Staying Healthy in Order to Continue Caregiving

February 25, 2010

Twenty-four years of providing care – the stress, the physical demands – have taken a toll on my body. I am becoming increasingly well acquainted with MRI’s, CAT scans, anti-inflammatories and antacids. I sleep with a heating pad right next to the bed and I’ve invested in a large cold pack that’s kept always ready in the freezer. The receptionist at the physical therapist’s office can recognize my voice now when I call. I know that the key to protecting my health and continuing to be able to provide Lauren’s care is exercise. If I don’t exercise I am going to lose the ability to do what I need to do very soon. My back and shoulders are not holding up to the lifting of a young woman who weighs only twenty pounds less than I do. Plus, I know that I feel better, generally, and my mood is brighter if I work out. The problem is finding the time to do it.

Sure, we have a treadmill in the house, some weights, and some workout videos. That eliminates finding the time to actually go to a gym. And, the treadmill allows for all weather workouts that are essential in the “wait a minute and the weather will change” climate of New Jersey. Mornings are already filled with getting Lauren up and ready for her day. If I workout after that and then get ready for my day, I’m probably looking at starting on my agenda for the day around noon. So, maybe afternoon would work better. Mmmmm, maybe not. It seems that I find it is much easier to make excuses in the afternoon. It seems the afternoon flies by and I end up being too busy, involved, tired, or dealing with whatever crisis arose that day.

What is the answer? I need to do this, not only for myself, but for Lauren. So, instead of planning on how to exercise this week, I decide to only plan one day ahead. One day at a time. How hard can that be? OK, the plan is that in the morning, (while my husband is on the treadmill) I will to do some yoga and lift some weights. Then I’ll get Lauren up and ready for her day. When the DSP comes, I’ll do twenty minutes on the treadmill. Then a shower and get dressed. I can do this.

OK, its 6:45am, the alarm goes off. I quickly brush my teeth and get in my workout gear. I get down on the floor in my first yoga pose and....”ehhhh”. No, no, no, not now! Yes now, Lauren decided to get up early. I get up and check on her. She wants to go to the bathroom. I get her up and take her in. While I’m waiting for her, I get down on the floor and stretch. I will refrain from calling it yoga because there is no harmony, balance or breath control happening here. I’m keeping one eye on Lauren and wondering why she’s up early, is she OK, is she cold, where’s her robe, etc. There is no experiencing Truth, the consciousness of Reality, or union with the Divine as yoga is defined by Swami Chidananda. No, wait, there is definitely reality here. The reality that exercise is not something you can multi-task.

I get Lauren dressed, into her wheelchair, and off to breakfast. She’s finishes eating and we’re actually running a bit early now so there’s a few minutes before the DSP will get here. I grab my hand weights and do a few quick reps in the living room while Lauren is amused by Good Morning America. This is just no way to workout. There is no focus, no relaxation, no “getting into the zone”. This piecemeal approach is not adding up to a decent workout. It seems that even “one day at a time” doesn’t work. I need strength training and aerobic exercise if I’m going to be able to care for Lauren. So, I guess the only approach I can take is “If at first you don’t succeed, try, try again.” And, if that doesn’t work I’ll try “Energy and persistence conquers all things.” And, I may have to resort to “Victory belongs to the most persevering.” And, when all else fails, “If at first you don’t succeed, redefine success.” I hope I don’t run out of inspirational sayings.

A Future with Developmental Disabilities – Rachel

February 23, 2010

In a previous post I said that I would be talking to other families about their visions of the future for their child with developmental disabilities. I spoke with Rachel’s Mom recently about the future of her twenty-four year old daughter.

On a scale from one to ten, with ten being total care and one being “I’m OK Mom, I can take care of myself.”, what is the level of care that Rachel will need? Rachel would be a ten.

Do you have a plan in place for Rachel when you are no longer able to provide care for her? “No”

What are your primary concerns for Rachel’s future? Rachel’s Mom’s main priority is that wherever she is, she will be safe. She wants Rachel to have caregivers who are “truly compassionate individuals who will treat her with love and respect.” She wants Rachel to be “well-taken care of” so that she can be “well-received by people.” Rachel’s Mom pointed out how personal care and hygiene can impact how an individual with a disability is accepted and treated by others.

Where would you like Rachel to live when she can no longer live with you? Rachel’s Mom would like to see her in a shared apartment with a roommate who is less physically involved. The shared apartment would be under the management of a provider.

