Several years ago I had the opportunity to care for Liz, a young woman who was in her early 40’s and had been diagnosed with MS (Multiple Sclerosis) for several years. Her disease had advanced to the point that she required a wheelchair for mobility and she saw her independence slowly slipping away. Liz was not about to give in easily. She and her new neighbor, who was also wheelchair-dependent with a similar diagnosis, had bonded -- not over the fact that they both living with a progressive neurological diseases and limited in their mobility -- but rather the fact that they had both been bikers in their younger, wilder years. These “Harley Chicks” decked out their wheelchairs with Harley flags and donned their biker accessories while they cruised the neighborhood on shopping expeditions.
As caregivers, we often become busy with the day-to-day needs of our loved ones and forget the special qualities that made them unique as individuals to us and others. We need to remember what they enjoyed doing most in healthier times; was it flower gardening, listening to a baseball game with a cold beer or shopping at a favorite store even when they did not need a thing? Making time for these additional needs can be difficult when schedules are hectic but it is these very tasks that can bring great pleasure to those we love and a deep contentment to ourselves as caregivers.
As my father slowly recuperates, I have continued to learn and relearn many lessons in my role as a family and professional caregiver.
Dad had limited opportunity to learn the tasks that would be needed to care for his new stomas in the days following his surgery; circumstances in the environment also contributed to his frustration. Every time the appliances were to be changed a different nurse was assigned; the care was appropriately done but each had their own method of completing the task, manner of teaching and tidbits of advice. Different supplies were used in the sessions which contributed to the lack of continuity. Yet what was most upsetting for my father was that he was left lying flat on his back during the care; he listened carefully but he could not see what the nurse was doing and when he attempted to touch the involved areas was instructed not to do so. Dad asked them for a mirror so that he could observe but they did not have one available; we brought one from home for the next session.
When an individual is being taught a new skill they need to be fully present in the moment yet there are many things that can interfere-- fatigue, stress, pain, sedation, anesthesia after-effects, debility and positioning-- making focus and retention very difficult. Some solutions to these obstacles may be very easy to achieve.
The professional caregiver can control many of the distractions to learning. The family caregiver can incorporate these same simple practices if they will need to instruct others at a later time.
Create a private, calm and conducive environment; ask visitors or those not involved to step out of the room, pull the curtain or close the door, turn off radios and televisions, turn lights up and clear clutter.
Prepare and organize needed supplies to avoid having to interrupt the session repeatedly to obtain more equipment; utilize the less-is-more philosophy to avoid confusion and frustration for other caregivers.
Provide easy-to-understand written instructions with pictures or diagrams for review.
In medicine and nursing there is an old adage; “watch one, do one, teach one” when learning new skills; this method of teaching and learning is not only stressful it can be harmful. No one should be expected to master a new task without appropriate instruction and practice; observing and questioning contribute to success but the best teacher is most often hands-on training.
Many areas of the country are feeling the heat of summer paired with high humidity levels and this combination can result in a dangerous and deadly situation. The seriousness of this risk is heightened if the individual is a child, elderly, pregnant, obese or injured. Some medications--high blood pressure and water pills especially-- may intensify the threat. Healthy, athletic individuals can also be affected if the warning signs are ignored.
Heat exhaustion and heat stroke are both dangerous and can be life-threatening heat-related illnesses.
The signs of heat exhaustion include: heavy sweating, paleness, muscle cramps, tiredness, weakness, dizziness, headache, nausea, vomiting and fainting.
The best treatment includes drinking cool, nonalcoholic drinks, resting in an air conditioned environment and taking a cool shower or bath. If the individual cannot keep liquids down, they will need to be evaluated by a physician.
The signs of heat stroke include: fever above 103 degrees orally, red, hot dry skin, rapid strong pulse, throbbing headache, dizziness, nausea, confusion, seizures and loss of consciousness. Individuals who are bedridden and don't have access to water and are not in an air-conditioned area are at a very high-risk of developing heat stroke. This condition can lead to brain damage, organ failure and even death if not treated quickly.
The best treatment includes calling for assistance immediately, moving the individual to a shady or air conditioned area and begin to cool their bodies down rapidly. Do not give the individual fluids to drink. Do not give aspirin, acetaminophen or ibuprofen to lower fevers. Do not give salt tablets.
Following the expert’s advice can prevent heat-related tragedies:
Get cool and stay cool. Air-conditioning is the number one protective measure against heat-related illnesses and death. During times of extreme heat, if your home is not air-conditioned plan to spend time in locations with air-conditioning-- shopping malls, public libraries, movie theatres or heat-relief public shelters in your area--during the hottest times of the day. Electric fans can help to provide comfort but once the temperature soars above 90, fans alone will not prevent heat-related illnesses. Cool showers or cool sponge baths are another way to cool off. Listen to your local news and weather channels during extreme heat conditions for health and safety announcements and follow their advice.
