Caregivers

Driving Dilemmas: Risk vs. Independence

July 1, 2018 Caregivers, Life

Driving a car is a symbol of independence and competence and is closely tied to an individual’s identity. It also represents freedom and control and allows older adults to gain easy access to social connections, health care, shopping, activities and even employment. At some point, however, it is predictable that driving skills will deteriorate and individuals will lose the ability to safely operate a vehicle. Even though age alone does not determine when a person needs to stop driving, the decision must be balanced with personal and public safety. Driving beyond one’s ability brings an increased safety risk or even life-threatening situations to all members of society. Statistics show that older drivers are more likely than others to receive traffic citations for failing to yield, making improper left turns, and running red lights or stop signs, which are all indications of a decrease in driving skills. Understandably, dealing with impaired older drivers is a delicate issue.

The road to driving cessation is anything but smooth. Each year, hundreds of thousands of older drivers across the country must face the end of their driving years and become transportation dependent. Unfortunately, finding other means of transportation has not noticeably improved in recent years, leading to a reluctance among older drivers to give up driving privileges and of families to remove the car keys. The primary issue facing older drivers is how to adapt to changes in driving performance while maintaining necessary mobility. Despite being a complicated issue, this process can be more successful when there is a partnership between the physician, older driver, family or caregiver.

Dramatic headlines like these have ignited national media debates and triggered the pressing need for more testing and evaluation of elderly drivers, especially with the swell of the Baby Boomer generation: “Family of four killed by an 80-year-old man driving the wrong way on Highway 169.  86-year-old driver killed 10 people when his vehicle plowed through a farmers’ market in southern California. 93-year-old man crashed his car into a Wal-Mart store, sending six people to the hospital and injuring a 1-year-old child.”

According to the Hartford Insurance Corporation, statistics of older drivers show that after age 75, there is a higher risk of being involved in a collision for every mile driven. The rate of risk is nearly equal to the risk of younger drivers ages 16 to 24. The rate of fatalities increases slightly after age 65 and significantly after age 75. Although older persons with health issues can be satisfactory drivers, they have a higher likelihood of injury or death in an accident.

Undoubtedly, an older adult’s sense of independence vs. driving risk equals a very sensitive and emotionally charged topic. Older adults may agree with the decline of their driving ability, yet feel a sense of loss, blame others, attempt to minimize and justify, and ultimately may feel depressed at the thought of giving up driving privileges. Driving is an earned privilege and in order to continue to drive safely, guidelines and regulations must be in place to evaluate and support older drivers.

Dementia and Driving Cessation

Alzheimer’s disease and driving safety is of particular concern to society. Alzheimer’s disease (AD) is the most common cause of dementia in later life and is a progressive and degenerative brain disease. In the process of driving, different regions of the brain cooperate to receive sensory information through vision and hearing, and a series of decisions are made instantly to successfully navigate. The progression of AD can be unpredictable and affect judgment, reasoning, reaction time and problem-solving. For those diagnosed with Alzheimer’s disease, it is not a matter of if retirement from driving will be necessary, but when. Is it any wonder that driving safety is compromised when changes are occurring in the brain? Where dementia is concerned, driving retirement is an inevitable endpoint for which active communication and planning among drivers, family, and health professionals are essential.

Current statistics from the Alzheimer’s Association indicate that 5.3 million Americans have Alzheimer’s disease (AD) and this number is expected to rise to 11-16 million by the year 2050. Many people in the very early stages of Alzheimer’s can continue to drive; however, they are at an increased risk and driving skills will predictably worsen over time. The Alzheimer’s Association’s position on driving and dementia supports a state licensing procedure that allows for added reporting by key individuals coupled with a fair, knowledgeable, medical review process.

Overall, the assessment of driving fitness in aging individuals, and especially those with dementia, is not clear cut and remains an emerging and evolving field today.

Physician’s Role in Driving Cessation

While most older drivers are safe, this population is more prone to vehicle accidents due to decreased senses, chronic illness and medication-related issues. The three primary functions that are necessary for driving and need to be evaluated are: vision, perception, and motor function. As the number of older drivers rises, patients and their families will increasingly turn to the physicians for guidance on safe driving. This partnership seems to be a key to more effective decision-making and the opinions of doctors vs. family are often valued by older drivers. Physicians are in a forefront position to address physical, sensory and cognitive changes in their aging patients. They can also help patients maintain mobility through proper counseling and referrals to driver evaluation programs. This referral may avoid unnecessary conflict when the doctor, family members or caregivers, and older drivers have differing opinions. (It should be noted that driver evaluation programs are usually not covered by insurance and may require an out-of-pocket cost.)

Not all doctors agree that they are the best source for making final decisions about driving. Physicians may not be able to detect driving problems based on office visits and physical examinations alone. Family members should work with doctors and share observations about driving behavior and health issues to help older adults limit their driving or stop driving altogether. Ultimately, counseling for driving retirement and identifying alternative methods of transportation should be discussed early on in the care process, prior to a crisis. Each state has an Area Agency on Aging program that can be contacted for information, and referrals can be made to a social worker or community agency that provides transportation services.

Resources do exist to help physicians assess older adults with memory impairments, weigh the legal and ethical responsibilities, broach the topic of driving retirement and move toward workable plans. The Hartford Insurance Corporation, for example, offers two free publications that make excellent patient handouts: At the Crossroads: A Guide to Alzheimer’s Disease, Dementia and Driving and We Need to Talk: Family Conversations with Older Drivers.

