Tuesday, July 03, 2007

Love, Change and Gracious Living

Dreaming Again posted a comment on my last post about a recent decision to send her husband home with lots of new equipment. One of the items she mentioned that they were discussing was a twin air mattress or twin bed for the home. The problem, is that she is a married woman and although clinically it might be the right decision, she indicates that she isn’t certain what will happen to their queen bed if they get the new twin hospital bed let alone the fact that they enjoy sleeping together.

This is one problem that sometimes comes up in caring for individuals with disabilities or chronic illness…what will life be like when you get home and how do you manage the changes to your normal existance.

It’s been around a year ago that Dear Son was switched to g tube feedings and it was probably one of the most difficult transitions I’ve ever had to make. Although I didn’t doubt that it was the right one from a clinical perspective, it was extremely difficult because it changed our family life, forever. Gone were the days of making home cooked meals for Dear Son, ones he really enjoyed. He was the kind of kid who loved my home cooking and refused all offers of food at school and in the community setting, including any kind of treat. It became a joke at the Individual Education Plan (IEP) meetings when they discussed his development, that he refused all other offers of food. It was something that made me proud because it was our home life that he loved.

I felt good too because I knew when he was hungry. Since he couldn't speak, it was great that he could communicate this to me. He’d made these clicking noises as I called them, with his tongue, to indicate when he was hungry and then I'd feed him. Although we ate at regular times, there would be a few occasions where he'd be hungry earlier, like anyone else. A few years back, when he could walk on his knees, he’d sometimes walk into the kitchen and click, to let me know he was ready to eat. Or sometimes, when I was feeding him, it would be more dramatic and he would take his face and smash it into his food, indicating to me to hurry up and serve him faster. He didn’t like it if I took too long to give him his food. It was always a balancing act, trying to figure out how to serve his meals so we could all eat together or after I divorced, for Dear Son and I to eat together as opposed to serving him separately and then eating my own meal after that. I settled on cooking one meal, we both could eat, his finely chopped and mixed in mashed potatoes usually, and mine normal, but we’d eat at the same table with me serving him his food and then grabbing a bite in between while he processed his food. I say processed, because he didn’t chew that well and preferred to taste and swallow.

So the problem came when we came home from the hospital last year and I could no longer cook a home cooked meal, with the house smelling of the food, without feeling guilty. We had a little ritual all the time, that any time he got out of the hospital, I’d good his favorite meal when we got home. That ritual had to be broken immediately. From that point on, I didn’t like eating in the same room or eating whenever he could see me. It just seemed too mean. I mean, how could I eat a nice hot home cooked meal, one that he loved, and not give him any, even if I knew it was the right thing to do? Easier said than done. So I’d eat after he went to bed or after he’d fall asleep, but never while he was in the same room.

The holidays were particularly bad, because he was home from school all day. It was really hard not to break up a long day by making a nice meal. I decided to feed him a meal on the holidays, even though he wasn’t supposed to eat anything by mouth, because well, I just couldn’t cook a Thanksgiving dinner or take him to a relative’s house and have him sit in another room while everyone sat around the table and talked and ate, with him excluded. It was as much about the social aspect as it was about the food. I remember last Thanksgiving, when I fed him, he’d got really excited, his eyes got real big and he’d smile. I’d feed him very, very carefully so he wouldn’t choke. Tiny amounts, finely chopped, almost pureed. The whole meal took so long, I’d have to head it up in between, but it felt really good. Both for him and for me. I did this at Christmas too.

Winter came, and some days were just downright cold. It didn’t feel good to send him to school with PediaSure in his belly, without a hot meal. In the old days, he’d have hot cereal for breakfast. Or when he’d come home from school, I’d make him a hot dinner. Those days were over.

And then there was my eating. Gone were the healthy home cooked meals, since I didn’t feel good about cooking. I tried different times to get into the habit again, but it never felt good. I tried starting a new ritual, of eating by candlelight to make it more enticing, but eating while Dear Son lie in the other room didn’t feel right either.

