Caregivers come in all flavors and use their talents in many different situations.  Nannies comprise a special type of caregiver who provides loving, yet disciplined, care to our children. Just like caregivers for Seniors, chronically ill or disabled loved ones, Nannies need support, too.

Support groups for caregivers are a great way to vent, to meet others who understand what you are going through, and to share insights and tips in order to make caregiving a smoother journey.  The ideas below can be applied to all caregiving support groups.  If you belong to a support group in your area or online, it would be great to share these tips.  Of course, you could start a group of your own using them as your guidelines!

Thank you, Nanny Jobs, for contributing this useful post!

 

 

 

 

 

 

 

 

 

10 Ideas to Incorporate into a Nanny Support Group

Republished with permission

If you are considering starting a nanny support group, you may be trying to decide what the group needs to look like. You want to offer support to other nannies, but at the same time you want it to be more than just a couple of hours each week where people get together and complain about their employers and the children they care for. There are many proactive and positive components that can be integrated into a support group which can make the group truly useful. You can start with some of these ideas, and as the group matures, add in others.

 

1.  Mission statement – Groups that adopt mission statements have a clear idea of their purpose and are therefore apt to function more effectively. A mission statement guides the group in their processes and establishes ongoing goals. Ideally, the mission statement will be created by the members of the group so that everyone will have a sense of contribution and, as such, a stake in carrying out the mission.

 

2.  Opening activity – As the group begins to grow, there will most likely be new members coming in from time to time. Creating some kind of opening activity or ice breaker so that people can be introduced to one another is one way of helping people to feel more comfortable in the group. Have name tags or table tents with names on them so people can put names with faces.

 

3.  Pledge of confidentiality – There will no doubt be things discussed in the meetings that should stay within the confines of the meeting. Most support groups have rules of confidentiality, and this group should be no different. Members of the group should understand that the discussions that go on there will not end up as town gossip. Confidentiality is paramount to the group’s success.

 

4.  Monthly topics – Each month the group can decide what topic they would like to see discussed or if there is a compelling speaker they would like to have brought in. This feature of the meeting will keep members engaged and enhance their skills as they learn new methods of dealing with tough issues or better ways of doing certain things. Group members or outside speakers can present the topic of the month. Some of the employers may have expertise in a subject that they can share, and many will probably present voluntarily.

 

5.  Mentoring – Encourage mentoring within the group. The nannies with the most experience should be encouraged to share their knowledge with their less seasoned peers. This practice will also help in discouraging cliques from forming within the group.

 

6.  Sharing sessions – You’ll need to decide what type of sharing sessions you’ll want to have. It could be a time of sharing challenges with others and offering ideas and/or solutions; it could be a time of sharing triumphs; it could be a time of sharing things that work and things that don’t work. If the group decides to make it a venting session, put a limit on how long the venting goes on and start with the understanding that it is just a time to let off steam and get support, and not a time to drag the family through the mud. Always concentrate on being a positive, proactive, solutions oriented group.

 

7.  Online community board – It may be worthwhile to have a community board online to share information so that if a member misses a meeting they still have access to the information that was presented and the resources that were shared.

 

8.  Stress relief time – Being a nanny can be very stressful, so taking time out to learn how to relax and relieve stress is vital. The group can adopt a practice or share something different each time.

 

9.  Organize activities – Add fun time into the group by organizing some activities that the nannies can do together; perhaps a picnic, holiday celebration, monthly birthday parties, or whatever. Lively activities for fun and entertainment will keep the group enjoyable.

 

10.  Resource sharing – Incorporate a time in the meetings for resource sharing. There may be a new playground opening up or a book about discipline that some have found helpful. Maybe there’s a tax preparer that’s exceptionally good. Creating a time to share resources will help in the members’ professional and personal development.

 

These are just a few ideas that can be incorporated into a support group for nannies. As the group grows, there will be more ideas. Be open to change and growth because that will surely help the group fulfill its purpose.

 

Nanny Jobs

 

Caregivers are everywhere, and yet, many relatives don’t realize that when they start caring for a loved one, they become “caregivers” in addition to being a spouse, sibling, parent, friend…

Recently, I read some informative articles about families taking care of loved ones at home.  Some dealt with disabilities while others looked after relatives as a result of chronic illness or advanced aging.  I read a heartbreaking story about “parents” relinquishing their disabled child to the state, and another more hopeful story about finding doctors that make house calls.  However, while all of these poignant stories illustrated the challenges of caring for someone: “adult children” caring for a disabled parent, “parents” of a quadriplegic son, and a “sister” taking care of a sister were mentioned, nowhere did the word “caregiver” appear.

