Faithful Friends Respite Care

“A small act of kindness can make a huge difference in someone’s life”

In the spring of 2018, Diane Edwards and Cynthia Huling Hummel felt called to start a respite care ministry in the Southern Tier. Their desire to help grew out of an observation: that it is sometimes very hard for caregivers to find care for a loved one with Alzheimer’s or a related dementia.  They heard stories of care partners who were unable to attend educational programs, support services and other events because there was no one to care for their loved one.  The two friends moved prayerfully and carefully forward.  They decided to call their project “Faithful Friends Respite Care ” which would be a ministry to a small group of families that the two had come to know and love. 

To that end Diane and  Cynthia both completed a seven-hour respite care training through R.E.S.T. and  were certified as RESPITE CARE COMPANIONS.   Cynthia also renewed her First Aid and CPR certification through the American Red Cross. Both had background in caregiving and in the special needs of dementia care.  Diane was a caregiver for her late husband, who passed away from Alzheimer’s. Diane is a volunteer educator for the Alzheimer’s Association and also serves on the Connections Committee which plans and hosts social events for individuals with a dementia diagnosis and their care partners. Cynthia was a caregiver to her adult daughter, who had multiple surgeries over a two-year period. Cynthia was a long-distance care giver for her mother, who died of Alzheimer’s in 2014. In her work as a pastor, Cynthia resourced many individuals and families dealing with a dementia diagnosis.  Cynthia is also living with early-stage Alzheimer’s disease and serves on the National Council for Alzheimer’s Research, Care and Services.  She facilitates an Early-Stage support group in Horseheads, NY and is on the Connections Committee with Diane. 

The two made a decision to keep “Faithful Friends” small and to focus on a select number of families (5-6 individuals in the early-stages of Alzheimer’s disease or related dementia) .  They also decided that The Faithful Friends respite program would be free. 

These two faithful friends have organized outings at the Rockwell Museum and the Chemung County Historical Society.  The outings have included art activities, games, and sharing conversation over bag lunches.  The two have also helped families in other ways- helping with transportation to medical appointments and offers for in-home short-term respite care. 

The Faithful Friends Respite Care Ministry Program is NOT affiliated in any way with a religious tradition or with any Alzheimer’s organization.   Diane and Cynthia are just two faithful friends, who are trying to help to meet a need in their community.  They would say that every small act of kindness can make a HUGE difference not just to the recipients- but also to those who serve.

For additional information, please contact Cynthia Huling Hummel at revchh@hotmail.com and  Diane W. Edwards at dwe9@cornell.edu

Understanding Long Term Trauma and its Impact on Older Adults

Authored by Misty Boldt, LMSW at Lifespan of Greater Rochester

The Ursula Forem Domestic Violence Program Employment Fellowship Grant was created in 2015 honoring Ursula Forem, an employee of the New York State Office for the Prevention of Domestic Violence (OPDV).  As the grantee for the 2016 –2018 Ursula Forem fellowship grant, and an employee of Lifespan of Greater Rochester, Inc.’s Elder Abuse Prevention Program (EAPP), I have spent the last two years researching trauma, trauma in later life, and the effects of trauma on older victims of domestic violence and elder abuse.

The first year of the grant project consisted of trainings through PESI, Inc. Behavioral Health Continuing Education; consultations with local trauma informed colleagues and their agencies such as Willow of Greater Rochester, Resolve of Greater Rochester, Coordinated Care Services Inc., and Tree of Hope Counseling; and numerous academic articles pertaining to the effects of trauma on the body and the brain. Armed with this trauma-informed knowledge, I set out to explore the connections between trauma and stress levels and the health and mental health status of elder abuse victims. In my work with older adults who have experienced elder abuse, I found that high stress was a constant for the older adults who also had high degrees of trauma across their lifespan. This level of stress is known as toxic stress, coined toxic for its lasting health risks.

