Out of Control

Something you can't really understand until you experience what we're experiencing is how very little control you have over your own life. Life as we once knew it has come to a screeching halt, and we are now on someone or something else's timeline. There's a huge loss of freedom for both of us.

I don't write this to solicit sympathy, but more so to help some understand why I try to establish the boundaries I do, and why it's essential that my boundaries be respected.

Because Michael is so weak, he can do very little for himself. That's why I've taken a leave of absence from work - he requires care 24/7. It's not just so I can be here with him and hang out with him. Around the clock I help him with the most basic of tasks. I don't want to elaborate on that out of respect for his dignity, but you can read between the lines. Throughout the night I am called on for reassurance or physical help approximately six times. This has reduced my sustained sleep to a maximum of about two hours at a time, and once I'm up it's not always easy to fall back to sleep. During the day, I have to manage his medication schedule, persuade him to eat, make him comfortable, etc. It's a full-time job. We do have our moms to help out, but most of the physically challenging stuff is up to me. I just had a massage on Wednesday and my lower back is already sore again.

Then there's the constant comings and goings of home health aides, Michael's nurse, family, and friends. I think we must have had more than twenty visits during the last week. I have tried to allow as many people to come and see Michael as possible, but we have reached critical mass in my opinion. What's really troubling me at this time is unexpected visitors. Please call our home number and talk to me to see if it's a good time for a visit, and please don't take offense if I say no. Please don't just show up or tag along with another group coming by. It's not that we don't love you or want to see you, it's that we're exhausted and your visit drains what precious little energy we have.

Being Michael's full-time caregiver is a privilege and a joy for me. I'm thankful that I'm in the position I am to stay home with him and give him my tender loving care. But, it's not easy - not at all. I'd just like to be better understood and shown a little more consideration.

Key points:

• Call me first at least a couple days ahead of time.
• Be flexible - your visit might be postponed if we've had a bad night or we're having a bad day.
• Come in groups of no more than two at a time.
• Limit your time with Michael to ten minutes.
• Don't be offended if I don't sit down and visit with you. I'm probably just too tired to do so.

One more thing to be aware of is that Michael does not talk on the phone anymore, and he rarely gets on the computer. It's best if you contact us on our home phone number instead of his cell phone, and please don't email anything you don't want me to read. I've seen some interesting things lately. :P

Okay, I'm going to leave it at that.