These resources reveal warning signs and offer practical tips, sound advice, communication starters, and planning forms. Other resources can be found through the Alzheimer’s Association. Physicians can also refer to the laws and reporting requirements for unsafe drivers in their state and work proactively with patients and their families or caregivers to achieve driving retirement before serious problems occur. Ultimately, assessing and counseling patients about their fitness to drive should be part of the medical practice for all patients as they age and face health changes.

Driver’s Role in Driving Cessation

“How will you know when it is time to stop driving?” was a question posed to older adults in a research study. Responses included “When the stress level from my driving gets high enough, I’ll probably throw my keys away” and “When you scare the living daylights out of yourself, that’s when it’s time to stop.” These responses are clues to a lack of insight and regard for the social responsibility of holding a driver’s license and the critical need for education, evaluation and planning.

Realizing one can no longer drive can lead to social isolation and a loss of personal or spousal independence, self-sufficiency, and even employment. In general, older drivers want to decide for themselves when to quit, a decision that often stems from the progression of medical conditions that affect vision, physical abilities, perceptions and, consequently, driving skills. There are many things that an older adult can do to be a safe driver and to participate in his or her own driving cessation.

The Centers for Disease Control and Prevention suggest that older adults:

  • Exercise regularly to increase strength and flexibility.
  • Limit driving only to daytime, low traffic, short radius, clear weather
  • Plan the safest route before driving and find well-lit streets, intersections with left turn arrows, and easy parking.
  • Ask the doctor or pharmacist to review medicines—both prescription and over-the counter—to reduce side effects and interactions.
  • Have eyes checked by an eye doctor at least once a year. Wear glasses and corrective lenses as required.
  • Preplan and consider alternative sources and costs for transportation and volunteer to be a passenger

Family’s or Caregiver’s Role in Driving Cessation

Initially, it may seem cruel to take an older person’s driving privilege away; however, genuine concern for older drivers means much more than simply crossing fingers in hopes that they will be safe behind the wheel. Families need to be vigilant about observing the driving behavior of older family members. One key question to be answered that gives rise to driving concerns is “Would you feel safe riding along with your older parent driving or having your child ride along with your parent?” If the answer is “no,” then the issue needs to be addressed openly and in a spirit of love and support. Taking an elder’s driving privileges away is not an easy decision and may need to be done in gradual steps. Offering rides, enlisting a volunteer driver program, experiencing public transportation together, encouraging vehicle storage during winter months, utilizing driver evaluation programs and other creative options, short of removing the keys, can be possible solutions during this time of transition.

Driving safety should be discussed long before driving becomes a problem. According to the Hartford Insurance survey, car accidents, near misses, dents in the vehicle and health changes all provide the chance to talk about driving skills. Early, occasional and honest conversations establish a pattern of open dialogue and can reinforce driving safety issues. Appealing to the love of children or grandchildren can instill the thought that their inability to drive safely could lead to the loss of an innocent life. Family members or caregivers can also form a united front with doctors and friends to help older drivers make the best driving decisions. If evaluations and suggestions have been made and no amount of rational discussion has convinced the senior to cease driving, then an anonymous report can be made to the Department of Motor Vehicles in each state.

According to the Alzheimer’s Association, strategies that may lead to driving cessation when less drastic measures fail include:

  1. Family meetings to discuss issues and concerns
  2. Disabling or removing the car
  3. Filing down the keys
  4. Placing an “Expired” sticker over the driver’s license
  5. Cancelling the vehicle registration
  6. Preventing the older driver from renewing his or her driver’s license
  7. Speaking with the driver’s doctor to write a prescription not to drive, or to schedule a formal driving assessment

Finally, it is suggested that family members learn about the warning signs of driving problems, assess independence vs. the public safety, observe the older driver behind the wheel or ride along, discuss concerns with a physician, and explore alternative transportation options. Solutions There are a multitude of solutions and recommendations that can be made in support of older drivers. Public education and awareness is at the forefront. An educational program that includes both classroom and on the road instruction can improve knowledge and enhance driving skills.

The AAA Foundation provides several safe driving Web sites with tools for seniors and their loved ones to assess the ability to continue driving safely.  These include AAAseniors.com and seniordrivers.org.  They also sponsor a series of Senior Driver Expos around the country where seniors and their loved ones can learn about senior driving and mobility challenges and have a hands-on opportunity to sample AAA’s suite of research-based senior driver resources. Information on the Expos is available at aaaseniors.com/seniordriverexpo.

AARP offers an excellent driver safety program that addresses defensive driving and age-related changes, and provides tools to help judge driving fitness. Expanding this program or even requiring participation seems to be a viable entry point for tackling the challenges of driving with the aging population.

CarFit is an educational program that helps older adults check how well their personal vehicles “fit” them and if the safety features are compatible with their physical characteristics. This includes height of the car seat, mirrors, head restraints, seat belts, and proper access to the pedals. CarFit events are scheduled throughout the country and a team of trained technicians and/or health professionals work with each participant to ensure their cars are properly adjusted for their comfort and safety.

Modification of driving policies to extend periods of safe driving is another solution. Older drivers nearing the end of their safe driving years could ‘retire’ from driving gradually, rather than ‘give up’ the driver’s license.  An older adult can be encouraged to relinquish the driver’s license and be issued a photo identification card at the local driver’s bureau.

The Alzheimer’s Association proposes several driving assessment and evaluation options. Among them are a vision screening by an optometrist, cognitive performance testing (CPT) by an occupational therapist, motor function screening by a physical or occupational therapist, and a behind the wheel assessment by a driver rehabilitation specialist. Poor performances on these types of tests have been correlated with poor driving outcomes in older adults, especially those with dementia. Requiring a driving test after a certain age to include both a written test and a road test may be an option considered by each state.  Finally, continued input and guidance will be necessary from AARP, state licensing programs, transportation planners, and policymakers to meet the needs of our aging driving population.