Bessel Van der Kolk’s book The Body Keeps the Score: Brain, Mind, and Body in The Healing of Trauma (2014) and PESI, Inc.’s on-line training The Body Keeps the Score: Trauma and Healing with Bessel van der Kolk, M.D. were instrumental in obtaining a deeper understanding of psychological trauma and the correlation to poor health outcomes in later life. Continuing education training from PESI Inc. to become a Certified Clinical Trauma Professional online training course called Evidence-Based Trauma Treatments and Interventions taught by J. Eric Gentry, Ph.D., LMHC; Robert Rhoton, PhysD, LPC, D.A.A.E.T.S. also helped to solidify an empathic view of trauma and personal trauma histories when working with people who identify as having a lifespan of trauma.

The second year of the grant consisted of creating a trauma screening tool for older adults and attending conferences and trainings where I could share the trauma knowledge and screening tool. The idea for an adult screening tool came from wanting to delve more deeply into life stressors that might affect older adults across their lifespan. The tool was created using elements of the Life Change Index Scale, also known as The Stress Test, and the Holmes and Rahe Stress Scale. The screening tool was titled after a desire to want to learn more about life event stressors, naming it Life Event Screening Tool, also known as LEST. The LEST asks several questions using trauma-informed language with the intent to identify stressors, that could be seen as traumatic depending on the individual, across a person’s lifespan over the age of 18 years. Having a better understanding of toxic stress, trauma and the intersection of healthcare, it seemed reasonable to consider using the Adverse Childhood Experience questionnaire (ACE) in conjunction with the LEST. The reasoning for that decision was based on the strong correlation identified, during the Adverse Childhood Experience Study (ACES). The study, conducted by Kaiser Permanente and the Center for Disease Control in the 1990’s, resulted in the ACE questionnaire as a standardized instrument. The ACE questionnaire measured exposure to potentially traumatic events in childhood, such as abuse, neglect and household dysfunction, to name a few. The information gathered from the joint research identified that the higher the ACE score for children under the age of 18, the higher their risk for adverse health risks later in life. The ACE is still being used with children under the age of 18, but there has been no identified research to date that reviews the risk of adverse health in older adults who have been affected by a lifespan of adverse experiences.

Using a combination of the ACE questionnaire and the LEST, the need for older adults to have a more robust support system emerged. According to Danna R. Bodenheimer (2016), without these support systems, older adults may be at greater risk of abuse. If it is reasonable to believe that a child exposed to trauma and abuse should require a stable support system to learn healthy adaptive coping strategies, the same might be true for an older adult.  In comparing an older adult’s ACE score with the LEST score, those with high ACE scores appear to have a correlation with a high LEST score. The older adult identifies an instability in their childhood through their ACE score, and high levels of stress throughout their adult lives through the LEST score. There is not, however, a reverse correlation of high LEST to high ACE.  This correlation appears to be indicative of a lack of stable support systems throughout the older adult’s life. A support system seen as unpredictable or unsupportive, could alter ideas of relationships, leaving children who have experienced adverse trauma feeling insecure in themselves and the world they live in. Like children who experience childhood adversity without appropriate relationship supports, adults in later life might be susceptible to a continued cycle of trauma, mistrust and unsettled relationships. The lack of trusting relationships can leave an older adult at risk for loneliness and isolation.

This brings us to poor health. Kathleen Kendall-Tackett’s (2013) research examines health risks for children who are victims of childhood trauma. Kendall-Tackett shows the correlation of adverse health risks for children who have high ACE scores due to childhood trauma and poor health in later in life. The lines that are drawn link poor health with instability, loneliness, and isolation. The older adult’s health is poor and is at risk to become progressively worse if their stress levels remain high. In such instances adults with high levels of stress and undiagnosed trauma often have autoimmune diseases such as Rheumatoid Arthritis and Lupus (Kendall-Tackett, 2013). Other poor health outcomes are diabetes, high blood pressure, and somatic complaints.

Without regular medical appointments and opportunities for discussion of life events with healthcare providers, older adults sometimes blame their poor health on the aging process. The older adult does not understand the severity of their ailing health and might not be open to discussing some of the identified poor health for fear of being labeled with dementia, or unable to care for themselves and possibly forced into a nursing home. The person/people assisting the older adult might be playing a role in the older adults ailing health due to stress and years of difficult family dynamics. Older adults can be fearful of losing the only support they believe they have, the only caregiver the older adult believes they can rely on due to social isolation.