Is there someone to oversee Rachel’s care when you no longer can? Rachel has a sister who would like to be involved in her care. Right now her sister lives out of state. Hopefully in the future she will be in a position to supervise Rachel’s care. Rachel’s Mom does not want Rachel’s sister to take on Rachel’s care full time.

Do you have an idea when you or Rachel will be ready or need for her to live on her own? Rachel is ready now to be independent. She has seen her twin go off on her own and understands the difference in their lives. Rachel’s Mom feels that it would be age appropriate for Rachel to be building a life for herself, the same as her other daughter. She also wants to be able to participate in Rachel’s transition to independence and worries that it will take so long for Rachel to get funding that she will no longer be in a position to do that.

What is your best hope for Rachel’s future? Rachel’s Mom would like to see Rachel in the shared apartment setting with a roommate and able live a fulfilling life involved in her community and able to enjoy the social activities that she loves.

Rachel’s Mom and I discussed the parent’s role in the development of any child, disabled or not. We are called on as parents to raise our children, teach them how to be the best that they can be, and then let them go to make a life for themselves. For young adults with developmental disabilities, Rachel’s Mom says that there is “nothing to let them go to”. With two daughters the same age she is all too aware of the opportunities one has and the opportunities that one doesn’t.

Communication Issues

February 18, 2010

Caring for a young woman with no formal communication skills and minimal alternative ability to express her feelings, wants, or problems is incredibly frustrating. It is probably the hardest when it is obvious that something is bothering her. You are clueless on what it is. Your child is unhappy and you cannot help her. You try. You study her environment, the people interacting with her, and you look in her eyes to see if pain lurks there. And, at some point, you get annoyed at her and then feel guilty. You get discouraged about working so hard to take care of her yet apparently failing. And, you get depressed. Her mood, in essence, becomes yours.

I have been going through that in the last few months with Lauren. Lauren had gotten increasingly irritable and unhappy. She was definitely not her usual happy self. It was hard to figure out what activity would make her happy...or at least content. Did she want to watch TV, listen to her mp3, listen to a CD??? We were constantly changing what she was doing to try and please her and that task was getting increasingly unsuccessful. This just wasn’t Lauren’s usual personality. If anything, she had always been a bit too passive.

Lauren takes two medications for seizures. Six months ago we switched to all extended release and she can now take them all at once instead of spread out over the day. This has been great because the one meal of the day that she rarely gives me any problem with is breakfast. So that’s when she takes the medication. If she’s had a seizure or isn’t feeling well for some reason she may refuse to eat her meal or snack, but that usually occurs later in the day for some reason. It was always a battle to get meds into her when she simply wouldn’t eat yet had to take that medication. The switch has gone well and she adjusted seamlessly. We do twice yearly blood work to check on the levels and effects of the seizures meds. The last blood work showed a high level of one of the meds. Follow up blood work confirmed that the level was too high. In discussion with her neurologist I learned that the extended release version of the drug may result in a higher blood level on the same dosage. So we decreased her dosage last week.

What a difference a week makes! Eureka, Lauren is happy again. Lauren has stopped her growling and complaining that was clearing the aisle of small children at the grocery store. At mass on Sunday – instead of having to take a walk outside because of her discontented vocalizations, we had to take a walk outside because she was laughing so much. I hope that Lauren continues in this gleeful disposition. She has to be enjoying life a lot more without whatever the effect the med was having that was making her so miserable. If she could only have told me...but, of course, if I only had a dollar for all the times I’ve said that. But, how I wish I could have spared both of us the aggravation and distress of the last few months. I hope that the decrease doesn’t affect her seizure control, tenuous as it is, but so far, so good. When Lauren was out shopping this week, a toddler reacted to Lauren’s tuneful humming by starting to dance in front of her. I guess she really can communicate!

A Future with Developmental Disabilities - Bryan

February 16, 2010

In a previous post I said that I would be talking to other families about their visions of the future for their child with developmental disabilities. I spoke with Bryan’s Mom last week about the future of her twenty-nine year old son. 

On a scale from one to ten, with ten being total care and one being “I’m OK Mom, I can take care of myself.”, what is the level of care that Bryan will need?  “He is definitely a ten”

Do you have a plan in place for Bryan when you are no longer able to provide care for him? “No”

What are your primary concerns for Bryan’s future? Bryan has extensive and complicated medical problems and his Mom is concerned about who will be able to provide not only the hands on care but the management of all of his needs when she no longer can.