It is appropriate to regard driving as an earned privilege and independent skill that is subject to change in later life. In general, having an attitude of constant adjustment until an older individual has to face the actual moment of driving cessation seems to be a positive approach. Without recognizing the magnitude of this transition, improving the quality of life in old age will be compromised. Keeping our nation’s roads safe while supporting older drivers is a notable goal to set now and for the future.

 

Article from Today’s Caregiver.

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How to Travel (with greater ease) with Parkinson’s

July 1, 2018 Caregivers, Exercise, Life

For the average person, traveling is a minor frustration. Security lines, delays, crowded airports and cramped and long lines at snack shops and restaurants are par for the course. However, if you’re living with Parkinson’s, those things aren’t just frustrations, they can be so troublesome and aggravating to deal with that you choose to stay at home.

That’s why we decided to reach out to our Davis Phinney Foundation Ambassadors, many of whom are avid travelers, to get their best tips for traveling with Parkinson’s. Armed with this information, when you get out and about this summer, we hope you’ll do so with greater ease.

Medication Management

Managing medications topped nearly everyone’s list. Here are a few suggestions our expert travelers offered.

Bring more than you need. (And always know how to get more in a pinch.) When you’re headed out for a long trip, it’s easy to miscalculate; so, bring extra.

Put your medications in more than one location. This way if something happens with your luggage or you forget a backpack somewhere, you’re covered. Ideally, keep them in your carry-on bags or on you if possible.

Set timers or alarms on your phone so you’re always prompted to take them, even if you’re caught up in another activity.

If you’re going to be in multiple time zones, plan a consistent schedule for taking your medication. Your body doesn’t care that you started in Boston and ended up in LA – it wants Sinemet every three hours.

Sometimes travel days will stretch on and on, far beyond a typical day at home. If your awake time demands it, take an extra dose of something and make sure you account for those extra doses when packing your meds.

If you’re traveling with a companion or care partner, have them carry an extra dose of your medications.

Always carry a complete list of medications with you. And be ready to show them if asked.

Make sure at least one set of your prescriptions are in Rx bottles with labels. If someone in authority questions the contents of your pill bags or bottles and you can’t prove what the medication is, they can take them if they must.

If you have any liquid medications (e.g., the gel form of carbidopa/levodopa for the Duopa pump that’s approved in the US), you’ll need a letter from your doctor. Although you’re allowed to travel with medications greater than the three-ounce limit specified by the Transportation Safety Administration, those medications will be subject to additional scrutiny, and you’ll need the documentation from your doctor as part of that process. Be sure to keep these medications with you in your carry on. Do not put them in your checked luggage.

Planning

Consider traveling by train rather than getting trapped in those tiny airplane seats. Trains have plenty of legroom, there’s no TSA and you get an amazing view.

When buying plane, train or bus tickets, be sure to allow enough time between legs if you have to have a layover so you have the time you need—and more—to get to your next gate.

Travel when you’re at your best. For example, if you feel best in the morning because that’s when your medications offer you the best relief from symptoms, consider flying or traveling at that time.

Make a list of everything you could possibly need for your trip and save it. You might have different lists for bike rides, road trips, weekend getaways, international trips, work trips and long-term travel. Update your lists on your computer each time you travel so they’re ready to print out when you prepare for your next adventure.

Check the weather! If you need to pack a few days before you leave, and you pack for the current weather report, you could get stuck with the wrong clothes. Be sure to check again the day before you leave since weather reports change quickly, and you may need to adjust what you pack. Many people living with Parkinson’s don’t do that well in the heat or in the cold. Not having the correct clothing can be a real problem.

Put all of your paperwork in an easy to access location. This might be in the top pocket or your backpack or maybe the pocket of your pants or jacket.

Consider including in your paperwork an emergency contact list with information about your neurologist, primary care physician and other healthcare providers as well as the names and contact information of family members or other people who should be contacted in case of emergency.

If you tend to run late, avoid stress by getting to the airport extra early. Everything takes longer than you expect, so think through the steps you’ll need to take for airport security, airline boarding, baggage handling, lines at the bathroom, snack shopping, etc.

If you’re going to be out of town for a while, take a quick picture of where you parked or make a note in your phone in case you forget exactly where you left your car when you return.

Read up on flying with a disability so you know what’s available to you.

Getting Around

Carry a cane or a walking stick, even if you think you don’t need it. Stress often makes Parkinson’s symptoms worse, and travel is stressful. Even if you don’t need it, it’s a warning sign to others to not crowd you or run over you in the terminal or on the street.

Arrange for a wheelchair to get through the airport. This can help a lot in crowds or in unfamiliar places.

If you need to use a handicap bathroom, use them when you see them.

Take advantage of TSA Pre✓® and Clear.

If you need help, ask for it. If help is offered, take it. This includes having someone carry your bags, taking advantage of extra time allowed for boarding, having someone get food and bringing it to you, etc.

Take a disposable plastic grocery bag with you so you can open it up and sit on it on the plane. When you want to get out of your chair, the plastic reduces friction which makes it much easier to get out of your chair.

Practice getting in and out of your airplane seat (or any seat) before you go. One of our Ambassadors Amy Carlson made this great video to show you how to do it with greater ease.

Food & Drink

Have your food items at the ready since you need to separate them when going through security.

Fill your water bottle after security and between flights.