Over time, it got easier. His swallowing had deteriorated so much that he didn’t want to eat much anymore. At the last IEP in May, I asked questions about lunchtime. The school nurse used to feed him for many years. I asked if it seemed like Dear Son missed food when he sat in the cafeteria with the other students. She said no, he was too busy looking at the other girls. She said she totally understood my concern, because Dear Son loved my cooking but that she felt he was o.k. with eating via the tube now. It made me feel better.

It was around that time, that I finally started cooking again. I make meals in my kitchen and am eating much healthier. I don’t feel as bad as I used to. I was reflecting recently on just what made it so difficult to make the transition. I think it was because when he eats via the tube, I have no way to know when he’s hungry or when he’s full. When he could eat by mouth, I always knew when he was hungry and he’d always stop when he was full. I had done that his entire life, stopping when he didn’t want anymore. With the PediaSure, I have no way to know when it’s enough or when he’s hungry. That bothers me. I also felt a little guilty. Although I know in my head that he needs to eat via the tube, it’s also easier so sometimes I think am I doing this because it’s easier and then my brain switches back and I remember that I am feeding him via the tube because I have to, not otherwise. I think in the end, it really boiled down to my feelings about being a good mother. I never felt like a very good mother when I gave him the PediaSure because it didn’t have any love in it. I couldn’t tell if and when I met his needs. And that was important to me. It was important to know for a child who can’t speak, that he’s not hungry and I have no way to know that when he eats like this.

Dreaming Again’s comment brought it all back to me. It’s about how your life can change in an instant. It’s about how a decision made in the hospital can have a huge impact at home. Sometimes, you need to follow the rules and then sometimes, you need to stand up for what you believe is right. And sometimes, you make the changes gradually. I thought about her comment and then remembered when they suggested a hospital bed for Dear Son. I put off the bed for many years until finally, I knew it was necessary for him. And when I did, I made sure that it fit with our family life and I made it part of our home. And that’s what I wish for Dreaming Again.

If it were me, I’d bring my husband home and let him sleep in our bed again, after five weeks of being away. I’d be willing to bet it would do both of them good in terms of healing. I would also suspect that one of two things would happen. One, they’d realize that sleeping in the same bed, despite all of the other equipment he has, was wonderful or two, that his medical needs were so severe that the twin bed they prescribed was necessary and the right choice. But then, they will have come to that decision instead of the decision being made for them. They might not come to the second part right away, but over time, they might feel that it was necessary and the benefits would outweigh the negatives. It would make the transition a lot easier.

We take so much for granted. But while we need good medical care, we also need to be protective of the things that make our house a home. Sometimes, we need to make medical decisions with our heads and other times, with our hearts. These changes are hard because it changes the way we define ourselves and how we show our love to those we care about the most; as a mother, cooking for my Dear Son and her as a wife, sleeping with her husband. And sometimes, making those changes, takes time. It’s hard giving up things you love and rituals you loved for the unknown. Somehow, nothing quite compares to that. But in the end, it’s about doing what we need to do for those we love. It’s about loving, honoring and caring for them, in the best way that we can. I think that’s called, “Gracious Living”. And that never goes out of style.


Dreaming again said...

Thank you for this. I knew you'd understand. I'm sorry I brought all this back for you.

I had a friend who suggested the bed go into the living room, and I didn't react to him, just smile and nodded. But inside, I had a rather violent reaction.

Absolutely not! If we do go this way, it will go in our room, where he belongs, and if we must, I will get a twin bed as well, and put it next to his, so that we can still be side by side, and a quilt will cover both our beds. The unity, is important.

I understand, in a two story house, or a large house, why some people must put someone, at the end stage in the living room, but Don is not at that point, and we have a small (1087 sq foot) house and there is no reason to put him on display.

He has a discharge date of Friday! Today is six weeks! Today may be the country's Independence Day ...but Friday ... is truly Independence day!

Dream Mom said...

That's fantastic news. I saw that and was so happy for you. Hang in there.

zoe said...

