Care Giver Tip # 4 Hierarchy of Caregivers

Hierarchy of Caregivers

This post took me all day to write, from 6 in the morning to 8 at night. The typing of the words only took approx. 15 minutes, but it has taken me all day to process the emotions. I had read this journal entry months ago, but it wasn’t until I wrote this that everything settled in.

There are caregiver tips here. 

•  Insight into family dynamics during a stressful time.

•  How important it is to put our own needs and emotions aside while caring for someone so ill.

•  The lesson I would think Mathew would expect me to learn.

•  I could berate myself for the rest of my life for hurting him in any way or I can learn to see these opportunities as an opportunity to be a blessing to someone at a time of need and not a burden.

I think as we progressed through this journey, we did learn, some of us more than others and in different ways. It’s what Mathew would expect from us as well as himself.

Mathew’s sudden and unexpected diagnosis, the rate of procedures, hospital transfers, new doctors and new information about life or death conditions created a void.

**That void was for primary caregiver roles and the hierarchy of those roles.

I had been acting (as Mathew's Mother) as if it were obvious that even though Mathew was an adult, he needed back-up and someone to coordinate and make decisions. Specifically, since he was trying to process what was happening to him and had some issues with perception due to toxins and pain.

That first day at Moffitt we are getting terrifying information. Cancer, potentially lethal blood clots, fluid retention, and managing conditions so things don’t take a downhill turn. 

Fluid retention was due to the cancer and the compression on the inferior vena cava.

After Diane (Stepmom), Mathew and I had been given information by the doctor and asked questions we knew that it was imperative that Mat’s legs were frequently raised and no rubbing of his legs.

Midday another family member comes to visit. I will not mention a name because at this point in time I’m willing to put this down to fear and not understanding the situation. Though, I did have a similar experience with this person while Mathew was at Zhills Hospital second guessing me while I was speaking to the doctor.

This person came in and proceeded to interfere in what we were doing with Mathew’s legs. 

I told Mat it was time to raise his legs again. Of course, he didn’t want to, he felt terrible and was discouraged. This person decided to argue with me over the issue.

I cannot tell you how angry I was. Furious to be honest.

Mathew’s Father and Stepmom where there and they were on the same page as the doctors and me. 

So, I left the room. 

I didn’t trust myself to go back in and remain civil, so I took the opportunity to go home, clean up, regroup, get some sleep and come back ready for a prolonged stay.

When I get home, my sister Kathleen comes over and I’m giving her updates. My phone rings and it’s Arpie, Mat's Father.

“Do you need to talk?” He asks.

All I can do is cry. I am heartbroken, tired and angry.

He tells me this other person had no right to question me and that I should be receiving an apology.

He told me to take the night and get some sleep, Mathew wasn’t alone.

**In the next few days, the four parents would have a discussion on everyone’s role in Mathew’s care.

But more than this, I want you to see how this affected Mathew.

From Mathew’s Journal

3-2-14

Problems with pain being leveled out with Dilaudid drip.

Causes drama with family, who misinterprets dosing and argues with me in front of the nurse. 

The family drama hurts me as much as the tumor n my abdomen. But it becomes less worthwhile and I need to focus on getting better.

I take a series of pills and fall asleep to dreams of warmth and twisted cityscapes.

The sad part is in Mat’s journal he has me leaving the room, having a good cry and coming right back in and when I came back in, he thought I didn’t want to hug him.

When in fact, I was gone about 18 hours and I don’t know why he thought I didn’t want to hug him. Its possible, he was in the middle of talking to a doctor. I wish I could recall.