Share your caregiving story

Share your caregiving story

We want to hear about your caregiving journey!

The Caregiver Space invites you to share your story with us so others may find strength and hope in your words. It is a great way to give back to the caregiving community and a powerful way to begin your emotional healing. The only requirement for a story is your honesty, as we find this to be the most cathartic release for both readers and writers.

If you know any professional caregivers, male caregivers, or friends and relatives of caregivers, tell them to contact us. We want to hear their story too!

Submit stories through our fancy new submission form.

We are looking forward to hearing from you all!

The long-distance caregiver

The long-distance caregiver

Almost seven million Americans consider themselves to be long-distance caregivers, almost 11% of the country’s caregiving population. Long-distance caregivers are generally agreed to be any person who provides financial, emotional, or physical support to a care-recipient living over an hour away. Whether you live two hours by car or five hours by plane, long-distance caregivers have some sort of geographical boundary separating them from your loved one. Thus a wide array of long-distance caregivers is represented on the spectrum:

“… surveys show that men now represent almost 40% of caregivers. Anyone, anywhere can be a long-distance caregiver. Gender, income, age, social status, employment—none of these prevent you from taking on at least some caregiving responsibilities and possibly feeling some of the satisfaction” National Institute on Aging.

Long-distance caregivers can get involved with the role unexpectedly. Since you probably don’t see your loved one every day, it is easy to notice a dramatic growth in the need for care: perhaps after a visit that demonstrated the necessity for regular care, or a call from a family member or neighbor expressing concern. You realize your loved one needs a caregiver. What next?

You may become the primary caregiver if you choose to move in with your loved one, or have him/her move in with you. This can be tricky for many individuals and families due to extenuating circumstances: is there space available? How would this conflict with your work schedule? Set up a meeting with your loved one’s friends and family and decide who will be the primary caregiver. Even if you decide to hire help, choosing a primary caregiver is important because they will be the first one notified in case of an emergency. The primary caregiver should live the closest so they can respond immediately.

While meeting with your family and friends, brainstorm a list of all caregiving responsibilities. Here is one example that can help you get started. Next, each person that will be involved in the care process should determine his/her strengths and limits. This will help you decide what roles go to each caregiver.

When thinking about your strengths, consider what you are particularly good at and how those skills might help in the current situation:

  • Are you good at finding information, keeping people up-to-date on changing conditions, and offering cheer, whether on the phone or with a computer?
  • Are you good at supervising and leading others?
  • Are you comfortable speaking with medical staff and interpreting what they say to others?
  • Is your strongest suit doing the numbers—paying bills, keeping track of bank statements, and reviewing insurance policies and reimbursement reports?
  • Are you the one in the family who can fix anything, while no one else knows the difference between pliers and a wrench?

When reflecting on your limits, consider:

  • How often, both mentally and financially, can you afford to travel?
  • Are you emotionally prepared to take on what may feel like a reversal of roles between you and your parent—taking care of your parent instead of your parent taking care of you? Can you continue to respect your parent’s independence?
  • Can you be both calm and assertive when communicating from a distance?
  • How will your decision to take on caregiving responsibilities affect your work and home life?
Source: NIA

Your responsibilities as a long-distance caregiver will vary but they will typically involve research and coordination. It is recommended that you get a binder to organize your care. Create sections for checklists (specific questions to ask the doctor, meals, housework), schedules (doctor and medicines), emergency contacts (including all people involved with your loved one’s care), research, and financial records. You can also take care of this through apps like Prime, so you can have this information with you whenever you need it. This will help you stay ahead of the game, even if you live far away. Stay in close contact with your loved one and the primary caregiver, as well as other caregiving friends and family members and ask specific questions concerning your loved one’s health and mood.

National Alliance for Caregiving reports the average annual cost for the long-distance caregiver at around $9,000. This includes transportation, medical bills, and paid-care, among others. Help offset the cost by using a rotating schedule with friends and family to pay your loved one visits. The bigger the support network of caregivers, the less need you will have of paid-care. Check out Lotsa Helping Hands or Tyze Personal Networks to create and organize a support network.

The financial responsibilities of a long distance caregiver will fluctuate. You may be mainly involved in researching health problems and medicines, or helping keep friends and family updated on your loved one’s status. Instead, you may be the one paying for your loved one’s care and have less of a hands-on role. “Many long-distance caregivers provide emotional support and occasional respite to a primary caregiver” National Institute on Aging. Whatever your role is, it will be immensely beneficial to not only your loved one, but to all others involved in his/her care.

When you visit your loved one pay attention to his/her requests, especially those that slip by the primary caregiver’s attention. With your additional time and energy you can help to accomplish those requests. Give the primary caregiver the night off. That free time will mean the world to him/her! But your visit should not only be spent caregiving. Make a list of activities that you and your loved one enjoy doing—try to fit in a couple while you are around. Remember that while your loved one may be need, s/he still needs quality time with you.

It is often assumed that long-distance caregiving provides enough space for the caregiver to understand and manage his/her emotions. This is not always the case. Caregiving, regardless of distance, is an emotionally overwhelming responsibility.

Although you may not feel as physically exhausted and drained as the primary, hands-on caregiver, you may still be worried and anxious. And you might feel guilty about almost everything—about not being closer, not doing enough, not having enough time with your parent, and perhaps even feeling jealous of those who do. Many long-distance caregivers also find that worry about being able to afford to take time off from work, being away from family, or the cost of travel increases these frustrations.

Source: NIA

Long-distance caregiving is a complex, challenging role that is generally unrecognized since you fulfill most of your responsibilities behind the scenes. Don’t undervalue yourself—you are doing the best you can and that is more than enough. The caregiving process could not function without you.

Only another caregiver can understand…

Only another caregiver can understand…


This post was written in response to the video above, in which Michael Bloom and Adrienne Gruberg discuss the unique struggle of caregiving.

Our family and friends don’t get it.

It’s no fault of their own– the demands of caregiving are almost impossible for them to understand because they haven’t lived with it.

Even if we don’t feel comfortable talking to our friends and family, we cannot keep our the feelings inside. These thoughts and emotions are distinctive to caregiving. Fortunately, caregivers are uniquely qualified to help one another— we understand the complicated emotions and overwhelming responsibilities because we’ve been there.

Another caregiver understands

why I can’t just “self-care” by taking a bathwhen would I find the time?

… that my mom doesn’t want me to hire help

… how much I can resent caring for my sister, even though I love her

… what I’ve given up to show up for caregiving

… what “constant care” looks like

… that five consecutive hours of sleep is a miracle

secondary-PTSD from caregiving

… that having four arms still wouldn’t be enough

… the resentment, frustration, love, loneliness, anxiety, guilt, and fear

… how hard it is to get a job after being a caregiver for so many years

the pain of watching a loved one suffer

what it feels like to no longer be asked “How are you?

… that going to the grocery store is like a mini-vacation

… what “running on empty” really means

… how much you feel depended upon

how frustrating it can be to have siblings visit

… the education we get from caring

… our capacity to give and love

So thank goodness I know just where to find the people who will understand.

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41 ridiculously easy ways to find pleasure in the midst of chaos

41 ridiculously easy ways to find pleasure in the midst of chaos

Caregiving is chaotic.

Luckily, we have the strength as a group to help each other stay in the eye of the storm and not be caught in it. Our mental resources, pooled together, are more than enough to give us all a bit of relief. We asked “What are some little things you do that bring you pleasure in the midst of chaos?”

You guys came back with some amazing responses. Below are the little pleasures you shared with us.

Find pleasure in the midst of chaos by:

    1. images depicting things you can do to relax, like knitting, painting, playing chess, writing, playing music, having a glass of wine,  listening to the radio, or recording a songWriting
    2. Listening to music
    3. Praying
    4. Hugging an animal
    5. Getting hugs and kisses from grandchildren
    6. Gardening
    7. Walking
    8. Riding a bike
    9. Painting your nails
    10. Making some home improvements
    11. Laughing
    12. Walking your dog
    13. Crocheting
    14. Playing mindless computer games
    15. Humming
    16. Hanging out with your children
    17. Exercising
    18. Getting a haircut
    19. Eating cupcakes
    20. Going for an early morning run
    21. Practicing jiu jitsu
    22. Having a glass of wine
    23. Experiencing the garden
    24. Breathing (deeply)
    25. Drinking tea
    26. Munching on dark chocolate (or any kind of chocolate!)
    27. Lighting candles
    28. Sipping caramel lattes
    29. Dipping fingers into paraffin wax
    30. Talking on the phone to friends
    31. Making yourself smile
    32. Going to NASCAR races
    33. Taking hot showers
    34. Sleeping
    35. Relaxing in bubble baths
    36. Reading
    37. Singing
    38. Turning up the music loud (and singing along!)
    39. Getting goofy
    40. Chatting with best friends
    41. Getting hugs and kisses (in general)

Amazing, right? Just imagining all of those lists items brings some relief!

5 great ways to help (without being asked)

5 great ways to help (without being asked)

Are you eager to support the caregiver in your life, but aren’t sure what to do?

Here are 5 of the best ways to help:

  • If you live in the area, offer to pick up some groceries for him or her when you’re doing your shop. This kind gesture can be an enormous help and it won’t make the caregiver feel like you’re going too much out of your way if you say you are going to the grocery store regardless.
  • Call a couple of times a week to let the caregiver know that you’re thinking of him/her. This phone call will allow the caregiver to vent about the frustrations and difficulties of the day that s/he may be holding inside. Don’t worry about saying something to make it all better. Just lend an ear! Express your sympathy by acknowledging the stressors of daily caregiving and remind them of your support.
  • Offer to make dinner for your friend/family member one night. This will be a great way to spend time catching up and relieve the caregiver of one less thing to worry about. Alternately, invite the caregiver to go out to dinner at a nearby restaurant. Dining out can be a mini-vacation for a caregiver! When in doubt, always ask what the caregiver prefers to do and voice that you would be happy with either plan. Or you can have a healthy and delicious meal delivered right to the caregiver’s doorstep!
  • Spend the day learning the basic care the caregiver provides for his/her loved one and help in anyway possible. Not many people understand a caregiver’s role in a sick or aging loved one’s daily life and it will mean a lot to both the caregiver and the cared-for that you took the time to learn. When the caregiver needs a weekend to rest or even an hour to spend some time alone, you can look after the cared-for loved one.
  • Find out what the caregiver needs. Maybe it is something that will make caregiving a little easier, like a bath bench or a subscription to a delivery service. It might be something thoughtful for the caregiver, like a massage or spa service. Ask other family and friends to give! Anything that you give him/her will be appreciated. Start looking with a curated selection of gifts just for the caregiver.

 

Transportation for older people and disabled drivers

Transportation for older people and disabled drivers

Concerned about driving safety? So many of us worry about our loved ones behind the wheel. Here’s a handy infographic on the best cars and alternative transportation services.

Is it time to discuss giving up driving? The conversation might not be as difficult as you expect, just remember that driving is about more than transportation — it’s also about freedom and dignity.

If you’re in North America, we have a guide to alternative transportation options in the US and Canada.

Transportation For Older People And Disabled Drivers - An Infographic from Bluebird Care

Embedded from Bluebird Care

How does sharing your story help you (and others)?