Well said Dream Mom. I read somewhere that "caring for another is the ultimate act of love." I think this best describes you and Dear Son.

yarn shop girl said...

ditto on those feelings! My little one had a g-tube placed last october,we didn't want to do it and fought to keep her eating. But, aspiration pneumonia is no fun and we reluctantly gave in. We thought it would signify "the beginning of the end" Ask me now and I'll tell you that it's the best thing since sliced bread! No more choking, gaining back all the weight that was lost those last few months and a much healthier kid! Thank you so much for sharing your life with us it's good to know we're not alone

Special Survivors said...

Being able to feed your child and watch them grow from your efforts is a very big part of traditional mothering. I remember feeling such a sense of loss when my son needed a feeding tube.

My son is now 3.5; but last November, we had to change from a g-tube to a gj-tube because he was having such severe reflux and beginning to refuse his tube feedings. It was that or surgery to "redo" his fundoplication. We opted for the gj-tube and a continuous feeding schedule via portable feeding pump. It seemed like such a huge step backwards; but in retrospect, it was the right decision. We've been able to wean him off the gj, and now he's back to a more physiological appropriate feeding schedule through a regular g-tube. He continues to get feeding therapy and now is more willing to put food into his mouth.

Thank you for sharing your thoughts and feelings while on this journey.

Take good care,

Kathryn said...

Dream Mom - another beautifully written post that had me in tears. Ellie stopped eating by mouth in May of 2006 when she started having seizures. She had a g-tube upon leaving the NICU and it had been a triumph that for the 6 months before the seizures I had her eating everything by mouth (pureed) except thin liquids. It's really hard to be giving her everything through the tube. She used to make this mmm, mmm sound as she ate and she would make say, AAA! if I didn't go fast enough. I miss feeding her by mouth. But even with the g-tube she still makes a similar sound to what you described Dear Son making when she is hungry. She is not on continuous feeds.

I still cook all her food for her. I make her soups, purees, eggs, everything and blenderize it then push it though the tube. That way, at least she is getting all the love I put in her food and I look at the food in proportion to a meal I would give her if she did not have the tube. She get's 5 little meals in this manner a day and nothing at night because of her reflux. I am not sure what Dear Son's dietary requirements are, but a blender can make anything go through that tube! (Ellie has a Mic-Key button).

Although, I totally understand that it's not even close to sitting down with him and feeging him by mouth. I can see why you miss your family meals with him.

Dreaming again - congrats on your husband coming home. I wonder if the people willing to buy him a single hospital bed would give you the cash instead so that you could put it toward one of those double beds that are together but act like connected hospital beds. I see the ads for them all the time on TV commercials. Just a thought. It is totally horrible that they think a single bed is just fine.

Dreaming again said...

He is home! :)

Bipap, oxygen, portable tanks,
a machine that puts oxygen into the bipap, and fills the oxygen tanks for us, tubing so he can go throughout the whole house ...

a walker, a shower seat.

The bed hasn't been fully decided on yet.

I guess home health will make that full assessment over the next 2 weeks. Sending him home from the hospital, the initial was a no, but they may do a mattress pad or something else, not sure, or he may need it at some time in the future ..or ..who knows.

Home health will be here at 10 am, and he'll have home health, and home OT and PT for the next couple of weeks while we figure out where we go from here.

Medicare's brilliant rules say he can't have a walker and a wheelchair. So his activities will be limited to being homebound for quite a while.

jennifergg said...

Amen to gracious living. It's what makes the difference between living, and simply being alive.

I want to remember this always, for my son, and for all the people I love. Thank you, Dream Mom.

Dream Mom said...

Thanks for all of the comments. It's especially good to hear from other parents of kids with tubes.

Kathryn-Dear Son has a Mini-Button. I've tried pureeing things but they continue to get stuck in the tubes and it doesn't work and then I have to toss out the bag. They are pretty expensive and I have a limit per month. Maybe you can e-mail me off line with any suggestions and I can try again. Thanks for your help.

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