The LEST was designed to look at an older adult’s life through a trauma-informed lens. Currently, the LEST is being used by the Elder Abuse Prevention Program (EAPP) at Lifespan of Greater Rochester, Inc. During the case visit with the older adult, the EAPP Social Worker screens the older adult using the LEST. If the adult screens yes to five or more of the questions, the screen is given to the Trauma-Informed Care Professional (TICP) to conduct further screens using a trauma-informed approach. Depending on the older adult’s ability to form relationship bonds, the initial meeting with the TICP could last anywhere from one to two hours. If the older adult does not deflect and can talk about their past and present relationships, including childhood history, the biopsychosocial and additional screens can all be completed within an hour timespan. If the older adult perseverates on moments in time that are especially traumatizing to them, the TICP can assist the older adult to process the moment(s), allowing the completion of the biopsychosocial assessment.

Processing trauma can take a long time, and this Trauma Informed Screening Model is not meant as a long-term counseling process. The purpose of the Trauma Informed Screening Model is to assist older adults who find themselves in disrespecting and/or distrustful relationships. Talking through prior relationships and family dynamics can help highlight patterns of risk an older adult may have had throughout their lifespan. The biopsychosocial allows the TICP to have a strength-based conversation with the older adult to reframe their situation and look for alternative options, known as goal setting. As trauma is not something that can be resolved, but needs to be continuously worked at, the goals could be to find long-term treatment or identify ways to lower stress for a healthier life style. As goals for the older adult’s care plan is identified through the biopsychosocial assessment, it is also important that a holistic view of the older adult’s emotional state is assessed. The additional assessment used in conjunction with the biopsychosocial assessment are: Geriatric Depression Scale, Generalized Anxiety Disorder scale, PHQ-9, and the Mini-Cog to screen the older adult’s cognition. The screens and information gathering through the biopsychosocial can take six to eight visits depending on how much or how little the older adults wants to share and connect during the first meeting.

Using the screens helps the TICP and older adult identify traumatic moment(s) in the older adult’s life that could have occurred anywhere from early childhood to later in their life, or small moments throughout their lifespan. The biopsychosocial information gathering uses a motivational interviewing style to guide the older adult through possible difficult memories and realizations. The goals should be realistic and achievable, such as understanding the need for boundaries and how to effectively and safely establish them in relationships; forgiving themselves for what they see as failures within their lives; and understanding what a toxic relationship looks like. These goals work to empower the older adult to take back control of their lives and gives them permission say no and stop possible abusive behavior in their current relationships.

The completion of the screens and biopsychosocial includes a write up summarizing the older adult’s goals and the TICP recommendations the older adult can keep with them as a tangible tool used with their support system. The support system is identified through an Ecomap and Genogram that is built into the biopsychosocial assessment process. With the older adult’s approval, a copy of the report is then given to the older adult and their support system, such as medical providers, community agencies, supporting family members, and anyone else the older adult feels will play an important role in helping them achieve their goals.

The goal of the older adult working with a TICP is to allow for a relationship with a resilient and stable person in their life, which up to this point they may not have had and may not have been able to recognize as lacking in their life.  The TICP is intended to help decrease the older adult’s emotional distress by lowering anxiety levels and depression symptoms using a trauma informed and strength-based approach. Research conducted using the ACE instrument identified the connection between stress and trauma and poor health outcomes. Having a TICP use specialized tools like the ACE and LEST can screen older adults for trauma across their lifespans. Assistance from the older adult’s medical providers can help the older adult and the TICP track the older adult’s goals such as a reduction in blood pressure, decrease diabetic symptoms, or ameliorate other adverse health conditions that could be exacerbated by undiagnosed trauma identified by the TICP.

References

Bodenheimer, D.R. (2016). Real world clinical social work find your voice and find your way. Harrisburg, PA: New         Social Worker Press.

Curran, L.A. (2013). 101 Trauma-informed interventions: Activities, exercises, and assignments to move the client   and therapy forward. Eau Claire, WI: Premier Publishing Media.

