Donna,

I'm so sorry you've been having such a rough time of things.

For so long, I felt like we were on similar timeframes with our loved ones and in this together. You were my caregiver "partner in crime" so to speak. The person I could call and explain how I was feeling; someone I could rant and rave with when things weren't going well and someone I could share in the joy with when things were getting better.

Although we have never met in person, you feel like a sister to me and an incredible friend!

I felt a twinge of guilt that Dan has come so far when I read your posting. I know Dan could not have handled the brachy treatment that your mom endured. He was at such a low point at the end of his radiation treatments. I am sure healing from the surgery and brachy after Erbitux and RT is an intense experience.

All I can tell you is that there will be a day when more good things happen than bad. And, then each day will get better and better!

In the meantime, I will keep praying for you!

I have a friend who has been the fulltime caregiver for his dad for almost 2 years. He recently hired someone to come in for four hours a day (not a trained RN or hospice care...as those skills aren't needed in his situation during the time this person is with his dad).

His dad doesn't like the new arrangement, and my friend feels guilty. However, this is a fairly new development and they are both adapting.

My friend knows there is no one who can replace his level of care and compassion. However, the person he hired is competent and trustworthy. And, the arrangement has allowed my friend to work again part time and reconnect with a world he had put on hold. As a result, he now has more energy to deal with the remaining 20 hours of each day with his dad.

He's slowly getting over the guilt as he strives to achieve balance in his life. As you know, taking care of someone you love full time takes a huge emotional toll.

For me, that manifested in a variety of ways...fatigue, impatience with the kids, anxiety, depression, guilt for being short with the kids. To be honest, I don't know that I could have gone on like I was for many more months. Although, when I was in the midst of it, I didn't think beyond each minute of each hour of each day.

Do you think you could consider hiring someone for a few hours per day as an option?

Please call if you need a sympathetic ear. It's hard balancing parenting and caregiving. I wish I lived closer, I'd love to come over and hang out with Rose for an afternoon! And, I'd shoo you away...to a spa with your girls. Sammy and I did that in March (before the ^&*% hit the fan). We got facials together, it was a blast...both relaxing and a fun mom-daughter time.

You know, one other thing that helped me is the blog I kept about Dan. Right now the blog is down as it pains me to look at it.

But, while we were going through everything, I took pics and posted about our days often. And, when I felt like he wasn't making progress, I'd look back at what I had written weeks earlier and be amazed that he was indeed making progress by leaps and bounds.

And, as you know, the pics from August to now show a miraculous recovery. Maybe a blog would be a good thing to do. I never did one before and I found it quite easy. I'd be happy to help you start one.

And, it became a family affair as the kids were always quite interested in which pics I'd post and what I wrote about them. They were always full of ideas they wanted me to share because, although it was geared around Dan, I covered everything that was going on in our family.

I think the counter indicated family and friends hit the blog over 3000 times. So, I was never lacking in help when I needed it. As I was quite open about the stress of the situation and when I was near a breaking point.

I also used the blog as a tool to prove to Dan that he was getting better when he was feeling down. Because at his worst, he was so medicated he did not really know all that was going on.

And, even though I don't have it posted on line currently, it's all archived. So, if I did any harm by being a mom that appeared to be in a constant state of PMS all summer and fall...my kids will have a narrative to provide their therapist in their adult years. wink

Sending lots of good thoughts your way!


Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.