Regimented lives

Storyline: Thinking in Autumn Colours 

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“So, you can’t swallow even your meds!?’ Lugo, our neighbour across the street, seems shocked by the discovery. On a lovely November afternoon, we sit on our front porch, distanced enough and then some more for a final chat before they head for Florida. “Yes, everything goes through here,” Alex pulls out the G-tube and show it to them.

It’s been over two months now since he has been fed through a tube; NG-tube at first and G-tube after it became clear that the damage may be irreversible or if it is reversible it will take a long time.  The neighbours, friends and families have known all this, but I guess it didn’t really sink in until they saw it. Susan, our next-door neighbour too was surprised by that fact. They thought he can’t eat food, but never really thought about all the rest like pills, water and anything else that has to get into his body.

I also try to explain that we don’t have much of a wiggle room, when it comes to free time. There are two daily windows between feeding – morning and afternoon. And many things have to happen during this time.

Our lives have never been so regimented. And so incredibly busy. I really don’t remember at any point of my life having had such a strict schedule. Neither does Alex. I haven’t used alarm clock for the last 6 years. We both loved our free-floating retired lives with tons of spontaneity. But since he came back from the hospital needing to be fed through G-tube inserted into his stomach because of inability to swallow anything, our lives have changed dramatically.

Until we experienced it, we had no idea how many people out there are being fed through a tube. Some through a nasal tube called NG-tube and some through a tube inserted in their stomach called G-tube. People are using these tubes for a variety of reasons triggered by a variety of conditions. Some only have supplemental food added to their regular diet (they can still swallow) and others like Alex have all their prescribed food, medications and water delivered through a G-tube. In Alex’s case he simply can’t swallow and thus (almost) nothing can pass through his throat. For many it is a temporary solution until things slowly get back to normal. And for many it is a permanent change.

This post is to create awareness of how one’s life can be restricted by such a way of food delivery. I should not call it food delivery. In his case it’s everything actually – nutrients, medications and irrigation. Below we describe the activities during the first three weeks at home. Things are slowly progressing in the right direction and we do hope to introduce a bit more freedom back in our lives. We just don’t know when this will be. Alex is now taking more ownership of maintaining his body functioning.

After a few days of struggle, when an evening nurse would come to cover up for the lack of a nurse during the day, and plug him on the feeding pump for the night, we finally learned how to operate the pump and establish our feeding schedule of 500ml over 2 hours 3 times a day. We chose these to be 6 AM to 8 AM, 12PM to 2PM and 6 PM to 8 PM. In this way our days were busy, but it allowed him to sleep in our own bed during the night, it is also close to the usual breakfast, lunch and dinner times. And there was enough time to digest after the last feed and before going to bed.

So, given that schedule, what does a day with a G-tube look like for us?

5 AM:

• alarm clock rings. I have about 30 min on my own for coffee and waking up.

5:30 AM:

• crush morning meds ready for G-tube intake and pour 30ml of water in small cups (I use shot glasses)
• take the feeding bag out of the fridge – needs about 30 min in room temperature before use
• Alex does his morning toilet

                Note: Feeding bags are reused for 5 days; they are washed in the evening after last feed, wrapped in a towel and put in the fridge (these are the instructions given to us; actually, the instructions say wash after every use, but washing a bag takes about 30 min and given all the rest it is simply too much; since open food can stay at room temperature for 24h I decided that leftover food in the bag can stay too)

• pour 500ml warm water and bring it to the family room for morning intake
• pour food into the feeding bag (don’t forget to close the front clamp or it will leak all over), hang it on the IV pole and install in the pump

6 AM:

• flush G-tube with 30 ml of water (body temperature in the morning)
• deliver morning meds, each in 30 ml of water and flush after with another 30ml twice
• start feeding. It lasts 2 hours (we are now experimenting with a shorter cycle: at the pump’s fastest delivery rate, we’ll be able to get it down to 75 minutes)

While Alex is on the pump I “make” my breakfast which so far has been more coffee and a boiled egg and a fruit; do my morning routine of paying bills, reading e-mails, planning a day or two ahead (there are always things on the go that I can barely fit into my schedule).

