A Stranger Asks, "So, Do You Work?"

A stranger asks, "What do you do?".  They really mean, 'do you WORK?'.  When you reply that you care for a loved one, they look past your shoulder, scanning the room for an escape route. At the grocery store, someone you used to know walks by, averting their eyes.  Conversations with people apart from other caregivers can be difficult and sometimes hurtful.


I am a caregiver who has never had a 'proper' job since Nicholas was born twenty-five years ago. I have certain sensitivities and sometimes, I take a chilly greeting personally. During the years when Nicholas was constantly in hospital and often in crisis, I would say this to the doctors: "I really need you to be nice to me. I mean it." I did not know any other way to express the fact that a small slight, a critical gaze, or an unkind word could shatter what bit of resilience I had left to get through the day. 

 


Eva Kittay recognises this chink in the armor of caregivers because she is one herself (when she is not teaching moral philosophy at SUNY Stony Brook). Eva describes the phenomenon of the 'transparent self' of the caregiver - “a self through whom the needs of another are discerned, a self that, when it looks to gauge its own needs, sees first the needs of another”. Kittay argues that the moral requirements of a dependency relationship make the transparent self indispensable. This labor of love is simultaneously responsive to the needs of others, exhibiting care - it cultivates intimacies and trust between humans. Both care and concern contribute to the sustainability and connectedness fundamental in dependency relationships, but it leaves the caregiver vulnerable. Prolonged transparency of the self can lead to clinical depression at the worst and the absence of empowerment to act on one's own behalf at the least.

My clumsy response to being too transparent for too long was to beg those around to 'be nice to me'.

Looking a caregiver straight in the eye with real interest (not sympathy) is tonic to the caregiver soul. Asking her (or his) opinion about a shared experience, even if it's what she thinks about the color of the sky -  demonstrates a respect for that part of the person which is not a caregiver. 

  

"What do you do?" is a question that most caregivers despise.  Somehow caring for a person you love doesn't stack up alongside occupations like doctor, lawyer or even office manager. New mothers on maternity leave from high powered jobs very often complain that work comrades avoid them or don't include them in professional banter. For long-term caregivers, respectful, authentic and engaging conversation is hard to come by. So, if you happen to overhear someone say "I just need you to be nice to me", make eye contact, elicit a few opinions and share a personal reflection. And by all means, don't ask "What do you do?  Do you work?"

NATURAL CARE IN FAMILIES IS THE KEY TO OUR SURVIVAL

This is a sponsored post written by me on behalf of Elizz. All opinions are 100% mine.

The natural, loving care that family members provide to one another is the engine of society.  The care we give to those we love makes all other work possible and is the key to our very survival individually and collectively.  

What exactly IS this care and how does it play out in families?

A mother arrives home from the hospital, newborn baby boy in her arms.  Family and friends arrive with casseroles and plates of sandwiches.  In a while, a friend invites the older children outside for a ball game.  The new father smiles and whispers to his wife, “I will look after everything… you go and lie down with the baby.  I’ll bring you some tea.”

Everyone understands that building the bond between mother and baby is sacred, especially in the first days and weeks of a new life.  Everyone understands that the mother’s most urgent task is to bond with and care for her baby without distraction.

Years later, the same mother stumbles and falls.  She has broken her hip.  Her husband has passed away and all the children, except one, have moved to find work in cities far away.  Her youngest son, the baby she nursed so long ago, lives nearby.  He is his mother’s caregiver.

Older brothers and sisters telephone and write, asking for daily updates. They use technology and time saving apps to plan a schedule of rotating visits in order to support their mother and their brother in his caring role. They arrange for food to be delivered, the house to be cleaned and for neighbours to drop in for the sake of helpful friendship.  They do this so their brother can give care to their mother without distraction.

‘I care for you because you cared for me’ represents the ethic of reciprocity that children of the frail elderly cite as an important motivation for caregiving and how Elizz changes lives every day.  When caregivers decide to devote time, energy and kindness to an elderly parent, they have made a moral decision about what is right under the circumstances.  And that moral decision is one that is rooted in love.  Parents of children with disabilities or spouses of people with chronic illness make this decision, too. 

There is a saying “You can’t pour from an empty cup.  Fill yourself up first so you can then overflow.”   When we see someone giving care, we pour in her cup.  And the pouring and overflowing repeats itself in every family, in every culture. 

A good place to start is the 5 Stages of Caregiving Quiz found from Elizz. Which Elizz caregiver services are right for you?

Celebrating the Holidays at Home with Seniors

Guest post by Maria Ramos

While generally a time of cheer and celebration, the holidays pose their own set of challenges for seniors and those living with disabilities. The holidays are a time for family and friends, and generally everybody wants to get together for meals and holiday festivities. As a person ages, though, they may lose the ability to participate in beloved traditions like decorating a Christmas tree. Just because things are changing, doesn’t mean new traditions and memories can’t be made! Celebrating the holidays can be difficult when you have a loved one with a disability but there are some creative solutions to celebrating with your elders safely.

