My wise Korean friend JungJa and I had a good long talk today.  She’s lived in this country since she was 19 and has an Anglo-American husband, so she has an insightful perspective on cultural issues.  She’s concerned, as we all are, about how elders are treated in this country, especially when they move into facilities.  Though she didn’t understand these things at all when she arrived here, her native country as it modernizes is just beginning to move in a similar direction.

Today I brought up with her how routinely surprised I am that a chunk of the visiting families at my mom’s memory care so often seem to have tunnel vision — they can only see their loved one as they walk in for their visit — have no idea what the other residents’ or caregivers’ names are, how they live, or what they love.

If these visitors lug in a big box of chocolates, a huge bouquet of roses , a squirming puppy, or a cooing infant, they don’t seem to notice how many of the residents see them walking in and want (and desperately need) to share in that joy.

There are thankfully always some wonderful exceptions to this who really stand out.  Some family caregivers routinely interact with people they come across, volunteer their time to help, and pass their babies and gifts around without a thought — all of which they give more generously and spontaneously than I could ever do myself.

Others do as much as they can — sometimes visiting privately, and other times including a small group or a few closer pals of the resident.

This isn’t about judgment, or to make tired caregivers pressed for time feel guilty about not doing more.  Quite the opposite, for several reasons.  First, my philosophy about people is that almost everyone at any given time is doing the best that s/he can, even if it appears otherwise.  Secondly, I’ve found that when I challenge myself to bring a little extra something from home to share with other residents, my mother and I benefit too.  It’s less stressful, a lot more fun, and the energy is contagious.

Another major unforseen great gift from this has been that I keep meeting other family members through my interactions with their parents, and we’ve started to exchange information and create our own little support group (mostly via email).  We update each other on each other’s parents’ status after visits, advocate for needed changes at the facility, and vent privately as needed about the many stressors that surface in the week of a caregiver.

It’s been a huge relief for us to know that if we have to go out of town, there’ll be at least 3-4 pairs of watchful visitor eyes on our parent, at least for a few minutes.  It’s made a dramatic difference in their quality of care, too, because any unmet need for the residents we’re keeping close tabs on gets reported to the caregivers by any one of us when we’re there.  And once we got into that habit, we started attending more to residents who have no family.  It’s a pretty contagious awareness and attitude, and our culture needs it a lot more.   Being a bit nosy isn’t always a terrible thing!

Though I’m naturally curious about people, their names, and their lives, and do keep up on that information at Mom’s place, the sharing of my visits doesn’t always come naturally to me.  There are times that it just doesn’t work, too.  Intimate, private visits definitely have their place and benefits, but I’m often left wondering why we as a culture have that tendency to want to hole ourselves up, not talk to other families or residents- keeping both our suffering and our good times all to ourselves.

My friend JungJa calls this the American "shyness".  When I asked her what she meant by that, she said that we’re so individually focused as a culture that we don’t feel other people aren’t "our business", and vice versa.  As I see it, keeping to ourselves too much is a cultural disease that’s causing unnecessary strain on everyone, and endangering our quality of life all around.

When we "look the other way," in our neighborhoods, or in a senior facility, we’re denying ourselves and others a greater sense of safety, belonging, and respect — a sense of community that we all ultimately need, like it our not.

Personally, I can be quite an introvert and even a hermit — especially in winter, so I’m speaking from experience when I talk about these isolating tendencies.  Probably a big reason why I blog and why I recently just gave in and finally joined Facebook is that I feel best with lots of alone time, but do really want to connect with others.

How do you feel about these issues?  What are the small, quiet, or maybe more dramatic ways that you create community as a caregiver for yourself and others?

Margaret Massey is a gardener, herbalist, crazy cook, part-time teacher, bike commuter, cat mom, caregiver, and a big fan of Peace Pilgrim, Wendell Berry, Thich Nhat Hanh, and Pema Chodron.  Margaret writes her blog, The Dopamine Diaries, with the goal of providing a down-to-earth, spunky and humorous glimpse at the heartache and joys of witnessing life with dementia and Parkinson’s disease through her mother. She currently lives in Wisconsin with her bike-happy husband, two spirited cats, and many, many plants.

November is National Family Caregivers Month. This month's Caregivers Blog has been reprinted from the 2011 Fall/Winter Parkinson Report, which, in honor of this special month, focuses on the caregiver.

Here’s an eye-opening statistic from the National Family Caregivers association: more than 29 percent of americans provide care for a chronically ill or disabled family member. Furthermore, about 23 percent of caregivers are age 65 or older. Certainly, if your spouse or loved one has a chronic illness like Parkinson’s, the time to begin preparing for this role is before disability or frailty becomes an issue. Jane Davis, who has been a caregiver for her husband for several years (see story on page 8), recognizes that caregiving is a tough job. That’s why she encourages all who care for others to stay committed to their own health and well-being from the very start.