Bring more snacks than you think you’ll need on the plane in case you get stuck, delayed and re-routed and suddenly your two-hour flight turns into a six hour one.

Communication

Remember that communication is on the person with Parkinson’s. As Kathleen Kiddo says, “Nobody can read our cue cards so it’s our job to let them know what’s up.”

Consider wearing or traveling with a card that says something like, “I’ve got Parkinson’s and I need a bit more time and space. Thank you.”

Some people with Parkinson’s carry this card.

I'm not intoxicated, I have Parkinson's

Or this card from the Parkinson’s Foundation.

Sleep and Rest

Slow down and don’t overschedule your days. Choose the activities that are most important to you rather than trying to rush through to hit every possible spot. You will have the most enjoyable time if you learn how to conserve energy so that you have it when it matters most.

Try to time your travel so that you have plenty of time to rest once you arrive at your destination. For example, if you’re traveling to Europe, consider going a day early so you have time to get your body clock adjusted.

If you travel somewhere that has a significant time change, take a one to two-hour nap when you arrive. Go out for dinner and then go to bed at what would be a normal time for the part of the world you’re in. Immediately try to assimilate into the routine of your new environment.

Bring a sleep mask and earplugs. Many people with Parkinson’s have difficulty sleeping. Keeping a sleep mask and a pair of soft foam earplugs nearby can help you get some rest when you’re traveling. You might also consider bringing an inflatable neck pillow for additional comfort.

Clothes

Pack light and feel secure knowing that, unless you’re traveling to a remote area, you’ll be able to pick up anything you need once you reach your destination.

Travel in comfortable clothing that’s easy to get on and off in bathrooms. Slip-on shoes or sandals, shoes that don’t require you to lean over to take them off, are great for airports. And keep an extra pair of socks in your carry on for cold planes.

Wear knee-high compression socks for road trips and air travel. They keep the blood flowing and reduce swelling.

Bring a change of clothes in your carry on bag just in case.

Exercise

Consider bringing a jump rope. It travels well and it offers a great workout. It’s an aerobic and motor challenge, a great exercise for travel.

Whether in a car or on a plane or train, take time to get up and stretch every 30-45 minutes.

As much as possible, try to continue to exercise and do the things that are part of your daily routine for living well while you’re on the road. It can be a challenge when you’re in a different place and don’t have access to the same routine or equipment, but veering too far off schedule can create problems both when you’re traveling and when you arrive home. Adjust as needed, but continue to do the activities that make you feel well.

Miscellaneous

Use a label maker to put your name and cell number on loose objects, like canes.

If you don’t have a handicap placard, get one.

While you’re exploring new areas, consider checking out the local Parkinson’s offerings.  Does the place you’re visiting offer something in the way of support for people living with Parkinson’s that you don’t have where you live? If not, do they need your skills? Could you bring something to share with the community you’re visiting?

Don’t be afraid of letting your travel companion(s) know that you’re too tired to do certain activities and you just need time to rest.

If you have DBS, bring the Medtronic device wallet card (or whatever company made yours). You may be asked for it. It’s best to not try and explain DBS to security people.  Just say you have a “medical device” or even just say you have a pacemaker as that’s something they hear all the time. Remember, you can’t go through the old style security check machines or let them use wands to check you. Be prepared for a pat down.

Pay for luxuries and conveniences while traveling if you can. They’re designed to make your life easier and if you ever need that, it’s when you’re traveling.

If at all possible, travel with others who get you so well that they know when you need help and when to back off. They know when you need to rest and when you’re ready to go. And they, more than anything, can gracefully manage the unpredictability of Parkinson’s and not let it get in the way of a fabulous trip.

Maintain a sense of humor. Travel is difficult even under the easiest of circumstances. When something goes wrong, and it almost always does, the way you handle it will have a big impact on your physical and emotional well-being. Eventually, you’ll get where you need to go; so, in the meantime, have a good laugh about it.

Finally, while there’s a lot that happens when you travel that you can’t control, you can control your experience. Don’t let Parkinson’s stop you from traveling. As Jill Ater says, “Most people in the word are incredibly understanding and patient. If you like to travel, then it’s part of your living fully with Parkinson’s.”

 

Article from Davis Phinney Foundation.

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Joe & Patty Schlicher presented with Tulip Award

June 5, 2018 Awareness, Caregivers, Community Outreach, Donate

Four years ago, Joe & Patty Schlicher took over a community golf outing that had been held for many years to support WPA. Together with their friends and family, they have held the “Movers & Shakers Classic” golf outing in Elkhorn as a way to raise awareness and money for WPA.

Joe & Patty’s support is evident through their work year-round, not just at the golf outing. They were instrumental in starting a Rock Steady Boxing class at the Geneva Lakes Family YMCA, and they started a support group for people with PD and caregivers in conjunction with the Boxing class. Patty also joined WPA’s newly formed Caregiver Committee to help us expand our programming.

Joe & Patty were surprised with the Tulip Award at the Movers & Shakers Classic on June 2. The award recognizes a worthy individual, couple, or family who have shown dedication and a commitment toward helping people with PD and educating the public about PD.

We are so grateful to Joe & Patty for the work they have done to promote hope, community, support, and resources for people with PD and their loved ones!

