Storyline: Thinking in Autumn Colours
These days I cry my heart out. Tears are pouring days in and days out. Although we hope Alex’s swallowing can be fixed eventually, the chances that feeding by G-tube can be for life are not small. I have to get used to cooking for me and eating alone. At the moment I eat when he is on the pump. I eat whatever I can, but rarely cook. Sometimes he gets up and wanders. Once I was just trying to get something down when he came up sat at the chair and with his typical English humour leaned towards me, his chin on his hands and stared at me. I burst into tears. “Don’t you ever do this to me!” I knew it was meant to be a joke, but I could not take it.
Once in the hospital, tears in his eyes, he told me: “When I get home can you make a chicken soup and give me just 3 teaspoons.” It is clear chicken soup. Just chicken boiled in water and a cube of chicken stock. This was the last thing he could swallow and it will stay with him for ever. It is his hope and sign that things are progressing.
So, on Thu, Oct 7, between calling all kinds of people to secure a nurse that can hook him up to the feeding pump and delivering food, water and drugs with a syringe I made him the chicken soup. It is something I’d eat for the next few days except the few teaspoons of clear broth that he’d have as a reward after finishing his pump feed (for those of you who just joined us, Alex is being fed through a G-tube inserted in his stomach).
I poured about 60ml in a cup. He took a little teaspoon to his mouth and swallowed it, savouring the taste of every molecule in it. Then a second and a third. We looked at each other, both in tears. Yes, there is hope!
We’d do this every day 3 times a day, for a week. He’d increase the intake to about to 10 teaspoons. Sometimes when he feels well enough, he wanders and takes some more. I can only imagine the warm feeling of something going down his throat.
When Sonia, the hospital dietician, who was so nice to him and left me her business card, called on Thursday October 14, in response to the e-mail, I had sent her the previous night, she disabused us of the chicken soup illusion: “You can aspirate into your lungs which will result in pneumonia. First talk to your Speech/Language Pathologist (SLP)”. So, chicken soup was out for a couple of days. The reason I contacted Sonia was that I needed someone from the hospital to facilitate our relationship with the home care people. The nurses would just show, do something, like changing the dressing around his G-tube and disappear. They didn’t know what their role was and for how long. A week in and I was still in the dark who does what, when are they supposed to come or not, can we increase his food intake so he stops losing weight, etc. A complete lack of communications after Cathy from CCAC told me not to call her because she wasn’t Alex’s case manager anymore.
This same day was full of events. Apparently, Sonia had called the home care case manager, after I told her how things unfolded the first week of Alex being home. Jane (no, not our friend Jane) called on behalf of the case manager and explained the process, the roles and responsibilities. Doesn’t put me at ease, but at least I know who’s doing what and for how long.
And so:
- the nurse is here to train us and once we can handle the situation we are on our own;
- the dietician may visit for much longer, but it is once every 2 weeks or so. As far as I understood she’d evaluate his condition and needs on the long run.
- the speech pathologist will be there as long as needed (not sure about that) once a month or perhaps once every 3 months, etc.
Alas the feeding pump and pole are provided to us for a month. After that we are in the wild. No, they won’t take them just like that if we haven’t bought ours yet, but they’ll rent them to us. I bet their rent is not cheap. Same with all the supplies- bags, syringes and even dressing materials.
We have to buy our own and seek some financial support from Ontario Ministry of Health (MOH). It’s up to us to find the pump, pole, feeding bags, syringes and other supplies. None of these is cheap. We are talking thousands. Some refund will be given from MOH once we qualify.
In the midst of all happenings, being his 24/7 caregiver, trying to keep the house from falling apart (yes things are breaking: dishwasher broke two days before he got home, one of the stove top knobs broke, there is gardening and winterising to be done and many more) I have to also find a supplier, buy and install the pump, find the corresponding bags. I have no idea where to begin. (I’m not incapable of doing my part with some of these tasks: the biggest problem with my participation is that some days – about half the time right now – I spend my time full of headaches and fatigue that render me all but useless. On the “good” days I feel almost normal and ready to do all kinds of things. I’m hoping that the balance tips towards many more good days than bad! – A)
Regarding the dietician so far, she’s been only once and my feeling is that she cares more about the equipment than the person. She sent me the form for the MOH refund for the food pump (it’s a fraction of the cost – a fixed amount). It has to be approved by a doctor. Then we exchanged a few e-mails, all related to the pump and equipment. And when I finally asked when is her next scheduled visit – “When would you like me to come?” was the answer to which our reply was “We rely on you to tell us”.
On Saturday Oct. 16, the speech pathologist visited us. But it would have been nice if she had told me ahead of time that she needed apple sauce and apple juice in order to evaluate Alex’s ability to swallow. We substituted the juice/syrup from peach cocktail, which is much thicker and sugary, and yogurt, also with a different consistency.
She evaluated his swallowing (it’s still not working – A) and recommended some exercises. I needed to get a squeeze ball that he has to roll with his chin. He has to do conscious swallowing and one more. (I’ll happily do the exercises, but I think she was just trying to feel useful. The core problem, and difference between my ability to swallow and the vast majority of cases she deals with is that while most patients would have a physical injury that would benefit from the exercises, my impairment is neurologically caused: it’s due to inflammation in the cerebral/spinal fluid (CSF) as a result of CLL in that space – A). Oh, come on Alex, be a little bit less skeptical. They did say in the hospital that the SLP will recommend exercises for you to do. The good news: she allowed back the chicken soup! And water. I don’t think Alex is interested in water. Chicken soup on the other hand is a delightful news! (Well, if there’s a choice… – A).
And so I went to Dollarama, got him 2 squeeze balls (he can also exercise his hands) and 2 cups of apple sauce. We are now prepared for the next visit. And hope he can swallow a teaspoon of the apple sauce by then.
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