How does sharing your story help you (and others)?

Writing is a way to find your voice

When you’re taking care of someone else, so much of your life becomes about them.Sometimes it can feel like you’ve forgotten who you are anymore. Writing is a way to reconnect with you — what you’re experiencing, your opinions, your passions, your hopes.

Writing out your experience lightens the load

It can get so loud in your head. The volume on the cynical dial is turned up so high your neighbors are knocking. Everything feels dark, scary and confusing when it’s all kept inside. Writing is a way to relieve you of the mental burden of worry, anxiety, anger, and other exhausting emotions. When we keep our scariest thoughts locked upstairs, it’s no wonder we feel alone. Getting them out on the page, sharing them with someone, takes away some power of the thought. Writing releases you from thoughts moving in torturous circles.

It helps others to read your experience

We never know how our experience can benefit another. Often your story provides a reader with a relief from his/her thoughts. Your story helps the reader feel “apart of,” rather than “apart from.” Sometimes it’s just nice to know that we’re not the only ones going through this. The ways you cope and care might be new techniques to another caregiver. And you might learn from others by reading their experience too.

It’s a great way to meet people

Writing about the things that interest you and what’s going on in your life is a great way to connect with other people who share those interests and experiences. Every piece you write is the chance to start a dialogue with other caregivers. Many friendships had their first spark in the comments of a blog post.

A response from another caregiver makes you feel less alone

There is almost nothing as healing as hearing the words “me too.” Shame, guilt, and worry can leave you feeling so alone. But when someone else shares that they are going through the same thing, you’re part of a team. The pain of feeling different is lifted. Don’t worry, another caregiver knows what you’re going through.


We’re always looking for guest authors to share their caregiving story. If you’re interested, please consider writing for us!
Bob’s story  (as told by his wife of 35 years)

Bob’s story (as told by his wife of 35 years)

After my husband was released from the hospital he started to breathe very loudly. We went to the hospital to see why.  They explained that during the time that he was intubated in surgery it left scars on his trachea. They wanted to operate and remove the scaring.  The operation was to only take about 30 minutes and that he would be fine.  After waiting about 2 hours the doctors finally came out and explained to that it didn’t work and they had to perform a tracheal (tracheotomy) to help with his breathing.  They told us it would only be there for a short time.  After several times of trying to close it they said they couldn’t do anything else to help him. That’s when I started getting extremely frustrated. I felt helpless and there was NO ONE who cared.

This is a heart-breaking story that unfortunately occurs all too often for family caregivers. Thinking that doctors put the patients’ needs first is a major mistake made by patients and their caregivers according to Trisha Torrey’s book, You Bet Your Life: The 10 Mistakes Every Patient Makes.

Medical practices have changed dramatically over the past two decades. As a result, many physicians are overburdened, overbooked and saddled with administrative and insurance company regulations and demands.

Doctors are struggling to maintain their own survival in a challenging and changing health care system. Thus, the patient and caregiver must carefully monitor advocacy needs. It is important to take charge and insure that the patients’ problems are heard, their values are respected and their health care needs are met. In today’s health care environment, patients and family caregivers must be active and informed partners with their doctors in making health care decisions. Here are some ways to do that:

  1. First, find a doctor that will listen to you. A doctor, who respects you, spends time with you as caregiver and with the patient and answers your questions clearly.
  2. Question every recommendation that the doctor gives. You must understand the reasons for the medical recommendations and how they will be of benefit to the patient.
  3. Don’t hesitate to ask that the medical explanation be in understandable layman’s terms. Inquire about alternative options. Ask what are the risks and benefits of each treatment recommendation. Bring along a tape recorder and ask the doctor’s permission to use it to record the treatment review.
  4. Trust your instincts. If you feel that the doctor’s recommendations are not right for the patient, pay attention to that feeling. Get a second opinion; a third or fourth if you’re still not satisfied.
  5. Educate yourself about your loved one’s illness and treatment options. An informed family caregiver is an empowered advocate. Speak to trusted nurses, doctors. If needed, find an independent health advocate or geriatric care manager for consultation and guidance. Search the web for reputable sites (e.g., American Diabetic Association (ADA), National Cancer Institute (NCI), Alzheimer’s Association, etc.) to gather medical information.
  6. Finally, never give away your right as family caregiver to ask questions, to understand treatments and plan of care, and to assist in making informed decisions that are right for your loved one.

 

I hope that Bob’s story can help other caregivers to prepare for medical crises and anticipate problems that may be encountered in today’s impersonal and chaotic health care system.

Caregivers matter!

Caregivers matter!

It is a shame that the public still doesn’t understand the importance of caregivers. They are rarely included in popular discourse, thus remaining the “invisible patient.” Caregivers need much more financial and emotional support than they are currently receiving from employers, public services, and insurance companies. Our collective voice will grow stronger with an increased public awareness of the struggles caregivers face. So tell your family and friends, tell the world and tell yourself: caregivers matter.

Here are some important stats to have handy

  • More than 65 million people (lastest figures show 90 million), a third of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.
  • The value of the services family caregivers provide for “free,” when caring for older adults, is estimated to be $450 billion a year. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).
  • The typical family caregiver is a 49-year-old woman caring for her widowed 69-year-old mother who does not live with her. She is married and employed.
  • Approximately 66% of family caregivers are women.
  • More than 37% of caregivers have children or grandchildren under 18 years old living with them.
  • 1.4 million children ages 8 to 18 provide care for an adult relative; 72% are caring for a parent or grandparent; and 64% live in the same household as their care recipient. Fortunately, most are not the sole caregiver.
  • 20 hours per week is the average number of hours family caregivers spend caring for their loved ones while 13% of family caregivers are providing 40 hours of care a week or more.
  • Family caregivers are the foundation of long-term care nationwide exceeding Medicaid long-term care spending in all states.

From the National Alliance of Caregiving.

Caregiving-in-USA-Stats1

Why Caregivers Matter

  • Many are baby boomer women
  • They vote
  • They have a compelling story to tell
  • They represent key American “family” values
  • They have valuable knowledge to share
  • There are a lot of us!

Why Caregivers Don’t Matter Enough

  • Many don’t identify with the label
  • Caregiving limits available time
  • Many have not translated story to political message
  • They have not mobilized their other membership organizations
  • They are unaware of their strength in numbers

From the Alzheimer’s Association Presentation on The Role of Caregivers in Advocacy

How can you help a caregiver?

Caregiver’s glossary

Caregiver’s glossary

Caregiver GlossaryWhether you are just starting out on your caregiving journey or you’re a seasoned caregiver, we put together a caregiver glossary that might be of some use for you. Feel free to add any terms that you found helpful along your caregiving journey in the comment section below.

Advocate

An individual or organization that defends and fights for caregiver’s rights.

Bereavement

The grief of losing a loved one.

Care mission statement

A reflection of caregiving goals and caregiving personality, including a respite schedule, hopes, and wishes for both the caregiver and patient (The Working Family Caregiver, Denise M. Brown).

Care plan

The role each family member and medical professional will play in the patient’s treatment.

Care recipient or Caree

The friend or family member recieving help from the caregiver to perform daily living activities.

Caregiver or Carer

A person who has provided or is currently providing unpaid care for a friend or family member who has a health condition. A caregiver can help with household chores personal needs and/or healthcare; including managing finances and arranging outside health services (AARP, Caregiver Identification Study).

Caregiver burnout

The physical and emotional exhaustion that caregivers experience when the effort put into patient’s care is not adjusted for by self-care.

Caregiver health

Symptoms not unique to caregivers but very common. These include depression, isolation, sleep deprivation, back pain, anxiety, stress, and loneliness.

Chronic disease/illness

A persistent or long-lasting condition.

End-of-life care

A medical plan that includes the patient’s and family’s wishes for those will a terminal illness.

Family caregiver

Someone providing unpaid care for a friend or family member.

Family responsibilities discrimination

Biases or misconceptions about caregivers and their work performance that restricts them from promotions and weakens their job security.

FMLA (US)

The Family and Medical Leave Act permits working caregivers at eligible companies to take up to 12 weeks off to care for a parent, spouse or child.

Home care

When the patient is cared for at home rather than a nursing home or assisted living facility.

Home health aide

A professional caregiver that cares for the patient at home.

Home modifications

Adapting one’s home for patient accessibility. Typically providing ramps for wheelchairs, handrails on stairs, making room for medical equipment, etc. It can also mean changing around bedrooms or altering common areas.

Hospice

Focus on palliative care, helping to comfort patients with painful symptoms

“Invisible patient”

A term coined for caregivers who often suffer unchecked physical and emotional consequences as a result of their loved one’s diagnosis

Long-term care

Patients with a lasting injury, illness, or condition that requires assistance for an indefinite or extended amount of time.

Long-distance caregiver

A caregiver who cares for a family member or friend despite a geographical boundary. This type of care can include periodic visits or phone calls, financial support, research, and/or arranging healthcare services.

Medicare (US)

A system designed in the 1960’s for people in their sixties to help cover acute care problems. Today the same system is ill equipped to help people in their eighties with chronic conditions (NFCA, Family Caregivers and Caregiving Families, 2001).

Medicaid (US)

Healthcare for people of low income or with few financial resources

Palliative care

Maintaining quality of life and comfort for those with a terminal illness.

Primary caregiver

The caregiver that lives closest or with the patient and/or the person who is contacted in case of an emergency.

Proxy

The patient’s representative, able to make important decisions regarding care when the patient is incapacitated or unable to give consent.

“Quicker and sicker”

Changes in healthcare policies and reimbursement cause patients to have shorter hospital stays. Caregivers are called upon to adjust for the shorter period of treatment.

Respite care

A form of self-care that allows the caregiver a period of rejuvenation and rest.

Sandwich generation

The generation that takes care of both children and aging or sick parents.

Self-care

A stressed importance of regular exercise, healthy food, and regular doctor visits. Self-care also includes allowing for a respite, a regular sleep schedule, and seeking professional help when needed.

Self-identification

A caregiver who is self-aware of his or her caregiving role. About 20% of caregivers do not identify as so due to a lack of awareness or fear of discrimination (AARP, Caregiver Identification Study).

Support group

An online, personal, or telephonic communication with a group of people that understand the challenges of caregiving and are able to offer advice from their own experience.

Support network

The people in a caregiver’s life that provide respite care, emergency care, and/or emotional support including family, friends, medical professionals, and fellow caregivers.

Young caregiver

1.3 million people, age 8-18, grow up caregiving for a loved one. Children are left to care for loved ones as working parents or single parent households become more common and the elderly population grows. These youth will take charge of personal and medical care, household management, supervision, and emotional support.

For Friends and Family of Caregivers

For Friends and Family of Caregivers

Dear Friends and Family of Caregivers,

First off, thank you for the love and support you have shown the caregiver in your life this far. You want to help– that’s great! Caregivers could use some support.