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For Caregivers: Dealing with Caregiver Guilt

June 5, 2018 Caregivers
Caregivers often carry around undeserved guilt, believing that they aren’t doing enough for their loved ones. This guilt can make the caregiving role even more stressful than it already is. One might ask why a caregiver feels guilty when they’re doing such a courageous job. Here are some reasons:
  • Resentment for personal time lost – It’s normal to feel like you’re missing something when so much of your time is taken up taking care of someone else. The caregiver thinks that they shouldn’t feel this way.
  • Unresolved issues – Many times, there are issues stemming from childhood or arguments in the past that hinder the caregiving process. Many caregivers feel guilty about this.
  • Comparing yourself to others – Some caregivers will look at another caregiver and think that they could never accomplish what that other person did.
  • Knowing placement is inevitable – There can be tremendous guilt involved when a caregiver has to place their loved one in assisted living or a nursing home.
  • Dealing with your own issues – You may be dealing with personal or health problems yourself, which takes away from your caregiving responsibilities.

Ways to Cope with Caregiver Guilt

  • Acknowledge the guilt – It’s normal to feel guilt from time to time. Once it’s recognized, we are better able to deal with it.
  • Look at the bigger picture – Although you may be stressed with a particular situation now, it will not last forever. Look at the sacrifices you make for your loved one and realize that you are doing a great job.
  • Accept that you’re human and have flaws – All of us make mistakes from time to time. Some of us may be good at the physical aspects of caregiving, while others may be better able to handle the emotional toll. Recognize your strengths and don’t focus on the negative.
  • Make time for yourself – This is easier said than done, but it’s a must! Even if it’s just an hour or two a week, go out and have coffee with a friend, catch a movie, attend a caregiver support group, or just curl up and read a book. Taking time out helps you put your situation in better perspective.
  • Know that you are making the best decision for you and your loved one at that time – This can be hard to accept, especially if you’ve made a promise to a loved on in the past that you can no longer keep. A change in a situation may force you to break that promise, but realize that the promise was made under different circumstances. You are making the best decision with new circumstances.
  • Deal with unresolved issues or accept them for what they are – Many times, we may be taking care of someone who we resent, for many reasons. You can choose to try and resolve those feelings from the past to allow you to care for that person fairly. You can also choose to allow someone else to care for that person because you know you cannot rightfully do so. Either way, this is something you need to consider if your past with that person is an issue for you. Talk to a professional if necessary to make the best decision for both you and your loved one.
  • Reach out for support from family and friends; seek caregiver support groups or professional help to work through your feelings of guilt. Know that you are not alone in your caregiving journey and the help is available. Most of all, remember that you are doing the best that you can!

Article from Caregiver.com.

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Children as Caregivers

May 1, 2018 Caregivers, Life

“It’s my responsibility,” he told me. “We’re family.” His name is Joel and he is 11. His 13-year-old brother, Scott, feels the same way, explaining that it’s “just something you do, you take care of each other.” This is not an uncommon theme in children when they live with someone who has a physical disability or a chronic illness. Whether it’s a parent, step-parent, grandparent, sibling or non-relative, children also take on the role of caregivers, though this role is frequently less distinct than that played by the adults in the home. However, children are no less affected by the life changes that come with caring for someone with chronic illness or disability, and recognizing the effects that this situation has upon them is the key to helping young people cope with the stress and uncertainty that often accompanies it. This may be particularly challenging since much of the time the person needing care is a parent..

“Disability” and “illness” can take many forms, from a sudden injury which forces changes in mobility, such as a spinal cord injury or fracture of a limb, to more insidious medical illnesses like MS, rheumatoid arthritis, or cancer.

Alcoholism and drug abuse are also forms of illness which have their own unique reverberations in the household, and each has effects upon the child in different ways. The way each child reacts and copes with the medical situation is largely based upon their personality and prior life experience. According to one person interviewed who was a caregiver for her mother and siblings following her father’s death, “you get through it.” Now a Social Worker, she feels that “those who are not ‘strong enough’ may go on to marry early to get out of the situation, or find themselves in unhealthy relationships” where they are dominated by a stronger personality. She also stated that “it’s just what you do,” and this is a common comment made by those who found themselves in a caregiving role when they were young.

Caregiving takes many forms, from helping with younger siblings to performing household tasks normally completed by an adult, such as cooking or providing personal care to the disabled or ill person. Often, the receiver of the care is an adult, which places the young person in a precarious position of being a child, essentially performing parental functions for an adult. This can result in role conflicts within the child, and changes the dynamic in the parent-child relationship. In interviewing those who had entered into the role of caregiver at an early age, it was notable that none of them initially indicated feelings of resentment at their situation. Like Joel and Scott, it came as part and parcel of being a family, but there is a cost.

Despite this apparent acceptance of their ill-defined role, children demonstrate recognizable physical and emotional responses to their situation. These can include, but are not limited to: changes in social behaviors, decline in school performance, decreased participation in previously enjoyable activities, mood disturbances, increased fatigue, personality changes and “escape” behaviors, such as self-isolation. Changes in social behaviors can be seen in the way they interact with both adults and other children. Some use more adult language, engaging adults in social situations rather than persons of their own age, while others appear to regress or demonstrate attention-seeking behaviors such as baby talking, excessive crying or thrill seeking. School performance changes can result from preoccupation or worry about the ill or disabled person, though this is generally more prevalent at the beginning of the changes at home than when the situation is long-term. Behaviors which are disruptive in social situations affect school, as well, and the child may talk in class, become tearful, or pull pranks which land them in the principal’s office, or which require that the child be sent home, as a conscious or unconscious attempt to regain their child role.

Children generally tend to be self-focused. With the addition of the illness or disability, that focus necessarily and abruptly changes to one of helping others. Rather than indulging in their usual enjoyable activities, they may decline invitations for age-appropriate activities because they need to “go home and help mom” or whoever they are assisting at home. This increased sense of responsibility, though somewhat overdeveloped due to the unique situation in which they have been placed, overtakes the drive to seek personal enjoyment.

