Saturday, April 19, 2014

My Kryptonite

The more I talk to other wives who are in the position I'm in, the more I realize that the hardest thing about this life is having to have other people in your house to help your loved one.

We have been on such a roller-coaster this year with regard to home health aides. I can't even count the number of different people who have been in and out of our bedroom, bathroom and kitchen.

Some for just a day.

It's so unnatural to have someone else in your space. But it is necessary, or you just have to do it all yourself, and that's just not sustainable long-term. I've learned that.

But new people, working new or different hours, and taking on different things -- that's my kryptonite.

I've had a heck of a week with this.
At it's worst, it makes me not even want to be in my own home.
Like I don't belong there.

I know that sounds ridiculous. It looks ridiculous when I write it, but I seriously feel that way.

I don't like to be home when they're there. I feel uncomfortable. Like what am I supposed to be doing? I feel guilty. I feel lazy. I feel weird. So, I wait for an "all clear" text from my husband, then I come home.

What's been difficult about this week is that the roles have been muddy. I'm used to them taking care of his personal care needs and I'll take care of the cooking, for example. Well, we have to keep them around longer to give them more hours, so Michael is going to be taking on some of the cooking.

I should be thrilled about this, but here's the problem: they're here in the morning, but they can't come in the evening. So, I have to get him up in the evening. It's not a big deal. It takes like half an hour and doesn't involve much. The problem is, I have no clear role for myself and no clear expectation of the aide. Because they're helping with some of his personal care, and they're doing some cooking. And I'm doing some cooking and some of his personal care.

I feel lost.
Kryptonite got the best of me this week. That one thing won. I lost.
I don't want to go home, even when they're not there.

I don't know how this is going to get better. It's probably not. I'll just have to get used to it. Another new normal.

Want to know the craziest feeling I have? Jealousy. My favorite sin. That someone else gets five waking hours in my house. I'm pretty sure it takes me a few days to get that.

So much about this life isn't fair.
But this one thing really sucks.

What does make it better is space, and coffee, and chocolate, and writing about it.


bettyC said...

I didn't work so I was home all the time. It was awkward in the beginning. But it became another new normal. We each did our own thing. I don't believe in guilt so got over it quickly. We did enjoy it when the caregiver didn't come. US TIME 😊
I'm having a difficult time getting used to this new normal. It will be 6 months on May 2. I went from mommy and daddy's house to Bruce and my house. 55 years later I live alone.

L said...

I did homecare to support myself through college and graduate school. I then gave it up for a few years when I started teaching. One summer five years ago, I I needed some extra spending money so I decided to try home care again. I thought that I would quit the case I was working on at the end of summer, boy was I wrong, at that "job" I met my very best friend who eventually became my boyfriend. I continue to work on the 'case" every Friday and Saturday. So I've been on both sides of the picture, I've cared for someone's loved one and someone has cared for mine.

You may feel uncomfortable with someone in your home, but trust me, it is hard sometimes going to work in someone's home. I often felt I was in the way. The cases I have stayed the longest at were those of people who made me feel comfortable, like I was part of their family, not just working. you may want to find a little place in your home (if possible) where the aids can keep their belongings and sit so you are not in each others way during down time. You also have to remember that they are in your home to be Mikes hands and feet, so if he wasn't disabled he more than likely would be cooking some meals and doing some cleaning ...they are doing his part for him. One more thing, once you find a person who everyone in the family gets along with, you will not feel uncomfortable, it'll be like a friend who comes to hang out in your home for a few hours, sometimes it just takes time to find someone who is the right fit, when you do everything will be like second nature. C has two full time nurses who he gets along well with and they would do anything for him, including not calling out unless it is a true emergency, one has been with him for five and a half years, the other two years. Hopefully you will find your right match soon.

Unknown said...

Thank you for sharing in the midst of the kryptonite. It is such a rolling coaster of feelings being a caregiver. I am starting this process and looking into home health aide agencies. I work full time and my husband has MS but is not longer mobile. I am doing this by myself and I can't do it any longer or I'll get burnt out. There are so many agencies to choose from. I am going to start with a social worker and go from there. I pray you find an angel to help you who will stay and you all feel comfortable with. I pray for angel for us too.

Jaimie L. Moore said...

I sooooooo feel ya, sista. I hate hate hate (I know hate is a strong word) having nurses in our space all day, everyday. I'm trying to imagine a life with no nurses and how hard it would be on me. And that's why I try to deal with it the best I can. It's an everyday battl in my brain. I soooo feel ya.

Wish we could meet at Starbucks and talk about nurse annoyance while they were at the house and ya know, the reason we could be at Starbucks. Ha.

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