What to Say and How to Help

  • The caregiving role can be isolating, demanding and at times feel unmanageable. It is natural for a caregiver to feel the burden of sole responsibility for a sick or aging loved one and, as time passes, it becomes less instinctive to ask for help.
  • For as much as the caregiver in your life may need you to step in, s/he may have trouble vocalizing it or understanding what kind of care others can manage. Your support means everything to a caregiver.
  • Try not to voice any judgments that you may have. No matter how much you love someone, it is natural that you might disagree with a friend’s behavior or action. But it is important that you provide a safe, judgment-free space for your friend. The role of caregiver can bring up a lot of unexpected and confusing emotions, like resentment towards someone who is sick. Try to put aside any preconceived notions and listen to your friend. They may be ashamed of what they are feeling and will need someone who will comfort them by telling them it is a normal feeling.
  • Be both specific and general in the support you can provide. For example, say you are always around to talk but tell the caregiver in your life that you are available at a certain time if s/he needs to talk. Ask if they need anything but also say you’re stopping at the pharmacy and offer to pick up a prescription.

There is no expectation to devote all of your time, energy and resources but every little action you take will be a big help to your friend or family member.

How to clean as you cook

How to clean as you cook

The best part of cooking homemade meals is, of course, getting to eat the fruits of your labor! But clean up can be such a bother, sometimes its just easier to go for the pre-made meals or, worse, fast food. By planning your cooking to minimize time, mess, and hassle you can make eating healthy so much easier! I’ll guide you through how to clean as you cook, so you can have delicious, healthy meals without a big mess at the end.

Read your recipe ahead of time and prepare what you can. Often, vegetables can be chopped up to a few days before cooking. Some ingredients, such as spices, herbs, flour, can be measured out beforehand and combined.  Look for ways to combine as many ingredients as possible in as few bowls as possible. For instance, vegetables that are to be cooked together for the same amount of time can be added to the same bowl.

Be sure to start with a clean, well-organized kitchen and an empty dishwasher. Keep your frequently used ingredients and dishware in easily accessible places. Also remember to occasionally clean out your cupboards, drawers, freezer, and refrigerator so you don’t have to dig around, emptying out entire shelves looking for what you need. Also keep the amount of clutter on your counter to a minimum to optimize counter space and prevent things from getting food splatter on them.

As you wait for your oven to warm up or water to boil, finish prepping as much as possible. Set up a wash-chop-cook chain that reduces the amount of area covered. This reduces drips as you carry food over the least amount of space. Also keep a plastic bag just for scraps and trash on the counter so you don’t have to carry waste clear across the kitchen to the trashcan. Wipe up spills as they happen to keep the kitchen clean and safe, preventing slips and falls.

Keep mess to a minimum by using as few dishes as possible. Combine ingredients and use the same bowl for cleaned vegetables. Remember food safety practices, however; keep uncooked meats separate from vegetables. Use liners like tin foil or parchment paper – clean up is simply a matter of tossing the liner out!

Retain as much space as possible by stacking dirty dishes. This helps to maintain a clean and uncontaminated workspace. While you are waiting for your meal to cook, use that time to clean up as much as possible. That way you don’t have an entire kitchen to clean after eating when you’re full and happy. If you don’t have enough time to actually wash dishes, at least rinse them to prevent food from drying, making them more difficult to clean. By doing as much as you can beforehand and cleaning as you go, you can keep your mess to a minimum and actually enjoy your healthy, homemade meal!

What to Do When You’ve Reached Your Breaking Point as a Caregiver

What to Do When You’ve Reached Your Breaking Point as a Caregiver

We’ve been there and we’re here to help.

Here are some suggestions from fellow caregivers

I am at my breaking point right now. And the thing that is helping me…is solitude. I find a few minutes throughout my day that is quiet. No phone, tv, people just peace and quiet. Reflect on the positive reasons you are a caregiver.Kristal S.

Share your feelings with organization, GP or support group that may be able to help you. Use this page as a means of “sounding off.” – Rosie H.

I also find that if I just sit down and make a list of things I am happy about or things I have accomplished…. A vocation whether it is a wife, mother, or caretaker of a sick, injured, or elderly person is infinitely more rewarding and meaningful than the worlds version of a happy life. – Jamie C. 

“Nothing ever lasts for very long.” I have found validation in those words through many situations that have come my way. It does seem to keep things in perspective for me. – Patti G.

I took those moments when mom was asleep, to just go outside and grab some gulps of fresh air, some rays of sunshine or even a little bit of rain, to remind me that I was ALIVE. – Sugarpie Hunnybunch

First PRAY and realize it is at that point that you need a break. I keep Starbucks Frappuccinos in the frig for days like this. I pray sing & enjoy a frappuccino! Find what works for you & do it. No one can love you or take care of you in a moment like this better than you! – Eletha A.

I breathe deeply and believe this too shall pass. And it does. Takes a toll though. – Mary M.

Caregiving is not forever. There is always a light at the end of the tunnel. Just remember you are someone’s angel and think of where they would be without you. Keep up the good fight! – Mark S.

Every situation is so unique. Getting away would be ideal–completely removing yourself from the situation for as long as possible. Possibly admitting that your personal health is at risk and you’ve done all you can humanly do and your loved one needs a more skilled placement. – Dulcie N.

Breathe. It’s just about the only answer when your family wont help. – Diana K.

Find a place that is all yours. A bathroom, a spot in the yard. Fall to yours knees and scream. And while you are down there thank God for how far you have come and ask for the strength to get you through this. And ask someone for help. Hugs and prayers to all who feel this way. My journey is over for the time being. And don’t feel guilty for feeling relieved for it being over. – Tina D. 

A handful of Oreos and milk helps too. – Gail F. 

It’s OK to admit you’re unhappy or sad and maybe even lonely. Say out loud how you feel, maybe not to the person you care for, but just say it when you are alone. Admission is very releasing. If you can’t verbalize what you feel, start a journal. Writing has helped me greatly. – Luci B. 

 Maybe just turning to the person closest to you and seriously letting them know how you feel and that you really don’t know what might happen if something doesn’t change. – Vicki H. 

Create a sacred space in your own home where you can be alone for even 5 minutes. Or ask someone to be with you in person or phone for 5-10 minutes, and simply ask them to listen with 110% attention without responding. – Jay K. 

I love M & M”s so I buy a bag and my favorite magazine and just enjoy myself for a little while. Always helps. I also have literally screamed into a pillow to let out my frustrations (making sure my loved one can’t hear). Sometimes the hardest thing is not to feel guilty if you enjoy yourself. I have to tell myself it is an ok thing. – Dianne M.

Even if you can’t physically get away, try to carve out as many “mini-breaks” as you can during a day. – Jeannette L.

Hospice can help get relief for the caregiver. – Antoinette H.

Step back…regroup…and remember why you do what you do. And the lives you’ve made better and the hearts you’ve touched with your love and compassion. – Debra J.

Make sure you eat healthy. It seems crazy but good food does help. – Jana B.

5 more minutes, then another 5 more, count to 60 and then again, say a prayer, hold your breathe for a minute or so, say another prayer, count to 60 again and then force yourself to get up, go for a walk, garden, meditate, whatever until you reach that stillness inside of you which no person, no event or circumstance can touch, remind yourself of who you are, why you are doing what it is you are doing and then go and do that thing. – Virginia B. 

Meditation. Peace and quiet. Those things have saved my life. Also, some Prozac has been very helpful. My facebook friends have also helped a great deal. I have found that your breaking point will stretch. – Kerry D.

Talk to someone you trust. Have a good hard cry. Cry until you get it all out. – Bobbi C.

Go lay down on the closest piece of grass you find and look at the sky, take a deep breath, cry, and then get up and get at it again… – Rachel S.

My aunt takes me out once a week to an hour comedy show and the laughter is a great release. – Danielle H.

I keep a prayer journal. Quite often I rant. But usually I start writing down all that I am thankful for. – Maribeth C.

It’s hard but worth it in the end. – Garcia

THIS is the Reality Your Employees Are Living In: Caregivers’ Stories Behind the Stats

THIS is the Reality Your Employees Are Living In: Caregivers’ Stories Behind the Stats

Today we know that seven out of 10 caregivers work full or part-time and make up more than 15% of the U.S. labor force. But these statistics only tell part of the story. The real story is told by the caregivers themselves, many of whom have been laid off because of caregiving, or were forced to quit their jobs, or are only now re-entering the workforce after a decade.

We recently asked our community of over 30,000 to share their story with us. Employers, corporations, small businesses, listen up— these are the experiences, not just the numbers, of what your employees face as caregivers.

Have you had to leave the workforce because of increased caregiving responsibilities? What has that been like for you?

I stepped down from a job I loved to care for my mom, it’s the hardest thing I’ve ever done. – Reese K.
I lost my job because I couldn’t tell my then employer when my mother was going to get better. They weren’t willing to work with me or change my shift. I also had to withdraw from University too. – Apria G. 

Being a nurse I just went from paid to unpaid and there is no escape. – Karen P.W.

I am 60 and trying to re-enter the workforce after a decade spent caring for my mother who was challenged by Alzheimer’s and dementia. – Kimberly H.M.

I left my job as an office manager a year ago to help my husband. He was hit with an IED in 2011 and shattered 7 vertebrae. He is in constant pain 24/7 and due to all the nerve damage he has to use a catheter for the rest of his life and he is just only 36. – Jennifer S.

I quit my job to take care of my mom. It would be nice to have some extra income coming in. – Karen S.F.
I quit work 4 years ago. Of course when my husband improved somewhat I was sorry because of loneliness and stress, and because my life has become so small. Now I find myself at 63 not really having the energy to take up with a new job. The caregiving life is very limiting… often depressing. – Mary M.

I lost my job a year ago and have not been successful in finding employment. I am okay with that because I am fulfilling my purpose here, caring for my mom. I don’t get breaks, vacations or days off but I wouldn’t trade my life for anything. – Michelle P.

Financially horrible. – Janet Winter

I retired early to move back home with my parents 5 1/2 years ago. My sister was here but wanted to put Mom in a nursing home– she was still active at that time but had quit driving. She lived in the yard in a mobil home our parents had bought for her and her family to live in rent free. She would go for days and not check on them. When I came home she got mad and moved to another state. I am now receiving SS and thank God everyday I still have my parents my Mom is 90 and had moderate Alzheimer’s and my Dad is legally blind with congestive heart failure. It is just me and my grown kids they have their lives but do help. – Hilda T.

Left my job in 2001 to take over as spousal caregiver, monthly paycheck below poverty level, hours increased. To say it has been easy would be lying, learned how to get by on next to nothing, stretch a SSI check to last all month. Would I do it all over again if needed? Yes I would. – Charles S.

I had to take early retirement when it became apparent my husband could no longer be alone for any but very short periods of time. He is now in stage 6 Alzheimer’s, and I can not leave him long enough to even go to the bathroom. He calls out asking where I am. We have sold our home and moved into a travel trailer to make it easier for his need to be close. The only time he allows me to be more than 15 feet from him is when I am preparing supper. It’s hard not having friends anymore, and family is to far away too. But I know that this too shall pass. Picking up the pieces will be another story. – Judith H.

I had to quit working for 6 years b/c all working + caregiving was was just burning me out. Since we were receiving Housing assistance (sec 8) and SSI, any money I made went to those programs. It just didn’t make sense for me to keep working. And now, my husband and I have been separated over a year, now in the process of getting a divorce, I was forced out of our house, had to move in with my parents, and have been working a part time job training program for the last year, and am doing what I can to find a full time job so I can be on my own… caregiving is hard enough on its own… but the additional financial burdens… especially those ‘helped’ by outdated gov’t programs, can be enough to break the caregiver camel’s back– it’s just one of many things that broke mine, and caused my to get burnt out and for our marriage to fail. But the gov’t doesn’t care about that– they just care about saving pennies now, so they can spend $$ on Nursing Homes in 5 years!!! something needs to change… – Rebecca H.