Gilgun, J.F. (2005).” Evidence-based practice, descriptive research, and the resilience-schema-gender brain             functioning (rsgb) assessment”. British Journal of Social Work 35 (6): 843-862.

 Holmes TH, Rahe RH (1967). "The social readjustment rating scale". J Psychosom Res. 11 (2): 213–8.a

Kolk, Bessel van der. (2015). The body keeps the score: Brain, mind and body in the healing of trauma. New             York, NY: Penguin Books.    

Kendall-Tackett, K. (2013). Treating the lifetime health effects of childhood victimization. Kingston, NJ: Civil Research Institute.

How Caregivers Can Take Care of Themselves

For many caregivers, everyday tasks can be physically, mentally and emotionally draining.  Taking care of someone else's needs for much of the day can take a major toll on how you feel, and it can leave very little time for you to take care of yourself.  However, it is imperative that learn to practice self-care in order to avoid becoming overwhelmed for burned out.

One easy way to feel better is to combine physical and mental fitness. This means finding a workout that allows you to focus on inner peace, to have fun, or to get social with someone you enjoy spending time with. Joining these activities will keep you happy and relaxed while doing something great for your body, and they'll help you stay motivated too.

Here are a few of the best tips on how to practice self-care when your job is to take care of someone else.

Know the Signs of Stress

According to the Mayo Clinic, signs of caregiver stress include:

• Feeling overwhelmed or constantly worried
• Feeling tired often
• Getting too much sleep or not enough sleep
• Gaining or losing weight
• Becoming easily irritated or angry
• Losing interest in activities you used to enjoy
• Feeling sad
• Having frequent headaches, bodily pain, or other physical problem
• Abusing alcohol or drugs, including prescription medications

If you are experiencing any of these symptoms, it may be time to consider getting some help.

Delegate

Let's face it: As much as you may try, it's just not possible to do everything yourself. Attempting to shoulder every responsibility  that comes your way will only increase stress and anxiety, so learn how to delegate in order to take some of the burden off your shoulders. You might ask a friend to an errand for you or hire a dog-walker to come and take care of your pup while you are busy. This is a great way to get your dog some exercise an d attention when you have a long day ahead of you.

Relax

When you do get some time to yourself, make sure it's relaxing. Turn off electronics for a little while and read a good book, watch a movie, take a long hot bath or practice a hobby that eases tension, such as knitting or painting. Taking time for yourself isn't always easy, especially when you have a hundred chores waiting for you, but they'll still be there when you are ready to tackle them.

Find the Right Workout

The right workout can keep you fir and happy for years to come, so try a few different things to see which you might like best. You might start a swimming routine, or practice yoga; long walks with the dog might be your thing, or playing a sport. Whatever you choose, make sure it's something that brings you joy. This will keep you motivated and make the workouts fly by. Plus, these are all great activities for reducing stress because they promote mindfulness, or focusing on the present.

Get Support

Caregiving can take a toll on you mentally and emotionally, sometimes it's important to be able to talk about your feelings and worries. Talk to a counselor, therapist of support group and find others who have been through the same things. Sometimes, having an outlet can help with feelings of stress or anxiety and can keep you going even when times are tough.

About the Author

Harry cline is creator of NewCaregiver.org and author of the upcoming book, "The A-Z Home Care Handbook: Health Management How Tos for Senior Caregivers"  As a retired nursing home administrator, father of three and caregiver to his ninety-year-old uncle, Harry knows how challenging and rewarding caregiving can be. He also understands that caregiving is often overwhelming for those just starting out. He created his website and is writing his new book to offer caregivers everywhere help and support.

