they need to talk about on. They've told me, thank you for listening. So I've kept that line of communication open and so that they could talk to me. And then the second time, it was the hospice nurse, and it was more obvious that it's gonna be times soon because Jessica went 64 days without being able to eat. So we knew it was definitely coming. And she was too weak to get out of bed or even at the end toe hold her head up. So it was very obvious, and we would go out to the family room and discuss it and cry and allow the boys too talk about their feelings if they wanted to. Um And at the very end, they didn't spend a whole lot of time in her room with her. She was sleeping most of the time, and It was just so hard for them to see her deteriorate. So they did not spend a lot of time in there, and I didn't make them.
Did they try not to cry in front of her? Was there some rule about that?
We did not have a rule about that. Um, they could show their emotion if they wanted to. Um, I think that for her benefit, they did not show emotion when they were talking to her.
How old were they when this was happening?
Oh, gosh. And I have to do math. Austin was just starting high school. He was a freshman. Brandon was two years older, and then my oldest son was married and out of the house. And him
and his wife teenagers in an adult.
Yes, there was at one point when we, the nurse, took us out there and she said, I figure it's time. If there's anything you want to tell your sister, we should probably do it today,
and I'm gonna have to hold you right here. I don't want to thank you again for being on the program and opening up to us about how your family was coping with losing Jessica in those final moments on, I know that many families here will really be able to relate to the story and gain strength from it because many of us have been situations very similar to that in our final segment, I'd like to talk to you about how you keep Jessica and her memory alive, because I know that's very, very important to you. So will you back right after this.
When I saw somebody of the C H Street groups growing, I found family just ready to join May Anyone who is a member of the adult congenital heart defect community can be a guest on our show way. Have a great year plan that we look forward to sharing other interesting topics. Heart to heart With Poland David Serving a CHD community Wednesday's at
You are listening to heart to heart with Michael. If you or someone you know would like to be a guest on Michael's program, please email him at Michael at heart to heart with michael dot com. Now back to our program.
Welcome back to a program Heart to Heart With Michael. Today we're talking with bereaved mother Nancy Jensen Nancy. This is an interesting question to me in particular, because this is something that we've all had to deal with. What about your ongoing relationship with Jessica? Because I know she's very much still with you all the time.
I think that, um, with my faith and having grown up with this faith off, um, knowing that we exist beyond, um, death and that I have felt, I don't know, kind of a connection to my grandmother who passed away, and I was very close to her on occasion. I feel her with me. I feel Jessica with me, Like, almost all the time now for Jessica. I took care of her 24 hours a day for over 22 years, and she needed me. If I left the house, she would call me every five minutes. Um, Mommy, I need you. You know, And as we mentioned before, I spent a lot, a lot of time with her, not just taking care of her medical needs, but her emotional needs. And so that was one thing that was really hard for me in the beginning is to not be able to physically take care of her. So I found ways other ways to fill that native taking care of her in my artwork, everything I do. If you know my relation with Jessica, you'll see Jessica in it. Her favorite colors. Maybe, Um, you know, different things, and that's a way that I continue that relationship. I, um we talk about her a lot every day. Um, either her dad or I will joke about her little Jessica ISMs. She loved to joke about every little thing. Um, and we do that and we remind each other of those things or we will quote her. So she is very much a part of our lives. And I think that in a way, when I am can say that I feel her with me. Um, I kind of think that's partially the grieving process. Maybe when I'm missing her more, I could feel her with me more, if that makes sense. Absolutely. You know, um, I think that a lot of bereaved families I don't understand or don't recognize that as being their child being with them. But I also have thought, you know, Jessica needed me just as much as I needed her. So she might be with B because she still needs to be with me. If that makes sense,
it makes perfect sense. And it leads me directly to my next question. You're a member of the Church of Jesus Christ of Latter day Saints, which most of us know is the Mormon church. Um and I'm sure that's a very important part of your ongoing relationship. And I'd like to hear more about that because it's very interesting. A lot of people don't know much about it.