A playlist of holiday music

Everybody has favorite Christmas tunes, and elders are no exception. They are sure to enjoy a CD compilation of their favorite carols or songs. While tracking down the desired music may take some time, nothing will beat the smile on your loved ones face when the music makes their day. Tracking down and compiling videos of beloved performances from family members can also please an aging music lover.

Decorations from the kids in your family

Unfortunately, a full-blown Christmas tree may no longer be a realistic option, especially if they’re in an assisted living community, they may simply not have room for a tree. On the other hand, they will have room for handmade crafts from the kids in the family. These can range from garlands made out of green or red construction paper or pictures made with macaroni to figurines made out of pinecones. Some of the most cherished “masterpieces” are simply those made with love, some might even consider making it a group activity when all gathered together.

Festive items around the house

There are many alternatives to a Christmas tree that can brighten a small place and make it feel festive for the holidays. Poinsettias and amaryllis are brightly-colored plants that can be placed on any table, and a wreath or jingle bells can be hung on a door. Nutcrackers and other figurines can also make a senior’s home look more holiday-ready. Better yet, if your loved one has always loved having a tree of their own, they might be happy with a table-top version. Table-top trees are usually about two feet tall and are small enough to be handled and packed away easily.

Make a family recipe

Many seniors have their own ideas on how to contribute to holiday celebrations, but a senior who still loves to cook or bake can probably be coaxed into making their favorite holiday dish or treat. It can be anything from frosting a cake to mince pie to sweet potato mousse. Of course, this is also a great way to get seniors involved even if they are the gourmet chef they once were - sharing simple tasks like decorating cookies, mixing, or taste testing are always good starting points.

Look through family albums

One entertainment many seniors can provide themselves is stories about the "good old days." Bringing a photo album full of pictures may jog their memory and inspire them to tell some new stories. The family can even play a game in which they try to guess what is happening in a given photo, and the senior can then tell them the real story behind the picture. Similarly, family members can finally hear the real story behind a given family heirloom.

There are many ways to include a senior, even one with disabilities in the holiday festivities. Families need to consider the senior's needs, situation and desires when planning a celebration, but most importantly keep their health and safety in mind. Medical monitoring systems for the home  can help with an accidental fall and monitor an older person’s whereabouts, and home automation setups can ensure lights and appliances are turned off from afar. With your peace of mind in tact, nothing is better than being and celebrating together, and by keeping these activities in mind you’re sure to brighten the holidays for the entire family.

Maria is a freelance writer currently living in Chicago. She has a Bachelor of Arts degree in English from the University of Illinois at Chicago with a minor in Communication. She blogs about environmentally friendly tips, technological advancements, and healthy active lifestyles.

Sick of Caregiving?

I was surprised to see this question as the title of an email I received this morning. "Sick of Caregiving?" isn't the sort of thing I usually receive.  My inbox is normally filled with things like "Latest stats on why caregivers live longer" or "How I learned to balance my job with caring for my Mom."  Was this a challenge, I wondered?  Or an advertisement?   I was intrigued, so I clicked on it.

It turns out that "Sick of Caregiving?  It's Our Place to Care" is the motto of a homecare service provider in New Zealand.  They were advertising for a personal support worker, starting immediately.  I don't know what kind of branding company they hired to create that slogan, but it's sure not working for them.  Am I alone in thinking it's outrageous to advertise that way to family caregivers?

In addition my shock that they might believe there are loads of people who are just plain sick of caregiving, the implication that their staff are the right or proper ones to care just irks even more.  (All you poor family caregivers have been doing it wrong all along!)  Very strange.

Not only does this slogan play into the false idea that family caregiving is all burden and no joy, it also presents the other false notion that paid care is the correct alternative.  Of course like all complicated and important things in life, neither is true.  The fact is that families work in partnership with paid caregivers.  If we are lucky enough to afford the help of paid caregivers for our loved ones, we work with them as a team.  If anyone on that team is 'sick of caregiving', everyone has a problem.

Imagine if this company was a nanny agency.  "Sick of parenting?  Give your child to us - it's our place to care." Caregiving is the same - of course it's not always easy.  Caring for someone you love whether it's your baby or your Mom can be frustrating or boring sometimes.  But for almost everyone I know, love wins out at the end of day and keeps us going day after day.  Love.

REMOTE CARE VS CARE AT A NURSING HOME: Which Option is Better For Your Parents?

This is a really informative and helpful guest post by the writers at TopTenReviews that I'm more than happy to share.

Choosing how to support your parents in their golden years doesn't have to be a burden. Depending on what you and your parents are looking for in care, you have a choice between nursing homes and care given at home. Here are some benefits and disadvantages of each method that should point you toward the best solution for everyone.