Welcome to the New Universe: The Intersection of Aging and Addiction

Oh,how the world has changed. Wasn’t it just easier in the old days (around 1900) - when men died around the age of 44 years of age and women around the age of 46. Life was much simpler. You grew up faster, you took on more responsibilities for family earlier and then you died. Could it get any easier than this? And then medical intervention and prevention strategies had to intervene - driven by scientific breakthroughs. And now look at the outcome - extended spurts in longevity with approximately 10,000 per day turning age 65 and the fastest  growing demographic are people turning age 100. Now, it is projected that on average men live to the late 70’s and women to the early 80’s - on average. The fascinating thought is that the longer you live - the chances are that you will live longer. So, if you reach age 40 - chances are you will live to  age 60 and if you live to 60 - the probability is that age 80 is in your future - and if you live to age 80 - “Hello, 100!” - is very feasible. What a gift! But with every gift comes the task of  ‘unwrapping’ - and here is what we find when we focus on the landscape of increased longevity - that yes, people are living longer - however, they bring to this arena new issues and concerns. You see development is never over. So, the problems, concerns and needs of the individual continue on - throughout life. And today, we have a new cohort that has pressed the ‘envelope of time’ - and with them they bring new concerns - that at one point were only issues being addressed by a much younger group - for instance, substance use and addiction. 

The reality of substance use and addiction can be traced to the early accounts of the human species. Early historical accounts address the issue of substance (alcohol and drug derivative) being introduced in religious, medical and societal practices and ceremonies. Modern day accounts have typically integrated themes, narratives and stories about abusive patterns of drug and alcohol use in adolescent and young adult developmental stages. But what we all know, as individuals, family members and practitioners is that maladaptive behaviors (driven by substance use and misuse) occur well into adulthood. However, the new revelation is that these patterns can present themselves not only into adulthood but into the late stages of adulthood. The outcome is a new cohort requiring specialized treatment, as the traditional intervention techniques were crafted for the adolescent and young adulthood cohort.

Mary, age 63

Mary is a professional woman - now retired. She is a wife, mother and grandmother. However, she is also lost. She was forced to retire - without planning. Now with no opportunity to employ her skill - and her children /grandchildren living 500 miles away - she begins to spend her time sullen and drinking excessively. When rehab treatment is recommended - she balks...and then eventually agrees. She arrives at the Treatment Center for the intake process. She is then introduced to her ‘treatment partners’ - two 22 year old female Crack addicts. Mary becomes indignant and leaves the Treatment Center - 1 hour after she arrives. She is angry, very angry - she is flooded with thoughts of: “what do I have in common with those girls?” Mary went home and continued to isolate and abuse alcohol excessively. Six months later - she was charged with a DWI; 9 months later she died. 

Charlie, age 68

Charlie is a very successful CEO - now out of work. He was discharged, by his Board of Directors, due to his opioid addiction. First , it started as a pain medication - for a back injury. Quickly, he was using pain relief medication in an abusive pattern. He is presently on Suboxone - and desperately looking for a Treatment modality that: “understands who I am - my experience - I need help that appreciates my value and worth as a person”. 

Mary and Charlie are the tip of the iceberg. As people continue to age and live longer lives - the patterns of behavior that were predominantly nestled in early development are appearing across the lifespan. As a Field, we better be listening. We are completely kidding ourselves if we believe that standard treatment interventions (crafted for adolescents and young adults) are appropriate for older adults. To continue to introduce older adults to interventions that are not ‘age-sensitive’ is a form of benign malpractice - to say the least. One intervention does not meet the needs of all individuals. This is a new territory and one where we need begin some ‘fireside chats’ to shape dialogue, practice and policy. Welcome to the new universe - we need to act accordingly.

 www.drltforce.com

Supporting Youth and Young Adult Caregivers

Every characteristic used to describe a hero can be applied to adult kinship caregivers, but for them to acknowledge these attributes can be nearly impossible. After asking why they decided to take on the extra responsibility, the response is either an inquisitive stare or “I’m all they had.” The role, as noble as necessary, is not viewed the same when roles are reversed. Youth caregivers often go unnoticed

Because they are my grandchildren and I have unconditional love for them, no one else in the family stepped up and I didn’t want to see them in foster care. I didn’t receive any financial assistance, I took them for love but wondered privately how I was going to care for them. I became homeless for three years before finding stable housing, no one wanted to rent to a senior citizen raising grandchildren.                                                               Gail Fedele, 67, Bronx

Younger caregivers offer emotional support and learn to navigate the red tape of social services at young ages without acknowledgement or reward. In some cases, the tasks are treated as a debt paid for saving the care-receiving youth from unwilling or unable biological parents, especially when lines are blurred and the youth caretaker is now a young adult. Caregiving roles aren’t stagnant, depending on present need, both parties should work to support and nurture the partnership. The feeling of being needed should be balanced with appreciation and a real sense of support.

