My 12-year-old son, Jacob, has cerebral palsy and cystic fibrosis, which have resulted in many hours of home medical treatments and several surgeries requiring lengthy hospital stays. While our family's challenges are often unique, every family has difficulties. I have found that those difficulties often expand to match the available time to deal with them. In our case, long hospital stays often eat up much of our available time, and we have had to examine various ways of dealing with this particular challenge.
Recently I had a chance to get Jacob's opinions on what he likes and dislikes about staying at the hospital for extended periods and what helps make things easier for him. Mixed in with his thoughts are my own tips and suggestions for coping with the strain of a lengthy hospital stay.
It's fun getting spoiled by the nurses and staff
Jacob loves to have the hospital staff dote on him. We have experienced truly wonderful medical professionals, who take good care of Jacob, both medically and emotionally. My suggestion is to both help them when needed and stay out of their way so they can do their job. As Jacob gets older, I’ve encouraged the nurses, therapists, and others to talk directly to him, not past him to us. He wants to be involved in his own medical decisions.
Ordering room service makes the stay more bearable
Occasionally, Jacob orders room service from the hospital cafeteria. It makes him feel even more grown up to do it all on his own. If you must be at the hospital for long periods, I recommend taking advantage of any special services the hospital offers, such as room service, relaxation therapy, or even just a quiet place where you, as the caregiver, can watch TV or unwind for a moment.
Join in all the fun stuff to do!
The children’s hospital where we take Jacob has a fair amount of games and toys with which he can play. Especially when he was younger, it was particularly important to keep his mind active with such diversions so he would not dwell on what scared him.
Jacob really enjoys having family, friends, and neighbors come to visit. We try to encourage these visits as much as is practically and medically possible. When people can’t come to see Jacob personally, we read him the messages we get for him in emails and other online posts. If your loved one will be in the hospital for a while, I suggest letting concerned family and friends know about the stay so they can provide needed encouragement and support to help brighten difficult days.
. No matter how painful the surgery or how dreary the hospital stay, time marches on, and Jacob soon gets to go home. He keeps the thought in mind that days go by fast and mentions it often. I suggest being very careful not to make promises, especially to younger children, about when the stay will be over. Be hopeful and optimistic, but don't make guarantees you can't honor.
Being away from family and friends is hard
Even though we try to work out our schedules so that there’s a family member with Jacob as much as possible, it’s not the same as having the whole family at home, together, at the same time. It’s also difficult on his brother, who is often by himself or with only one parent at home. If your situation becomes more long-term, adapt your life to bring as much normalcy as you can to both those at home and those in the hospital.
Knowing what is going on can be empowering
. Even when he was younger, Jacob insisted on knowing what his medical treatment would involve. Now, as a 12-year-old, he knows more about medical and hospital procedures than any of his friends! We insist that, as much as appropriate, things be explained to him, and in ways that he can understand — sometimes the staff does that and sometimes we do.
Understand that worry and fear eat at those who struggle with illness
. As Jacob's dad, I wish I could shoulder all his worry and fear. Jacob is strong, and he soldiers on, but I can tell that sometimes he just gets overwhelmed, which breaks my heart. I think the best thing that a dad or mom can do for their sick child is to hug and hold them through it all.
Getting poked and prodded doesn't get easier with time
When Jacob was really little and the nurses needed to draw blood or put in an IV tube, it really bothered him. Even as he gets older, the stick of a needle still, well… hurts! Really, what kid looks forward to getting a shot? Grownups don’t like them either, right? Although pain is a part of life, some pain can be eased by learning coping methods, such as breathing techniques and relaxation therapies.
Anesthesia is distressing
. One thing that always bothers me are the release forms I must sign when Jacob goes under anesthesia. The doctors tell us that sedation is a routine procedure and that they’ve done it a hundred times. That makes me feel better, but then they hand me a form stating that when they put Jacob under, there's a risk he might not wake up. I sign it and they wheel him away into the operating room and suddenly it’s my turn to get really scared. I have found that prayer and close communication with medical professionals is the key to coping with the risk of anesthesia.
We have learned so much about how to deal with Jacob's illness by listening closely to his feelings. Getting through long hospital stays can be made easier by listening to a sick loved one's concerns and then taking advantage of all the resources the hospital offers. When you stay informed, realize that the stay won't last forever, and accept the love and support of concerned family and friends, you can survive a lengthy visit.