Tuesday, September 5, 2017

What is a Caregiver?

Being a Caregiver means completely different things for different people. Every Caregiving roll is unique.

Here is what being a Caregiver is for me: As my husband's Caregiver I am his his full time supervision, personal aid, daily planner, chauffeur, personal assistant, chef, support.... it means long days, longer nights, worrying, making tough decisions, protecting him, handling seizures, handling meltdowns, handling anxiety attacks, handling mood swings, ADVOCATING, fighting for what he needs, working with drs, researching... on and on and on...

There are so many aspects of his medical issues that people don't see. There are so many things that are too uncomfortable to talk about. Even our closest friends haven't seen it all and don't know all of what goes on when they aren't around. This is the part that makes being a caregiver so lonely. The balance between garnering support, creating awareness and maintaining a degree of modesty, is delicate. Some nights, as a lay awake after a particularly rough day or a bad seizure or an awful meltdown, I want nothing more than to pour it all out on Facebook (or something like that), so I can just talk it out. But I know, some of it my husband would be mortified if I discussed it. Or at least uncomfortable and embarrassed.

I have many sleepless nights, either because I'm taking care of my husband, or because I'm worrying about money, or I'm worrying about my husband, or I'm researching things for his treatment.... I have many days where I am afraid this is the day he will be hospitalized for a breakdown, or this is the seizure he won't come out of. I am in a constant state of high alert. It isn't safe for him to be left alone and even taking a shower leaves me fearing he'll get hurt while I'm in there. 

When I am sick, I'm still his full time caregiver. When I have a migraine, I'm still his full time caregiver. When I am tired, I'm still his full time caregiver. When it's my birthday, I'm still his full time caregiver. I am his full time caregiver, 24 hours a day, 7 days a week. The VA Caregiver Program doesn't think I am worth more than part time though, which is such a huge slap in the face. He has several seizures a week, that require me to take care of him fully, including physically moving him, cleaning him etc. His meltdowns and panic attacks require me to help him through them. I have to manage his  medication. I have to make all of his appointments. I have to be with him at all of his appointments. I have to help him remember simple things. I have to help him with his CPAP and mask throughout the night. When his sleep disturbance keeps him awake, I must be awake. When he has hallucinations I have to keep him safe and manage him when he's inconsolable. I must deal with his mood swings and outbursts. And this is just some of it. He is my full time job. Without my care, he would either need a round the clock aid or to be in a facility. Both of which, would cost substantially more than what paying me as a tier 3 caregiver, would be.

But at the end of the day, he's my husband and I love him. I will keep fighting for him. I will keep advocating for him. And I will keep taking care of him.

I am a Caregiver.