Storyline: Thinking in Autumn Colours
No, not really but it for sure is overwhelming. In the hospital Alex had 3 shifts of nurses, 3 shifts of patient assistants (clean up food spillage and vomit, wash, dress, etc.) 2 shifts of cleaners, support staff, dietician, doctors, pharmacists and more. Nothing there is reused, so no washing cups, syringes, food bags and all the rest. Someone brings him clean gown, PJs, sheets, blankets, and throws the dirty ones in the laundry basket.
At home, I am the only one who has to do all of the above and more 24/7.
The first day and night home was really rough. But before that:
Last week Kathy from CCAC (Community Care Access Centre) called Alex and then me to inquire about our home setting and determine what kind of equipment we’d need. She is our assigned case manager. She would make sure the food pump, the stand, syringes, food bags and other supplies would be delivered on Saturday. This actually determines when Alex can be discharged. I have to confirm with the hospital that I have all the settings needed for his feeding before they will send him home. I won’t go through the delivery hurdles, outsourced to another company, but eventually I received the supplies on the weekend and it was safe for Alex to come home.
Kathy also gives me the names and phone numbers of the assigned nurse and assigned dietician. They both contacted me before Monday, Oct. 4. The dietician will call on Wednesday. The most important was the nurse who should visit within an hour of his arrival home. We exchanged a slew of texts. On Oct 5th I texted her that his discharge day will be Wed, Oct 6. Then she asked for photos of the pump, which I sent and we agreed I’d contact her once Alex is home.
Wed, Oct. 6 – day 1 home:
We are finally home. He hasn’t had more than one “can” (a 250 ml tetra-pack) of food and he needs 6 in 24 hours.
Plus 1.5l of water. Plus, crushing, mixing with water and delivering all his medication via the G-tube (the feeding tube). There are 10 of those. Meds were delivered in the hospital, so for today all it is, is the food and water.
I text Dabash, his nurse, that he is home. And I get the following text. “Hi Diana, Alex is on another nurse’s list now, I have informed the office that the patient is available for the visit. He will call you. Office number is ### Ext. ### if you need to call.” Well, that was a surprise. (And as time passes by it is still an enigma what happened)
I don’t waste time and call the given number. Invalid extension. Then I go through the main line. It is S.R.T. MedStaff company. Yes, Alex is on their file. And yes, someone will call and come shortly. His name is Namoud. Namoud calls around 4pm and says he is in our area and he’ll try to fit him in now. I wait. Nothing. Calling back the same number is useless. I call CCAC case manager Kathy. She says Alex is on S.R.T. MedStaff’s roster now, but agrees to call them and facilitate. 10 min later Namoud calls and tells me “I’ll come, no need to call anyone”. Well, it is past 5pm. Alex hasn’t been fed or hydrated since the morning. I give him some water through the g-tube with the syringe. Thanks, Cherry (one of Alex’s nurses in the hospital), for training me on this one. She’d offered to also train me on the pump, but I’d been told that the pump for home would be different. It also has to be installed and I have no idea how.
Alex: I’d been so full of hope that I’d feel well when I arrived home. Alas, by the time I had got into the car at the hospital, I was done in. A month in hospital and I couldn’t even open my eyes while Diana drove. So, while I was aware of the events of the day, and Diana’s struggle to get the help that she needed in order to help me, I just kept drifting off to sleep.
Namoud eventually shows at 8pm! He installs the food pump, pours 2 cans of food into a bag (500ml in total), set him with the slowest rate of food delivery, tells me that tomorrow morning the nurse will come (“she is really a good one”, he adds) and leaves. He is in a hurry. Later we’ll learn that he is the evening nurse, a catchment for everyone that didn’t show up during the day.
As the pump starts working, before even food goes in, Alex throws up. Luckily, I had a bucket next to his chair. I clean up the mess and give him the anti-nausea again. Plus, hydromorphone. After the drugs went through the G-tube he settles, we turn the pump and he falls asleep. I go upstairs. Our bedroom is above the family room and I can hear every noise so I am not worried that he is alone. Plus, we text. At 1am my phone buzzed with a text. He needs help. All the sheets, his cloths and socks are soaked with food. Apparently one of the two valves of the G-tube wasn’t closed properly.
He has disconnected himself from the pump, curled on the sofa next to the chair, where he often sleeps, and doesn’t want anything any more. There isn’t even a can that he has taken in. He is lighter than me and his weight is continuing to fall. He sleeps, while I am running the laundry. I need his protective sheet back on the chair in case any of these happens again in the morning.
Thu, Oct. 7 – day 2 home:
Early morning; I crush and deliver half of his meds. Wash cups and syringes. He doesn’t want food. I manage about 100g using the syringe, then we push some of the drugs. The food bag looks clogged and I can’t wash it. Again, in the hospital an empty bag goes to the garbage. At home I have 6 and have to somehow reuse them (5 days each), until next delivery, which I’ll learn later is every 2 weeks.
Namoud told us last night that a nurse will be with us this morning. It is past 10am and no one has called. I need to get him some medications from the pharmacy.