What Conditions Are Better Managed at a Nursing Home?

If your parent has an advanced condition that requires constant or very technical care, their care is probably better left to a professional at a nursing home or hospital. Parents with degenerative disorders like Alzheimer's or Parkinson's that become worse over time are also suited to nursing home care. In many cases, these patients will be in-home care at first, then progress to the point where they need to transition to a full-time care facility.

What Conditions Are Better Managed With Remote Care?

If your parent has a high risk of infection because of a weakened immune system caused by AIDS or an auto-immune disorder, definitely consider keeping them at home as long as possible. The spread of germs inside a nursing home is faster than in the home because of the number of people who could be potentially carry an infection.

Do not underestimate a simple flu or urinary tract infection, even at home. According to the American Academy of Family Physicians, about one-third of all deaths of people over 65 are the result of infection.

Is In-Home Care a Safe Option?

You are in control of who you hire to take care of your aging parent. Always perform thorough background checks on someone before hiring them to be a remote caregiver. The best way to confirm that their experience listed on their résumé is real is by calling references and checking up yourself.
Instead of hiring an independent home caregiver, consider hiring through a home care agency. Many of these agencies do the background checks for you. Some of them even require their caregivers to become certified by passing a series of tests.

There is one more option. If you and/or your parent don't feel comfortable with a stranger providing your parent's care, a family member can give the care, instead.

Is Remote Care Something You Can Do Yourself?

Anyone can become a caregiver if they are willing to learn how. It's not a task for the squeamish, since caregivers deal with bodily fluids and sickness every day, but if you're up to the challenge, your parent may appreciate the one-of-a-kind attention only their child can give. Plus, your parent will get to stay at home instead of moving to an unfamiliar nursing home.

It will be impossible for you to offer care 24/7. For those times that you have to leave a parent unattended, have a network of other family members who can help, or use a trustworthy medical alert system.

Keep in mind that a large investment goes into becoming a caregiver. If you have other responsibilities like a job or kids that take up most of your time, it may be too stressful for you to take on your parent's care yourself. In that case, if you've also ruled out a home caregiver, a nursing home is probably your next best alternative.

What Are the Advantages of Nursing Home Care?

As opposed to a single caregiver at home, a nursing home has an entire team dedicated to providing care to your parent. Nursing homes foster a community environment between staff and those requiring care. There might even be recreation opportunities available to residents of a nursing home that would otherwise be unavailable at home.

What Are the Advantages of Remote Care Giving?

One surprising advantage of home care is long-term cost. Many home care givers charge very reasonable hourly rates, allowing you to save some money, especially compared to a private nursing home. However, there will probably be a bigger initial investment for home care, especially if you need expensive medical equipment or renovations to the home for accessibility.


Now that you've weighed these factors, the decision between home care and a nursing home should be more clear. Remember that these decisions are never final and you can always switch between remote care and nursing home care if one doesn't work out.

On Birthdays and Christmases Past

This December 23rd, I am wistful about time passing.  Tomorrow is my Mom's 93rd birthday.  It seems like yesterday we celebrated her 90th - time is passing so quickly now that I am older.  We met our daughter at the airport last evening and when she walked out of the international arrivals gate, I was struck by how mature, poised and TALL she is!  (I may be shrinking!)

Tomorrow Natalie and I will drive to Montreal where we'll celebrate Mom's birthday together with my sister and her family.  I hope Mom feels well, but if not, we're ready for 'any exigency' - as Mom would say herself. 

Here's Mom on her 90th three years ago, celebrating with me and my sister Karen.

And Christmas memories came flooding back when I began to look at old photos for this blog post today.  Here I am pregnant with Natalie in 1991.  Nicholas was three then and I was in full throttle 'extreme caregiver' mode.  I'm so happy that Jim and I took the leap of faith to have our Natalie!

And busy Christmases past with our young children came and went in a blur of shouts of glee, medications given and upset tummies from too much shortbread.

Now, we are older and I want to hang on these moments of joy with our most treasured loved ones.  Tomorrow and on Christmas, when I take photos, I'll will time to slow down just a little to savour Mom's 93rd Birthday and Christmas, 2014.  

Thank you all for keeping me company in the Caregivers' Living Room.  Happy Holidays and May Good Health and Love at Home Bless You Throughout 2015!

The Psyche of the Caregiver: A Story of Eldercare Devotion

This is the second in our National Caregiving Month series of blog posts from YOU, our readers and fellow caregivers!  Judy Fox and Andrea Hurley are the co-authors of one of my favourite eldercare blogs, "When The Table Turns".  Thank you for telling your story here at the Caregivers' Living Room, Judy! 