• Surround yourself with support. For Davis, joining the WellSpouse™ association (www.wellspouse.org), a community of spousal caregivers, provided much needed support. “They tell me what I need to do now as well as how I should prepare for the future,” Davis said. “I could call them in the middle of the night, and they would listen, and that means the world to me.” Reach out to other people who are experiencing what you’re going through.
• Don’t give in to self-pity. It’s normal to be upset and even feel burdened when you first become a caregiver. That’s why you should give yourself time to adjust. “But don’t crawl in a hole and stay there,” Davis said. “You need to find ways to make life better, not only for your spouse but for yourself as well.” Start doing something you enjoy every day. If possible, join a yoga, tai chi or art class with your loved one. Find ways to stay connected and ease stress.
• Find a mentor. Realize that your role as caregiver will change over time and that it’s a continuous learning process. Having the guidance of someone who has already been through what you’re going through will have a positive impact on your life. By helping you face challenging situations and showing you how to rise above them, a mentor can help you stay strong. look for role models among people you know.
• Express yourself. “as a caregiver, bottling up your emotions can backfire,” Davis said. “Just cry, release it and move on. Then it doesn’t paralyze you and keep you stuck. But the key is to move on from it, because you can’t let those emotions encompass everything.” There’s no one best way to process your emotions, but try to figure out what will work best for you. That may be getting thoughts and feelings down on paper or talking them out with a therapist.
• Hire help. “You need to be there for your loved one, but you also need to maintain your own identity,” Davis said. “You have to make a conscious decision to live life.” Find someone to relieve you of your caretaking duties for a couple of hours a day or week. Then go do something that’s uplifting.

This is Fay Mikiska, the creator of the CaregivingTool, which is an alternative for the 93% of the U.S. population that simply can not afford to have an agency deal with hiring caregivers.

Oddly enough, I don’t consider agency home health care to be competitors in this industry because we serve different markets and different purposes. What agencies offer are people who are are available to serve your needs when you need them in a moment’s notice. Believe me, that is a tall order to fill. You try to keep skilled and trained help employed with enough hours to sustain a living when scheduling is so uncertain.

Another thing consumers overlook when comparing the cost of agency care verses private hire is the extraordinary costs of payroll taxes and insurance that doesn’t get mentioned in a worker’s hourly rate. Agencies pay all the hidden costs that accompany any other small, owner operated American business. That’s one of the bigger disappointments to owning your own business—you quickly become tax collector and bookkeeper for the government and insurance companies.

But your home is not a factory. Your loved one in need of care is not a commodity. The caregivers you hire and supervise are not in a career advancement setting. And the last thing you should have to concern yourself with is playing tax collector for a non-commercial, non-profit life situation that you are simply trying to survive.

Fay Mikiska is the author of the CaregivingTool: For Managing Your Caregivers and Repair & AfterCare: For Post-Op Home Recovery. She has been a caregiving recipient for over 27 years. She was born in 1956 and calls Midtown Sacramento her home. For more information about the CaregivingTool, please visit http://caregivingtool.com/.

When using paid caregivers, it is important to be systematic about recruiting, interviewing and hiring new caregivers because it is expensive to train a new worker and exhausting to become familiar with a new person being in your home. Furthermore, because of the unstructured environment and casual management style associated with caregiving, the job can be attractive to those people who are not qualified to work elsewhere.

1. Start out with good organization.
The first step is the hardest: be attractive to potential caregivers. Good organization with minimal chaos should already be in order. Good workers require good role models; if all they know is a sick boss who is always laid up on the sofa, they are likely to do the same. Using a binder or notebook and a friend to volunteer, write lists of your needs and preferences. Include information about your condition, treatment, medications and interests or hobbies. Also write down your expectations of a caregiver and what their responsibilities are to be.

2. Recruit students or hobbyist seeking to better themselves.
The number one most important task of any worker is to show up for work. One disadvantage to the job of caregiving is that the work environment is casual and that sometimes spills over into attendance. Therefore, to find a caregiver who will show up it is best to look where other employers look – colleges and other service organizations where people volunteer to show up.

3. Allow the caregiving job to be your worker’s secondary interest.
Since caregiving is not a career-oriented job, you may have to make compromises in order to attract quality workers to be your caregiver. When your caregivers have other interests such as school or a sports activity, make accommodations in their schedule so that they have the opportunity to achieve their goals. Consider flexibility in scheduling to be your #1 asset in managing your caregivers.

4. Diversify your help. Do not depend on any one single caregiver for your care.
This tip offers twofold advice. Firstly, if your caregiving needs require a substantial number of hours, avoid being any caregiver’s sole source of livelihood. Your health condition should not be commodity that anyone can exploit and this is more likely to happen if you do not diversify your caregivers. Secondly, with several caregivers, you are more able to accommodate the special interests your other caregivers have without having to sacrifice your care.

