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Caregivers: Overcoming the Grief Caused by Parkinson’s

July 1, 2019 Caregivers, Life

One thing that many people might not associate with experiencing Parkinson’s disease is grief. Experiencing grief with this disease is real. It can be felt deep down in your soul, whether you are the one who actually has the disease or you are the caregiver. You mourn for a life that used to be, and fear it may never be again.

Although our life changes in unexpected ways and fear threatens to consume our days and terrorize our nights, we can learn to overcome those wretched feelings. Innumerable people miss out on the rich experiences and blessings they have been given today because they can’t stop worrying about their future with Parkinson’s.

In “Living Beyond Your Feelings: Controlling Emotions So They Don’t Control You,” author Joyce Meyer writes, “The three most harmful negative emotions are anger, guilt, and fear.” When we have Parkinson’s disease, we are particularly susceptible to anger and fear.

We experience anger, as evidenced when we ask ourselves the age-old question, “Why me?”

We pump our fists in the air and ask, “What did I ever do to deserve this?!” Our dreams of a better tomorrow feel as if they have been sucked dry and replaced with feelings that frighten us and worries we can’t seem to get under control.

We think about what used to be: The days when we were able to work at a job we loved; the times when we could get down and play with our grandchildren; the summer vacations we took that used to reenergize us instead of wearing us out. Grief steps in and leaves us feeling fearful and despairing.

Two weeks ago, I lost someone dear to me. She was like a second mother to me. I babysat her daughter as a newborn. She was my maid of honor at my wedding. And when I think of her, a great sadness overcomes me: grief. It not only came upon me at the news of her passing, but also returns each time I think of her.

Getting a diagnosis of Parkinson’s disease can be like losing a loved one.

There is the initial grief, but waves of grief can still overcome us, sometimes when we least expect them. Often, those waves of grief are accompanied by fear. Not only are we dealing with what we’ve lost, but also we are fearful of what we may still lose.

Getting through grief over the loss of a loved one takes time, and the amount of time varies with each individual. It’s the same with the grief of having Parkinson’s.

Grief is normal.

Grief is a part of life. While we must learn to accept it, it is still OK to cry. It is OK to mourn what we have lost. In that mourning, however, we need to remember that life goes on. While we may not know what tomorrow will bring, we know we have this moment right here, right now, and Parkinson’s can’t take that away.

Article from Parkinson’s News Today.

For Caregivers: When and How To Say “No” to Caregiving

April 1, 2019 Caregivers, Life

When is it time to say “No”?

How does a caregiver know when he or she can no longer manage the daily caregiving routines and planning responsibilities? What signals alert the caregiver that he or she is in trouble of getting lost in caregiving? Can a caregiver who cherishes a loved one set limits on responsibilities without feeling guilty or morally bankrupt? These are questions at the heart of successful, long-term caregiving. Unfortunately, for most caregivers, these questions do not arise until they are feeling overwhelmed and depleted.

Being able to say, “No, I can no longer continue to provide care in this way,” may not only save the caregiver from emotional and physical burnout, but can also open up opportunities of shared caregiving responsibilities with others while deepening the level of honesty and openness in the relationship.

Saying “No” may seem like a harsh statement to a caregiver who prides herself on being a helpful, kind and loving person. In fact, most caregivers choose to become one because they feel a moral imperative to do so. This imperative may come from a number of sources including family relationships and roles, friendship ties and social expectations.

Families often select the primary caregiver from cultural norms such as the youngest unmarried daughter or the oldest son as being responsible for a parent’s care. Friendship ties provide many single elders with caregivers who act in lieu of local family members. In the United States, the social norm is for family and friends to provide care to elders first before the government.

Current statistics show that the majority of elder care is provided by families and other members of an elder’s informal social network. Proximity is also a component in caregiving. The closer one is geographically to a loved one, the more likely he or she will become the caregiver. Personal values derived from one’s faith or spiritual practices may lead a person to feel called to provide care. Moral decision making based on humanistic values such as, “Everyone has the right to stay at home if they choose no matter what,” may encourage a person to become a caregiver.