To me, this is an illustration of just how little known caregiving is in some countries.  It is also a call to arms to add “caregiving” and “caregiver / carer” to our vocabulary! How can sons, daughters, wives, husbands, grandparents, parents, families and friends who care for a loved one seek and use the help, resources, information, assistance programs, products, services, tools, emotional support, etc. that are available to “caregivers” if they don’t realize that that is exactly what they have become?

 

The first step is for family members to realize that when they are in charge of a loved one’s health and well-being, they are a CAREGIVER.  As such, these kind and giving (yes, sometimes scared and hesitant; often unprepared) relatives take on the role of SPOKESPERSON / ADVOCATE for their caree.

What does this mean?

It means that as a caregiver, you take on the duty and responsibility to speak up for your caree and to look after his or her health & well-being: physical, mental, emotional and everything else.

No longer should any doubt (or lack of confidence) exist in your caregiver’s mind as to whether it is appropriate to ask questions or to discuss health issues with the doctors and other medical professionals.  It is your duty to do so when your caree cannot!

 

I am convinced that it is time to educate ourselves about caregiving.  We must increase awareness of what caregivers are, what they do and what they need in order to carry out their duties effectively.  Let’s talk to our relatives, friends and neighbors so that those who are in the position today can benefit from the resources already in place. This will lighten their load and help them to cope with their countless caregiving tasks before they reach a state of overwhelm.  Many caregivers are already there; others are fast approaching fatigue, stress-out and burnout.  I encourage them to step forward now and to look for ways to take care of their body, mind and spirit.  I urge caregivers to search for assistance programs that provide hands-on help and for emotional support locally from family, friends and support groups.  Online, they can find peers and support via forums, blogs, Facebook, Twitter and disease-based organizations.  They are waiting for you!

For the future caregivers & carees, start learning now about what you may be dealing with in the years to come. Prepare yourselves: explore options for care (homecare, nursing, non-medical help), learn the terminology of healthcare and insurance policies, check that your own health or disability insurance coverage is adequate; prepare and register a Will, Advance Directives, Power of Attorney (Durable and Medical); consider who in your family would take care of you if you needed help, where you would live…

Caregiving touches every family.  Let’s reach out to caregivers in an effort to connect them to information, resources and assistance.  We may as well prepare ourselves for the journey by engaging the appropriate guidance and support.

 

Are you a caregiver?  Do you know a caregiver?  Please share this post and visit the links below as a starting point to caregiving support.

National Caregivers Library

National Family Caregivers Association

Caregiving

Caregiving Cafe

Eldercare Locator

 

Different people understand things in different ways.  I was enlightened with these words by a middle school Religious Education Director at our church a few years ago.  I made a comment to her regarding the lessons that we had been reading in class, where I was a volunteer. Every story taught us something; but when I pared each one down to the bare essentials, I came up with basically the same principle for all of them.  Was I missing something?

Not at all, she assured me.  It’s just that some people understand a lesson that is presented one way, while others will get it when told in a different way.  To be sure that the message gets across to everyone, the basic principles are presented in many ways.  That made sense – how clever!

Applying that concept to caregiving, specifically coping with caregiving, you can look for different strategies to identify and to manage stressors in order to reduce or to eliminate them.  While not every tactic will work for you, do give several a try until you find one that works.  You may need different ones for different situations.  What’s important is that you try several so that you can arm yourself with coping mechanisms to get past anything that is thrown at you.  Then, use them to ward off any potential stressors.

 

Below are a few tactics for managing stress that have worked in challenging situations:

1.  PRAYER

Whatever your belief system or faith, prayer shifts your focus from the problem onto a higher power, One who is capable of directing you toward acceptance or solution. You must be willing to release all control of the situation and to ask for guidance – and to mean it.  Praying words without completely believing them does little to appease. Accepting what may come enlists you as a follower of the Almighty, who works through you for good.  Your role as a caregiver and follower then is to learn about the condition and care, to consult with those who know about it, and to think of the best choices that work in your specific situation.  Through prayer, you can seek advice, support and clarity of mind to make sound decisions.

 

2.  JOURNALING

Writing down your fears, worries or trials helps to take the weight of these negative thoughts away from your mind. Once out of your system, you can read them later on to see if they still hold true, or you may see a solution that had escaped you. You can write on paper and throw it away, or you can keep a diary.  The idea here is to release this negativity from your mind and body to make room for possibilities and answers.  When worry overcomes you, it’s difficult to think sensibly because you get caught in a spiral of anticipated doom.  Get it out of your system so you can start thinking of solutions.