Where would you like Bryan to live when he can no longer live with you?  If he could receive the appropriate level of care, Bryan’s Mom thinks that a group home may be appropriate. But, she would like to be able to oversee his care there at least initially in order to make sure he is well taken care of, but she worries that by the time he could get a placement in a group home she may be either dead or too ill to do that.

Is there someone to oversee Bryan’s care when you no longer can?  Bryan’s sisters could participate in making sure Bryan received the care he needs but she would not want them to take his care on full time. “They have families too.”

What is your best hope for Bryan’s future? Bryan’s Mom would like to keep him home as long as possible but he would need more funding so that she could get additional help to take care of him. When that is no longer doable a group home that could meet his medical needs would work and his sisters could watch over him.

Bryan's Mom went on to say that she is trying to meet all of Bryan's needs, work part-time, and help out with her grandchildren.  Bryan attends a day program a few days a week but is not up to being there for five full days.  His medical needs require medication, treatments, diet, and other physical interventions which take hours every day.  Bryan's Mom is concerned about the effects of the unending stress and life limitations that are taking a toll on her own well-being.  Like many other mothers of children with severe disabilities, she finds that there are days when she thinks she just can not "do this anymore".

Thank you to Bryan's Mom to sharing her fears and hopes about her son's future.    

Adaptive Skiing

February 11, 2010

It snowed all day yesterday, fine, white flakes blown sideways by blustery winds. As the storm ended and the skies cleared last night, I looked out across the valley at the constellation of lights that top the far mountain. They are not stars, but rather the lights of a ski resort celebrating the arrival of twelve inches of fresh powder. I am not a skier but Lauren was. Yes, Lauren used to ski. A friend teaches adaptive skiing at a ski resort about two hours from our home. She convinced a very reticent me to let Lauren give it a try about ten years ago. Lauren LOVED it. A popular program, we could only get two or three appointments for Lauren to ski each year but it was always well worth the trip. There are so few opportunities for recreation for Lauren that it was exciting to be able to give her this chance to do something so freeing and stimulating. Now diagnosed with osteoporosis caused by years of seizure drug use, we can no longer subject Lauren to the even minimal risk associated with adaptive skiing. So, her skiing days are over.

It was a real leap of faith for me to allow Lauren to try skiing. I don’t like heights, speed, or the cold. I was being asked to strap my totally dependent child into a sit ski and turn her over to two strangers. They would boost her up onto the ski lift, travel far atop a mountain where I could no longer see her, and then let her ski down a slope by steering her with two long straps. You have got to be kidding me. But, my husband (a skier) said, “You have to let her try.” One look at her face when she arrived back at the bottom of the hill told me everything I needed to know. She glowed.

We made many ski trips over the next few years. I was never able to stop fretting at the bottom of the hill, ready to check on her after every run, but she was always fine. I especially remember one day, the coldest ever. It was zero degrees. I was as worried as my cold-numbed brain would allow. I had every piece of warm, protective gear on the child that I could. Her face was totally covered by a mask and topped by a helmet. Afraid that she was uncomfortable or nearing frostbite, I removed the mittens from my freezing fingers so that I could raise her mask to check her expression. Only a brilliant smile lurked beneath. She wasn’t cold – just having a blast.

The program we attended was run by the Adaptive Sports Foundation based at Windham Mountain in New York State. ( They run programs in many sports throughout the year. You can also find out more about their skiing program at If you want to learn about the availability of adaptive skiing in many parts of the world check out the SkiCentral website at

Lauren’s success in participating in skiing was due in no small part to the amazing, and well-trained volunteers who make this program possible. They give up much of their personal time to become trained and make  skiing accessible for individuals with disabilities. They allowed my child to feel the joy and exhiliration of flying down the side of mountain and helped allay my fears so that I did not hold Lauren back. They were caring and so very kind. I would often see them leaning over to wipe Lauren’s wet chin, with the extra bandanas they had stuffed into their pockets, as the ski lift crawled up the mountain. Though I may have preferred they traverse the mountain at a speed more suitable to Lauren’s beloved Mr. Turtle, Lauren’s favorite instructors were the ones who fulfilled her desire for speed and mogul hopping.

On a day like yesterday, when we are curled up around the fire watching Mother Nature turn our world white, I am reminded of the snowy days of delight that skiing allowed Lauren to experience and saddened by the loss of an all too rare opportunity for her to escape a life limited by the places that two wheels can travel.

An Uncertain Future

February 8, 2010

Lauren’s future is the subject of an ongoing, inconclusive, worrying conversation that my husband and I have on, at least, a weekly basis. What will Lauren’s future look like? When will she need to be more independent from us? Who will oversee all the details of her life? Where will she live? Will there be enough funding to care for her for the rest of her life? We bat around ideas and scenarios. We discuss options and dreams. As of yet there are no concrete answers to these questions.