Wherever the imperative is coming from, the role of the caregiver is intimately linked to that person’s code of ethics and the way in which the person chooses to act in his or her own life.

What does saying “No” mean anyway?

Is it a final giving up of duties that implies the caregiver is ending the relationship and leaving a loved one to fend for himself? Maybe the “No” means, “I’m tired and feel trapped.” Maybe the “No” means, “I have failed to be all I could be as a caregiver.” Maybe the “No” means, “I can’t do what you want me to do and I feel inadequate.” Or maybe the “No” just means, “ I am so tired, I have to stop.” The word “No” can have different meanings for different people. “No” doesn’t necessarily have to have a negative connotation attached to its meaning. “No” can be understood as a pause, a time for reflection, a breathing period or, “Let’s stop and talk this over. Things need to change.” Exploring the meaning of “No” for the caregiver is often the first step in establishing better emotional boundaries.

Healthy emotional boundaries are important in helping the caregiver distinguish between his or her own needs and the needs of the person being cared for. Boundaries remind the caregiver and elder that their relationship is between two adults and that there need to be expectations of mutual respect and autonomy for the relationship to be successful.

The ideal time to discuss caregiving boundaries is in the beginning when both people are new to the process of developing this special relationship.Talking about needs in a calm and supportive way allows each member to feel the other’s concern while acknowledging that the relationship will have some limitations.

In an idealized world of caregiving, the care recipient could turn all problems over to the caregiver without any worries or stress and the caregiver would have limitless capacity for love and work. But neither of these situations is realistic. Getting off to a good start by talking about boundaries as part of a healthy relationship lays the groundwork for developing emotional resilience and flexibility to respond to an increase in the elder’s care needs, while managing the inevitable caregiver stress.

In practice, most caregivers address the issue of their own limits after the caregiving relationship gains full steam. Caregivers often get inducted into helping through a sudden major health crisis of a loved one (such as a heart attack) or by the slow but steady process of taking on tasks and responsibilities for the elder as she experiences aging and the loss of function. In either situation, the caregiver and care recipient aren’t necessarily thinking about being in a relationship but about getting the jobs done that need to get done.

In the first instance, addressing the immediate and critical health care needs of the elder takes precedence over long-term care planning. However, as soon as the elder is stable, the time is right for the caregiver to discuss boundaries and limits.

In the second instance, caregivers need to raise the issue of boundaries as soon as they begin to detect the first signs of their own stress or burnout. Signs such as avoiding the loved one, anger, fatigue, depression, impaired sleep, poor health, irritability or that terrible sense that there is “no light at the end of the tunnel” are warnings that the caregiver needs time off and support with caregiving responsibilities.

Setting emotional limits involves a process of change with five key steps.

First, the caregiver must admit that the situation needs to change in order to sustain a meaningful relationship. Without change, the caregiver risks poor health, depression or premature death. The primary caregiver is such an important person to the elder that impaired caregiver health puts the elder at further health risk.

Second, the caregiver must reconsider personal beliefs regarding what it means to be a good caregiver. Since the caregiver generally has moral expectations of his or her own behavior, redefining what “should” be done to what is reasonable and possible to do can be a liberating moment. This may include lowering some expectations of one’s ability to do things and delegating tasks to others.

Third, the caregiver needs to identify key people (friends, family or professionals) who can support and guide the caregiver through this change process. Frequently, caregivers join support groups with other caregivers to reinforce their commitment to change or hire a geriatric care manager coach. A support group is also a place to express anger, anxiety, frustration and sadness about the caregiving experience instead of inadvertently having these feelings pop out during a tense conversation with a loved one.

Fourth, the caregiver needs to develop communication tools to express the need for boundaries. Honesty and simplicity in talking about feelings and needs does not come easily; particularly if one is not familiar with having these types of direct discussions.

Lastly, the caregiver must be able to sustain this new approach while allowing the elder time, to react and express his or her feelings about the changes. Readjusting the balance in any relationship takes time, especially when both members have competing needs.

There is a simple but effective communication approach that can help caregivers express feelings and set boundaries.