Mood swings can also be evident in some youngsters. A sense of loss of control, fear, or guilt that they may have been the cause of the illness, or if they have suffered a significant loss can manifest themselves in very strong feelings. Incidents that would not have warranted even a mild response can become gigantic and the focus of these strong emotions may result in verbalized and sometimes displaced anger. This anger is rarely directed at the object of the feelings, however, which makes it difficult to diagnose and, subsequently, challenging to address. And, as children have generally less sophisticated ways in which to communicate their feelings, they may express them as behaviors.

Fatigue can be an emotional or physical manifestation, with the pressures of school, combined with greater duties in the home, and the stress of taking on a parental role in the care of the ill person. The child may not fall asleep easily, have trouble staying asleep, or wake up early, “thinking.” Personality changes can be related to sleep disturbance, internalized guilt or resentment, response to stress chemicals in the body, or a change related to how the child “thinks” they should be acting. Assuming the role of caregiver plays directly into the role-conflict—am I a child or am I an adult?

Escape behaviors such as reading for hours, spending inordinate amounts of time alone in his/her room, taking long walks, or plugging in a headset is a means to get away from the demands of being a caregiver. Although not necessarily a negative behavior as it provides the child with an outlet, it can be detrimental if it adversely affects the child’s ability to relate to others or interferes with concrete interactions. Since feelings of isolation can already be present in the situation, self-isolating behaviors may reinforce the feelings of being alone and can potentially lead to significant depression, which compounds the already-present feelings of loss. Most children get through what usually amounts to a brief time of caregiving without lasting, negative effects.

Generally resilient, most children adjust adequately to the temporary life change and go on without residual problems. It is important, however, to recognize that children grieve, too, and that grief is not limited to death and divorce; life changes of every kind can elicit a grief response, which is just as powerful in children as in adults, and is generally less understood. Like adults, children grieve in their own ways. Many of the emotional and physical changes that are seen as attributed to adjustment problems or reactions to being a child caregiver are, in fact, indicators of grief. Being unable to effectively express these feelings, or lacking the ability to understand what they are feeling, increases the frustration and isolation.

Former child caregivers have related that once they reached adulthood, they found themselves sometimes emulating caregiving in their personal and professional relationships. Many that I interviewed chose helping professions such as nursing, Teaching or social work. This is consistent with the personality traits required of a caregiver of any age. Knowing the effects of caregiving on a child, we can better understand how to help our children cope with the intense feelings associated with living with someone else’s illness or disability.

First and foremost, communicate with the child. They need to know that they are not responsible for the adult’s or sibling’s condition. Guilt plays a significant role in a child’s desire to step into the caregiving role. Providing simple and understandable information about the condition, and answering their questions, goes a long way to resolving guilt feelings, as well as easing fear based on the “unknown.” Scott said that though he sometimes was afraid that his mother would die, he did not share his feelings with Joel. He explained,”I don’t want him to worry any more than he already does.” Scott was dealing with the “unknown,” while protecting his brother from it; however, he didn’t realize that Joel was doing the same thing. It is OK to talk about the illness or disability, but don’t make it dinner time conversation every day. Children are very aware of changes in their environment and usually know, without being told, that something is “wrong.” Talking about every ache and pain only reinforces that the parent needs “help,” and further engages the child into the caregiving mode. Instead, talk about everyday things. This reassures the child that the life they know is still going to go on, despite the change in health of their family member.

Second, though it is often easy to accept the help of others when we are ill, it is vital for children in this type of household to have the adult remain as independent as possible, and that they rely on available adult help. This diminishes the role-conflict that can arise when children take on adult responsibilities. Utilize the children in performing age-appropriate tasks, such as folding their own clothes, feeding pets, taking out the trash or loading the dishwasher, and save the more adult responsibilities, such as medication administration, dressing changes, and providing personal hygiene, for the adult caregivers. Utilize outside resources to supplement in-home care to keep child caregiving to a minimum.

As difficult as it can be when illness or disability enters into a home, there needs to be equal focus on both the needs of the child and the needs of the person who is ill. Achieving a balance between each person’s needs allows the child to focus on age-appropriate issues such as school, interactions with peers and personal growth, without nurturing feelings of guilt over not “doing more” with respect to the ill or disabled person in the home. Verbalizing interest in the child’s life provides positive reinforcement for development of interests outside the home. This can also help to decrease mood changes associated with fear or loss of control, as they have the opportunity to succeed outside the home environment with the support and approval of those in the home.

Escape behaviors come into play when the child has to devote a large amount of time providing care for the ill or disabled person, or is having difficulty coping with the change in role. A means of coping, these avoidance behaviors serve to de-stimulate the child and insulate them from their feelings. By changing their role from “caregiver” to one of “member of the household,” there is no need for avoidance of what could be an intensely emotional situation. Though normal self-isolation behaviors may occur, they are less likely to be in response to feelings of stress related to the illness or disability.

Children are affected by illness in the household, just as it affects others in the home. When young people are put into the role of caregiver, there can develop a role-conflict and changing dynamic in the parent-child relationship that can manifest itself in both emotional and physical ways. Understanding the effects of this situation, the grief associated with the change in the home environment, and the stress response in the child can aid in making changes in the expectations of children in this setting, and help them cope and respond in a more positive and age-appropriate manner to this unique and challenging situation. Joel and Scott agree with this. How do I know? I am their mother; I have fibromyalgia and I had a stroke at the age of 37.