 

3. TALKING TO SOMEONE

Sometimes, you just need to vent, to tell someone what a horrible day you’ve had or that a ridiculous such-and-such happened.  You probably have someone with whom you feel comfortable talking about anything.  This is the time to call on close family or friends who have offered a compassionate shoulder and a listening ear.  Call on them! They may not have the answers you need, but you’ll feel better just being with someone who cares about you.

 

4.  LAUGHTER

Believe it or not, you can laugh through anything!  I don’t mean laughing at anything, but laughing in any situation. I remember going to Party City to look for supplies for the reception after my father’s funeral Mass.  This was my first experience with funeral arrangements and certainly difficult, being it was my sweet Dad’s.  What I really wanted to do was to sit down and bawl.  This store was a place for celebrations of life’s steppingstones, of happy events.  I felt so out of place looking for “party” supplies for my deceased father.  That’s when I decided that we would “celebrate” his life, the way he lived, loved and made everyone smile.  As my mother and I approached the registers to pay, I spotted a gaudy “diamond” ring that lit up.  She tried it on and we decided that since she loves big stones, she would wear it to the funeral.  We both laughed, and it felt better than crying.

 

5.  SEPARATING YOURSELF FROM THE SITUATION

This is not easy and it takes practice, but it is doable.  It works.  I can best explain it as looking objectively at a situation, taking into account only facts.  You may need to write these down to better see the whole scenario without tainting it with your fears or opinions.

  1. What is actually happening?
  2. What exactly is the problem?
  3. What is the solution?
  4. What needs to happen in order to get that solution?
  5. Who can help?
  6. What alternatives exist?
  7. Answer 4 and 5 for these alternatives.
  8. Come up with a plan of action.
  9. Take action.

Looking at a problem head on is less scary than imagining how bad it’s going to be.  Once you see what the problem is, you can begin to look for answers.  Sometimes, you may come up with a partial answer.  That’s fine!  As long as you are taking steps to resolve the situation, you are moving forward.

You also need to look at the big picture.  To do this, you must come up for air and see beyond the problem.  Is it as bad as you imagined? Usually not; but if it is, putting it into perspective with everything else helps you place this problem where you can deal with it.

 

6. ASK YOURSELF / ANSWER YOURSELF

When you feel stress and anxiety are taking over, ask yourself the following questions to figure out why you are so uptight:

  1. What triggered the stress / anxiety?
  2. Why does that make me stressed / anxious?
  3. What do I think is going to happen?
  4. Why is that stressful?

Then, answer yourself – honestly!  The point is to address the stressful event in an objective manner to figure out what exactly is bothering you.  Once you name reasons for the stress, you can tell yourself how you can overcome that stress.  Then take action!

 

While I am not a professional, I share the steps that have helped me cope with life’s surprises, hoping that they will help you, too.  If you are a caregiver and are having too many stressful days, losing sleep, feeling overwhelmed or sad for weeks, please talk to your doctor sooner rather than later.

 

The links below have several coping strategies that can help you manage your caregiving stress:

How to Reduce, Prevent, and Cope with Stress 

How to Reduce Stress: 10 Relaxation Techniques to Reduce Stress On-The-Spot

Positive Thinking: Reduce Stress by Eliminating Negative Self-Talk

Exercise and Stress: Get Moving to Combat Stress

Treatment Diaries

Caregiver Support

Caregiver Stress: Tips for Taking Care of Yourself 

Caregiving Cafe: Caregiver Burnout – Symptoms and Prevention

 

The links below bring caregivers medical resources and health information to keep up with the latest news and developments.  They also render a place to meet and to exchange ideas with other caregivers and patients – people who understand your circumstances and who can provide welcome support!