5. Offer your good caregivers a finder’s fee for recruiting new caregivers.
When you have a good caregiver, they often associate with other good people. Your best source for new caregivers is right in your own living room. Offer your established caregivers financial reward for locating a new hire. If the new person works out for at least six weeks, a finder's fee has been earned. If the new person doesn't work out, you lose nothing. The advantage to engaging your established caregivers in finding future coworkers is they have a vested interest in a successful outcome.

6. Try to find candidates whom you share common interests.
When hiring caregivers, it is very important for safety reasons to conduct a telephone interview before having the candidate come to your home. In the phone interview, ask the candidate what are their hobbies, interests and life goals. The manner in which the person answers this question will let you know if they are compatible with your lifestyle. It is not imperative for you to share the same interests as your caregiver but it certainly makes the time spent together more meaningful if you do have something in common.

7. Interview several candidates before making a hiring decision.
Before conducting any interviews in your home, ask a friend or family member to be present. Doing this not only ensures your safety but it also gives you another set of eyes and ears to better judge the candidates while you engage in the interview. Afterwards, ask for their observations, insights and opinions. Be mindful not to be impulsive by hiring the first candidate you meet no matter how desperate you may be for help.

Fay Mikiska is the author of the CaregivingTool: For Managing Your Caregivers and Repair & AfterCare: For Post-Op Home Recovery. She has been a caregiving recipient for over 27 years. She was born in 1956 and calls Midtown Sacramento her home. For more information about the CaregivingTool, please visit http://caregivingtool.com/.

essence n. The intrinsic or indispensable properties that serve to characterize or identify something

This week I had the opportunity to participate in the Northeast Ohio Activities Professionals (NOAAP) conference.  The conference title was “Cultivating Culture Through Wellness,” and  topics  included: stress management, therapeutic dancing,  and the power of touch . Spending a day in such a fun and nurturing environment made me realize why I am often drawn to the activities professionals at the skilled nursing facility where I occasionally work . A group of individuals, who are creative, artistic, and fun, seemed a good fit for an introduction to Voice Aerobics ™.

One of the most interesting and entertaining speakers of the morning was an aromotherapist. She talked about the therapeutic properties of essential oils, and their predating the development of most pharmaceuticals so widely used in our culture. She spoke about the role of scents and smell in activating the limbic system of the brain, evoking memories emotions, and mood. With dramatic flair, she discussed the Latin derivative for the word “essential” or “essence”, and while doing so, made me begin to think about voice, as the essence of the individual spirit.

The day following the  NOAAP conference, and after speaking to a Parkinson’s support group,  I  gave further thought  to why the essence of an individual  is so linked to their voice. Similar to a scent  that evokes a quick memory of a person or place, the sound of one’s voice seems to also evoke reactions and responses from us that are quick and visceral. Beyond the message of the words, we respond and react to the pitch, the timbre, the tone, and when there is the absence of one’s voice due to illness or injury, it can make us feel abandoned, and  that a body, alone, will somehow not do.

Parkinson’s classification as a movement disorder draws a great deal of attention to managing the physical symptoms such as tremor and stiffness. This is understandable since on a day to day basis mobility issues can be problematic for individuals with the diagnosis. But if movement is improving, and voice fading, than the essence of the individual is also beginning to  fade. The husband who is walking next to his wife, but now with words that are inaudible, is fading from the relationship.

It is no wonder then, that improving or in some instances helping to restore voice, has become for me my work and my mission.  The need to discover and develop ways to preserve and strengthen voice that are fun was reinforced to me this week as I moved, hummed, and played among the activity therapists. Preserving and improving voice as the essence of who we are, I hope was the take home message to those who attended the Parkinson’s support group meeting, with a call to take action.
 

Mary Spremulli, MA, CCC-SLP resides in SW Florida, where she holds a speech- language pathology and nursing license with the mission of enlisting individuals in their treatment, and helping them express their personality & spirit through voice. She is founder of Voice Aerobics, LLC, a private practice, and is the author of Voice Aerobics DVD™, Voice Aerobics Grand Slam ™, and Voice Aerobics™ Songbirds CD, voice and exercise programs. The Voice Aerobics™ family of products blends the art and science of voice therapy into fun programs designed to be used independently by patients, and which may maximize function and reduce speech and voice symptoms associated with Parkinson’s Ms. Spremulli has worked in the health care field for over 25 years, and has lectured nationally and internationally on health related topics. Ms Spremulli has published in the area of Clinical Ethics and Patients Education. For more information, please visit http://www.voiceaerobicsdvd.com or http://voiceaerobicsdvd.blogspot.com.