I call the S.R.T. MedStaff. Yes, they have his name. Somebody will come. “When?” “Oh it’ll be a while.” “I need to go to the pharmacy.” “It won’t be that soon. You can go.”
Alex: I’m still out of it, very nauseous and wondering how I ever managed to tolerate so much of the food while in hospital. I am aware of Diana’s mounting frustration, and her fears for me. She’s a very organized and capable person, can’t understand how things could go off the rails so quickly – or more accurately, never get on the rails. And she’s now in near panic that she won’t be able to take care of me because of incompetence in an organization whose sole function is to provide home care for those who can’t care for themselves.
11 am. Back from the pharmacy. No one has called. I try and we push the rest of food from the open can with a syringe.
Noon: Push more drugs. And a bit more food. Yay! He has some energy. No nurse.
1pm. Alex has enough energy for a shower. He has not had a shower for a month. Just sponge baths. We have to change the dressing on the tube. Of course, the ever-evasive nurse should do this. But when? So, we carefully peel the dressing. Finally, he showers! I then put new dressing around the tube. May not be perfect, but better than the old stinky one.
2pm. Time for his chemo. And I cajole him into taking a bit more food after. We are on the second can. He has to have 6.
3pm. No one! I call Kathy, the CCAC case manager. She says not to call her anymore because she is not with his file. Same as the assigned nurse yesterday. What? She was only coordinating the transition between the hospital and CCAC. She gives me a phone number. “Can you give me a name?” “No.” I call the given number and go through a long menu and even longer blurb about what measures they are taking to protect us from Covid! Well, I guess we are well protected since they’ve all disappeared. Eventually after many tries, I get though to someone. Yes, they have him on file. No one had come yet? Nope! They will send somebody.
Good luck with this one. What if we were older? What if I wasn’t capable of helping?
4pm. Namoud calls. “No one had come yet? They told me someone will be with you in the morning.” He is a good guy. “How many cans did you manage to push with the syringe”. I tell him. “OK. Try one more. I’ll come and hook him up in the evening.”
I did. But couldn’t push even a half of a can. And I know he needs a lot more water too.
Namoud shows shortly after 7pm. I tell him I can’t wash the bag. He looks at it “You haven’t unlocked it” and he turns a teeny-tiny valve in a tiny button on the tube coming out of the bag.
Well, nobody came to show me anything, how in the world I am supposed to know? He washes it, pours in 2 cans of food, turns the pump on and leaves with “They should come tomorrow. If no one comes, call me. I’ll hook him up in the evening.
Alex: Well, even though Namoud exudes competence, and his offer is much appreciated, how the hell does that relate to getting us (well, Diana actually) trained up on the pump? How does this organization survive? (Hint – they are paid through our tax-funded health care system, and apparently oversight is weak in this case.)
Fri, Oct. 8 – day 3 home:
A nurse calls. She’ll come between 12 and 1pm. The dietician arrives at 11am as scheduled. She weighs Alex and we discuss the best way to progress to 3 times 2 cans (500ml) of food daily. For the rest of the day, I follow her formula. He seems to tolerate it. The next morning we’ll start the 250ml/h for 2 hours 3 times a day.
The nurse calls that she’d be late. I am not surprised. Sarvat shows at 3pm, driving a Porsche SUV. “Hmm, they say these nurses are underpaid”, I say to Alex. “Yeah, but did you see her ring. It’s probably her husband’s money”, Alex replies. Glad that one of us has the attention for details. He must be feeling better. (I’m up and down more often than a street walker’s knickers – A)
In the morning he had a shower and I changed his G-tube dressing. So, all I need from the nurse is to show me how this bloody pump works. I’ve been syringe feeding him most of the time. I have the settings from the dietician. But what I really need is help to put the food bag’s tube in the pump properly. She says she hasn’t had such a pump and struggles with it. Alex Googles it (in a moment of clarity – A) and eventually the team effort pays off. We start the pump. In the meantime, I tell her my last two days’ odyssey. I need syringes, I need other supplies. She suggests that I tell this to his nurse. She is just filling in for her. “Who is my nurse?” “Dabash is your nurse on file” I show her the text Dabash sent me on Wednesday. “Don’t worry. I’ll straighten some things out. She’ll be here tomorrow.”
And sure enough, Dabash calls the next morning, day 4 of Alex being home, and tells me she’d be here at 1pm. I am not sure if and why I need a nurse now. I know how to set the pump, deliver the water and drugs, change the dressing…”
And so Dabash shows at the door as if nothing had happened, asks questions, I ask her to authorize syringe supply (which can be on Tuesday after Thanksgiving). The pump is running, so she has no input in it.
Tue, Oct. 12
I guess Sarvat was somewhat senior, sent as the last resort to help on Friday. She listened and she did help. We’d have Dabash on Sunday too, arriving at the scheduled time. I told her not to bother on Thanksgiving Monday. She sent me a text last night with her schedule for today and those supplies should be arriving today too. Supplies are here. And she showed on time. She asked the now regular questions, quickly changed the g-tube’s dressing, and as she breezed out the door said, “your service will be stopped soon as our mandate was to train you on use of the food pump and ensure that you could maintain the dressing. See you tomorrow!” Sigh.
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