This approach encourages the caregiver to speak from an “I” point of view, in a non-accusatory fashion, expressing the caregiver’s limitations or feelings and offering an alternate solution. Some examples of “I” statements are:

“I can no longer drive you to all of your medical appointments due to my work schedule and my limited time off. I know this will be a change for you. I suggest we look into other transportation options such as the Busy Bee Medical Transport Service.”
“Mother, I am unable to continue with the responsibility of cleaning the house weekly. I want to spend my time with you on other matters. I know it’s hard to let newcomers help, but I think it is time to hire a homemaker service you would be comfortable with.”
“Dad, I can no longer assist you down the outside stairs. I am worried about your safety and mine. I believe we need to build a ramp for easier access to your home. I have found a carpenter who has reasonable rates for construction.”

In each of the above statements, there is a presentation of what the speaker cannot continue to do, an acknowledgement that the change will have a consequence for the elder and a suggested solution. No attempt is made to make the elder feel guilty about the effort the caregiver is expending or the caregiver’s stress level.It is understood the elder knows the caregiver is working hard.

Setting the boundary is the caregiver’s responsibility. There is, however, an invitation for discussion and joint problem solving. At first, expressing boundaries in “I” statements may feel awkward, but with practice, caregivers can learn to raise difficult topics by establishing a comfortable atmosphere for discussion.

Initially, the caregiver may experience resistance on the part of his or her loved one to dialogue about changes as to the provision of care. Gentle persistence is needed to attend to the need for new boundaries. Discussions that can be introduced at a time when both individuals have lower stress and are feeling quiet and comfortable with each other are discussions that have a greater chance of success.

Avoid making decisions about change during emergencies. Waiting until the situation is calm, and both parties can take time to think through issues, creates an atmosphere of joint decision making and ownership of the outcome. Making changes in small steps toward a larger change gives everyone a chance to adapt comfortably.

Caregiving is a dynamic relationship that evolves over time. As caregiving tasks increase, so will stress on the caregiver. A caregiver and his or her loved one will manage this challenge successfully if each person is able to express directly what he or she needs, wants or can do. A relationship that allows for and respects boundaries and individual limitations can expand to include other caregivers without the risk of lessening the importance of the primary relationship that sustains the elder in the aging process.

Article from Today’s Caregiver.

VA Changes Aid & Attendance Benefit

February 1, 2019 Community Outreach, Life

Starting Oct. 18, the VA will review not just current assets, but records from the previous three years when deciding a veteran’s asset-based eligibility for VA Pension benefits — commonly called Aid and Attendance (A&A) benefits. However, transfers of assets completed before Oct. 18 will not be counted against veterans or their surviving spouses.

A&A helps veterans and their surviving spouses pay for in-home care, assisted living-, memory- or nursing care as well as medical supplies and medicines. These pension benefits are available to service members (who are older than 65) or their surviving spouses. Additionally, the service member must have been honorably discharged after at least 90 days of service with at least one of those days during a wartime period.

A&A applicants must meet limited asset requirements, which will now be a little more complicated to calculate. On the bright side, the VA raised the net worth limit to $123,600, which is the maximum Medicaid Community Spouse Resource Allowance for 2018 and is indexed for inflation. Previously, the net worth limit was not firm, but was generally around $80,000 for a married veteran.

Net worth includes assets in bank accounts, stocks, bonds and commercial or secondary property holdings. But starting this month, it will also include one year’s Income for VA Purposes (IVAP), including disbursements from annuities or trusts. To calculate IVAP veterans and surviving spouses can deduct certain unreimbursed monthly care expenses, including skilled nursing, in-home care (even if provided by a non-spouse relative), assisted living costs, and long-term care and health insurance premiums.

Net worth does not generally include the veteran’s primary residence or vehicle. However, the new rules stipulate that the residence exemption only applies to homes on two acres or less, unless the additional acreage is unmarketable because of zoning or access restrictions, for example.

A family farm could be treated the same as a luxury estate. Also, if a veteran sold his home (because he was living in a nursing home) the sale could disqualify him from receiving A&A benefits. To avoid this outcome, an estate planning attorney can show you pre-planning tools that can protect your assets and your benefits.