I quit a job to care for my 90 year old Grandparents. I have done some freelance photography over the 4 1/2 years I have been a caregiver. I took on a temp job last winter for almost 5 months and it just about killed me. It is a constant fight within yourself that you should be able to do more. – Chris M.

I was an HR Director. I thought that job was tough… Nothing like a caregiver when it’s your own family. Wow. – Stefanie W.

I am caring for my 86-year old father (Lewy Body Dementia) & 84-year old mother (Alzheimer’s). I was stressed at work due to my parents still living at home all alone. I resigned from my position at a local high school in order to care for my parents full-time. – Maria C.

Quit work in 2012 to take care of mother in law. Since then, my mom has moved in with us. It is a roller coaster ride. My husband still works, wish I did. I do the best I can, wonder if its good enough… I want to do good, not sure if I am, trying though. No help, just me and hubby doing what we can. – Rita C.

I left the workforce to deal with the VA for my husband. We have had a very long road and this year we have come to find out my husband might have a TBI that has NEVER been looked at. I work more hours now (with no pay or help) than I ever did as a bank teller. – Kristen D.

It’s changed my entire way of life. We ran through both my mother’s savings and mine paying for daytime care while I still worked. Now the two of us try to survive on her Social Security. There is nothing left at the end of the month for even small luxuries–hair cuts, a mani/pedi, a bottle of wine, a restaurant meal, even a soda from a fast food restaurant on a hot day are all things of the past. The stress of trying to find money for a trip to the veterinarian or a home repair, added to the isolation and no respite care make life a pretty unrelenting weight on my shoulders. – Betsy K.

woman holding her fists in front of her face looking up

First I tried cutting back my hours. I ended up not being effective at work or as a caregiver. The job had to go. It’s a good thing too as my father-in-law needed more and more care. It was very hard bit it also gave me the time to connect with him in ways that would not have been possible otherwise. His moments of clarity were fleeting but they revealed an innate intellect far beyond my own and glimpses of an extraordinary life. Tough as it was is do it all again. – Bobbi C.

My son was in a car accident in ’04, he has a brain injury with right sided semi paralysis. I took a leave for 8 months to be at the hospital where he was recovering. When he came home I quit my job to care for him 24/7. Family helped a little in the beginning. I almost lost my home, but was able to save it. It can be hard, but it is always rewarding. I love son and couldn’t imagine him being in a home. – Valerie F.

It’s hard, this is my job and I know if I got another I couldn’t care for my mother anymore and they make it harder, I work for the state as a in home care provider but they make it tough for us, always cutting pay or hours but still, I never really get a day off or holiday, it’s an all day task but I love my mother. – Jessica S.

We made $37 over the allotted limit for any assistance, so I ended up signing my house over to the state so I could get home a health aide while I work 50 -55 hrs per week. They’re worthless except they do take care of my wife when they show up (we’re on our 27th home health aide & 7th company). I still have to do everything else which has been pretty hard on me for the past 5 yrs, my family is spread out through out the world and her family which is only 15 -30 min away can’t accept what the MS has done to my wife so they stop coming over and stopped calling which puts everything on my shoulders.- Jerry D.

I gave up my job 30 years ago to care for my newborn daughter with severe needs. We were eventually told that she probably wouldn’t see adulthood. She turned 30 this year! I have been her primary caretaker her whole life. – Mandm M.

I’ve lost quite a few jobs… The worst was the job that said I had to find him another way to get to his surgery and then told me later that same day that I had to choose between my family and my job (but they claim they are family oriented business). I walked out. There are better jobs out there that actually understand what it’s like to caregiver. – Dana J.

I quit my job when I was 4 months pregnant so that I could take care of my quadriplegic husband. Its been emotionally, financially, and physically tough on me and my family. I want to put my son in daycare part time, but can’t afford it. We live off of SSI, but still can’t afford IHHS. – Elizabeth R.I have lost 2 careers in education, a music career and a business in the last seventeen years and haven’t had an income for 4 years. – Melanie H.

Left full time teaching in 1998 to care for my parents …started a new era…lots of work…and joy. – Sheri M.

I’ve been caring for my mother since November 2011 and I haven’t worked since. It’s been very difficult financially at times. I was a 9-5 worker and haven’t really found anything that would allow me to work at nights or weekends other than a nursing facility I just started working at on the weekends to get my business up and running. – Basia M.

I look after an ex boyfriend 24/7 I am pretty much stuck to the house he is at a high risk for seizures and chokes all if given to him by feeding tube. So my life for now is gone. No friends, no family. Its hard but, no one else to do it. – Cheryl M.

I’ve been lucky as my work is understanding. That said… It’s HARD to work outside the home & be a caregiver. I question it almost daily. – Norma C.

Once he was Bed Bound over three years ago there was no way to even keep part time work… Someone to care for him would have cost more than I made at this point. It has been a financial mind field but that is as much to his loss of work as mine. We are now existing on my retirement and his disability from SS. It doesn’t go very far, so we just work at being very very frugal. – Pat F.

Still working full time 6 years in, but because of unreliable hired caregivers who come while I am at work, and no help from family, I have had to quit my 2nd (part time) job and use all my vacation and sick days to cover when they are off. I haven’t spent a night in my own home since mom got sick. I stay at her house and am there whenever I am not at work. Had to file bankruptcy and almost lost my house twice. – Dee M.

I lost a job over it. – Suzanne D.

I had to take extensive time off last year during the summer, and into the beginning of fall, when my middle son had multiple surgeries on his legs (hamstring and heel cord lengthenings, two bone grafts per foot, and femoral osteotomy on both legs). This year I will have to stay home with another child during the summer, because his private preschool doesn’t offer summer school, even though he has an IEP. I’m going to have to do extensive ABA and speech “therapy” with him as best as I can at home. – Amie S.

Yes, it makes the isolation even more extreme and worries about money grow stronger. Hoping to get back on call so that I can work when things are quiet. – Ann C.

I did quit my job to look after my mother and it was hard because I didn’t qualify for unemployment insurance because I quit for no reason according to the government and the other one was the person you are caring for had to die within 6 weeks of benefits… But we made it work for two years until mom passed away 3 weeks ago and now I have to enter back into the work force and at 55 years old companies don’t really want me. I am too young for retirement age and my husband can’t pay for everything so now I have to. – Lorie G.

About a month before my husband found out he had AFib I lost my job. Four months later we found out he had Lewy Body Dementia. I haven’t been back to work since then, largely because I took care of my husband until he died last July. Since then I’ve been dealing with my own physical problems, which occurred as a result of taking care of my husband. I am now 59 years old and I don’t think I’ll ever be able to get another job. – Beth T.

What would be the greatest help corporations and businesses could provide to caregiving employees?

 

In your own words: 106 crucial tips from fellow caregivers

In your own words: 106 crucial tips from fellow caregivers

Recently, we asked you to share one piece of advice, or one tip, that you’ve learned through caregiving and how you avoid caregiver burnout. You had some amazing words of wisdom to share. Interestingly enough, many of you learned some very similar lessons — here’s what we found and what you said:

Breathe for Patience

1. “Patience. Much patience. And laughter is a close second!” – Tammy Lewis

2. “Breathe patience and understanding” – Karen Sulski

3. “Deep breaths and plenty of patience” – Cari Bergery

4. “Breathe… Take a moment in the midst of the chaos and just breathe…” – Annette Weber Andrews

5. “Be patient and love your patient as you love yourself.” – Cherel Verana Bustamante

6. “Always take a moment and breathe.” – Cheryl Montague

7. “Patience, understanding and heaps and heaps of love.” – Rhondda Rosenow

8. “Be patient and pray for strength.” – Denise Davis

9. “Hold on! The good outweighs the bad!” – Helen Tisdale

10. “We all lose patience at times, forgive yourself. Show your love, a kiss on the cheek, holding hands, and that precious smile they give back even though they don’t know us anymore means so much.” – Donna Bills

Make This a Non-Negotiable Top Priority

11. “Schedule self-care as a non-negotiable top priority.” – Michelle Poppleton Chumsae

12. “Take care of the one in the mirror.” – Paula StpierreChalker

13. “Take time to rest. You can’t help others if you don’t realize your limits.” – Bobby Arnott

14. “ALWAYS make time for yourself. It’s not selfish of you to do so. Separate yourself from the situation and do something for YOU and YOU ONLY. That was one of my biggest challenges in the beginning of my husband’s TBI. I would feel guilt leaving his side, but you have to train yourself to think otherwise. It keeps you sane in the insane moments when you’re able to walk away for a second.” – Kristina Zamora

15. “Take some time for yourself everyday.” – Amie Lynn Green

16. “Take care of yourself so you can take care of others.” – Diane Croy

17. “Please take time to take care of yourself, this is so important physically and mentally.” – Wyoma English

18. “Make time for yourself every day. Even if it’s just a short walk, shower, or eating lunch outside. Taking a little ME time is important to recharge your batteries so you can continue caring for the person you are caring for.” – Heather McBeth

19. “Take time for yourself. It is so important. I exercise and the strength it gives me to lift my dads wheelchair and other things. But it also helps my depression and anxiety.” – Jill Reincke

20. “Put self-care first or you will end up a martyr needing self care and those who didn’t show up to support you in caring for another won’t be there to care for you.” – Pat McDaniel

21. “Make time for yourself even if its five minutes here or there. If you don’t take care of yourself how can you take care of someone else? I know I had a breakdown in the midst of taking care of my mom and bro and turned into the one needing care for a couple of days.” – Annie Newman Crawley

22. “Maintain your own health…” – Darlene Tabangcura

23. “Be kind to yourself. If you don’t care for yourself, you’ll have nothing to give…” – Susan Grace

24. “Look after yourself first, even if it means screaming loudly for help!” – Jaci Wiley

25. “Take time for yourself. Do a hobby that you love, pamper yourself, visit with friends and loved ones, and see the doctor if you need to.” – Jessica Hope

26. “My heart, mind and soul was on my husband, praying with him, caring for him and being advocate. But I knew in order for me to be well I had eat well, sleep well and find a mentor for me.” – Jacki Smallwood

27. “Remember to bend those knees when lifting. Know your limit when lifting. I wish I had listened I thought I would be 23 for ever and I would never loose my strength but I’m 49 now and have had many surgeries for injuries caused by not being careful & knowing when to ask for help. So do yourself a favor and know your limits.” – Sylvie Perez

28. “When given time off, don’t overtire yourself.” – Kathelene Almanza

29. “Take care of you it will get you through…” – Donna Kukura

30. “Making time for yourself is a MUST otherwise you will lose yourself. Recognizing that there will be some good and bad days and being ok with that and remembering your only one person. Put yourself at the top of the list. If you don’t take care if yourself, you won’t be any good to anyone else…” – Renee Ferguson

