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Getting to the Hospital & Other Concerns
Moving outside the specter of the hospital, certainly there are concerns as a single parent about money and a job. If I’m taking care of my daughter, which I obviously have to do, how do I keep a household fed and clothed and so forth? I’ve had a lot of help from friends and from my mother and from the temple. It’s interesting, because this is an issue that I’m not sure a lot of people have gone into but has to be something that’s in the back of a lot of people’s minds. How do you get through this? Because it’s an amazing expense, and it’s not one that really goes away.
The hardest part for me is that you have to not be afraid to say to somebody, “I need some help.” And that’s tough to do; regardless of the situation, it’s hard to say, be it at church or to a friend or whatever, “I’m having a really hard time here— I need some help.” And it’s important to know that there are going to be people who will help you; you’ll have friends who will help. And you kind of have to let go of the people who don’t and just let them be. Sometimes I think it’s hard not to dwell on the people that aren’t there for you when you think they ought to be, but I think you just kind of have to.
I would say that one thing you will need to do is to swallow your pride and accept the fact that you need help and it’s okay to let people help you. We have always been in a position to be the ones to help other people, so it was very difficult for us to accept money, for us to accept meals, and for us to allow people to do things for us at no cost. It was hard to figure out exactly how people could help too. A lot of people came up to us and said, “Just call me if there is anything I can do.” That sounded so big that at first we just sat there and thought, “You know what? There’s nothing that you can do for me, because I am just so overwhelmed right now.” But I would just encourage people to stop for a minute and think about the small, practical things that add up. And say to yourself, maybe this person could walk my dog three times a week, and maybe that person would be willing to pick up my child once a week, and I really would love for these people to bring a meal over— that kind of thing. Think about the specifics and then call up all of those people who offered and ask, “Are you able to do this? Are you able to do that?” Accept help, because it’s very important.
You may find that a lot of people call all the time, wanting to know how things are going. There are two ways I dealt with that. One was to put a regular short update on my answering machine: if they were calling about Steven, this is what’s going on. I thanked them for their call and let them know that we would try to return calls but that we might not be able to. I also sent out updates on email because you can type it once and send it out to everybody. Both of those things really help, because if you don’t update people then you find that when you go places like work, school, or church, you might have five to twenty people asking you the same question and have to go through the same answer over and over again. It really helps to not have to do that. I also picked a few people who were willing to be my contact people. There was one lady at church who was willing to be in charge of support things for me. She would call and arrange for people to come to the hospital and visit or for people to take care of my children or things like that. There was also one family member who kept all of our family updated on what was going on, and who would arrange for anything that another family member wanted to do, so that I wasn’t the one who was always getting the calls. I shut off the phone when I’m home with the kids on the weekends. We have a routine; my husband comes in to the hospital on the weekends and I go home with the other children. I do not answer the phone when I’m home with the kids, because if I did I would be on the phone the whole weekend instead of focusing on them. My advice would be to know how to thank people very much for their concern but also let them know that you have to focus on your family.
It’s so helpful to write and make calls, and tell people how you’re doing and what is going on. People feel left out and want to keep in touch with what is going on.
Don’t be afraid to voice your fears to doctors; don’t be afraid to voice your concerns and your questions and ask for explanations. But treat them with as much respect as you want to be treated with. Don’t treat them like they don’t care about your child, because it’s anything but. And be insistent; if your gut is telling you that something is not right and the doctors are telling you the opposite, insist. Be insistent, be polite, and be friendly but be insistent: Which usually goes hand-in-hand with staying calm and not getting hysterical, because the more you get hysterical the more they look at you like you’re crazy.
We got an apartment next door to the hospital after the transplant, because we wanted to be closer. That has been a life saver; I strongly suggest it to anybody if they live a ways away from Boston.
We took a transplant helicopter down when we got the transplant call— have that lined up.
It gets depressing. You’re so tired, even though you haven’t done anything all day. All you want to do is sleep. It can be really hard just knowing that you have all of this stuff to do at home. You sit there doing nothing. It’s difficult, but we’ve met some wonderful nurses here and at our hospital back home. You start calling the nurses your friends. We’ve gotten attached; at least there is some social interaction.
