Thursday, August 27, 2009

Are you taking care of yourself?

Caregivers are doing a great job of taking care of their loved ones. They are healthy, happy and often at home. But, do caregivers ever take a moment to consider themselves?

I came across this article via a Tweet this week. It begins with one key fact:  "One quarter of adult Americans are presently caring for an aging parent or relative."  Forty-five percent of those people are providing care for their spouse.

Several years ago, I was a caregiver trying to balance managing care for my husband Jimmy in a nursing home setting and our lives. I was exhausted and I was not providing the direct, round-the-clock care. When the health care professionals did their jobs, it was a little easier. When there were hiccups, chaos ensued. 

I won't rehash the article, you can find it at this link. Two key points from a Home Instead Senior Care survey shows 31 percent of family caregivers admit they'd like more help and 25 percent resent other members of the family who don't help out more. 

It's difficult to ask for help. We've all been raised in this can-do society. We tend to be judged by how brave we are in the face of tragedy. At the time, I did the best job that I could. Looking back, however, I'll admit I said, "I'm fine" during situations that were far from it. 

I never liked asking for help, but when it came to Jimmy I developed the ability to do it and accept the help. When my co-workers and the community pulled together to raise money for Jimmy, I accepted the help. Jimmy needed specialized computers to communicate and an air mattress that insurance would not pay for. 

When nursing home staff commented on his nice mattress, I would do my best Price as Right showcase, model impersonation and say, "That's about 250 barbecue sandwiches." All of those sandwiches purchased at a benefit for Jimmy were made with love. People wanted to help him and I'm proud they did. 

And, that mattress kept his skin free of bedsores for several years. 

One thing I found out very early on in my journey is that I was not alone. Of course, Jimmy was there with me, but I wasn't alone in being a caregiver. There were others, who were just like me. Perhaps their loved one was older, but we were all in the same boat together. 

A health crisis is a powerful equalizer. A stroke can strike a rich family as easily and quickly as it can strike a poor family. Family dynamics are often the same whether you have money or you don't. 

When I first began this blog several months ago, I tried to explain the name "Get Your Oxygen First." It's important for caregivers to take care of themselves. 

A few ways you can "Get Your Oxygen First" include:
  • Ask a friend to stay with your spouse or parent, so you can take a nap or recharge. 
  • Get a sibling to come over 30 minutes early, so you can take a break. 
  • Steal a few moments for yourself to do something like sit on the porch or read a chapter of a book. 
  • Remember most people really mean it when they offer to help. Maybe you don't need his or her help right now, but ask them later when you do need it.
Do something for yourself — even if it's unconventional. In my case, Jimmy often resented my efforts to revitalize. I had to charge through his angry in order to recharge. At the end of the day, he benefited from my efforts to take care of myself. He was happier and so was I. 

What are you doing to take care of yourself?

Monday, August 17, 2009

First impression left me squirrelly

My mom recently had neck and back surgery. She survived the nine-hour long surgery, despite her best efforts to conjure up every negative scenario. 

Her first comments following the removal of the ventilator:  "I made it didn't I." Mom really isn't a "glass half full" kind of gal. She was before the surgery — even if it was just for show. 

She didn't appear too brave when on day five post-surgery she was readying for an ambulance transport about 100 miles away from the Atlanta-based hospital to a swing bed in her hometown of Ellijay. The move offered rehabilitation before she returned home. It was something discussed prior to the surgery. 

While some other family members grimaced when we mentioned the need for rehab before going home, our family was pleased with the situation. Mom's ability to move had deteriorated seriously over the last year. After the surgery, she wasn't trying to reach her pre-surgery self. She was trying to regain her movement from more than six months ago.

Mom moved beautifully following her surgery. While she suffered from tremendous pain, it amazed us to see how she could picked up her knees as she walked slowly with a walker. Prior to the surgery, she had to drag her numb legs.

With some movement under her physical therapy belt, the hospital was ready for Mom to move. An ambulance from the Atlanta area arrived to transport her. The young woman, who was driving my mom, really laughed and joked a lot. It did not make my mother at ease. Instead, her nervous nature kicked into overdrive. 

As my mom asked the young woman, if she knew how to get to Ellijay. The EMT (or paramedic— not certain of her classification) recalled how she was able to navigate the windy mountain roads. Mom's eyes appeared to get as large as saucers. When I alerted the driver that Mom was anxious and didn't like jokes, the driver seemed to get it. "I'll check with the nurse about getting you something for that."

Mom took her Valium and quizzed the young woman about her experience. "I've been doing this for a long time — three years." Her declaration of expertise didn't appease Mom. 

"Oh, don't worry, we have nanny cams. We won't be stopping at the McDonald's drive thru window," the one driving continued to joke. 

As Dad and I entered the elevator with Mom, I talked to the woman who would be riding with Mom. "Mom doesn't handle jokes so well," I told her. "She's anxious about the drive."

The female driver said, "Don't worry. That will kick in." She was referring to the Valium. Then, she proceeded to tell us about how she was on Zoloft to knock off the edge. "It makes me less squirrelly." Mentally, my mouth dropped to the first floor before the elevator doors opened. It didn't seem like an inappropriate thing to tell your patient. It was inappropriate.

If I had serious doubts about the abilities of the two young women, I wouldn't have allowed my mother to travel with them to Ellijay. I asked Dad to pass the ambulance, because it made me nervous to travel that close to the ambulance. I prayed Mom would be OK. 

Mom made it fine to Ellijay. She reported a good ride and said the woman riding in the back of the ambulance with her stayed with her until she moved to another spot to complete paperwork. The only oversight was the attempt to drop Mom off at the nursing home and not the hospital. The nursing home (without any empty beds) quickly directed the ladies to the correct place — the hospital. 

The two women didn't leave an overall good impression. As a family member, I was concerned about their professionalism. It wasn't their age. It was their attitude. Despite being warned they were transporting an anxious patient, they didn't stop their joking behavior. With age, they will hopefully learn how to deal with this better.

Tuesday, August 4, 2009

A plethora of options

My mom's having neck and back surgery on Friday. I'm the "out of the loop" child since I'm more than 1,200 miles away from the family. I'll arrive in Georgia on Thursday afternoon and will hopefully get to see Mom before the surgeon does. Otherwise, she'll know we're in the same state, city and time zone.

Trying to help out, I thought about creating a site for Mom on the www.caringbridge.com Web site. I had heard about it. I found people with Locked-in Syndrome on the site. It's a great way to create a free site to allow friends and well wishers to check in on your progress during and after a surgery.

I was excited about the site until I noticed that on the right-hand side of the screen is a place to donate to Caring Bridge. I have never noticed this while looking for updates for other people, but it stopped me in my tracks while creating my mom's site.

My problem with it? Well, I feared people would think that my family is seeking donations for my mom. I worried (a trait directly passed down from my mother) that people might mistakenly make a donation to Caring Bridge thinking it was for my mother. I understand why Caring Bridge seeks donations. It is a fabulous site.

I created the site and passed it along to my Mom and Dad for their perusal. I added a note about the donation function. They also did not like this.

I couldn't figure out how to remove the donation material, so I deactivated the site for my mom.

I wanted to use the Caring Bridge site, because it seemed like an easy way to keep everyone updated. Now, we'll regroup using phones, e-mail and Facebook to update friends and family about Mom's progress. We fortunately have a variety of ways to keep in touch with people. We can do all of this from our iPhones, too.

I will continue to use the Caring Bridge to keep up with people. I think it's a wonderful site. It just wasn't right for my family this time.

How do you stay in touch with people after a surgery or illness? Do you know of any sites I should check out?