31. “Make time for yourself… Like the stewardess says ‘put the oxygen on yourself first’ so you can help others. I was physically sick many times being so exhausted and did not know where to turn…” – Cindy A. Hardison Rodriguez

32. “Make sure you take a few minutes for you, the caregiver is as important as the person being cared for.” – Lisa Fletcher Richer

Live in the Moment

33. “Never get angry. Live each day as the last. Laugh. Smile. Cry.” – Kayla Huebner

34. “It’s not ONE day at a time, start with breakfast and work your way toward lunch… just a little at a time.” – Stacey Gordon

35. “Cherish those special little moments.” – Karen and Pavel Blaho

36. “Let things go for the day, when you go to bed. It helps start the next day a bit easier.” – Leota Endicott

37. “Life is like raindrops, you don’t know which one is going to get you wet—Stay warm and comforted, the sun will come again.” – Judy Ann Kent

38. “It’s all about the moments, cherish the good, distract the bad… Love through all.” – Patty McCoog McMahon

39. “Take one moment at a time, moods shift quickly with the ill person. Very difficult for only one caregiver to deal with.” – Pam Roche

40. “Take it one day at a time and breathe!” – Beverly Axel Smith

41. “Remember nothing last forever and take one day at a time.” – Concepcion Ocegueda- Thompson

Keep It Practical

42. “Mouth breathing while diaper changing.” – Jennifer Oertwig

43. “Humor goes a long way. So does kindness and love.” – Tammy Martin

44. “Patience and a sense of humor… Loving heart…” – Lora Lee Ziegler

45. “Pray a lot and think positively!” – Patricia McHugh Santmyer

46. “Sleep when you can.” – Tori Webb Woods

47. “Be kind.” – Susan Wiffill

48. “Get an elder care attorney involved soon. Alzheimer’s is a devastating and costly disease.” – Christy Dave Hirschman

49. “Get a good social worker in your family’s corner.” – Rosanna Maher

50. “Don’t be too proud to accept help when needed.” – Marjorie Deuell Fox

51. “Let people help you. It is a gift to them to be able to do something and it will help both of you. Don’t be a hero or a martyr. Prioritize and delegate when people ask what they can do.” – Jane A. Tilleman

52. “Ask for help when needed. My hubby, and my dad require 24 hour nursing care… They forget how big a load I got to carry not including my own.” – Celina Markishtum

53. “Make as many connections as possible that can help the person you are caring for along the way, whether it be financially, medical or social. There are many resources available—just ask.” – Mary Frances Kovack Studzinski

54. “Listen to specialists. There are wonderful services in the public, charity AND private sector who can help. None of them work with each other so you need to prepare your own special network of all three.” – Lucy Woodhouse Haughey

Vent, Connect and Let It Go

55. “It’s ok to vent. Let it out then let it go.” – Trish Ashby

56. “Find the real people who have really walked your path… My closest friends are people I met on the internet with kids about the same age and diagnoses. We have a closed group on Facebook where we can say anything. And we have also made a point to meet in real life. I would have gone insane without these people. Truly.” – Amber Stilwell Fergason

57. “Don’t feel guilty for feeling angry. It’s natural. Deal with it as constructively as you can.” – Ali Costine

58. “Do not allow yourself to become isolated!” – Leslie Ann Shields

59. “Create relationships with those who share similar struggles.” – Kara Davioni

60. “Never have any expectations that family will help and support. I did and it was a costly mistake in the early years. And try not to get too isolated as I did, it’s devastating.” – Megan Northcott

61. “Let go of the need for control.” – Liz Gary Maurice

62. “Let go, let go and let go!” – Diane Godlesky 63. “Try to let go of the mistakes.” – Cindy Morris

Remember Your Loved One

64. “They mimic your emotions always smile stay calm and love wholeheartedly.” – Cassandra Friend

65. “Remember we (survivors) don’t like being dependent either. Sometimes we may say thing we don’t mean. There is a lot of frustration on our part because we can’t do things we used to do.” – Rick Ernest

66. “When dealing with dementia, a hard lesson I have had to learn is not to correct my mom. Who cares if she says it’s Tuesday when it is Saturday? The most important thing for me is to stay healthy-my gym time keeps me strong inside and out and better able to handle all challenges.” – Melanie Malone Weaver

67. “My disabled adult son always says to me ‘I would do the same for you, Mom’ and I know he would if he could. Keeps things in perspective for me.” – Malia Lovell

68. “Instead of trying to bring your loved one to your side of the river, go to theirs. Try and truly understand what standing in their shoes is like. Join THEIR journey.” – Diane Marie Jurgensen

69. “Never forget the person they used to be. They have not CHOSEN to be dependent. Remember them at their best.” – Beth Bodette Rymer

70. “Don’t take their aggression personally. They may not know they are being aggressive towards you, it could be a part their disease ‘talking’ or they could be just having a bad day. Walk away when and if you need too so things can calm down and remember to breathe. It’s ok to ask for help also.” – Maria Medina

71. “Remember they are doing the best they can even though it doesn’t appear that way sometimes.” – Christy Dave Hirschman

72. “They may not remember what you said but will remember how you made them feel.” – Amanda Konrad

73. “Treat them how you want to be treated.” – Celeste Morrison

74. “Do unto others…” – Adrienne Gruberg

75. “Try to see them as they were and deal with them as they are, you will be angry, frustrated, hurt and overwhelmed but when the end comes you will know you did all you could do and feel no remorse, only sadness for the loss.” – Suzie Horak Marcin 76. “Try to remember that your loved one would love to not have to be cared for.” – Joyce McMahon

77. “Remember the love you share… Let it be your guiding light.” – Judith Bateson

78. “Touch, for a patient, can be so healing. Rub their forehead, ask if they want their hair combed, or hold their hand. Knowing someone truly cares is so very important for their peace of mind.” – Sheila-Lynne Beal Wurzer

79. “Leave no kind words unsaid. Remember the Golden Rule. You might be the caregiver today and someone else may be your caregiver tomorrow. Be the one you would want for yourself. It won’t always be easy, but it will always be worth it. Give yourselves the much-needed breaks and take some guilt and duty free trips, when you can. When it feels like the weight of the world is on your shoulders, shrug it off and let love fill your heart, because your sacrifice, your care and your service has made a difference.” – Karen and Pavel Blaho

80. “The person you are taking care of appreciates everything you are doing more than you will ever know.” – Belinda Hall

81. “Treat those you love and care for the way they treated you your whole life. With love and respect.” – Tracy Johnson Pegram

82. “Try to be kind at all times. They need us to help them. Not everyone can do what we do. Hang in there. It’s just a season.” – Deb Krause

83. “ALWAYS have compassion!” – Amber Gryder

Speak Up and Stand Your Ground

84. “Take help when it’s offered. If no one offers, ask.” – Devin Ball

85. “Be firm with your decisions. I take a lot of questions and nitpicking from my husband’s family. At first it gave me such bad anxiety and I was so unsure of myself. I had to learn to stand my ground.” – Ambre Irby

86. “Don’t be afraid to ask others for help!” – Sue Bastien

87. “If you have to, LEARN to ask for help from others.” – Adrienne Gruberg

88. “Don’t be stubborn and try to do it all, when someone offers help accept it if possible and ask when you need it. Burn out is no joke…” – Mandy Ladd-Lueshen

89. “Choose your battles wisely. Only fight the ones that will make a difference in the end!” – Lisa Ward Arnold

90. “Pick your battles. Only fight the ones you can win.”

Keep It in Perspective

91. “Understand and come to terms with your limitations as a caregiver, and don’t be too hard on yourself because you’re not able to fix everything.” – Adrienne Campbell

92. “You ARE good enough! Don’t ever doubt that you are doing enough. Sometimes you’re taken for granted, sometimes you are the one to take the anger and the hurt… Remember it is because you are the one they love and trust the most.” – Vicky Klass Cramer

93. “Be as kind and forgiving of yourself as you are of your caree.” – Leanne Irwin

94. “Remember that you are only human so don’t be too hard on yourself.” – Norma Cole

95. “The days are long but the years are short!” – Anne Webster

96. “Recognize that you are doing your best, day in and day out. Some days will be better, some not – but always give yourself the credit you deserve. This is a labor of love and a difficult job all rolled into one.” – Susan Keller Suresh

97. “Take breaths: No, nothing is normal and nothing goes as planned—it is okay to cry every so often.” – Tabatha Dean

98. “Don’t forget that you are the most important part of the process.” – Bruce Solomon

99. “One day at a time. If it doesn’t get done today, life will go on.” – Mary Frances Kovack Studzinski

100. “Just keep everything simple!” – Cathy Martinez-Blackwell

101. “Remember that you are human! What you have to give say or do is precious.” – Lorinda Hilliard

102. “Remember that it could be you or your loved one be a positive light!” – Sharon DaGreat Elicke

103. “You can help with love but remember you can’t fix everything and it important to make time for yourself and don’t blame yourself… We are not perfect people no matter how hard we try to be!” – Alan Thym

104. “Be patient and think, this could be me!” – Kristinna Stephens

105. “Don’t take words said or things done to you personally… It is so hard to do sometimes… Today has been one of those days with my mother…” – Gail Williams

106. “Imagine you were in their shoes!” – Scott Troxell

Your Turn

We want to know: did you agree with the advice? What stood out for you? What advice would you offer a new caregiver? Let us know in the comments below!

Do small things, with great love

It’s February. We’re waiting and watching as the Valentine’s promotions begin to pour in.

This holiday often proves to be bittersweet for many caregivers. Perhaps our spouse has become someone we no longer recognize. Or caring for our parents has made our own loneliness even more profound. Or maybe now it’s harder to spend alone time with your partner when your child needs care. Caregiving seems to wrap limits around grand gestures, and makes room for only small changes.

Fortunately, love doesn’t need much space to be felt. This month, we’ll remind you to do small things with great love.

Share it if you’ve done it! Email us or post it to our Facebook page.

 

Top 6 Blogs for Caregivers (Aging Parents Edition)

Photo credit: dark_ghetto28

Blogs have proved to be highly valuable for caregivers— they are an easy exchange of caregiving information and personal stories. As more blogs on caregiving and by caregivers flood the web, it’s hard to know where to start reading! We’d like to help you start picking from the crowd by rating the top blogs that focus exclusively on “Caregiving for Aging Parents.
[title text=”#6: Next Avenue: Caregiver Support, with 17 points”]

Usability: 4/10. It is unreasonably difficult to find Next Avenue’s blog. And just when you think you’ve found it, you haven’t. This blog’s amazing content is quite the buried treasure.Next Avenue

Presentation: 4/10. Not every Next Avenue post uses the “obviously-stock-photo” photos, so that scores big points. But ultimately the score is so low because of the presentation of the blog. The titles are amazing—but that’s all there is. No eye-grabbing photos, no content description or preview.

Originality: 9/10. Just listen to these recent titles: When the Someone You Love Becomes Someone Else; No Two Families Are Alike, But Guilt is Universal; Caregivers: Fumble Mom’s Money, Go to Jail.

