|
|
My wife, Virginia, was diagnosed with ALS in 1997. She’s now lost 80 percent to 90 percent of her mobility and uses a power wheelchair to move about. As a family we continually adjust our lives to make life work for all of us. I resigned from a corporate management position to become an independent manufacturer’s agent. This enables me to work out of my home and have more flexibility in the time that I need to take care of my wife. On occasion I have overnight travel for business so it’s fortunate that I also have plenty of help from other members of our family. When our son, Michael, learned about his mother’s condition he moved back to Massachusetts from Jacksonville, Fla. He eventually began to work for me, which meant that he could help take care of his mom. Michael has become a pretty good cook as well as a sensitive and loving caregiver. Our daughter, Ellen, dropped out of night school and changed her workday hours to an evening schedule. She drives an hour every morning before work to help her mom begin her daily routine. To this day I can’t figure what’s going on with all the laughter and good time noise that takes place while Ellen is bathing and dressing her mom. Friendly TownPart of our routine, weather permitting, is to accompany Virginia for walks in her power chair with one of us tagging along trying to keep up with her. Wilbraham, a town in western Massachusetts (known locally as the home of Friendly’s ice cream), is where we call home. Our neighborhood has safe residential side streets for Virginia to travel around, which she sometimes does alone when she escapes from our care. We’re a mile from the center of town, and along the main road a paved walk heads to Main Street. There are five side streets that intersect the sidewalk. The walk has curbs that weren’t ramped at the intersecting streets so they were difficult for any wheeled vehicle to maneuver. But Virginia wanted to travel to the center of town. Last summer the town began paving the main road. On a whim, I called the town’s engineering department and asked about the possibility of installing ramps on the sidewalks for easier access while the street paving was in progress. Donna Daviau, a polite and empathetic town hall secretary, said she’d look into it. She acknowledged that, like most every other town, Wilbraham was facing tight financial times and she didn’t know if anything could be done. All the Way, Of CourseThat same day Ed Miga and Tonya Basch from the town engineering office drove to our neighborhood to survey the situation. Coincidentally, they met my wife in her power chair a street over from our house. They chatted for a while and then asked Virginia: If it were possible to do the ramps, how far up the road toward town would she like to have them put in? She replied, "All the way, of course." Miga smiled and said he’d look into it. After about two weeks, they finished the paving, but nothing had been
started with the walks. Who’s Happy?A while later, on my way home from a particularly uneventful business trip, I turned onto the road leading to our street. To my surprise there were town workers digging out the asphalt sidewalk curbs and pouring concrete ramps, all the way to the center of town. Shortly after, I called the town office and thanked them for their fast and compassionate response. I went on to say that it was a beautiful sunny day when the yellow caution tape was removed from the walk. That’s when Virginia and I headed out to visit the local fruit farm on Main Street to have lunch and explore the center of town. On the way back, we began to discuss our home, our family and friends, and how fortunate we were in so many aspects of our life. It seems that many people don’t count their blessings and complain about personal disappointments or the way their lives have turned out. I rhetorically asked, "Who claims to be really happy anyway?" Virginia turned her head, looked at me straight on and replied, "I am."
THANKS FOR LEG STORYDear Editor:I have just read your article "Don't Let Leg Swelling Go Untreated" (February), and it was a revelation to me. While I don’t have full-blown ALS I have a close relative — primary lateral sclerosis. My condition started in the legs and thus far has been largely confined to the legs, which have slowly become dysfunctional. I was diagnosed in 1994. For several years now I’ve been having trouble with my right foot. Several doctors have attempted to treat it for infections, fungus, etc., but nothing seemed to make a permanent impact. I also have type 2 diabetes, which might be contributing its share to my problems. After reading your essay I began to see the possibility of my PLS being a major contributor. None of the general practitioners knows the first thing about PLS. Thank you for your helpful article on the subject of leg swelling. Jim Parry TOP
|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
 |
|
Valerie
Cwik |
|
Uncomfortable though it may be, doctors strongly recommend knowing what treatments you would accept or reject in a medical emergency, and discussing your preferences with your loved ones and medical team.
Drafting a living will and appointing a health care agent by means of a medical power of attorney can help ensure that your wishes are followed if you become seriously ill and unable to communicate them yourself.
Most people with ALS stay conscious and able to communicate to the end, but this isn’t always the case, says MDA Medical Director Valerie Cwik. Thinking through the possibilities and leaving instructions is a way to stay in control of your medical care and your life.