 

 

MEDICAL RESOURCES & HEALTH INFORMATION

SCPharmacist – trusted healthcare resources, prescription drug savings tlps

Health Alerts / Advisories – alerts, health info, research

Health Canal – medical news

Dana – brain research & information

Vascular Web – Podcasts, resources, research for patients, families, students & professionals

DrAnnBeckerSchutte – tools for emotional, physical health

Spina Bifida Association of GA – support to live more fulfilling life

Let Life Happen – cancer & abuse survivor bringing hope

Ability4Life – caring for aging parents: products & information

Best-Endings App – preparing for our end-of-life

Best-Endings – planning now for our end-of-life

Stardust Ashes – scatters loved one’s ashes into stratosphere

 

COMMUNITY & SUPPORT: find other caregivers, families, patients

Ben’s Friends  – support & information, communities of people with rare diseases

The Coffee Klatch – support & education for families of special needs children

Seize the Days – celebrating cancer patient survival life with inspirational stories

Inspire – online health & wellness communities for patients & caregivers

Groups@Care – join / form groups with similar interests

 

WELLNESS

La Via Sana – support for people dealing with mental illness

Soma Vida – work / life balance, wellness

Judy Kegg at Floating LotusWatsu & massage therapies

Hill Country Healing Arts – Watsu & massage therapies

Cure for Space – uncluttering & organizing homes

 

In the midst of the buzz about Rare Disease Day throughout February, I came across JC Colyer on Twitter. He has been diagnosed with Ataxia.  Curious to learn about this rare condition, I asked him if he would like to talk about Ataxia so that we can learn about it. Graciously, he agreed to contribute the post below.  Not only did he provide details about Ataxia, but he provided a key ingredient to coping with any major challenges in life: adapting your lifestyle!  Thank you, JC!

 

Rare Disease Awareness Day was held worldwide on February 29 this year, an effort by NORD [National Organization for Rare Disorders] to educate the general public about rare diseases.

NORD’s MISSION

“NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.”

 

What is the purpose of increasing awareness?

  1. Learn about symptoms
  2. Familiarize medical community with disease
  3. Recognize symptoms early so diagnosis can be made & treatment can begin
  4. Raise funds for / encourage research to find successful treatments & cure
  5. Develop efficient medications for that disease

 

 

Adapting your lifestyle when there is no other choice: “Diagnosis Ataxia”

by JC Colyer

 

My name is John Colyer, since my early teens I’ve had the nickname, “J.C.”.

I’m about to turn 50, and would have never expected to be in the situation I am in:  for the last 10 yrs. I’ve had a slow but steady downfall caused by a rare disease known as “Cerebellar Ataxia”.  It causes cerebellar atrophy, which means the part of my brain, called the cerebellum, is shrinking. I’ve had 3 MRI’s, multiple genetic and non-genetic blood tests and have seen numerous Dr’s and Specialists. I didn’t recognize a problem till friends and co- workers brought it to my attention. Ataxia causes your balance, coordination and speech to deteriorate. It makes you look and sound drunk, which is ok to people when you’re young, not so much in your 40’s. I had a fall in Jan. 2010 and broke my left knee cap and had 2 surgeries to repair it. While recovering in bed, I found BEN’SFRIENDS.ORG, a support network for people with rare diseases. I joined their Ataxia support sites,

American Ataxia Networking (http://americanataxianetworking.ning.com/ ) and

Living with Ataxia (http://www.livingwithataxia.org/ ).

I had never had contact with another person with Ataxia before then; it was the first time I felt it was real and not in my imagination. It became a life line for me, a safe place to vent with others who understood my struggles. I use a Quad cane for stability when I walk, and stress and fatigue magnify my symptoms. I moderate a few sites now with Ben’s Friends and find helping others helps me. I struggle with depression and take medication to help me. An internet connection is the same for a disabled person as an able person. If I didn’t tell you I was disabled online, you wouldn’t realize [it]. I’ve learned I must just Keep Trying and Stay Strong!

 

 

Was connecting with other Ataxia patients what made you decide to go with the flow instead of fighting Ataxia any longer? Do you feel that knowing that others are somehow managing gave you the motivation to create a new life for yourself?

Being able to connect with other Ataxians was a big thing, there is not one Ataxia support group in the state of New Jersey. Face to Face is always the best, but I am grateful to Ben’s Friends. My anger was bad, I also went to group sessions at a center for vocational rehabilitation for the developmental and physically disabled and learning how to cope from others who have been disabled longer then me calmed my anger. I helped them also, I made friends. It made me want to keep trying.

 

• Do you have support at home from family or friends? How do the help you? 

I’ve lived in a 1 room w/a bathroom apartment on the Jersey Shore for 12 yrs., it is perfect for me and in my budget. Family and Friends care but have their own lives and their own children. They care but I feel how uncomfortable my disability makes them. I know they would be there if I need them. I’ve alway’s been a loner.

 

• Does your health insurance plan cover your treatments, medications, supplies? Do you get benefits from Social Security or Medicare?