Look for: All of Sherri Snelling’s posts. She’s an amazing writer and a caregiver advocate who really gets what caregivers want to read. Also, be sure to follow Next Avenue’s presence on Forbes and Huffington Post.
[title text=”#5: AgingCare.com: Caregiver Support, with 20 pts”]

Usability: 5/10. This one is a little confusing to use. If you know what you’re looking for, you’ll have a much easier time. But if you’re looking to browse their archives and check out the latest content (like I am right now), it’s frustrating. Aging Care

Originality: 9/10. The originality of the content is what attracted me to this blog. “Why We Need an Alzheimer’s Anonymous” is one of the best posts I’ve read recently (keep in mind that I read over 20 blog posts a day). There are some oddball posts (“Fingernails: 5 Signs That Point to Bigger Health Problems”—granted, I do have an aversion to reading the word ‘fingernails’ in anything) but most articles are completely on point.

Presentation: 6/10. I would like to see more images in both the preview of the post and in the post itself. However, I do love the way AgingCare.com’s newsletter breaks down their recent posts—it’s clean and easy to read.

Look for: Their Tough Issues section as well as the Emotional Wellbeing section. Both are excellent.
[title text=”#4: A Place for Mom, with 21pts”]A Place For Mom

Usability: 8/10. Finally, a clearly marked “Blog” section on the homepage! Points for image + description + titles and relevant categories.

Originality: 6/10. Points off, not so much for originality, but for relevancy. A Place for Mom posts very frequently, every two or three days, so some articles are bound to be a little less interesting than others. I’m of the “post better and less” school—that way readers always know great content is waiting for them.

Presentation: 7/10. I love that they make Pinterest-optimized blog images by overlaying type on an image. The layout of the post is clean and reader-friendly.

Look for: Lists. They’re practical and easy to read.
[title text=”#3: Seniors for Living: Caregivers, with 22pts”]

Seniors for LivingUsability: 7/10. Points off for making the blog hard to find on the homepage. It might be intuitive for some people to scroll down for the footer link, but not for all.

Originality: 8/10. Michelle Seitzer gets a big shout out here. I look forward to reading her posts since she always has some unique insight or experience to offer. The blog posts generally are well written and original.

Presentation: 7/10. Some of the featured images are stretched or squashed. Personally, I’ve had infuriating experiences with blog platforms having their way with my images (I’m looking at you Blogger) so I have nothing but empathy. However, the blog would get top presentation points otherwise. Also, I docked a point for using my least favorite stock photo. Sorry, that one was personal :

Look for: Any of Michelle Seitzer’s posts. Especially this one.
[title text=”#2: When They Get Older, with 25 pts”]

When They Get OlderUsability: 9/10. Very easy to use and navigate. Posts are broken down into clever categories, helping first-time and returning readers find what they’re looking for. Point off for not having one main feed. Okay, okay, maybe I’m being a little picky! I am a big fan of browsing by archives and it’s hard to do that here.

Originality: 7/10. Covers caregiving topics not discussed in many other blogs—including blindness and hoarding—as well as original practical advice, like Stocking the Cupboards.

Presentation: 9/10. Bright and easy to read—plus adorable graphics.

Look for: “Actually, I want to help me.”
[title text=”#1: The New Old Age Blog, with 27pts”]

The New Old AgeUsability: 9/10. No bells and whistles here—this is exactly what you would imagine when you think “blog.” The most recent post at the top of the page, scroll down for older entries. You don’t have the same kind of navigability but the “Tag List” makes it easy enough to find what you’re looking for.

Originality: 9/10. This is a tough one to score for—it almost seems unfair to include. Since The New Old Age is one of the New York Times’ blogs, I would imagine the bloggers have many resources available to them through this relationship, not to mention previous journalism experience. That being said—the reporting is incredible.

Presentation: 9/10. Clean, easy to read, original images.

Look for: Jane Gross and Paula Span.

 What’s on your list? Tell us in the comments below!

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A New (Year’s) Perspective for Caregivers

Happy New Year caregivers!

Today everyone is declaring their resolutions for 2014. But we know that there is room only for small changes while caregiving. And one small change that makes a big difference? Your perspective. So this January we’re going to be posting CareCards that help you change the way you look at things so the things you look at change.

All you need to do is have the willingness to be open to new ways of seeing…

January’s CareCards in review

 

Our 15 Favorite Gifts for Caregivers

Our 15 Favorite Gifts for Caregivers

Give back to the caregiver in your life with a gift s/he can use and appreciate.

Love, time, help, and resources are all great gifts for caregivers, year-round. However, presents that bring a smile to your friend’s or family member’s face, are the perfect gifts for this holiday. These presents say “I’m thinking of you,”– encouragement that the caregiver in your life could really use.

Here are 15 of our favorites!

 A Year of Gratitude | Our 15 Favorite Gifts for Caregivers Brighten a caregiver’s week for a year with these 52 thank you cards. You can live a life of abundance, independent of any material things, if your heart is always filled with a spirit of gratitude. This elegant box set contains all you need for a head start on such a gracious way of living.
 Links of Love Necklace | Our 15 Favorite Gifts for Caregivers Celebrate and honor your relationship with the caregiver in your life with this beautiful necklace. The joined pieces are evocative of the infinite connection we possess with the special people in our lives and a reminder that they’re always there for us as we carry on through life’s struggles and successes.
 My Dad: His Story, His Words | Our 15 Favorite Gifts for Caregivers Give some attention to your dad. This textured hardcover interview journal is a gift for caregiver fathers that will be handed down to future generations. Inside are questions to spark the memories of his life. “Dad, kind of house did you grow up in? What was your old neighborhood like? What was the best lesson your Mom and Dad ever taught you?” Get to know Dad. Laugh with him, hear his stories and memories, and celebrate his life by writing them down in this wonderful little book.
 Treasured Passages: Mother and Daughter Letter Book | Our 15 Favorite Gifts for Caregivers It is easy to underestimate the importance of family artifacts, until your opportunity to create them is gone. So create a keepsake that will last forever. Exchange the cards that are included and once answered tuck them back into the little nooks and crannies of the book creating an heirloom for generations to come. It is the perfect way to enrich your relationship. Created by a caregiver, it’s the perfect gift for your caregiving friend or family member.
 Treasured Passages: Connecting Hearts & Histories. A Letter Book for Couples | Our 15 Favorite Gifts for Caregivers Genuine love is one of life’s greatest treasures. With the Couples Letter Book, you can record and reinforce the emotional connection you and your partner share for years to come and create meaningful, lasting memories for future generations. Tucked away in a pull out drawer are over 40 cards and envelopes with prompts for holidays and special occasions. With every new letter you write, your lives will unfold before you like the pages of this wonderful keepsake.
 Meditations to Change Your Brain | Our 15 Favorite Gifts for Caregivers The structure of your brain changes constantly, in a dynamic, unfolding process that you yourself can direct to create the life you want. Drawing on a vast body of research spanning more than 30 years, Meditations to Change Your Brain collects the best meditative and contemplative practices to help anyone increase their capacity for joy, love, and spiritual bliss. Listeners learn specific practices for making positive changes in their body and mind, plus four guided practices to strengthen their meditative abilities, and four guided meditations to heal and nourish their relationships.
 It's Gonna Be Okay Inner Truth Guided Journal | Our 15 Favorite Gifts for Caregivers Science has proven that optimism is actually good for your heart, and this amusing writer’s journal affirms the notion that it s also good for your brain. With playful prompts and witty quotations, It’s Gonna Be Okay is smart yet comforting like a pair of horn-rimmed rose-colored glasses.
Featuring over 70 quotes of hopeful wit, encourage the caregiver in your life with this “It’s Gonna Be Okay Inner Truth Guided Journal”
 DIY photo pillows | Our 15 Favorite Gifts for Caregivers A D.I.Y. project that’s both easy to do and priceless! Select some old family photos to create a lasting and decorative memory.
 Half-Full Optimist's Glass | Our 15 Favorite Gifts for Caregivers Is your glass half full or half empty? If you’re like most people, you’re never quite sure. But this clever 7-ounce glass reminds the caregiver in your life that Half-Full is where s/he’ll always find refreshment.
 "This light is me saying a prayer for you" tea light holder | Our 15 Favorite Gifts for Caregivers “This light is me saying a prayer for you.” A beautiful, sentimental gift to remind your caregiving loved one that s/he is in your thoughts and prayers.
Mark My Words caregiver mug | Our 15 Favorite Gifts for Caregivers Say thank you with this beautiful thought: “Caregivers are like angels without wings, helping us out with so many things.”
 Bag of Zen | Our 15 Favorite Gifts for Caregivers If the caregiver in your life is feeling less than centered or not so balanced let this little bag of zen get his/her mind and spirit back on the inner-peace track. This green nylon organza bags holds five gold-plated pewter tokens to help your loved one become more mindful. Personalize it by adding your own charms, like a piece of sea glass or a smooth pebble.

1,001 Ways to Relax | Our 15 Favorite Gifts for Caregivers

Best-selling author Mike George’s 1,001 Ways to Relax is a chunky, charmingly illustrated volume packed with quick fixes like visualization and aromatherapy, as well as big-picture solutions such as eliminating clutter, overcoming bad habits, and creating more harmonious relationships with family and friends. Circle a few ways to relax that you and your caregiving friend/family member could do together!
 Home plate doormat | Our 15 Favorite Gifts for Caregivers There’s no place like home is there?  This sweet and simple doormat brings home plate to you. Every guest and every return is a home run!
Quotable Magnet | Our 15 Favorite Gifts for Caregivers These words are crucial to remember for almost any caregiver. Give the gift of a peace-of-mind reminder– this quotable magnet will do the trick!

Have suggestions for other gifts? Let us know in the comments below!

Happy Holidays!

To caregivers, with love

It’s officially the giving season.

But caregivers have been giving for many seasons already, and possibly many more. We don’t have the ability to press pause on our caregiving responsibilities so we can enjoy the holidays. With our shopping done in our precious spare time, we will have even less time (and more stress!) than usual. It’s safe to say, we’re not even on our gift list.

This December, we’ll help you give little gifts to yourself.

These gifts will help you feel good without spending any money and less than five minutes of time. To you, from you. Thank yourself for coming this far!

The Gift of a Quote-spiration Spot

Pick out three of your favorite inspirational quotes or choose from our CareCards collection. Write or print them out. Tape one to the fridge, one to the bathroom mirror and one to a place of your choosing (suggestions:  journal, front door, night stand, remote control). Wherever you put it, make sure to take a picture and send it to us or tweet them to @theCGspace.

The most creative “quote-spiration spot” will be posted to our Facebook page, with over 26,000 fans!

MY generation on caregiving

MY generation on caregiving

Two nights ago, I sat around a table with eight others, all at least 25 years my senior, discussing caregiving.

Death, disease, aging, disability, caregiving—these had touched every single one of us. But I was slow to realize how caregiving has touched my present life (besides, obviously, the work I do here).

And then it hit me. Almost every one I know is a caregiver, or a caregiver-to-be.

The kind of care I see might be very different than the kind of care you associate with “caregiving.” After all, I’m talking about young caregivers who are 18 to 28 year olds and living in New York City. But if you heard a little about their lives and daily struggles, there is no doubt that they are caregivers in their own right.

A close friend of mine returned to New Jersey yesterday to care for both her parents—her dad is dealing with a heart condition and her mom is recovering from surgery for a broken ankle. My friend became a caregiver within a week. And somehow she has handled this rapid role change with tremendous grace.

