Sunday, February 28, 2010

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.


Isabella's Mommy and Daddy said...

hope everyone will obey your wishes..
Thinking of you ....

~Kristen said...

I have no words... as I could never pretend to be "in your shoes"... as no one else should either. As good intentioned as people are... It is overwhelming to the receiver, and it needs to be said... that too much is too much.

Continue to do what makes you both comfortable, everyone will learn to deal with that.

Love and hugs... and always Prayers.

AprilMay said...

I'm a wee bit angry on your behalf! :( If I were in your shoes, I would just want peace...just peace to breathe and be. I am praying for that for you and Michael!

Michele said...

I pray that you find the strength to hold your ground and I pray that those who wish to visit Michael understand that thier wishes (although I am sure full of love and desire to offer support) may not be what he needs right now. I have been on both sides of this journey...someone who was the caregiver for someone ill as well as someone who loved someone who was ill, but not the caregiver. It is a difficult balance for all sides. You are doing a great job! Keep it up and consider getting someone in during the overnights a couple of times per week so that you can get some sleep. You need to keep your strength up too.

fuzzandfuzzlet said...

I hope you get the support that you need most right now, that being that the people around you respect your needs.

What about using your answering service to your advantage. Leave a daily update along with a message about visitors.

Something like this. "Today is Monday, March the first. Michael is doing well but still very tired from the medication. For that reason we are not accepting visitors today, Michael would love to hear your voice, please leave him a message"

Leigh said...

I love the previous idea...leaving an outgoing message on your phone such as the one posted and also writing a sign for your door saying something to the effect of "If you have not previously set up a visiting time with me, please come back after you have done so. Michael is very weak and needs his rest. We appreciate your visit but it must be done on a scheduled basis. Thanks for your understanding." Perhaps some of these people aren't reading your blog. Maybe you might think about posting some of your requests on the door as well. I know as an ICU nurse, we left notes all the time on patients doors. And ... as an ICU nurse .. I completely understand how draining visits can be on a patient. Even if they want to see that person, more than ten minutes it's just too much. And definitely no more than two visitors at a time. I think people genuinely mean well, they just don't understand how draining it is on Michael or you!

Keeping you in my thoughts and prayers! May you get the peace and rest you both need!

Kris said...

i've just finished reading the last 5 posts. wow joannah. this cross is heavy, but i know it will bring you and michael closer to one another in new ways, unexpected ways.

you continue to be very, very close in my thoughts and prayers.

Windus said...

"This too shall pass"
When life is too much to handle, I close my eyes and focus on this to get me through.
You are in my prayers!

Sniffles and Smiles said...

Even though I have been on a blogging break, I have not ceased praying for you and have both been much on my heart...and will be!!! I promise!!! Sending you much love!!!! Janine XO

Anonymous said...

Continued prayers for Michael and you. I am super proud of how you articulate your needs/Michael's needs and set the boundaries. You are his wife, best friend, and his greatest advocate. I pray those who live near you will respect your boundaries. Staying strong in prayers for you!

J&L said...

As someone who really has only watched from afar, but who has lived it.

Do what you feel is right with no regrets. You are doing what is right for you and Michael. He needs you. You know what he can handle. Protecting him from too much is what you are supposed to do.

Your faith is amazing. Hang in there praying for you guys.

Glad the finger is better.

Jenny said...

Joannah, I am praying for you daily my friend. I am sorry that on top of everything- you are having to handle more. You know what is right for you and Michael. Try and rest when you can. And know that you have prayers holding you. Much love sent to you and your sweet husband.

Carolyn said...

I have included Michael and you in my prayers, and while we don't know each other, I have been priviledged to learn some about Michael through your blog and Facebook.

I went through a similar journey last year as a caregiver. I was so lucky when I had friends who could come over and be with my partner while I took a break. I just told them when I wanted to talk, and when I didn't.

Perhaps you could share your post from today on Facebook. I also think the idea for a voice message is a nice one. Another suggestion is a Caring Bridge site. You could post your updates each day on that, and send out the first post via email so all your friends and family can sign up to receive your updates. That was really helpful to us.

Again, may the power of God's healing surround Michael and you with love, light and peace.

Calico Sky said...

Oh Joannah, I'm so sorry you're having to deal with these challenges! I do hope people begin to understand that you really know best and give you the time and space you need.

Lots of love & hugs!!