If a veteran or surviving spouse applies for A&A benefits and gifted or transferred assets into certain trusts or annuities in the preceding three years, a penalty period will apply. The penalty period is calculated by dividing the value of the gift by the Maximum Monthly Pension Benefit, currently $2,169.

In light of the recent changes, veterans who may need nursing or home-health services should examine their finances at least three years before they are eligible for A&A. Nationwide, the median cost of long-term care currently ranges from $3,750 a month for assisted living to $8,121 monthly for a private room in a nursing home. These costs could easily wipe out your life savings.

As part of the new regulations, the VA is strictly enforcing its requirement that veterans only work with accredited attorneys or agents. A VA-accredited attorney can help veterans and surviving spouses navigate the VA pension process and evaluate how the pension may affect the rest of the veteran’s estate plan including Medicaid and Medicare benefits, income tax, inheritance tax and other financial factors.

The rising costs of long-term care are a burden our veterans should not have to bear alone. If you need help figuring out how to manage these costs, consult with a trusted, VA-approved elder law attorney about your options.

Article from Caregiver.com.

How to be a Parkinson’s Caregiver

November 1, 2018 Caregivers, Life

As any caregiver knows, Parkinson’s disease is both chronic and progressive. It persists over a long period of time and the symptoms worsen. Often the disease has been present for many years before active care even is necessary. This fact alone can bring many challenges along the way. A loved one secretly may have adapted their life to this condition, hiding any symptoms.

When the time for care arises, a caregiver first has to take inventory of what is working and what isn’t. A caregiver may have believed their loved one was perfectly fine, and come to realize the truth is far from that. A caregiver for someone with Parkinson’s must be very organized, informed, patient and able to modify daily life to any situation that may arise.

In the latter stages, it’s important for a caregiver to take a step back and not become totally entrenched in the caregiving and uninvolved in their own life. Since Parkinson’s can persist for many years, by the time the latter stage arrives, a seasoned caregiver will be an “old pro.”

Managing Symptoms

There is no “across-the-board” standard for how Parkinson’s affects any given patient. Just as everyone is different, every person’s reaction will be unique. The most common symptoms are tremors, muscle stiffness and slow movement. These symptoms intensify as the disease progresses and alone can cause problems in daily living activities. A caregiver must be constantly evaluating what condition their loved one is in. Parkinson’s is unpredictable and a loved one may be resistant to take assistance for as long as they can hold out. This makes caregiving more complicated. However, it is their caregiver’s responsibility to help keep them, above all, safe in any environment. One important tip is to initially ask a loved one what they need, and not assume. During the latter stages, a caregiver should be familiar enough to anticipate and prepare for a loved one’s needs.

In the latter stage of the disease, movement itself becomes nearly impossible. A simple task as dressing could take a person with Parkinson’s disease literally all day to accomplish. Walking is very slow, if at all. A lack of balance causes frequent falls and automatic movements, like the swinging of arms when walking, disappear. A caregiver should try to not be frustrated, but instead, be patient, and respond with love and humor.

As the disease progresses, communication difficulties and heightened anxiety become more prevalent. In the early stages, a loved one is able to hide symptoms easily, but as the tremors and stiffness worsen, a joke about getting older may be a good cover-up for the fact that daily duties are becoming harder and harder to handle.

What can a caregiver do? Get help!

With a loved one in the advanced stages of Parkinson’s disease, it is nearly impossible to handle it alone. Whether in-home care or out-of-home, help is necessary. Whether in-home or a permanent move, options are available for caregivers to find some relief. There are many kinds of caregivers, from live-in spouses to long-distance children. No matter the caregiver, a support system is mandatory!

You, the Caregiver

The National Parkinson Foundation’s publication “Caring and Coping” divides caregivers into these categories:

Stage One: The Expectant Caregiver
Stage Two: The Freshman Caregiver
Stage Three: The Entrenched Caregiver
Stage Four: The Pragmatic Caregiver

The first two stages are filled with learning. Once a caregiver is entrenched, they are knowledgeable, prepared and “in the trenches.” A caregiver in Stage Three “gets it.” The final stage, the pragmatic caregiver, has been in the thick of it for more than five years and through it all. They know what works and what doesn’t. They see Parkinson’s disease as what is was and what it has become. They laugh at things other family members may find sensitive and painful. They have become practical, realistic and are also experiencing much personal growth.