I’m on Social Security Disability, I so appreciate the safety nets we have. I’m on PAAD, Prescription Assistance for the Aged and Disabled. I begin Medicare in July, had to wait 2 yrs.; I paid for a basic plan for those 2 yrs., it is not easy making ends meet. It panicked me when I first found out the amount I receive , I made a lot of adjustments, physically and financially but everyone has their struggles.

 

• Did doctors figure out what you had after looking at your test results? Who figured out you had Ataxia? What treatment did he/she recommend? 

The MRI showed Cerebellar Atrophy which causes Ataxia, genetic blood test was negative, but there are genes that haven’t been discovered. No medication for Ataxia; anti-anxiety, anti-depressants are prescribed. Lifestyle and diet changes are important. I follow Gluten Free, Vegetarian diet, no alcohol and low sugar and no white flour or processed foods. It  sounds harder than it is :)  Fatigue is a big problem; I put a lot of energy in things able people don’t have to think of.

 

• Are you in pain?

I have my pain in my hands at night, I stay away from prescription pain killers even though Dr. offered them. I fell in January 2010 and broke my left knee cap. I had 2 surgeries to repair it. During my recovery in bed I found Ben’s Friends. I was in the darkest place in my life; guess that’s what they call the crossroads. I’m still and always will be a work in progress and I’ll keep trying.

 

NORD [National Organization for Rare Disorders]

EURORDIS [Rare Diseases Europe]

RARE DISEASE DAY USA

American Ataxia Networking

Living with Ataxia

Ben’s Friends

 

La Via Sana’s 3rd Annual Wildflower Retreat delivered a pleasing and relaxing experience among the bluebonnets of the Texas Hill Country.  Located in Dripping Springs just west of Austin, Villa Sana provided a peaceful setting for the yearly event.  Presenters discussed ways for us to acknowledge and to assess our thinking so that we could then get a picture of stressors or perceived obstacles. Knowing what those hurdles are, we could then begin to address and to overcome them.

The casual mood in the artfully decorated house sparked both our imagination and conversational momentum. Breakfast, consisting of huge raspberries, blackberries and blueberries, yogurt, quinoa granola, mini egg souffles, tea and coffee, provided plenty of anti-oxidants and brain food to start the day off right.

 

La Via Sana’s 3rd Annual Wildflower Retreat

 

 

 

 

 

 

 

 

 

 

The itinerary for the day began with Dream Journaling and Vision Boards – presented by Blanca Knoll, Founder of La Via Sana.  Both new to me, I learned that journaling can serve as a way to unload concerns and stresses from our mind in order to make room for clearer thinking and a lighter mood.  Written entries could take the form of:

  1. random thoughts and observations
  2. questions that we answer ourselves
  3. daydreams, wishes
  4. worries, troubles, recurring thoughts
  5. ideas, revelations
  6. plans for the future
  7. drawings
  8. combination of above or others
La Via Sana's 3rd Annual Wildflower Retreat - VISION BOARD

La Via Sana’s 3rd Annual Wildflower Retreat – VISION BOARD

 

 

 

 

 

 

 

 

 

 

 

 

 

Vision Boards are an assortment of images, words or numbers cut out from magazines and glued on a board to create a collage.  You can arrange them in any fashion you desire and could even add small objects.  What I found intriguing was that once finished, you could look at the Vision Board to assess what is important to us or what was on our mind at the moment that we gathered the images.  For instance, perhaps, pictures of plants, lakes and meadows appeared prominently throughout the board.  This could be an indication that nature is important to us.  One person added a large picture of a lady in a long elegant gown – it turned out that the board’s creator used to love designing dresses when she was a little girl.  Quite predictably, my pictures involved mostly foods and interior decorating!  I found this activity fascinating because it can reveal things buried in our subconscious about which we are not yet aware.  It could explain why we sometimes act or think the way we do.

 

La Via Sana's 3rd Annual Wildflower Retreat - BAKING BREAD

La Via Sana’s 3rd Annual Wildflower Retreat – BAKING GLUTEN-FREE BREAD

 

 

 

 

 

 

 

 

 

 

 

My next activity was watching La Via Sana’s Director Ronald Knoll bake 2 loaves of gluten-free banana-walnut bread.  (This only confirmed my Vision Board’s revelation about my keen interest in good food!)  Our group chatted about nutrition, ingredients, tips, substitutions and good sources of organic products.  We also got to know each other a little better, which helped us to relax and to move farther away from out daily stresses.

A light snack of pot stickers with soya dip and vegetable juices followed and hit the spot until lunchtime.