Stay out of the sun. Outside work should be scheduled for early in the morning, late in the evening or in well-shaded areas. Pace your outdoor activities. Take frequent breaks in the shade or cool areas to allow your body to rest and recover.
Drink plenty of fluids. Do not wait until you are thirsty to begin to replace fluid loss. Cool, nonalcoholic beverages are needed to increase fluid intake regardless of activity level. A sport beverage can replace the salt and minerals lost from perspiration, alternate with a non-sodium rich beverage. Those individuals on a low-salt diet should contact the physician before drinking a sports beverage or taking salt tablets. If you or your loved one is prescribed fluid restrictions because of a medical condition, contact the physician for further advice. Alcohol or heavily sugared drinks actually increase the loss of body fluids. Extremely cold beverages may cause stomach cramps.
Dress down. Wear as little clothing as possible--lightweight, light-colored and loose fitting.
Travel smart. Never leave children, elderly individuals, those with disabilities and pets in parked cars for any length of time. Automobiles heat up very quickly and the temperatures can rise 20 degrees in 10 minutes. Always have fresh beverages available on your summertime journeys.
Check in on relatives and neighbors. The creation of a twice-a-day telephone or check-in buddy system with those who live alone and are more prone to heat-related problems is very crucial to the safety of loved ones and community members.
Over the last two weeks, I have observed many professional caregivers providing the much needed care that my father required after his surgery. I have also participated in his care while he was hospitalized and then discharged to home.
The first lesson I want to share with others is that when professional caregivers are talking to individuals and family members they need to always practice the simple task of presenting information in a clear, concise and easy-to-understand method. They need to reinforce their explanations and ask those involved to repeat the information to verify not only that the words were heard but also understood. There are other factors that should also be taken into account; do any of those involved have a hearing deficit or visual limitation-- many with even the most minor of hearing impairments have learned to lip read in order to better comprehend the conversations around them-- that could interfere with their understanding? Inform the staff and allow them to post the information-- usually as an over-the-bed sign-- near the individual. Language barriers may also exist between individuals and caregivers; asking for a medical interpreter for assistance may be needed. Pain medications and anesthesia have lingering effects especially for older individuals and can cloud perceptions; the same information may need to repeated several times over several days to be fully understood. No caregiver should ever assume that a nod of acknowledgement is an indication of comprehension.
Dad had his surgery on Friday and his surgeon reassured us that he had told Dad that they had to create another ostomy because there had been a hole in his bowel after they removed his bladder. I have no doubt that other healthcare providers had repeated the same information to him over the next day or two.
On Sunday afternoon, I was sitting quietly at his bedside as Dad alternated between napping and watching a baseball game. After several hours, he looked over at me and said softly; “Did you know that I had a hole in my bowel? They fixed it already.” It was at that very moment I realized he had not yet comprehended what had occurred. I explained to him that they had repaired the hole but in order to do so they had to make an another outside ostomy to divert the stool and allow the bowel to heal. “I have two openings now?” he replied as he tried to raise his head to look at his abdomen. I nodded yes. The crushed look on Dad’s face was extremely difficult to watch. I went on to explain that if everything healed as planned they would be able to reverse it in several months and close the second hole on his abdomen. Dad just closed his eyes and shook his head slowly.
Several days ago, our country lost an incredible pioneer as former first lady, Betty Ford died at the age of 93. Her roots deep in the Midwest and similar to so many others from that region gave her voice a plain-spoken frankness.
Just a few weeks after her family was thrust into the arms of the nation when her husband was sworn in as an unelected President and her boisterous, fun-loving family took residence in the White House; she was diagnosed with breast cancer. In the mid 1970’s the openness she demonstrated about her diagnosis, radical mastectomy and recovery was uncommon and elevated her to national heroine. She told of the experience of coming down the stairs at their first state dinner and thinking; “…they are all trying to remember if it was my left or right breast that was removed.”
The openness of her experience had another-- and unexpected-- effect that had not occurred to her: Women across the country began seeking checkups for breast cancer.
It was that same inner strength, determination, love of family, and desire to carry on despite adversities that gave her the courage to confront her addiction to alcohol and prescription drugs just a few years later. She remained strong as she faced the truth of her addiction and fought the stigma surrounding her health problems. The rehabilitation facility named for her -- The Betty Ford Center-- has gone on to successfully treat many other individuals suffering from any variety of addictions.
She was remembered at a memorial service in California today as a mother, first lady, friend and tireless advocate for those struggling. We are again left to imagine facing ‘secret’ diseases far too often hidden by shame and battled privately with so many eyes watching, having to cope with the fear, the doubts, the pain with every appearance, every decision scrutinized by the media and millions of people.