 

Article from Today’s Caregiver.

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How to get up from the floor MacGyver Style!

May 1, 2018 Caregivers, Life

Watch how occupational therapist Rhonda promotes creative “out of the box” thinking to inspire new ideas for getting up from the floor after a fall in the home!

 

Video from HomeAbility.com.

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Maximize your Mobility with Fall Prevention

April 1, 2018 Caregivers, Exercise, Life

https://vimeo.com/147745733

 

Video from Davis Phinney Foundation.

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Don’t Get Mad, Get Funny

April 1, 2018 Caregivers, Life

No matter how much we love them, caring for family members can be a very stressful job. And all that stress can take its toll on our health and make our role as family caregivers even more difficult.

One of the best ways to reduce stress and feel better about your caregiver role is to laugh. Laughter has been shown to improve both physical and emotional health and to help us feel renewed and rejuvenated.

Here are six simple ways to add more laughter to your life:

  1. Make funny friends. People who make you laugh not only give you the gift of laughter, they also help teach you how to change your perspective on life and lighten up yourself.
  2. Read funny greeting cards especially if you’ve had a really stressful day. Greeting cards are great because they deliver a laugh almost immediately and they represent a diversity of types of humor.
  3. Have five of your favorite funny movies saved so you can watch them when you’re feeling overwhelmed by stress. Consider funny movies to be part of your emergency first aid humor kit. If you can’t think of your favorites offhand, check out the American Film Institute’s list of 500 funniest movies of all time.
  4. Wear a funny button in public. Wearing a funny button communicates to everyone who sees you that you have a sense of humor and are open to hearing about their humorous experiences.
  5. Look for the funny. Instead of focusing on life’s miseries, try to find the laughter in everything that goes on around you. The majority of things we laugh at come from spontaneous situations that aren’t meant to be funny. Think of it as looking at the world through a pair of Groucho glasses.
  6. Fake it. Studies show that you don’t have to feel like laughing to get the benefits! It’s just like exercise; if you work out you’ll get fitter whether you feel like working out or not. Only if you fake laughter, chances are you’ll soon feel like laughing for real.

 

Article from Caregiver.com.

 

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7 Home Safety Tips

March 1, 2018 Caregivers, Life

After a Parkinson’s disease diagnosis, adjustments and renovations both small and large can help make your home more comfortable — and safer — for yourself or a loved one with Parkinson’s disease, especially if gait, balance and fatigue symptoms are an issue.

Our community shared changes they made around the home that helped them. You can also find our guide to assistance products for Parkinson’s disease such as utensils with a padded, ribbed handle and non-slip shoes, which can also help make life at home with Parkinson’s disease more comfortable.

Not all of these recommendations may be the right fit for you or your loved one. Connect with an occupational therapist for personalized advice on making changes around your home. An OT can also help you plan for how to make further adjustments as the disease progresses.

1. Start with small changes, like getting rid of potential obstacles on the floor such as throw rugs and extension cords. Leave plenty of space between pieces of furniture, and create a clear path through your home.

2. Tackle the bathroom. Start by getting rid of bath mats that may slip, and add a non-slip mat to the shower or bath tub. Several commenters recommended getting an elevated toilet seat, which can help make it easier to stand back up. Be careful not to use a towel rack or toilet paper dispenser for help getting up — if possible, install safety rails instead.

3. Add more lights around the house. Light makes navigation easier and can also boost mood, one commenter noted. Touch lights and lights that respond to sound also help.

4. If it’s in your budget, install railings along walls and hallways to help with balance and prevent falls.

5. Invest in chairs that are easier to get out of, such as adjustable recliners or chairs with straight backs, firm seats and arm rests. Firm cushions can add height and help with standing, as well.

6. Consider making more significant renovations, if your budget allows, such as building ramps, stair lifts and wider doorways. Medicare covers different types of portable medical equipment, but not permanent installations.

7. Besides practicality, also make adjustments for comfort. One commenter even found a way to help her two Yorkies sleep better, too, after her husband started acting out his dreams.

 

Article from Michael J. Fox Foundation for Parkinson’s Research.

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Understanding Parkinson Disease Psychosis

February 1, 2018 Caregivers, Education, Life

If you are the caregiver of someone with Parkinson’s disease (PD), you are likely well aware of the common motor symptoms associated with the condition, like tremors. However, you may not be aware that non-motor symptoms (those unrelated to physical movement), such as psychosis, commonly develop as the disease progresses. These symptoms should not be overlooked.

What is Parkinson’s Disease Psychosis?

As PD progresses, up to 40 percent of the approximately one million Americans living with the illness will develop psychotic symptoms, primarily hallucinations, but also delusions. These symptoms can be an indication of Parkinson’s disease psychosis (PDP), but unfortunately, many patients are not diagnosed. Sometimes, the symptoms of PDP are misdiagnosed as a co-morbid condition. Other times, patients and their families may not be comfortable sharing the symptoms with their physician team.

What Causes PDP?

Though definitions can vary, the term psychosis generally means “loss of reality testing.” Psychotic symptoms may be brought on by infections, typically bladder or pneumonia, but are often caused by medications. These are usually the ones used in treating PD, but other medications, particularly narcotic pain medications and many of the drugs used to treat an overactive bladder, may cause symptoms as well. When infections have been ruled out and no other medication has been identified as causing the psychosis, then the most likely culprits are the PD medications. It’s also possible that PDP might be a naturally occurring complication as the disease progresses.