 

La Via Sana's 3rd Annual Wildflower Retreat

La Via Sana’s 3rd Annual Wildflower Retreat – LUNCH

 

 

 

 

 

 

 

 

 

 

 

Lunch was as colorful as the art casually adorning the country house and consisted of:

  • baked salmon topped with basil pesto and capers
  • broccoli-cauliflower salad (mm-mm-great!)
  • melange of vegetables: red bell peppers, parsnips, mushrooms and beets
  • yellow cherry tomatoes
  • mango wedges
  • gluten-free banana-walnut bread
  • refreshments
La Via Sana's 3rd Annual Wildflower Retreat

La Via Sana’s 3rd Annual Wildflower Retreat – GETTING ORGANIZED

 

 

 

 

 

 

 

 

 

 

 

The afternoon session kicked off with a discussion on how to reduce clutter in the home, led by Brigitte Starkey, Professional Organizer and Owner of Cure for Space. She gave us questions to ask ourselves when we couldn’t decide whether to keep something or throw it away.  A proverbial recycler and re-user, I could definitely use some advice on how to talk myself out of “saving” one more box!  (Well, I like to keep them in different sizes for when I need to mail something, the result of having always lived away from family…I’m getting better about recycling them instead of saving them for a future need.)

 

La Via Sana's 3rd Annual Wildflower Retreat

La Via Sana’s 3rd Annual Wildflower Retreat – MASSAGE

 

 

 

 

 

 

 

 

 

 

 

Finally, I got my first-ever massage!  Judy Kegg – Watsu & Massage Therapist from Floating Lotus at SomaVida wellness center – offered a massage to everyone in attendance.  I had heard rave reviews of the practically life-altering experience, but I have never been even remotely interested in getting one.  I admit that my back and shoulders felt a lot better and looser after a short and sweet light massage!  I’m sold!

The day ended with friendly conversation, new acquaintances that could easily develop into friendships, and a soothing sense of inner tranquility.  I did notice – and thoroughly enjoyed – the fact that I didn’t have to do everything for myself.  For a change, breakfast and lunch were prepared and waiting for me – a stark contrast to the routine at home.  As a caregiver, I am the one (willingly) doing everything for others.  It felt nice to be taken care of!

The 3rd Annual Wildflower Retreat certainly provided welcome relaxation and renewal for the attendees.  I know that this caregiver is already looking forward to next year!

La Via Sana will continue to offer a short break from the busy-ness of the day on Wednesdays between 10am and 3pm. A light lunch, refreshments, healthy snacks and relaxation will be provided for a small fee.  Please contact La Via Sana for details and directions to this breath of fresh air in the beautiful Texas Hill Country.

 

 

 La Via Sana

“A non-profit organization that reaches out to people who face mental illness and advocates for full mental wellness of people in all income brackets. Our mission is to create a community of mental wellness advocacy through: Prevention, Information, Education, & Support.”

La Via Sana – advocating mental wellness, relaxation retreats; Dripping Springs, near Austin, TX 512-573-5810

Soma Vida – center for people to find peace of mind, connecting

Cure for Space – unclutter & organize your home, handyman & remodeling services

Judy Kegg – Watsu & Massage Therapist

Hill Country Healing Arts – massage & Watsu

 

Passing along lots of useful links that can help your caregiving!  Please browse the lists below and visit the websites to find plenty of good resources, tips and inspiration to make your day more manageable.

 

CAREGIVER SELF-CARE, MOTIVATION

Inspire – online health & wellness communities for patients & caregivers

Groups@Care – join / form groups with similar interests

Caregiver Stress – caregiving topics, expert advice, self-care

Laughing with Mary Maxwell – humor, quick wit about life

Mary Ann Liebert Publishers – information on science, technology, medicine

Arleen Alleman – author, fiction

 

 

CAREGIVING TRAINING & TIPS

aQuire Training Solutions – online training courses, Alz & memory care training courses

Wheelmap – map of wheelchair accessibility around the world

Care Conscious – Educating, preparing family caregivers

 

 

HOMECARE, FACILITIES, BENEFITS, DOCTORS

Rankings & Research – rates hospitals, nursing homes, health plans, diets, doctors

LongTermCare.gov – national clearinghouse

Home Care Generations – home care help in Phoenix, AZ

Golden Touch Caregivers – non-medical home care

Ethos – coordination, delivery of home & community-based care

Visiting Nurse Service of NY – home health care services in NY

Brooke’s Home Care – non-medical home care; Ontario, Canada

Community Connections TimeBank – share talents to help others, get favor back in return, free

