I'm Better Than I Think I Am (Most of the Time)

I’m going to touch on a subject I have talked about before. It’s probably the subject every caregiver hates most to talk about. It’s definitely something I hate to admit. I am heading for a bout of “caregiver burnout”. I can feel it happening like a runaway freight train headed straight for me while I am tied to the tracks.

If you know a caregiver, give them a hug and offer to give them an afternoon off. You might just save them. I’m sure everyone feels it differently so I thought I would share a bit of how it feels to me. But first I have to explain how I get to this point. I take care of Dad round-the-clock five days a week. The other two days (Richard’s days off) I work overnight taking care of a 90 year old lady and Richard takes care of his dad. What this means is, I take care of people 24 hours a day 7 days a week. For a month at a time, I do really well, but after that I NEED a break. If I don’t get one, I start feeling like I am going to break. Imagine the emotional roller coaster caused by PMS magnified by 100 times or so and you will have a small sense of what it feels like.

I feel like I need to cry so often it disgusts me. I get horrendous headaches and I don’t sleep well. I have an extremely short fuse and it doesn’t take much to ignite it. I begin to second guess myself on every decision I make. I feel run down and can only hope I don’t get sick. I start having anxiety attacks. I pray for relief. I wish I were anywhere but here.

I feel like the very essence of me is being sucked out of my body, drained from my heart. I give so much of myself to my elderly people that there isn’t much left at the end of the day. It’s an exhaustion I never could have imagined until I had felt it firsthand. Maybe it’s because there is no “end of day” for a caregiver. You are on duty ALL the time. Even when I am sleeping, there is a monitor on in the room with me so that I can hear my charges, at home and at work. I have to be available if they need me. I’m not exaggerating when I say it’s a 24/7 job.

I have heard taking care of the elderly compared to taking care of a baby. In some ways it is and in some ways it isn’t. Babies don’t talk back or argue or sling obscenities, they can’t hit or scratch or bite. Babies are dependent in their innocence; adults are innocent in their dependence. Lifting a 20 pound baby and putting it into bed can’t compare to doing the same for a 100-200 pound adult. Honestly, you can’t even begin to compare changing a baby’s diaper to changing an adult’s. You can’t compare much about the two at all.

Try to imagine it… Your only time off is when you are going back and forth to the grocery, pharmacy, work and your child’s bus stop with an occasional trip to the bank or Walmart thrown in for good measure. Did I mention your only time off revolves around taking care of your charges needs, too? Sometimes, it can be extremely overwhelming and a bit suffocating. When you can’t get anything accomplished around the house because your charge won’t let you out of their sight. When you have a hundred things to tend to but you are cleaning the bathroom for the fourth time that day. That’s when the “burnout” begins.

Here’s a “catch 22” for you: Dad is doing so well with meeting the goals that home health set for him, they may have to release him. These companies exist to help keep people out of hospitals. Medicare figures it will be way cheaper in the long run to keep you healthy (or as healthy as you can be) than it would be if you were hospitalized. They are, of course, right in this assumption. In order for him to be recertified, he has to show a medical need for them being here. Alzheimer’s isn’t a valid reason. The get ladies who come here to work with him have given him a new lease on life. The interaction with adults outside our household is such an important part of his mental health. In his eagerness to please, he does everything they ask him to. Unfortunately, on paper that means he is getting better physically so they may have to stop coming. If he were to get sick, fall or injure himself, he would instantly be recertified. See, we are stuck between a rock and a hard place. The last thing anyone wants, least of all me, is for him to get sick or injured. I don’t want that as much as I don’t want to lose the additional help with him.
I think there should be a new study done on “caregiver burnout”.

I would be interested in knowing how much money is spent on caregiver healthcare each year. What percentage of that is Medicaid (or Medicare) dollars? Could there be less money spent in this area by providing more services such as home health to help alleviate some of the stress that caregivers deal with? Stress can lead to physical illness. I can’t afford to get sick or more levels than you can even begin to imagine.

As time goes on with his illness, things will only get worse. It’s the nature of the disease. We will float on the fringes of the healthcare system. Sometimes we will have help and sometimes we won’t. This will continue until the day arrives where I have no option but to call in hospice. Then, we will finally have available help that will stay with his case until the end. Unfortunately, that’s the way the system works, you have to be dying to get as much help as you need. I am grateful for what Medicare does do. But, to be honest, I’m pissed off at what it doesn’t do.

It seems like the contributing factors to “caregiver burnout” are endless but I keep reminding myself that I wouldn’t like the alternative any better. Mostly, I’m just mad at the disease and what it does to everybody who is touched by it. Knowing that I have a RIGHT to feel the things I feel helps a lot. Knowing that I have a support system of friends and family who lift me up helps me keep going. Knowing I will survive? That is the key to not losing my mind completely.