"Talking about these things earlier rather than later is so important. These are not easy issues to discuss, and family members may be in denial and not want to hear it," says Cwik, a neurologist who was director of the MDA/ALS Center at the University of Arizona in Tucson.
"But the last thing we as medical professionals want to do is something that is against the patient’s wishes — either too much or too little."
The Tough Questions
A big question in ALS is whether to use mechanical ventilation when the diaphragm and other muscles required for breathing have weakened. Sometimes this decision is forced by a sudden respiratory crisis. When a patient doesn’t have enough breath to speak, it’s helpful if his or her wishes can be voiced by a significant other.
Other issues to consider are artificial nutrition and hydration, cardiopulmonary resuscitation (CPR), IV fluids and antibiotics. If a ventilator or feeding tube already is in place, under what circumstances might you want it removed?
Talk with your ALS doctor about emergency treatment options, as well as the types of emergencies that might arise at various stage in ALS.
"For example, in the early stages of ALS a patient having a heart attack might want to be resuscitated, but later on in the disease, no," Cwik says.
Equally as important as gathering medical information is taking stock of your values and beliefs. These subjects should be discussed with the people who’ll be helping with your care. (See "Making Your Wishes Known.")
Make It Legal
To ensure you get your way and to take the burden off caregivers, you can create advance directives — instructions about your care and designation of a decision maker.
As long as you’re making your own medical decisions, your advance directives are unused and you can accept or refuse any medical treatment, regardless of what you’ve indicated in the directives. But if you become unable to make decisions, the directives will provide a road map for others.
Two forms of advance directives are a living will (also called a directive to physicians or medical directive) and a medical power of attorney (sometimes called a durable power of attorney for health care or a health proxy).
Wills and Agents
Anyone who’s been in the hospital recently has been given a living will — a standard checkoff sheet listing treatment options you’d accept or reject. A living will can be this simple, or as specific as you want.
Usually, the immediate next of kin has the right to make medical decisions when a loved one is incapacitated. But there are reasons to legally designate a decision maker. For example, if your adult children might disagree or if you don’t have a competent next of kin, or if your decisions may change over time based on your health and circumstances, it’s useful to confer a medical power of attorney.
This means naming someone you trust (called a health care agent), who knows your wishes and is willing to make tough medical decisions. This person would make decisions when a doctor has certified in writing that you’re unable to do so.
You may cancel a medical power of attorney at any time, based on your state’s guidelines.
Do You Need Both?
Having a living will and designated decision maker(s) gives you structure and the flexibility to adapt to changing circumstances.
A living will provides the basic blueprint of your wishes, which your health care agent can flexibly apply to the specific situation. Is it early or late in the disease? What will be the quality of life after receiving the treatment in question? How do other recent events color the decision?
If the circumstances warrant, a trusted agent with medical power of attorney can override your living will decisions. By contrast, a next of kin without medical power of attorney must abide by your living will, although he or she could make decisions about things not covered by the will.
Do You Need a Lawyer?
 |
An attorney isn’t necessary to execute advance directives. Forms are available at hospitals, doctors’ offices, or through state health, medical or bar associations. They’re also available online or in bookstores.
States usually honor out-of-state advance directives but if you regularly spend time elsewhere, fill out the forms for that location as well. Have documents notarized in the presence of two witnesses, neither of whom is named as health care agent.
See an attorney if you’re concerned that your directives might be challenged or if you’re worried about their legal effect.
Worth the Effort
The emergency room is no place to make life-or-death decisions or to guess what someone else would do. Although advance directives might never be used, there’s comfort and control in knowing you’re as prepared as possible.
"The decisions you make in a crisis situation are so different from the ones you make in a noncrisis setting," Cwik says. "We really encourage people to think and talk about these issues early on."
Chicago attorney Tim Halleron, who specializes in estates and trusts, provided guidance for this article. For information about setting up a nonmedical power of attorney, see "Plan Ahead for Disability," March.
Making Your Wishes Known
The following questions can help guide discussion. They’re from Partnership for Caring (www.partnershipforcaring.org; (800) 989-9455), which provides comprehensive information on advance directives and state-specific documents.
• How do you want to be treated at the end of your life?
• Are there treatments you want to receive or refuse?
• What are your concerns about these treatments?• What are you afraid might happen if you couldn’t make decisions yourself?
• What are your attitudes about health, ALS, dying, independence and control?
