When care changes over time – Kai


Kai’s father decided he would go off the dialysis. Kai describes the positive effects of this decision.


So in September things were starting to get worse with his leg. It went from a simple quarter-shaped bruise and by the end it had enveloped his whole leg. I’ve never seen anything so fast like that. So on top of keeping the house immaculately clean for his dialysis then, there was the dressing and the cleaning and keeping him occupied and…it came to the point where we had this appointment with the doctor and I remember, like we were in the, like in an office probably like a little bit smaller than this room with my dad, my mom, myself and the doctor, and they basically gave us the option of amputation. But because of somebody in his condition, it could take year—he estimated maybe like five years just to adjust, because of his condition—to adjust to not having a leg with rehab and things like that. And because of his heart condition, he would most likely pass away on the table because of his heart disease, because of the anestethic they would have to use. Or go off dialysis and within four days he would pass away.

So basically it was a death sentence. There wasn’t really any good news there, but what I loved about this doctor, and this was the only doctor that I remember that didn’t beat around the bush. All the doctors we had sugar-coated everything. It made us feel there was hope, there were other options. But this doctor just said it like it was and I loved that. I was already tired of everything else that was happening in a medical field that—like our doctor saying he had a clean bill of health and then congestive heart failure—so I was already tired of listening to doctors, but to have this guy not only give it like it was, but then he asked, he went and asked us personally, “How are you doing?” He just made you feel like you were included in this, like […] not only was this a major affliction for dad, but this was also afflicting us. So, I really felt that he made us feel special in that sense. He was looking after us.

So that was a major adjustment right there. Dad didn’t give an answer about what he wanted, so he spent a few days meditating on that, and talking to friends and family trying to get their input. And then, we had this conversation about the day before he went to hospice, how throughout this whole experience, everything was out of his control. He didn’t have a choice in retiring, he didn’t a choice in the condition that he had, he didn’t have a choice in his driver’s licence being revoked, but he felt at least in this situation he did have control over the choice that was going to have to be made. And he knew that with amputation, it would be a tremendous amount of caregiving in that aspect, so he knew that that would be a burden on us and he didn’t want to do that anymore. He was tired […] For him he was saying like how life just wasn’t really worth living because he was in bed all the time, he was sick, he was in pain. So, he felt that this was his opportunity to take life in his own hands and go with some sense of dignity with both, with all of his limbs. That’s what he wanted; he wanted to leave with all his limbs.

So, as a family we made the decision that he was going to go off dialysis. And so, we had about a month and that was probably the happiest month of my life. We knew what was going to have to happen at the end of the month, but we treated it as this was grace from God. We know how long we have, so we know that we need to appreciate every single micro second of the day. So, I almost, our house did become like grand central station. People were coming and going. Friends were coming and he never turned away anyone. Like, if friends wanted to come and visit with him, he always would welcome them in and they would have their final conversation. And family started coming and people were bringing food, so that was a nice weight off my shoulders, not having to worry about food. And people were very helpful in terms of anything we needed. It was great. But there was still making sure that… Life was still the same; I needed to make sure he was to take his meds, because at this point now he was starting to, his mind was starting to go just ever so slightly. So making sure that he did, like I had to make sure he took his medication. I put it in his hand. Now, I did feel like a parent in this situation, but it had to be done.

More from:

More content