I missed out on growing up as a little girl. As early as the age of 9, I was changing diapers, feeding my sister, making bottles, and doing hair. I didn't have the chance to play with my siblings as siblings; I always felt like the second mom. I remember one time when my mom had my little brother in the stroller and she wanted me to take him with me and my friends, so I'm around 13 or 14 years old with a baby stroller hanging with my friends. This experience made me grow up fast. I felt like I was grown. So now I see why sometimes I play around or act goofy or make jokes because I really didn't have a childhood. I would even go food shopping for the house...it was a bit much, but I don't blame my mom and/or have any hurt feelings towards her.                                                            Stacey 45, Brooklyn

While older adult caregivers receive assistance in managing the generational parenting gap, the youth feel the results of their guardian’s learning curve in a rapidly changing world. Curfews, romantic relationships, technology, and gender identity are just a few common themes dividing traditional families; in kinship homes, the youth and older adult can feel as if they are on feuding planets.

Everything I did my great grandmother questioned or considered weird because I wasn’t into sports and outside. I wanted to stay home and play games on my computer. My brothers and I needed more pocket money, even while I was in college, I would get $5 a day which would lead to us getting money in questionable street ways. It wasn’t a budgeting issue, she didn’t consider the value of the dollar changed, she thought $5 was more than enough.     Derrick, 26, Bronx

I felt stupid because I wasn’t able to help them with their homework or be on top of their social media profiles due to the generation gap. For health reasons I couldn’t ride bikes with them, go on roller coasters… but I emphasized hard work and academic excellence and I am very proud of who they are today.   Gail Fedele, 67

The reasons are systematic, often socially inherited and directly stem from poverty, untreated mental health issues, and lack of focused federal legislation. Local government and social service/advocacy agencies have worked to create and change policies and identify these youth caregivers, but cultural norms, recent mistrust of government, and misguided remedies seem to be barely making a dent in easing the trauma associated with youth caregiving responsibilities.

Some examples are;

- college bound teens limiting their school choices due to caregiving responsibilities.

- pre-teens refusing to accept a caregiver role at the expense of their childhood.

- resentment of care receiver for limiting their childhood experiences.

- poor school attendance due to long term medical conditions of the guardian care receiver.

 Once we moved into the Grandparent Family Apartments I started taking things more seriously. The youth programs had resume building workshops, networking tips, job placements...I started to think ahead and see the value of education. Before I moved here I was heading for a life of crime.                                                   Derrick, 26, Bronx 

 Instead of only approaching the kinship family structure as a deficit, let’s create safe spaces to build on what the families are doing right and then we can challenge harmful habits.

- Open door policy. Not all clients feel comfortable in groups or are able to commit to an appointment

- Family advocate -  make stakeholders aware of challenges faced by the caregiver.

- Recreational respite focused on joy not as a distraction but to instigate a lifestyle shift.

- Evidence based parental practices on self-care, positive family interactions, and delegating responsibilities associated with caregiving.

- Vet all referrals for scheduling flexibility and cultural sensitivity.

- Peer led support groups that inspire, empower, and hold participants responsible for best practices and celebrating successes.

- Kinship housing facilities to prevent homelessness.

 Present and former youth caregivers are ready to speak their truths to inform social service influencers of the private barriers families face. As a community, we must make sure their stories are included when kinship caregiver support is discussed and future policies are implemented.

  Damond Haynes is the Youth and Young Adult Services Program Manager for PSS and an Anti-Bias Practitioner.

 PSS, founded in 1962, is an innovative, multi-service agency working for New York City’ older adults, caregivers and their families. PSS creates community and builds the capacity to thrive by delivering vital tools, programs, and resources.

For more information please visit our Website: pssusa.org  or Facebook: https://www.facebook.com/pssnyc/

Mental Illness and Addiction - A Caregiver's Message

Waiting for the other shoe to drop, this is the way I live my life.  I am a caregiver.

