Thursday, October 23, 2008

The Bill of Rights for Caregivers

The following is a list of rights caregivers must have to remain strong and take care of themselves. All too often, caregivers forget that they need support just as much as the people they care for. This includes me.

A Caregiver's Bill of Rights

by Jo Horne

I have the right:

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

Recently, I forgot about this list, which is why I'm now completely exhausted. I forgot to ask for help, take breaks, and give my body the food and rest she needs. It's not surprising; parents of children with disabilities tend to devote their entire lives to caring for their children, even at the expense of their own health and well being. After 13 years and hundreds of hours of caregiver training, I know better, and yet I do it all the time. I get busy and focused on Queen Teen and slowly forget to take care of myself, only remembering that my body requires a certain amount of calories every day when I get the shakes and feel dizzy. Oh yeah, food. When did I last eat, I mean, some kind of food other than just a protein shake and a bottle of water?

Maybe one of these days I'll realize I'm falling into the old mother-of-a-child-with-special-needs, sacrificial trap before I get caught. For now, I can only give myself a good stern lecture, forgive myself for becoming a martyr, and find something really good and healthy to eat. Then tomorrow I can try to balance my own needs with the needs of my daughter and hope I figure this out a little better one day.

Or not. Has anyone managed to keep this all in balance?

Saturday, October 18, 2008

Depleted Mother Syndrome

Yes, it's real, and I'm pretty sure I have it.

Depleted Mother Syndrome is a serious problem that affects mothers of young children, especially toddlers. It's not postpartum depression or PMS, it's a condition created by the nonstop, 24/7 care of small children who require ALL of our time and attention. According to Rick Hanson, PHD, who coined the phrase Depleted Mother Syndrome in his book, "Mother Nurture," the causes of DMS are:

"... lack of sleep and exercise, poor diet, hormonal imbalances, nutrient loss, neurotransmitter deficiencies, guilt, anxiety, conflicting role expectations, marital conflict, and a breakdown of social supports. Its symptoms include chronic fatigue, susceptibility to illness, connective tissue problems including back pain and headaches, emotional numbing, depression, mood swings, irritability, hopelessness, confusion, running battles with husbands, and a turning inward away from friends and family."

Think about it. You've just given birth, a process that robs your body of vital nutrients to create another human being, and then you spend the next 4-5 years compulsively nurturing that child while getting little sleep and probably having another child during that same time.

Yes, I know my daughter is a teenager, and the syndrome is considered a condition of mothers with young children, but I think mothers of children with disabilities also suffer from depletion. We are still giving the same amount of energy and care to our children that we did when they were 2 and 3 years old. After several years of this, our bodies will begin to suffer. There is only so much a human being can do, and ultimately, mothers are still human.

I've been seeing my doctor to try and find some kind of medication to help get my anxiety level under control, but nothing is working. Every pill I take just makes me more agitated. And really, I don't feel depressed, not in an emotional way. I feel worn out, like my body is honestly running on empty and I'm coasting on what little is left in my bones. The problem is I have to keep going; I'm a mom and my daughter needs me. What can a mother do to care for herself when the demands of her child require super hero powers?

Time to change my plan of attack. Instead of looking at my exhaustion as something I need to medicate away, I need to look at what I give to myself and what is lacking. I had a physical so I know I'm not anemic or have anything like hypothyroidism, so what I really need is rest and good nutrition. Are there times in my day when I could put my feet up for a few minutes? Am I eating nutritious food, or just grabbing anything to stave off hunger? This is an opportunity to learn to nurture myself while also nurturing my child.

What kinds of things do you do to care for yourself? And do you think mothers of children with disabilities are just as depleted as new mothers, or do you have another theory? Send me your comments. I'd love to hear from you.

Tuesday, October 7, 2008

Still Recovering from our Make A Wish Trip

"The Tightrope Walker" by Jean-Louis Forain

It's been two weeks since our Make A Wish adventure and Queen Teen is still smiling from the joy and excitement of meeting Laurie Berkner. She and I put the photos in the album Make A Wish gave her and we talked about the trip. She giggled as she looked at the pictures of Laurie, especially the one I took during the concert when Laurie had a "pig on her head."

I wasn't prepared for the emotional hurricane the trip created two days after our return, though. The exhaustion from traveling and caring for Queen Teen alone in a hotel for four days hit me hard, followed immediately by the blues so deep I couldn't stop crying. Make A Wish is a marvelous gift, but I suddenly realized I didn't want it.

For over ten years I've understood that Queen Teen's yet-to-be-named condition is degenerative, but I've avoided the idea that it could kill her. We focus on the here and now. The future is unknown because her condition is unknown. Some people say not knowing the outcome is harder, but for me, I like not knowing because that leaves the future open. Anything is possible, including Queen Teen's degeneration plateauing with no further damage to her cerebellum. Her neurologist explained that could happen and he's admitted that he really doesn't know what the degeneration will mean in the long run. Fine, then lets just deal with today and live with joy and determination. I refuse to mourn my child while she's standing right next to me.

Qualifying for Make A Wish shattered my healthy denial, especially when I saw the look on people's faces when I told them Queen Teen's wish was being granted. Everyone looked at me with a frozen, startled smile as I explained her Make A Wish dream. They wanted to be happy for us, but at the same time I could see the questions in their eyes. Is Queen Teen dying? I had no idea! Why didn't you tell me?

Now I'm having to tell myself the same thing I wanted to tell them. No, Queen Teen isn't dying, but she is at risk. We don't know what will happen. So please, can we just focus on the FUN part of this trip?

I wonder how many other parents have the same reaction I did about Make A Wish? The gift is incredible and life-affirming, while at the same time frightening. Perhaps Make A Wish should include that in the info packets they give to the families before the trip. Now don't be surprised if you feel overwhelming grief at the same time you are excited for your child.

I'm feeling more centered and calmer now, but it took several days and a call to my therapist. I see him whenever I feel like I've lost my balance on this tightrope called raising a special needs child. Sometimes we all need someone to steady us so we can move forward, one cautious step at a time.