8:15 AM:

• Alex: flushes the g-tube with water (via a syringe), closes tube’s end and walks around the house to encourage digestion.

9 AM to noon:

• Walk in the neighbourhood, weather permitting (we started the walks on my second day home. At first it was a challenge to walk as far as 2-3 houses away. We now regularly do our normal neighbourhood walk of about three km – A).
• Chat if Alex is not sleeping; when with some energy he performs some small tasks. Not the first week when he was completely absent though, but I began engaging him slowly after that. (It sounds here like Diana is dragging me along. In truth she did for the first two weeks, but as I have been getting better, I’m participating more of my own accord – A).

12 PM – 2 PM:

• lunch feed; meds and flushing before and after feed

2 PM – 3 PM:

• walk around the neighbourhood

3 PM:

• deliver the chemo medication; This one is complicated since it is dangerous for me. It would not have been if he was able to swallow the capsules. But at this stage he has to open the capsules and drop the powder into 15ml of water. In the meantime, I put on a mask and gloves and take it from there. I add more water, stir it and we administer it through his G-tube, flush and all. I then carefully dispose the empty capsules and wash the syringe.

3:30 PM – 5 PM:

• walk around the neighbourhood and perform small tasks; often though he falls asleep and wakes up just in time for his “dinner” feed (feels like I’ve regressed to kindergarten, needing my afternoon nap most days – A)

In between all this I have to find time for shopping, making some meals for me, take care of the house and garden. Oh, and did I mention that the dishwasher broke 2 days before his coming home, so everything has to be washed by hand.

6 PM – 8 PM:

• Crush and deliver his evening meds;
• “Dinner” feed;
• Last flush with water

8:30 PM:

• Alex walks around the house while I am washing his food bag
• Me preparing for the next day: making sure I have washed cans of food, all necessary medications and I also boil the 1.5 litres of water he’ll “drink” the following day; our tap water is very chlorinated, plus this way I’ll know exactly how much we have given him

9 PM to 9:30 PM

• Bed time; all evening toilet and off to sleep. By that time no matter how good the day was he is exhausted

What is not recorded above is visits from the home care staff – mainly nurses, dietician once in a while and speech language pathologist; my constant chasing home care (by phone conversation) for something or other, especially during the first week or two. Phone calls to doctors, chemo clinic, doctor’s appointments and chemo clinic visits, which usually derail the schedule, and many unplanned errands.

And of course, the conversations (phone calls, chats, etc.) with our family, friends and neighbours, time permitted.

We sometimes have some free time in the morning and some in the afternoon.  If in appropriate mood and inspiration we write. The posts so far are mine, presenting the perspective of a caregiver.  Alex is slowly coming back after complete absence the first week or so and began writing his story. It will take him a while, but week 3 brought some energy, dispersing the clouds from his head and making things a bit easier. Daily routine is established and followed strictly. I don’t think an observer can understand how even a small change in this routine can throw us back days from the progress made. His body is so sensitive. It takes time to adjust to even a small change. There is a lot of hope for the future but the road to it won’t be easy. (From my perspective it’s starting to get easier. When I was discharged from hospital, I was still suffering the after effects of the first chemotherapy I was given. I was in a cloud. And having been confined to a hospital bed for a month, my muscles were weak and my stamina non-existent. Other than a tendency for my head to start aching if I overexert myself, I’m probably at 75% now and, most days, progressing rapidly. So, through my rose-coloured glassed, I’m through the worst and, barring unforeseen setbacks, things will get easier over the next weeks and months. Fingers crossed – A) Well it may be a tiny bit easier since you’re taking more ownership of your own feeding as I mentioned a few times, however I am talking about being able to swallow beyond a cup of clear chicken stock a day and moving to normal eating.