• What are your moral or religious convictions?
• What do phrases like "no heroic measures" or "dying with dignity" mean to you?
Discuss your directives with your physician. Doctors aren’t required to follow directives if they disagree for moral or ethical reasons. In that case, another doctor will be called in to follow your directives.
Make photocopies for physicians, health care agent(s) and all caregivers. Keep the originals in a safe place that’s easily accessible to your health care agent (not a safe deposit box).
TOP 
Michael deKruif: Enjoying the Ride
by Kathy Wechsler
 |
|
Michael
and Donna deKruif at the Blessing of the
Bikes at Crapo Park in Holly, Mich., last
year. The annual event is led by a motorcycle
ministry associated with deKruif’s
church, called HIM (HOGs in Ministry). |
|
There’s something about Michael deKruif of Waterford, Mich., that makes you want to be a better person. His difficult times only make him work harder to help improve the lives of people with terminal illnesses.
Since receiving a diagnosis of ALS in 2002, said deKruif, 51, his relationships with God, his family and friends have been strengthened.
Through Faith Baptist Church, deKruif got together with Shannon Veruink, a church member with multiple sclerosis, and developed Standing Strong, a support/Bible study group for people with terminal illnesses and their families and friends.
"The things that at one time you may have felt that they were important, you realize just how unimportant all that stuff is," deKruif said. "[ALS] makes you focus on what truly is important in life."
Changing Direction
In 2003, uncertain of how fast his disease would progress, deKruif had a "big pow-wow" with his family. They decided to close down their 7-year-old landscaping and excavating business, American Soil.
"One of the scariest things you can do is start a business," he said. "Then when it’s working, the next scariest thing is to shut it down."
Shortly after the last piece of landscaping equipment was sold, deKruif, who’d enjoyed riding motorcycles since he received his driver’s license and had owned a Harley-Davidson when he was 25, took a temporary job at ABC Harley-Davidson in Waterford. He worked as a prep and porter, washing, waxing and polishing the motorcycles and returning them to the service department after they’d been repaired.
"More than anything, the exercise was good for me and I met a lot of nice people and was involved in a couple of the fund-raising rides [for MDA]," deKruif said. He was losing some of his fine motor skills and his speech had become labored and slurred. He enjoyed his experience at the dealership until it ended in July.
Hog Heaven
A friend and coworker, Jim Hollingsworth, loaned deKruif and his wife of 25 years a Harley-Davidson Road King for a while last spring and summer.
"Donna and I felt like we were 15-year-old kids again," said deKruif, who refers to riding a motorcycle as "an exhilarating, uplifting experience."
The deKruifs visited the MDA summer camp in Lexington, Mich., an event that deKruif helped coordinate with Dick Rose of Motor City Harley-Davidson in Farmington. They brought in two motorcycles with sidecars to offer rides to the kids.
"We spent the whole day up there and had a wonderful time," deKruif recalled.
Wanting to give back to MDA for its guidance and support, deKruif has participated in five Lock-Ups and played the judge at the MDA fund-raiser. In February, the family participated in the MDA Family Walk in Auburn Hills, Mich. DeKruif is helping plan the second annual MDA/ALS fund-raising dinner, which will take place later this year in the Detroit area.
DeKruif is also speaking at an MDA fire fighter event this month.
During a profile for the local broadcast of the 2003 Jerry Lewis MDA Telethon, deKruif revealed his and Donna’s plans to buy a motor home and travel the country. The plan was put on hold when Donna was discovered to have breast cancer early this year.
"[MDA’s] like an extended family for my family and it’s been a blessing," said deKruif, who appreciates the fact that MDA staff members don’t treat him like "just a patient."
Finding What’s Important
 |
|
Jessica,
Donna, Michael and Justin deKruif at the
first Michigan MDA/ALS Division fund-raising
dinner at the Dearborn Inn in May 2003. |
Last year, deKruif started taking a cocktail of prescribed medications along with some herbal supplements. With the advice of his neurologist, David A. Simpson, he also rides a stationary bike and works out with weight resistance machines to combat the effects of ALS.
His efforts are helping build muscle mass, he said. DeKruif is interested in sharing his successes with other ALS patients and can be reached at (248) 682-6478.
"I have actually not gotten much worse than I was a year ago," he said. "If it’s helping me, maybe it could help someone else, especially as devastating as I’ve seen this disease be to the families of people who get it."
|
||||||||||||