In the latter stages of Parkinson’s, it may be hard for a caregiver to find happiness in the simple moments. The major joy-killers are the everyday tasks like bathing, dressing and toileting. It’s hard to remember who a loved one was as a person pre-advanced Parkinson’s. Sometimes taking a minute to tell jokes, share stories and enjoy a fun activity will bring back the feelings of father/son, mother/daughter or husband/wife, whatever the situation.

The National Parkinson’s Foundation tells caregivers to “hang onto your sense of self.” Regular activities and routines are also important to keep, as much as possible. Emotional and physical exhaustion will only lead to more exhaustion. Finally, a caregiver needs to see themselves beyond the car giving role. It’s essential to remember individual life goals, independent of the caregiving demands. A caregiver must take time to maintain social contacts and actually schedule respite time.

Paperwork

Paperwork can be overwhelming for the average person. For a caregiver of someone with Parkinson’s, it can be frustrating and time consuming. It’s easy to lose sight of the goal and just rush to complete the tasks. From applying for benefits to doctor’s visits and financial records, it’s a very big task to take on for any caregiver.

The National Parkinson Foundation suggests caregivers take a look at the situation as a whole, using a “big picture” approach. Seeing options as working together enables caregivers to make rational, educated decisions. This frame of mind is especially important when deciding legal, financial and medical decisions for a loved one. Take a step back, a deep breath and proceed with an open mind. The first part of the “big picture” is honesty. Don’t falsify any information on any documents. It will lead to more headaches and hassle later on by causing others to question your credibility. You want a loved one to receive the benefits he is entitled to by law.

The Foundation explains that the second part of this is consistency. When helping a loved one apply for different benefits and medical support, a caregiver must keep in mind that many programs will require the exact same documentation. The main question will be: What is a loved one’s health status at any given point? When preparing legal documents, this may be measured against different definitions, but it is important to be truthful and consistent. Use the big-picture approach to see how a loved one’s benefits will all fit together and what gaps may need to be filled.

Day-to-Day

The unknowns of the day-to-day caregiving are probably the most stressful for caregivers. Having systems in place of organization and support will make these situations seem less overwhelming.

Adapting the home environment is one of the major tasks any caregiver must take on. Whether at a senior residence or the person’s personal home, small changes can be made to avoid big disasters. Living areas, kitchens and bathrooms can be adapted to help the decreasing cognitive and physical abilities of a loved one with Parkinson’s. Make sure there are open pathways around the home and remove obstacles and unsteady rugs, decorations, etc. that may cause an accident. Put grab bars in bathrooms and even along hallways. Designate hot or cold on faucets with labels and colored tape. Leave items at chest or waist height so reaching won’t cause falls.

In addition to changing the environment, a caregiver must be able to help with adjustments on daily tasks such as dressing, teeth brushing, showering, etc. Confusion and unsteadiness make these seemingly standard tasks challenging. Help a loved one understand what is going on and proceed slowly, with care and compassion.

A very common symptom of Parkinson’s is “freezing.” Help a loved one move around easier by pretending they are walking over something, or rock very slowly back and forth to get moving again. Exercise, to any degree possible, is very important to a loved one’s health and well-being. Sitting around will only make their mind-set diminish, as well as the physical aspects.

Encourage activity, communication and involvement socially as much as possible. As the disease progresses, these things will become more and more challenging to do. It’s important a caregiver encourage it when a loved one still is able to be involved.

For caregiving in the latter stages of Parkinson’s disease, challenges will arise. A caregiver should plan ahead and anticipate problems. Have paperwork done and organized. Separate tasks into smaller, manageable parts to encourage independence. The trenches won’t seem so deep then!

Article from Caregiver.com.