Another friend found out her dad had a heart attack a week before she was scheduled for a visit home to California. He is, thankfully, recovering but is still facing difficulties. Meanwhile his daughter worries about him from across the country.

And yet another friend has grown up with a parent with Asperger’s, feeling like from a very young age that she had to take care of the dad who was supposed to be taking care of her.

Two friends are on the “frontlines” of caregiving, living with and caring for their grandparents.

One young woman is caring for her mother who has cancer, and several friends have recently lost, or are in the process of losing, their fathers to the same disease.

Another has a brother with a mental illness that drove him to suicide attempts.

And then, of course, there are the friends who are caring for each other, in little and enormous ways, through diabetes, depression, gender dysphoria, substance abuse, and eating disorders.

Not to mention that almost all of the friends mentioned above have grandparents, parents, or siblings with alcoholism and/or addiction. My friends themselves are in recovery but their relatives are often still in the throes of the disease. (If you have known anyone who has struggled with addiction, you know that it’s a whole different caregiving ballgame…)

So what’s different about my generation as caregivers?

Very little.

We are long distance caregivers. We are live-in caregivers. We are caring for loved ones (and not-so-loved-ones, as is the case for those of us with abusive parents, grandparents, siblings or partners). We have family and friends who die suddenly and those whose deaths are painful and prolonged. We stay up all night with worry and we go to work or school in the morning. We call, we text, we drive, we fly. We isolate. We sink into depression. We resent the ones we care for and still we feel they are leaving us too quickly. Frustrations and fears are taken out on us. The tablecloth is pulled out suddenly and the glasses shatter on the floor. And the whole time we are striving to figure out our direction in life, to do our best, to not engage in unhealthy behaviors.

We are young caregivers in our twenties.

I’m holding back tears as I write. Because for every friend I can identify as a caregiver, there are four more who suddenly come to mind.

And to think: we are the lucky ones.

We are lucky enough be in a community that values service and unity. We show up on each other’s doorsteps with movies and burritos. We call each other. We ask, “And how are you?”

We will not let you do this alone.

I can’t imagine that every twenty-something feels this rooted, especially in times of upheaval. But there is a special thing about my generation that makes us different from older ones — we have the knee-jerk “Google it” reaction.

So I ask you to pause before you judge our generation as a bunch of Internet-addicts. Consider that we too know the pain of caregiving. The utter devastation of loss. The trials of recovery. And we are rapidly developing the online communities we need to get us through this kind of pain. We might be young, but that doesn’t mean we aren’t caregivers. We’re just young caregivers.

Share your experience, please. We need it. We are caring for parents who only recently stopped caring for us. But don’t underestimate our process, even if it looks different from yours. Keep an open mind to what you might learn from my generation.

We may not be fifty years wise, but we are definitely growing up.


This post is dedicated to all of my friends,

my loves,

my dearests,

who might not see their own

courage and grace,

just for showing up,

for walking through today—

but I do.

Little Steps to Gratitude While Caregiving

Gratitude is the hardest to get when you most need it.

Take caregiving: pain, stress, and exhaustion rule your days. The only emotional relief is gathering a bit of gratitude yet it is so hard to do. Life changes in a big way when you become a caregiver. But it changes in little ways too. You have more emotionally intimate relationships. You appreciate life a little more. A kind smile is enough to brighten your day. You discover the joy of being outside of the house and the comfort of being within it.

Gratitude is the shortest distance to acceptance. And even the smallest step to gratitude is still a big relief.

For November’s CareCards, we’re going to share a little of what we’re grateful for. We encourage you to do the same in the comments below! We’d love to turn your gratitude into tomorrow’s CareCard.

6 reasons why caregivers don’t practice self-care (the way you’re telling us to)

6 reasons why caregivers don’t practice self-care (the way you’re telling us to)

sat in the waiting room for 3 hours only for the doctor to tell me to make time for myselfNo one likes to be told what to do, particularly when one has no time to do it.

Caregivers have full schedules with competing responsibilities and self-care is not often a priority. This is problem, absolutely, but it isn’t getting resolved with the hundreds of (unoriginal) blog posts that suggest unrealistic ways for the caregiver to take care of his or herself. It feels like these bloggers aren’t listening to the real needs of caregivers. And therefore, we’re not particularly inclined to listen to them.

Here are 6 reasons why we just can’t listen

1. Who has time to take bath anyway?

Why is this suggestion so common? Taking a bath while caregiving is almost a mythical scenario: it requires a chunk time; vents and running water make it difficult to hear anything outside of the bathroom; and you can’t quickly attend to your loved one or patient if necessary.

2. I don’t have the kind of money for a masseuse or day spa…

Massages are wonderful—or so we’ve heard. Going to the spa or getting a professional massage would be a great way to treat oneself but spending that kind money is hard to reason, since family caregivers don’t currently receive any compensation for their care and full-time caregivers are racking up thousands in lost wages every month.

3. … not to mention in-home help

If we’re taking a break, we’re going to need someone to step in for us. And in-home help isn’t covered by insurance in many cases. Many times, our loved ones and patients are not interested in having anyone else but us care for them.

4. There’s no telling when I’ll be interrupted

Any kind of self-care activity we engage in has to leave room for interruptions. If our care recipient calls, we answer. Thus, we’re usually running on a less-than-ideal amount of sleep.

5. My family is not interested in helping me (and I’m not interested in their help either)

It would be a huge help if every primary caregiver had a willing, easy-to-handle, loving family to step in and provide much needed respite care. Unfortunately, many of us have historically tense relationships with family members, or these relationships are strained by the stress of family caregiving (or both!). Our family might be unwilling to take responsibility or they cause more harm than good when they do help.

6. I don’t even feel like my needs are worth it

Sometimes it’s just really hard to see that our needs are worth prioritizing. When we do have time alone, catching up on our to-do list feels more valuable than doing something we truly enjoy, in the same way we might label the pursuit of a childhood dream as unrealistic. It’s hard for caregivers to ask for what they need since they are expected to have all of the answers.

It’s harder than you would think to self-care but it’s not impossible.

Get creative! Pay attention to what a caregiver really needs and work around the constraints of caregiving. Show us you understand what it takes to be a caregiver by creating thoughtful yet practical self-care practices. And we’ll show our appreciation by actually doing them!

What’s one creative way you take care of yourself? Tell us in the comments below!

Why is THIS the Picture of Caregiving?

Why is THIS the Picture of Caregiving?

 If you spend as much time as I do plugged into the Internet’s caregiving community, then you will have undoubtedly come across this infamous picture:

Why is THIS the Picture of Caregiving?

There are also several variations of this picture, all using the same models.

Every time a blogger writes about “caregiving” or “caregiver” this picture, or a variation of it, is thrown up on the screen.

WHY?

Chimamanda Adichie, a novelist, warns of the dangers of telling a single story: “Our lives, our cultures, are composed of many overlapping stories… If we hear only a single story about another person or country, we risk a critical misunderstanding.”

Considering the number of ways to illustrate the concept of caregiving, not to mention the enormous diversity of the caregiver population, the consistent use of this particular image will tell only one “caregiver story.” Elder care. Senior care. Aging parents. Alzheimer’s care. Dementia. However you slice it, this image focuses on the story of a daughter taking care of her elderly mother who is suffering from age-related conditions.

And, as it happens, that’s the story the public and media tell over and over.

News channels like NBC, CNN and FOX give exposure to women caring for parents regularly (even still, this caregiver story isn’t told nearly as often as it should be). Oprah (and even the AARP!) focus almost exclusively on caring for elders.

This is absolutely not meant undermine the tireless and courageous work of adult children caring for parents suffering from dementia or age-related conditions. People on the “front lines” of caregiving are often found in these circumstances. In 2012, 15.4 million caregivers cared for someone with Alzheimer’s and almost 70% of these those caregivers are were women.

Out of over 65 million caregivers, those 10.5 million women caring for loved ones with Alzheimer’s represent only one story. So let’s consider the stories that AREN’T heard: How about those caring not for someone with Alzheimer’s but another kind of dementia, like FTD or Lewy Body? How about the son caring for his parents? Or the husband caring for his wife? And the father caring for his child with special needs? What about the daughter caring for her mother with cancer? Or her father after a stroke? And her child with cerebral palsy? How about the caregivers who are feeling exhausted and overwhelmed?

The question I pose to the reader is this: How can we hear the breadth of caregiver “stories”?

We can start by listening to the fearless caregiver advocates who are sharing them: Donna Thomson of The Caregiver’s Living Room; Trish Hughes Kreis of Robert’s Sister; Michael Bloom of The Accidental Caregiver’s Survival Guide; Christy Shake of Calvin’s Story; Heather McHugh of CAREGIFTED; Jean Wolf Powers of Dialysis of Healing.

Why is THIS the picture of caregiving? 1

Another caregiver story. Joining Forces to Support Caregivers of Our Nations’ Wounded, Ill, and Injured event. Photo by US Department of Labor.

And these are only a handful of many people who get up every day to write, sing, play, speak, or shout their version of the “caregiver’s story.”

We avoid the critical misunderstanding of a single caregiving story by diversifying the images and words that tell them.

Help those who haven’t yet been touched by caregiving understand that we make up a third of the United States’ population. Not only does this help educate the general public, but representing caregiving as the all-encompassing experience that it is, will help others identify the assistance they provide as caregiving, enabling them to better take care of themselves. Over 90% of caregivers, after they self-identify, become more engaged in seeking out resources and information to support themselves and their patient.

The image of “caregivers” as two white women, one elderly and wheelchair bound while the selfless, happy daughter sticks by her side, is only one look at a highly diverse and complex population.

Help another caregiver by telling your caregiver story.

 

At The Caregiver Space, we’re not interested in one particular group of caregivers– we’re focused on them all. We recognize that you may be caring for loved ones with two or more conditions, or that you might not even be caring for “loved ones” at all.

Our non-profit organization’s online community is for all caregivers caring for any condition. It is a safe place to connect with other caregivers who understand the feelings that come with caregiving regardless of their circumstances. Start by telling your story on our forums.

 

Deb Katz on Sharing the “Unshareable” in Caregiving

Deb Katz on Sharing the “Unshareable” in Caregiving

Recently, we were recommended a book for its caregiver-relevant concept and content. What we found was a deeply personal and visceral look at the caregiving process for a spouse dying of cancer. Because of the author’s unflinching honesty, In the Valley of the Shadow: A Manual for the Left Behind,”voices all of the thoughts and feelings that arise as caregivers, ones that most of us are too ashamed or afraid to admit. Deb Katz, the author and illustrator is all normal and part of the process. We spoke with Deb Katz to find out a little more about the story behind the book.

In the Valley of the Shadow book cover

I understand that In the Valley of the Shadow began as a diary. When did you first consider turning it into something for others to read?

I really started it as a personal experience I was not thinking in any way of helping anyone else and I don’t even know if I was thinking about helping myself.  It just became a place where I could be me, where there weren’t people around who wanted me to be better or to confirm that I was going to be okay or that they were doing what they could for me. This was the only place of solace and peace where I could express whatever was going on. It became a confessional, a place to share “unacceptable feelings.”

You illustrate through drawing and writing the “unshareable and unacceptable” feelings of loss. Did you have “unshareable” feelings while caregiving as well?