I’m sure families in similar circumstances to ours are asking the same questions. I wonder what ideas they are talking about. I wonder what they hope their child’s future will look like. I wonder if someone out there has found the answer to the same questions we have been asking. In the next few weeks, I’m going to talk to other families and see if they will share their thoughts about the future of their child. I’ll then report back to you here on what, not just my family, but what other families are looking for from themselves, their communities, and their government when it comes to meeting the expectations they have for the years to come.

So check back with me over the next few weeks to see what families are thinking about. If you’d like to tell me about your family, please let me know by sending me your contact info at I’ll get back to you with the questions I’m going to be asking families. I’m excited to hear what everyone has to say.

An Outing with Lauren

February 5, 2010

Her Name is Lauren

Hello cutie, shopping with Mom today?
Oh...she doesn’t talk.

Why’s that girl in a wheelchair, Dad?
Oh...she doesn’t walk.

Why is she making that noise?
What are those things on her legs?
Why is she rocking like that?
I wonder,
          What is her name?

Her name is Lauren.

Her sparkling eyes see you, I think.
Her cherry lips have never formed words.
Her coltish legs don’t know how to dance.
Her slim body rocks to a tune only she hears.

Her name is Lauren.

What’s she listening to on those headphones?
Oh...I like country, too.

Lauren, do you like shopping at the mall? that smile a clue?

Sleep Deprivation

February 2, 2010

I think about sleep alot. I think about it alot, I just don’t do it alot. Many parents of children with developmental disabiities complain about the sleep deprivation involved in caring for our sons and daughters. Lauren will go for a period of time when between 10pm and 7am I don’t hear a peep out of her. We’ve slept with a monitor in our room every day of her life. Then she will have a week or two where she’s very restless, moving around, knocking into the side of the bed. When she’s like that you can’t really sleep well because you’re constantly alert making sure that the sounds you’re hearing are just her tossing and turning and not a seizure. Then there are the nights when she just doesn’t want to sleep. The other night she wanted up at 1 a.m.  She was quite happy and full of energy until I finally convinced her at four a.m. that she needed to go back to sleep. The next night she had a seizure at five a.m. and took awhile to settle back down. By the time she gets back into a regular sleep schedule, my sleep schedule is trashed. So, the end result is that the quantity and quality of sleep I get is not sufficient.

What is the effect of sleep deprivation on the brain and the body?  Todd Maddox, a psychology professor at the Institute for Neuroscinece at the University of Texas in Austin states that, “The brain regions that are impaired when you are sleep-deprived are the same ones that are impaired with aging," That must be why I stand in front of the pantry with no idea why I need to be there in the first place. And, I just love sitting in a meeting waiting to share some pearl of wisdom while another speaker finishes their statement, only to forget it by the time they’re done. I do know that when I manage to get a decent night's sleep my mood is much brighter the next day. I don’t think it's simply a lack of fatigue or a renewal of energy.  I seem more optimistic, less reactionary, less anxious. Professor Maddox explains that when you are sleep-deprived you overthink things, and when you do that you are actually using the part of your brain most affected by the lack of sleep.  So you are not only overthinking things, you are doing a really bad job of it.

Research shows that sleep deprivation results in attentional lapses, reduced short-term memory capacity, and impaired judgement. Prolonged sleep deprivation can lead to serious mental symptoms and threaten public and personal safety. Studies also show that sleep deprivation puts us at higher risk for a number of health issues such as high blood pressure, heart attack, stroke and obesity. As a society we have all been at risk since the advent of the lightbulb around 1910 which resulted in people sleeping five hundred hours less a year than they did before. As parents of children with developmental disabilities we rarely get an opporunity or ever have the option of “catching up” on our sleep. I know of one family with a son who sleeps three to five hours a night and screams throughout his waking hours. The dad gets up with his son, so that his wife can sleep in order that she can get through her day with the boy, then Dad goes off to work. How long can a family be expected to function like that?

After 24 years of sleepless nights I know first hand that it wears you down. I think we need to take sleep or rather the lack of it seriously, and realize how much it is affecting our ability to function, our moods, and our health. Just as we pop our vitamins in the morning and watch our diets, we need to take whatever actions necessary to try to alleviate the affect that sleep deprivation has on our well-being. I’m not sure if that is possible, but I’m going to take my first step right now. I’m going to take a nap.