November is National Caregivers Month

November 1, 2018 Caregivers, Life

“An empty lantern provides no light. Self-care is the fuel that allows your light to shine brightly.”
– Unknown

During National Family Caregivers Month, we encourage you to take time for yourself. Explore some of these resources for support as you cope with the challenges of caring for your loved one.

National Alliance for Caregiving
AARP: Resources Caregivers Should Know About
US Department of Health & Human Services: Resources for Caregivers
American Society on Aging: Organizations that Take Care of Caregivers
Rosalynn Carter Institute for Caregiving

Caregivers: Important discussion topics to have with your loved one

August 1, 2018 Caregivers, Life

A care partner is an essential, active participant with the person with Parkinson’s in their care. While most care partners are spouses, children, siblings, parents and even friends can all be considered care partners. As your loved one living with Parkinson’s becomes less independent and more reliant on your care, your role as a care partner transitions to caregiver.

As a care partner, you are an essential member of the care team supporting the person in your life living with Parkinson’s. Your role as a care partner will evolve over the years and asking questions will help you and your loved one have an ongoing conversation about how to best partner in care to encourage you both to live well.

Here are some important discussion topics to have with your loved one:

Communicate often with your loved one to help them understand and accept your concerns and desire to help and support them. Talk about how much you expect or wish to be involved in care. Care partners typically have the most frequent and ongoing involvement in the lives of people with Parkinson’s. This brings both benefits and challenges as you will often notice effects of Parkinson’s that your loved one may not be aware of. You may find yourself feeling frustrated as you encourage your loved one with Parkinson’s to do activities to help them live well that they may not necessarily want to do, such as exercising, speaking louder or attending an appointment with a healthcare professional.
Talk about how much you expect or wish to be involved in care. Transitioning from spouse, child, parent or even friend to care partner can change your relationship with your loved one with Parkinson’s. It is important to have discussions with your loved one with Parkinson’s and the rest of the care team about everyone’s expectations about your involvement in your loved one’s care and your relationship outside of serving as a care partner.
Set up rules or even agree on a “catch phrase” that your loved one with Parkinson’s can use to let you know when they feel that your guidance and encouragement may be feeling like nagging or too much pressure.
Speak up during medical appointments. You, as the care partner, are both significantly impacted by Parkinson’s and very familiar with the effects it has on your everyday lives. If your typical medical appointments focus only on the person with Parkinson’s, let the Parkinson’s healthcare provider know that you are an active member of the care team and will be contributing during the appointments as well. Writing down the three most important things that you would like your partner’s medical provider to address is another practical step to ensuring your concerns are heard by healthcare providers.

Information from Davis Phinney Foundation.

Video: Not all disabilities are visible

July 1, 2018 Awareness, Education, Life

In this video from Parkinson’s UK, people all over the world talk about their Parkinson’s.

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:

Family meetings to discuss issues and concerns
Disabling or removing the car
Filing down the keys
Placing an “Expired” sticker over the driver’s license
Cancelling the vehicle registration
Preventing the older driver from renewing his or her driver’s license
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.

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.

WPA on The Morning Blend

June 5, 2018 Awareness, Community Outreach, Education, Life

Jeremy Otte, our director of outreach & education, and board member Ron Mohorek were on the The Morning Blend on TMJ4 this morning talking about Parkinson’s and our upcoming Symposium!

Thanks to Amada Senior Care for including us!

Caregivers: Overcoming the Grief Caused by Parkinson’s

We experience anger, as evidenced when we ask ourselves the age-old question, “Why me?”

Getting a diagnosis of Parkinson’s disease can be like losing a loved one.

Grief is normal.

For Caregivers: When and How To Say “No” to Caregiving

VA Changes Aid & Attendance Benefit

How to be a Parkinson’s Caregiver

November is National Caregivers Month

Caregivers: Important discussion topics to have with your loved one

Here are some important discussion topics to have with your loved one:

Video: Not all disabilities are visible

Driving Dilemmas: Risk vs. Independence

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

Medication Management

Planning

Getting Around

Food & Drink

Communication

Sleep and Rest

Clothes

Exercise

Miscellaneous

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