Yes. I don’t know if I comprehended how much [caregiving] took out of me, let alone people who were helping me. In one sense, the most heartbreaking process for me was my husband turning into a patient. He was no longer himself—he had transformed into someone I had to take care of rather than share a life with. There were times that it got so frustrating that I talked about taking him to the hospital and letting him deal with it there, rather than me. In some way I think he knew I wasn’t going to do that but there were moments when I would wake up in the middle of the night terrified because I didn’t know if I was doing the right thing.

You lose your life and your identity in the process of being a patient and being a caregiver. You become part of this factory of sickness. You do the best you can and it’s never good enough. You’re always feeling half assed. There was rarely a day when you go “Okay we’ve beat this!” There were moments like that but much of the time it was slogging through.

[At one point] we felt my husband was getting better. He was on this alternative treatment and doing really well and the doctor was amazed at how well he was doing. And at the point he told me he really felt like himself again he stopped doing the treatment. He became incredibly angry. He became resistant. He took his medication and threw it out. It took six months for him to die after that. I don’t know if I’ve fully forgiven him for the choice he made.

Was this a choice he had communicated with you?

He wouldn’t talk about it. I think he felt so helpless and dependent. That was something he could never tolerate. He had a lot of guilt for bad things he experienced himself as doing. He was not a saint. I remember one day—and this is in the book—he turned to me and asked “Can you ever forgive me?” And I said, “Of course I can forgive you. Can you forgive yourself?”

It made it more excruciating because I wasn’t just fighting the [cancer] but I was fighting him in a way. Because I wasn’t ready to just let him throw in the towel. And whether I should have done that or not—I don’t know. But I couldn’t, for my sake, for the kids’ sake for our friends’ sake. I couldn’t just surrender like that.

How did you maintain some semblance of self?

Drawing from In the Valley of the Shadow

An example of Deb Katz’s illustrations in the book In the Valley of the Shadow

Well I was working throughout caring for him so I never gave up [that]. I also had people who were incredibly generous who wound up sending us money so I could continue [working] because it was really hard—I do a lot of traveling and the one thing I couldn’t do in terms of work was traveling. [Caregiving] was like juggling all of these different arenas and, in some ways, feeling incompetent in all of them.

Past a certain point, if I got through the day, if I was able to get through what had to happen, then that was a major victory. And as Fred got sicker, he just pushed us all away. I hated him for that. Of course I felt terrible for hating him, this guy with cancer, how can I hate him? And yet I did.

One of the things that I think is hardest for caregivers is how alone you feel in the process of taking care of someone even though it seems like you would have a lot of contact and you’re so connected. In fact it’s the opposite—you’re completely isolated and alone. That’s excruciating.

We just posted an article on that very subject—compassion fatigue. Many caregivers grow to resent the people they care for but because those people are the “sick ones” there’s a lot of shame—“I shouldn’t feel this way.” But it’s so natural when you’re in a stressful and demanding role.

Well I’ve always seen myself as having a bad character! [laughs] So it’s less hard for me I have low standards—I had a bad temper and a big mouth so I spent a lot of time trying to not let it out on everyone. So with all of these feelings I had with him in one sense, it was in part okay because it didn’t make me feel guilty. What I think made me feel most guilty or most helpless which was tied together was were we doing the right thing. And how helpless I felt in helping him through it. I just felt over my head most of the time. And it wasn’t in terms of getting him to the bathroom—in one sense those mundane activities, the setting up of the hospital-patient existence, it just took the place of everything. It was one of the worst aspects of caregiving.

People who are sick are not angels. They have good days and they have a lot of bad days. It’s difficult—they’re in pain and it’s not easy for them. And the caregiver gets all of that—they get the good and a lot of those bad days. I found that a lot with cancer patients, people change and it doesn’t bring out the best in them. The treatments hurt, they feel terrible and they’re frequently scared. The caregiver is the one who winds up assimilating all of that.

What did you do for yourself during this time?

You’ve asked a very important question. What did I do for myself during this time? You know besides watching CSI as a way to cope? [laughs] I wouldn’t necessarily recommend that. It was the book [In the Valley of the Shadow: A Manual for the Left Behind]—the book was what was mine. But, you know what—I didn’t have the book then. It’s so interesting, that came after [his death]. I don’t think I could have figured it out, I didn’t have the space and this is a real problem for caregivers or at  least it was for me– I could not create any sanctuary for myself, where I could just have space for me. I went to New York or I was on the road at times and that may have been the only thing I had. I had someone take care of [Fred] and I could get out. And I’ve always loved being on the road, on tour, doing things… It’s always been a space to walk out the door and be in a very different position. That may have been the only thing I could give myself.

Fred, Katz's husband, in a hospital bed at home, watching CNN

Illustration of Fred, Deb’s husband, in a hospital bed at home, watching T.V.

What does it feel like to have such an honest and raw look at your life seven years ago out in the world?

At this point I feel really good about it. It’s been an interesting transformation, having gone through all of this resistance and struggle to let it go in the world. I think at this point it offers people, especially those who are suffering, something that they can potentially identify with, and know that what they’re feeling isn’t so reprehensible, it’s not so terrible, it’s okay to have these feelings, it’s okay to struggle with this. There’s no easy way through it. Everyone wants you to get better and people don’t get better, they go through [grief] for a long time. I feel it offers people a kind of anchor in the world of feeling ineffective, being unable to balance a checkbook, unable to remember things—that’s all normal. It’s part of the process. We have so few rituals to offer and allow people to actually grieve so at this point it actually feels good. A number of people who have lost [loved ones] have looked at the [book] in different stages and thanked me for it. I had a sense from them that it helped [the grief process].

Thank you so much for your honesty and talking with us. It’s so important to have these conversations and speak with someone who understands.

Yes that would have been a huge help. [Talking about the unsharable stuff] might have made a difference for me, if I knew there was a community to talk to about it all. The community around me was not ready in any way to hear such a savage sense of struggle. There’s a wall that you hit with a broader community, an inability to understand how wretched an alone you can feel [as a caregiver and a bereaved spouse].

The Caregiver Space would like to extend a special thank you to Deb Katz for her time and honesty. Thanks to Marcia Gagliardi for facilitating this interview. If you’d like to get your own copy, you can purchase it here.

You’re “Should-ing” Yourself Again! Caregiving and Compassion Fatigue

You’re “Should-ing” Yourself Again! Caregiving and Compassion Fatigue

Compassion fatigue.

Is this what it sounds like?

Almost. Compassion fatigue is a physical, emotional and spiritual exhaustion that leaves the caregiver depressed, apathetic, and resentful of his/her care patient.

But you’re not just tired. You are running on empty.

At its core, compassion fatigue makes you feel like giving up.

You might be experiencing compassion fatigue if:

  • You no longer feel the same tolerance you once did
  • You are irritable, short tempered, pessimistic and impatient
  • It becomes increasingly difficult to sympathize with your loved one
  • You’re feeling insecure and/or questioning your competence, effectiveness and productivity
  • You are socially withdrawn from others
  • Disturbing images are invading your thoughts and dreams

Isn’t that just how caregiving feels?

Caregiving is draining, time consuming, difficult and emotional. But it isn’t normal to feel like the support available is significantly outweighed by the demands of your role. And you can’t go on another day.

Why does it happen? (Really though, why does it matter?)

“Compassion fatigue […] happens when you’re trying to be everything to everyone.” – Alexandra Fortier

As caregivers, we deal with notoriously difficult people. Even if the person we’re caring for is an angel, their behavior can still get on our nerves when we share such an intimate relationship.

Many of us have had loved ones who complain about the same thing over and over again. Their attitudes are infuriatingly negative—and we’re working so hard to stay positive! We begin to get short with them because we can’t seem to find the magical, bottomless source of compassion we feel we’re supposed to have.

It’s frustrating that no one is asking you how YOU’RE doing. And worse yet—even if they did, how could you tell them what you’re really feeling? How would they understand the contradictory, complex, and confusing emotions of caregiving?

The thing is—we’re human. We get angry. Sometimes, we resent our sick and suffering loved ones. So it goes.

But the trouble starts when we feel ashamed of these feelings. When we tell ourselves we “shouldn’t” feel that way. So we grin and bear it, pushing down our feelings, until we’ve run ourselves into the ground. Until it all feels hopeless.

How am I supposed to avoid it?

Caregiving is complicated. It kicks up a lot of messy emotions. Know that you are not alone. Talk to others who understand— what you’re feeling won’t come as a shock to most caregivers.

Stay aware of your feelings. Every time you hear yourself saying “I should” or “I shouldn’t,” let it be a red alert. When we say “should” or “shouldn’t” we’re setting up an expectation for ourselves. We’re bringing right and wrong into the picture and, naturally, feelings of shame follow close behind. So to avoid compassion fatigue and caregiver burnout,  take all of the complicated, messy emotions and share them. Journal them. Draw them. Care for them.

Just don’t “should” them away.

Featured image credit: 416style

The Accidental Caregiver’s Survival Guide Lifts the Heavy Weight of Caregiving

The Accidental Caregiver's Survival Guide front cover“If you’re feeling stifled—like you can’t breathe under the heavy weight of medical crises, family conflict, or fear, you have made a wise choice to read this book.”

Speaking with Michael Bloom is like taking a big gulp of fresh air.

And fortunately, his written words have the same effect. So to read The Accidental Caregiver’s Survival Guide: Your Roadmap to Caregiving Without Regret is to have your hand held while you are gently guided through the mire of stress, fear, and loss.

Actually, scratch that.

You’re not being led by Michael Bloom’s words– you’re being empowered to lead yourself. That’s the reality of caregiving. We aren’t alone but we are mostly doing this by ourselves. We might be 65 million strong but we’re still in crucial need of visibility and a voice. Hand-holding is sweet, but Bloom gives us legs to stand on.

If caregiving came about unexpectedly for you– or you feel like you’re going in circles after years of caregiving– the message you’ll find in The Accidental Caregiver’s Survival Guide is clear, concise, and powerful.

We suggest you read one chapter a day– let go of that heavy weight, one step at a time.

 

Give A Cup to Caregivers

Give a cup of coffee to caregivers

Figure this:

We have a community of over 23,000.

A cup of coffee averages only $2.

If each person who has liked our page donated JUST ONE CUP to our campaign to support caregivers, we would surely reach our goal.

Give $2 and comment below: “I just gave a cup.”

Today, just be…

Today, just be…

Consider this to be your daily mantra.

With so many things to do in the day and so many people to be (nurse, driver, chef, accountant), it’s such a relief to focus on just being in one mental state. While we can’t (yet!) help you unload the groceries or manage medications, we can inspire you to stay present and motivated. Our CareCard campaign for July is centered on getting centered: Today, just be… We’ll help you set your emotional goal, just for today.

Your daily mantra: just be free

Just be there for yourself and your loved oneGratitude changes attitudesHonest Kind to yourselfCaregivers have such incredible strengthPositivePlayfulBe gentle with yourself todayUnderstandingRealPeaceful Whole-Self MindfulPresent with the gifts you haveWillingnessCalmUnconditionalHopefulTruthfulStillAliveUnknownAware of your breathReflectiveCompassionate Loud Connected