The transplant process went very smoothly for us as a family. One of the things I did in preparation was I really thought about what I would need, as my son’s donor, to feel the most at ease during the surgery. I also thought about what kind of help I was going to need post-surgery. I realized that what I wanted most was to make sure that things went smoothly for my younger son while his mother and brother were in the hospital. So I spent a lot of time preparing him and really thinking about what kind of help I needed from family and friends and from the hospital to make the experience as good as it could be for him. My advice to other donors would be to really think about what it is that you are most concerned about. As a preparation for the surgeries, I examined what was important to me and then put together the help I needed from family and friends. I was very clear about what I needed for my younger son, and I asked them very directly, “Can you do this for me? This is what I need to happen or to be in place.” And that’s exactly what they did for me. As a result, we felt very together during the whole process, I wasn’t worried about my younger son anymore, and my family was very happy to do what I asked. I think it was really a positive experience for all of us. Everything went smoothly, and my younger son looks back on the process as one that was very well organized and one in which everything seemed to be in place and go the way we expected it to. As a result, it was not really a big deal for him.
Take breaks when you can! You have to get out. You have to take care of yourself in order to take care of your child. At first I wouldn’t leave; I stayed in the hospital for two weeks straight, sleeping on one of these pull-out beds. Then, the first night that I got home, I had an anxiety attack, which I’d never had before. Rather than having three or four people in the hospital room, take shifts. You develop relationships with nurses, and you figure out whom you feel comfortable leaving you child with, and you just have to know that they’re going to call you if there’s a problem while you’re out.
Before the transplant, we sat down and had a big meeting with some of our extended family. Everyone had a role to play. We printed out a whole schedule for who was going to be watching our older children. We knew who was going to be where all the time, so that took a burden off of me to hurry up and make a plan for the kids. I think that it was important for the children to always know where they were going to be. I could say, “While mommy’s in the hospital you’ll be staying with your grandparents, and daddy’s going to be with Kaila.” We could tell them what to expect. I also made arrangements so that when I came home from the hospital, knowing that my husband was still going to be in Boston with my daughter, I had arranged to stay with my parents so that I could recover a little bit more before having to go home and take care of the kids myself. That helped too, to have some time where I wasn’t expected to do anything except recover. I originally didn’t think that I was going to need that, but it did help. I did need some time to just recover and rest. By the time I did go home to take care of the children and do all the things that moms do at home, I felt up to it; I was ready to do it.
Going into the hospital we were so nervous. But I think one thing that kept us grounded and kept us from losing our minds was that once we got here we realized that it was a place that was going to help her. Prior to this we had never really been in the hospital. I think coming here, seeing the people and knowing that she’s here- we have a place to come where we feel confident in the staff and the decisions they make— that is the best thing. Everything may not be all right in every situation, but here your child and your family has got the best chance. So it doesn’t all look gloomy— there is more hope. And this is the place to come, because children have hope here. She’s got a second chance at life.
It is always hard to ask for help, and this is an area our family absolutely had to grow in. When friends ask if they can help, ask them what they would like to do. Offers that come from the heart, or from their own gifting or talent, allow your friend to experience purpose and feel needed. Although it is helpful to us as a family when others help us in some way, the greater benefit actually goes to the one doing it. If they want to prepare a meal, let them bring one. If they offer to run errands, pick up your dry cleaning, or baby-sit your child for an hour or two, let them. Letting others help you allows you time to refresh, and it builds a bond between you and your friend that cannot exist without these types of experiences.
Prior to the actual transplant, I told my daughter exactly what would happen to her. I explained things to her in her own language as much as I could. We were all happy and believed that things were going to get better after the transplant, especially after I saw all those other kids who did the transplant. I would advise everybody who is doing the transplant to do what the doctors say in detail and it’s very important to take care of your child after the transplant. That was one of the secrets that made Darlene’s transplant turn out to be a very good and successful one. I listened to whatever they said, such as, “they need to drink a lot of water post-transplant.” Taking medications on time and everything is very important to getting the kidney working well, so I tried to do all of those things. It helps them through the whole time, to keep the kidney healthy and working.
I began to do research and studied the disease, and later, transplantation. I searched the Internet, though I was very selective about what I found there. My brother is a doctor and he did medical article searches for me. I got a medical dictionary so that I could look up what I could not understand. I started a three-ring notebook with dividers in it for Nick. I had any lab or test results faxed to me and kept them filed in the notebook, and I kept a log of when I talked with the doctors, insurance, nurses etc., and any instructions or changes for his care. I also kept my articles there for easy reference. I kept a list of his current meds there and anything else that I could need at a moment’s notice. I grabbed the notebook anytime we went to an appointment, procedure or hospital stay. Also, keep business cards there and lists of important phone numbers and addresses.
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Financial Issues
Accepting Help
Voice your Fears
lung
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Copyright © 2005, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. July 26, 2005 |
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