Several weeks ago, the phone rang, it was my youngest daughter, hysterical, because her older sister had just been arrested, handcuffed and put in a police car in front of her, her 3-year-old daughter and her sister’s 3-year-old daughter.  Another brush with the law, turned bad. Yes, I ultimately paid the bail but I let her sit in jail overnight, detoxing from heroin. I didn’t sleep. Sleepless nights can be a way of life for caregivers.

My eldest daughter began to experience delusional thinking at the age of seven, the years rolled by with daily challenges, violence, hospitalizations, out of home placement and multiple interventions. I dare not even calculate the money spent on her behalf. Ultimately, she has received nine mental health diagnoses.  I was a single mother – her father mostly absent due to his own addictions. Today she is 27 years old and the mother of my 3-year-old granddaughter, it seems that my caregiving journey will never end.

A colleague recently told me that taking care of family is as natural as breathing out and breathing in.  Not so, when faced with behaviors and thinking that you cannot possibly understand. No different than caregivers who are faced with the behaviors and delusional thinking of someone stricken Dementia or Parkinson’s disease.  Too often, we think of caregivers only as those caring for the elderly however, that thinking is misguided.

In these uncertain days of an epidemic opioid crisis, record gun violence and terrorism, caregivers are often born in an instant. Unprepared, shocked, their lives turned upside down.  They are the lucky ones – their loved one survived.

In my small family, two of our adult children have experienced the heroin overdose and death of very close friends. In my daughter’s case, this experience pushed her over the edge, she turned to the very drug that killed her boyfriend.

I have experienced what it’s like to be a kinship caregiver when my daughter appeared at my door at 10:30 on a rainy October night, handed me her 18-month-old daughter and said, “I can’t do this anymore, I’m leaving town.”  I cared for my traumatized granddaughter for 5 drama filled weeks, I was 56 years old, I was very tired. Again, sleep eluded me.

I am on alert 24/7 – knowing that the next time the phone rings, I could be picking up the pieces again.

My simple message is this, Caregivers are everywhere. If you see someone with a long term chronic condition, victims of violence, children and adults with mental health and addiction issues, people with lifelong developmental disabilities, you will find caregivers.  Caregivers who love, who struggle, who need support, information and advocacy and above all, acceptance and understanding.

Today I see a glimmer of hope. I have seen my friends fall way and people very close to me shut her out because they have seen the pain she has caused herself and her family.  However, she is my daughter and always will be.  I don't always like or stand by her choices, but I love her and I always will.

Caregivers of children and adults with mental health issues, with drug addictions – we cannot  be silent, we must not hide our heads in embarrassment, we need tell our stories, we need to help each other, we need to stand up and be heard by our legislators our communities. Our stories can make a difference, tell yours!

Every one of us need to look around, at work, in your faith communities, in your own backyard, there are caregivers.  Reach out, extend a loving hand, we all need each other.

Written by Doris Green - NYSCRC Director

Mindfulness and Caregiving

“Your search resulted in 1,790,000 results”. What search? you wonder.

“mindfulness & caregiving”

Is there really something to this?

Can it really make a difference in the lives of caregivers?

Is it brainwashing or new age touchy feely nonsense?

 One thing is for sure. It isn’t anyone else’s “get rich quick” scheme. Mindfulness doesn’t have to cost anything. As opposed to other strategies that range from inexpensive and affordable (like music therapy or aromatherapy) to outrageous and inaccessible for the average caregiver (like weekly spa visits or housekeepers), practicing mindfulness only involves you and yourself. Anytime. Anywhere.

 I had the opportunity to participate in a Train the Trainer program developed at Vanderbilt University in October. The intended and ultimate audience for this program would be parents of children or adults with developmental and/or intellectual disabilities. I have always had a very open mind to alternative methods of healing and coping. But I wondered what this training would offer to make it something that caught the attention of the Developmental Disabilities Planning Council in the state. It offered, quite frankly, a lot.

After the two days of mindfulness training, I was certain of two things. One was that I was not yet qualified to lead the class. But I was even more certain of was that I wanted to become practiced enough so that I could share this technique with others. The week after I attended the MBSR (Mindfulness Based Stress Reduction) class, I took it on the road. I had the opportunity to travel and visit people that I didn’t often see, and to stay in places that were unlike the comfort of my small town. Any, and all, of that can spike anxiety for me.