Easier Living – medical products, services for home, tips

The Easier Living Blog – help manage day to day

Elders Resource LLC – help with Medicare, locating benefits, filling out forms

CarePlanners – navigate healthcare system, coordinating care for self & family; understand Medicare, insurance, diagnosis

Chamber of Hope – free Oxygen (mHBOT) for sick children, Tampa Bay, FL

AAHCP – directory of doctors who make house calls

 

Small Bird Studios, founded by Franchesca Cox, is a wonderful place of serenity, of sharing deep emotions over the loss of a child and of gathering strength for new beginnings.  The calm backdrop quiets the whirlwind of everyday life as Fran’s words soothe a wounded soul.  She is joined by other parents who have traveled the same road by way of their own blogs.  Her aim is to form a community of support and encouragement, much like she found upon the loss of her beloved Jenna.

To help her heal – and to help others as well – Fran turned to art and creative projects as an outlet for her grief:

  • You can visit our Lost for Words card line I share with CarlyMarie here. Please visit our official website here. It specializes in infant loss, pregnancy loss and infertility.
  • You can order a collage in your child’s memory, if you have suffered the loss of a child here.
  • You can view and purchase my subway art here. You can also turn your Instagram pictures into small canvases.

Please visit Small Bird Studios to find comfort and share the link with those who may benefit from support and understanding upon the loss of their child.

Thank you, Fran, for sharing your beautiful work!

 

 

Picking up the Pieces — by Franchesca Cox

I used to think picking up the pieces meant being ‘spiritual’.

 

I used to think picking up the pieces meant getting over it. That didn’t last long. There is no ‘getting over it’.

 

I used to think that picking up the pieces meant that they wouldn’t fall again.

 

Instead of beating myself up that none of the above have resonated with me at all or for very long, I decide to share what picking up the pieces looks like in my life.

 

Picking up the pieces is crying when tears come to your eyes.

 

Picking up the pieces is visiting the cemetery as often or as infrequent as you need to.

 

Picking up the pieces is realizing you cannot measure your love for her by what you do or don’t do.

 

Picking up the pieces is believing you did everything you could.

 

Picking up the pieces is blasting Van Morrison or the Beach Boys when you just don’t want to cry.

 

Picking up the pieces is never forgetting what a beautiful friend Pete has become.

 

Picking up the pieces is squeezing that little boy as tight as I can. Every day.

 

Picking up the pieces is taking time for myself.

 

Picking up the pieces is finding something to be thankful for, even if that means thanking God for the gas that’s in the tank to take you to the grocery store.

 

Picking up the pieces is lighting her candle, playing her song, giving her time when I need it.

 

Picking up the pieces is understanding THIS is only the beginning.

 

Picking up the pieces using this to help someone.

 

Picking up the pieces is throwing that mask away, and only wearing it with caution.

 

Picking up the pieces is looking at someone else’s broken heart or situation. Someone always has it worse. Always.

 

Picking up the pieces is taking risks.

 

Picking up the pieces is dancing your heart away.

 

Picking up the pieces is taking a canvas and throwing paint at it til your hands hurt.

 

Picking up the pieces is breaking dishes, slamming the door or screaming as loud as you can.

 

Picking up the pieces is being okay with disappointing some people. You will never please everyone.

 

Picking up the pieces is being okay that the old Fran is gone forever.

 

Picking up the pieces is embracing the ugly side of grief.

 

What does picking up the pieces look like to you?

 

 

 

Small Bird Studios  – loss of child blogs

Carly Marie Project Heal  – healing after pregnancy, infant & child loss

Loss for Words  – cards specializing in pregnancy loss, infant loss & infertility

 

A friend sent this passage to me recently, recalling health issues that have our attention at the moment.  While we are not dealing with cancer right now, the sentiments and reflections mentioned below certainly apply to any illness, condition or frailty that keeps us from feeling our best.  I hope you find solace in Mr. LaChapelle’s words.

 

 

We are not alone: the 7th of “Seven Lessons of Cancer”

by David LaChapelle.  Written Spring 2008 during treatment in Switzerland.

 

1. Love is the answer.
In my treatment journey I have encountered many patients and doctors who are dealing directly with cancer. The quality of love available is in direct relationship to the severity of the disease. If every disease carries its own antidote in consciousness, which I believe it does, cancer has love as the remedy. The chronic lack of connection
that afflicts our culture and times is made visible by the out of control growth which is reaching through the healthy tissue of the body seeking connection. A tender heart is a priceless gift, and one which cancer bestows in abundance. Turn each day, to those near you,
and feel your love for them and their love for you.