Okay, well, in a nutshell, our belief is that we existed as spirits, literal Children of a loving father who created this world for us to come, an experience as we could grow in progress, lives with mortal bodies. This is the first time that we could get married and have Children and experience new things, and that this was never supposed to be a forever home are our mortal bodies? They became, too. Learn how to have faith, how to believe in our father without being with him. We learned how to make decisions on her own and, um, have trials. And through our trials, we learn and we crow. And so death is a part of the plan so that we can go after that to the spirit world where we can continue to learn and grow and be together and teach each other things. Then, in the, um, there will be Christ coming again, and we will all be resurrected into eternal bodies that will never die that will not be sick and will continue to learn and grow in that sphere That will continue, you know, as families and then continue those relationships and friendships that we've made.
That's I find that totally fascinating. In a sense, it actually eases the pain of the end of life as you look towards the continuing portion to come. And I think that's really I can see where that would be very, very comforting. The rest of your family, the boys, their things in their daily lives that help them remember. And as it were to continue to live with Jessica,
well, in their own way, I guess they joke around also, when we talk about Jessica ISMs, um, they participate in our silly socks when we, um, have silly socks on Jessica's Angel verse ary and on her birthday. And, um, we were going to try to make it a custom to go to the grave. Um, and we've done that, but not every year, because of you know, my husband's schedule or, you know, just, um, different things. So sometimes most of the time we have, though, gone to the grave site and placed flowers or cleaned it up a little bit and and watched for these little birds that are called for 1,000,000,000 flycatchers. That air, they're they're beautiful. And butterflies, of course,
of course. Butterflies. Let's hear more about the butterflies. I know that's a thing
that is a huge thing. So when Jessica just out of the blue, probably about a week before she best wait, she kind of woke up and she said, Mommy, I'm gonna send you butterflies from heaven And I just was taken aback and I said, Thank you, Jessica. I look for every single one of them, and just a few months after she passed away, one of my sons told me, Mom, I know that butterfly thing is between you and Jessica, but I have never seen more butterflies in my life, and I said, Of course, it's not just between me and Jessica, it's for all of us, and she sends us many butterflies.
What's that like? Are you just like, walking around and suddenly this butterflies or how does that happen?
Oh, my gosh. Yes, that happens. I've had a fly right around me around in circles around me. When I'm driving, they fly right in front of my windshield right in front of my car. Uh, I mean, it is super obvious. At one time, my husband said, Hey, did you see that? Better fly. I say, No, I did it and another one will come. Okay, Jessica, I got the message. So we'll say Hi, Jessica. Oh, you're coming to church with us, or Oh, you're coming wherever with us, you know?
So you really feel her presence. You really feel the presence all the time with you.
Almost every once in a while, I feel like, Well, she's off helping somebody else, and that's okay.
Notably I know that she was helping Lee Ella. We've discussed this that she was there to greet Li. L on absolutely believe that's true. Oh,
my God. I
absolutely believe that's true. And I think that Jessica has been a part of everybody that she's touched and remains a part of everybody, that she's touched the butterflies or something between you and her personally. But from what? Everything I know and everything I've heard, she is as kind as her mother and clearly her mother's child. And you guys have created a wonderful, wonderful family. And it's been, Ah, pleasure knowing you. And we have just about a minute, and I I did want to get to this When we were a to the end with Li l on, we were, you know, maybe 10,000 miles away from you. We were on the phone with you all the time, gaining from your experience and your calmness and your ability to make everything seemed like it was all in place the way it should be. And our final days with Yellen had no warning. We have three days. Our final days were made so much better and so much kinder because we had you and your experience with us.
Oh, thank you.
It's a chance for me to thank you in front of everybody so fraught whole. You're welcome. It's what I guess what that concludes. This episode of heart to heart with Michael so please join me or the heart to heart with Michael Team in Google hangouts every week following our program, I'll talk with you soon, and until then remember, it's okay to
breathe. Thank you again for joining us. We hope you have gained strength from listening to our program. Heart to heart with Michael could be heard every Thursday at noon Eastern time. We'll talk again next time when we'll share more stories. If you would like to continue today's discussion, please join us right after the program at our Google hang out link will be provided on our Facebook page.