Enter mindfulness.

The first thing I did was to commit to listening to mindfulness tracks twice a day. I listened once in the morning and once at night for 5 minutes each. I added breathing, well I was breathing anyway, but I paid attention to my breath when I felt myself getting nudged into conversations or situations that increased my anxiety. What I really liked was that no one really had to know. I didn’t have to sit down, cross legged on the floor and close my eyes and chant “om”. I simply took the opportunity to notice. Notice that generally when I am faced with a conversation that derails me, I can feel my muscles contract, my lips purse, my blood pressure increase. And I was able to bypass that reaction. As a result, I had more fun and more enjoyable conversations than I may have otherwise. 

What the study at Vanderbilt showed were the following outcomes “…reductions in stress, depression, and anxiety, and improved sleep and life satisfaction, with large effects in depression and anxiety.”[i]

To read more about MBSR and how it may help reduce stress in caregiving, you can sift through the 1,790,000 results on google, or you can start here, where I did, with the program at Vanderbilt University https://healthandwellness.vanderbilt.edu/news/2017/03/mindfulness/. This link is to an employee and wellness component of Vanderbilt, but I like it because it has a few videos to walk you through mindfulness right away.

In the near future this model will be offered throughout NYS through the ProActive Caring Initiative and The Center on Aging and Policy. NYSCRC will keep you up to date on this and other caregiver programs to assist in making life a little easier for those in the caregiving role.

[i] Reducing Distress in Mothers of Children With Autism and Other Disabilities: A Randomized Trial

Elisabeth M. Dykens, Marisa H. Fisher, Julie Lounds Taylor, Warren Lambert, Nancy Miodrag.. Pediatrics. July 2014.

Respite and Medicaid Long Term Care

Medicaid Managed Long Term Care (MMLTC) programs provide community based care services for people with long lasting health problems or disabilities. These services are paid for by Medicaid.

In many cases - access to these services assist the care receiver AND the caregiver.  Often allowing scheduled time off or the ability to go to work everyday and still keep a loved one in the community.

Many people believe that they do not qualify for Medicaid because their monthly income is above the Medicaid allowable limit of $825.

The answer: 

POOLED SUPPLEMENTAL NEEDS TRUSTS. 

The purpose of a pooled trust is to shelter excess income (also referred to as a "spend down") so it is not counted by Medicaid, thereby making a person eligible for Medicaid and the Managed Long Term Care Programs.

Medicaid is a health insurance program for the poor. In order to qualify, one must have income and assets below a certain limit. For a single elderly or disabled person in NY in 2017, these limits are $825 /mo. of income and $14,550 in total assets. The income limits for people disabled, age 65+ or blind). Due to the high cost of living and medical services , many people find that they are barely scraping by and considered "too rich" to qualify for Medicaid.

Fortunately, by using a pooled trust to shelter excess income - Medicaid eligibility is possible.

 The monthly spend down or excess income is deposited into the trust, the trust can then pay monthly bills, such as rent, mortgage, taxes, cable, phone, utilities etc.  The disbursements from the trust must ALWAYS be for the sole benefit of the trust participant.

A pooled trust is a trust established and administered by A Non - profit organization. A separate account is established for each beneficiary, but for the purposes of investment and management, the trust pools the money of each participant.

Caregivers can benefit greatly by helping their loved ones qualify for Medicaid using a trust. By getting help into the home - caregiver burden can be  dramatically reduced.   

Medicaid Managed Long term care services include: 

Health Services - nursing, home health aides
Personal Care - Help with bathing, dressing and household chores.
Adult Day Health Care
Social Day Care
Nursing Home Care
Specialty Health - Audiology, Dental, Optometry and physical therapy.
Home Delivered Meals
Personal Emergency  Response systems and Transportation to medical appointments

For more information contact:

New York Medicaid Choice
1-888-401-6582\TTY 1888-329-1541

Click Here For a complete list of Pooled Supplemental Needs Trusts in New York