 

 

 

2. Suffering has a purpose
Having cancer is like being in a long, long birth canal. The
inescapable presence of pain is a part of daily life. As I turn
towards this companion, I am shown again and again that every nuance of my suffering is actually a door opening into [s]ome form of insight, healing of broken connection, or intuition of greater meaning. My partner Ananda has had several dreams of the stigmata in the last few days and the image of a suffering Christ is everywhere in our travels here in Europe. The history of our western sensitivity is woven around the need to make sense out of our collective suffering. Cancer brings this inquiry to a potent portal of daily insight.

 

 

 

3. All things are connected
Cancer is a potent lens for focusing this basic teaching. As I work my way through the layers of conditioning in my body, and sense of self, I continually find direct connections that I had not truly appreciated or even sensed. This is as basic as receiving love and appreciation
from all those that I have touched, or to more esoteric realms such as a realization that color and starlight are integral to a correct “diet” for healing. Cancer forces me to look at the ways in which I have tolerated disconnection within myself and with others and the world at large.

 

 

 

4. We are one Body
I grew up in a Catholic household. The mystical body of Christ was one of the concepts that most fascinated me as a child. While in India, I had a dream that Swami Muktananda’s (The Guru of the Ashram I was at) body had indeed become the entire universe. The transformation of my body through this (cancer) process has made me acutely aware of the collective nature of our physical embodiments. I am much more sensitive to the pain, discomfort and ill ease of other (people’s) bodies than I ever have been. There is a sense of my body opening
outward to include the word around me. This is quite a surprising occurrence. I would have thought that under assault my body’s physical boundaries would close in upon themselves to protect my core energy. In fact just the opposite appears to be taking place. The number of people who have had dreams of my presence, often with very specific information, has increased the tangible feeling of this “great body” collective.

 

 

 

5. Life is precious
This almost seems a cliche to say, but nevertheless it is potently true. My capacity to cherish the many qualities of existence that arise around me has become much more refined. It is as if cancer is a product of the hungry ghost of our current cultural experience. The antidote to a vacant place of unrestrained growth, is the tender
appreciation of all things large and small. This quality fees larger than just what is occurring in my own body. It strikes me as a refection of our times and a call to a way of living in which the craft of daily awareness becomes the foundation of our experience.

 

 

 

6. Humility is great medicine
Cancer has a certain inevitable arrogance. How dare the cells of one’s body strike out on their own as they wish, with no feeling of contextual responsibility? This process has an echo in deeper levels of attitude and behavior. I have noticed that my instinctual response has been to be more receptive, less self assured, less self confident. I am struck particularly by the picture of Ramana Maharshi toward the end of his life, when cancer had spread throughout his body. His already considerable humility seemed to have been distilled and poured out as an ineffable sweetness. There is a great invitation to receive
that (which) comes in the wake of cancer.

 

 

 

7. We are not alone
And finally, a most potent message of cancer is: “We are not alone”. I have seen this message in the face of tenderness in the patients and doctors here in the Switzerland clinic. I have felt this in countless interactions with the wait staff, store clerks, hotel staff, patients,
doctors, friends and even casual meetings on a mountain trail. One of my new friends, who has cancer, said to me, “I did not know there was so much lover for me. ” This feeling of receiving the world, of recognizing that we are not alone and separate is a precious jewel in the night of cancer. It glistens and invites all of us to live our lives forward, as if this were a command from consciousness itself: “You are not alone.”

I am always on the lookout for great information that caregivers can put to good use.  Please visit the links below to find resources, insights and tips that can help your caregiving run a little more smoothly.

Keep in mind that our brain needs fuel to stay sharp. Some articles teach, others enlighten.  Others merely propose a different perspective on common ideas. Consider them mental calisthenics!

Explore & enjoy!

 

 

Small Bird Studios  –  loss of child blogs

Invisible Disabilities  –  videos, education & support for people with chronic illness

Association of Blind Citizens  –  resources for the blind

Schizophrenia Forums

National Stroke Association  –  education, treatments, support

Ability4Life  –  resources for our aging parents

Best-Endings  –  addressing end-of-life topics

NHS local  –  UK health information

Genetics Home Reference  –  guide to genetic conditions

Caregivers of AIS Support Group

Wallpaper Magazine –  design, interiors, architecture, fashion, art

Adventurer Jim Clash – “interviews high-profile guests who push their life to the limits”

Compassion and the Individual  – What is the purpose of life?

Create your own support groups  –  join or start your own