May she now rest in peace, victorious in her earthly battles.
The caregiving demands surrounding my parents have been the #1 priority over the last few days. As family caregivers can all attest the days have been full-- but meeting needs and addressing issues have made for an incredible professional and personal learning experience--this increased knowledge that can only come from a first-hand experience will be shared in the very near future.
"I need the ones I love Lord/More and more each day." --
From “A Better Place” by Glen Campbell
Grammy-winning singer and songwriter Glen Campbell and his wife, Kim, recently announced that he has Alzheimer’s disease. The couple chose to share his diagnosis because Glen is about to go on tour to promote his latest album and didn’t want fans to mistake any signs of forgetfulness or confusion with substance abuse.
Going public with a disease as fraught with fear and misunderstanding as Alzheimer’s takes real courage. We’ve seen similar public displays of courage before, as President Ronald Reagan and celebrities like Charlton Heston announced their diagnoses, using their announcements, in part, to make a statement of farewell from public life. We can admire their courage and understand their decision – better to “go public” than to have their privacy mercilessly invaded by prying tabloid reporters and photographers.
While Campbell chose a similar path, his decision feels different. He is not retiring from the public stage, but making an announcement prior to taking the public stage again. His family explains that music continues to be his gift and his great joy. He wants to perform; he wants to continue a public life as long as he can; he wants the support of family, friends, and fans.
Campbell offers us an example we may want to embrace. Today, an estimated 5.3 million Americans are thought to have Alzheimer’s. The Alzheimer’s Association tells us that every 70 seconds, another American is diagnosed; by mid-century, they expect the rate of diagnosis to accelerate to every 33 seconds. Most of those who are diagnosed hope to stay engaged with the people and activities they love for as long as possible, even as the initial symptoms increase in frequency and significance. Yet many who already suffer with the disease find that the most painful and significant deterioration they face is not the loss of memory or capability, but the loss of friends and social connection.
Given these statistics, perhaps it is time for each of us to consider how we might handle such a diagnosis. Would we choose to share it openly with friends, as we might share diagnoses like diabetes or cancer? Would we choose to explain that the slight forgetfulness or confusion is more than a senior moment and will continue and worsen? Might we choose to tell our friends that we will need them more now than ever to help us maintain a sense of social connection and normalcy for as long as possible?
The decision to “go public” is a personal decision, of course. Those of us who seek to share our diagnosis may find an amazing opportunity: to help de-stigmatize a frightening disease, to help others understand its progression and treatments. By choosing to share, we may actually help ourselves and others. New research has consistently shown that physical activity, mental stimulation, and social engagement help all people stay healthy as they age and also reduce the risk and rate of cognitive decline in Alzheimer’s patients.
Whether we share an Alzheimer’s diagnosis or whether we choose to stay private, as Alzheimer’s becomes a more prevalent health, demographic, and economic factor in our society, each of us will have the opportunity to show that Alzheimer’s patients and their families can live with joy.
“Caregiver” is largely visible on the badges of each Cleveland Clinic employee from nurse and resident to housekeeper and engineer. It is more than just a word here; it is their living mantra reminding everyone that being a caregiver is their first duty. Each and every employee’s role is important in providing a caring and healing environment for the patients and family members.
The Cleveland Clinic is massive -- huge buildings connected by skywalks and shuttles over a sprawling campus-- and could be viewed as overwhelming but as my family has learned over this past week it is also a deeply personal place where anyone will pause to greet you sincerely, to offer directions or to repeat an instruction. It is these simple acts that bring comfort to weary loved ones. Despite the toll this health care crisis has brought our family; being here has been amazing experience in the level of care my father has received as well as the teaching and support we have all received on a very personalized level.
On Friday, we arrived at the ClevelandClinicSurgeryCenter before 5:30 in the morning as instructed and it would be twelve hours later before the procedure would be completed. The surgery proved to be more extensive with some complications not anticipated. My Dad will now experience very significant life changes-- he will have a ileostomy as well as a urostomy-- and will be more than surprised when he is finally aware of all that occurred. On the other hand his surgeon did not see any visible signs of more cancer; but the final pathology report is weeks away.
Post-operative courses are also very fatiguing for the individual and their loved ones. The anticipatory stress is over yet there is often a let-down factor that seems to deflate all the energy that was so well-maintained in the preparations for the procedure. Now the concerns change; will the results but negative…will there be any other complications…how will he manage all these changes…how will our lifestyles change…will there be another surgery in the near future…will there still have to be more chemo? There are no answers to these questions today.
Dad is making progress; the attached tubes and wires have decreased, he is walking further and more frequently and is now allowed an ice chip per hour. He is also asking questions and absorbing the answers and their implications. He is very fortunate to have a strong and supportive team of family members and professionals beside him on his journey.