There are a couple of things to keep in mind here. One is that the symptoms may begin even though PD medications have been constant over several months, or even years. The problem may not necessarily be triggered by an increase in PD medications. The reason that a stable medication regimen can begin causing hallucinations is that the PD is always progressing, making patients more sensitive to possible drug side effects. The second principle to keep in mind is that it may not be one drug that is the cause, but the combination of all the PD medications.

Hallucinations

Many PD patients have occasional, or not so occasional, symptoms that are often seen in people who lose their ability to separate reality from fantasy. These are most commonly hallucinations, which are false perceptions in one of our special senses (vision, hearing, taste and touch). For example, it’s quite common for patients to report seeing other people, often children, who are sitting or standing in the room, ignoring them. Another commonly cited experience is that a patient who is watching TV or reading a book notices two strangers sitting on a sofa talking to each other, but they make no noise. The patient talks to them, and they ignore him. When he gets up to approach them, they disappear. A few days later, this happens again, and after one or two episodes, the patient no longer pays attention or tries to contact them. These types of hallucinations tend to occur more at night than during the day and are usually the same each time.

Some of the images may be entertaining, but usually are just a little bit annoying. The hallucinations may look real, appear to be black and white, fuzzy or sharp and sometimes, the people may look somewhat odd, like cartoons.

Auditory hallucinations, or hearing things that are not there, are about half as common as visual hallucinations, and they tend to be less distinct than the visual hallucinations. Patients may hear a radio in another room, a party going on across the street or voices talking in the hallway. Less common are tactile hallucinations (e.g., feeling things on the skin), olfactory (e.g., smelling an aroma not detectable to others) and taste hallucinations.

Other Types of Hallucinations

In addition to persistent or repeated visual hallucinations, a PD patient might also see a fleeting image out of the corner of their eyes, like a cat or a shadow passing by, but when they turn to look, there isn’t anything there. Sometimes they see slight flashes of light, which are very much like reflections off their eyeglasses.

Another type of experience is called a “presence hallucination,” which is not really a hallucination. With a presence hallucination, patients have a strong feeling of another person, or an animal, being behind them or to the side, but when they turn around, there isn’t anything. This feeling usually isn’t scary, as the patient doesn’t feel they’re about to be attacked. However, this is a strong feeling – something most people have experienced on occasion – but in this case, it’s experienced more frequently and more strongly.

Delusions

Delusions are false, irrational beliefs. In PDP, delusions are more bothersome, but less common. Also, in PDP, the delusions tend to be fairly similar from one patient to the next and are usually paranoid in nature. For example, a patient might be positive that his spouse has been attacked and is in need of assistance. Or, a spouse may be irrationally convinced that their partner is committing adultery.

Susan’s Story

Sadly, after a 20-year battle with PD, Susan’s father, Gary, passed away in April 2014 at the age of 74. Because Susan resides in Las Vegas, her mother, Marjorie, was her father’s primary caregiver in Iowa. Susan stayed actively involved by providing her mom with emotional support, particularly in later years when her father developed PDP.

Susan and her mother believe that Gary’s PDP started after a hospital stay resulted in changes to his medication doses. At that time, Gary began to experience strange and disturbing delusions, often in relation to his wife’s safety. For example, on several occasions, he called the police, convinced that “weirdos” had entered the house to sexually assault Marjorie. He once even drove himself to the police station to report the perceived crime. Also disturbing, Gary would see kittens frolicking and then get upset when he thought he saw them die because he “forgot” to feed them. Other hallucinations included seeing strangers in his bed or with him in the shower. Despite telling Gary that his visions were not real, Susan and Marjorie often could not convince him of the truth.

Susan’s mother was emotionally exhausted and stressed from caring for Gary, whom she had been married to for 48 years. The idea of seeking more help for him was overwhelming, given the time she already gave to physical therapy and day-to-day care. Her life already revolved around Gary’s illness. Susan tried to encourage her mother to speak to her physicians about Gary’s visions, but her mother was embarrassed. On the other hand, both also wished the physicians had asked if these symptoms were occurring.

PDP’s Impact on Caregivers

As Susan’s story demonstrates, PDP is difficult for both the patient and their caregivers, particularly because it is impossible to convince someone who is experiencing delusions regarding the truth of their circumstances. Logic does not penetrate.

In fact, accusations of spousal infidelity are often the “last straw” and when caregivers find caring for their loved one too overwhelming. One of the major problems in dealing with PDP is that the patient and the family often try to hide the problem – the patient for fear of being thought “crazy” and the caregiver due to embarrassment. The reality is that when a PD patient has psychotic symptoms, his or her mental abilities will be otherwise normal. The patient may not be disoriented, can still balance their checkbook and recall everything they’re supposed to know. When hallucinations or delusions occur, the treating doctor should be notified. No irreversible harm will occur if treatment is delayed, but it is unlikely the problem will go away on its own.

Treating PDP

Hallucinations don’t always need to be treated. If these symptoms often don’t bother the patient, then they don’t need immediate attention, but they should always be monitored. Yet, hallucinations also indicate toxicity, hence PD medications cannot be increased without worsening of the hallucinations, and therefore, physicians may limit treatment. When the psychotic symptoms require treatment, the doctor may first reduce PD medications, and when these cannot be further reduced, they may prescribe something else.

Support Your Loved One and Yourself

PDP is also associated with increased caregiver stress and burden, nursing home placement and increased morbidity and mortality. But, your loved one is certainly not alone in living with PDP, and an effective management plan can improve the complication. Seek out the support that he or she needs, but also make sure that you are getting the emotional care you personally need in order to be an effective advocate for your loved one.

 

Article from Caregiver.com.

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