It happened suddenly…from one moment to the next, my then 93 year old mother went from living independently – driving, cooking, shopping and playing bridge – to being hospitalized with a restricted aortic valve. She came out of the hospital forever changed. From that time onward, my mother began to live with a professional Aide, Pat.  Mom stopped all the activities she was doing before and just let go. Surprisingly she didn’t seem to miss her previous life. It was as though she was waiting to be able to just stop. When that happened 5 ½ years ago, I began to live with her for longer and longer stints of time until about two years ago, after she had a massive stroke and could no longer walk.  I moved down to Florida permanently. She is now 98 years old.

It’s been quite a journey. There are many details which I have left out, but I am sure there is much that overlaps to some degree with all caregivers – the times when there are many medical decisions to make, so much uncertainty;  the times of intense anxiety and worry and the times when the clouds part and light streams through, and everything in-between.  I am also aware that everyone’s situation is unique but it seems that for many of us caregivers, we are unprepared for what initially unfolds. How could we prepare for so many possible scenarios?  My experience is, and I’m sure that I am not alone, that I had to plunge in and learn fast.  It was not easy.  Luckily, I had friends and relatives to support me.

In many ways, being in a caregiving position, as I live with my mom 24 hours a day, has forced me to slow down- literally and metaphorically. I have had to slow down to tune into my mother’s needs, moods and on-going changes. From being in this position I appreciate so much more the role that a mother plays. I realize that caring for another human being does something to our psyche. It really does change one and hopefully for the better. Over this time, I have developed patience, a quality that never was so strong in me, and an ability to step back, observe and reflect. There are always subtle and then not so subtle changes happening all the time that need to be responded to when you hold another being’s life in your “hands.”  My mother is so fragile now in a way that “forces” me to be more sensitive.

A story to tell you about that just happened today. My mother has been eating less and less as so often occurs with the very aged. She doesn’t see, taste, or smell very well and basically lying in bed all day, she has very little appetite. This is a radical change from the Jewish mom who loved to feed her children and loved to eat as well. The challenge, as you can imagine, is to find food she will eat and at the same time not force her in any way. It’s a balancing act. So today I was thinking about what to give her for dinner – something she hasn’t eaten for a long time which might entice her. I offered to make blueberry pancakes and she said “Yes,” to my surprise.

Now, I am a bad pancake-maker – always have been – never learned the trick to making them and hardly ever eat them myself, but I found a recipe and we had frozen blueberries so I proceeded to make them. The first one was a total disaster, but the next few came out reasonably okay if you didn’t mind how they looked. The good news of this story is that my mother ate the whole pancake and liked it.  Given that at this point she hardly ever likes anything, I was SO happy. The happiness of a nourishing “mom,” whose child has not been eating and finally does. That is how it felt. And that is when I thought about how the psyche really does change when one cares for another.

This has been so much the journey that I am on. As my mother has changed, softened and in many ways sweetened, so have I and so has our relationship.  It’s of course challenging, intense and difficult at times but the rewards far outweigh the difficulties. A love has blossomed between us that I would never have thought possible and I live in gratitude for my life that has been forever changed and enriched.

Judy Fox is an artist. She was born in 1947 in New York City. For twenty-five years she worked for a nonprofit educational organization helping with graphic design and overseeing the print production of books and magazines. Previous to that, she taught English as a second language and got seriously involved with Buddhist meditation practice. For many years she worked at retreat centers in the US and UK. This spiritual interest, sparked initially by Buddhist practice, has continued throughout her life manifesting in many different forms.

Over twenty five years ago, she became the primary caregiver for her older brother who was dying of Aids and spent literally eight months by his side. From that experience, she understood the choiceless nature of caring for someone who you love deeply and because of her spiritual background she was able to gain a priceless perspective that helped so much during this very challenging time.

For the past five years, Judy has been helping to care for her 98 year old mom. Two years ago, she started a blog site with her good friend Andrea Hurley called” When the Table Turns” (www.whenthetableturns.com) where they write heartfelt philosophical essays on the care and love for their elderly moms. Recently they have expanded their contact with other caregivers and started a virtual caregiver’s circle (www.whenthetableturns.com/caregivers-circle-virtual). They are very excited about this as a way to share and learn with others. They are also honored to be featured in a chapter of Nina Lesowitz and  Mary Beth Sammon’s deeply spiritual book about the power of gratitude called, “The Grateful Life: The Secret to Happiness and the Science of Contentment.” 

He Said, She Said: Is Caregiving Hell Where We're At?

Today, a Forbes blog post caught my eye.  Maybe it was the title: "Informal Caregiving?  Free Caregiving? Seriously?" ... or maybe it was because I always enjoy reading what Howard Gleckman writes.  He's the author of a wonderful book called "Caring For Our Parents" and he's a fellow at the Urban Institute.  Here's what he said followed by what I said.

In a nice blog post the other day, AARP’s Lynn Friss Feinberg reminded me of one of my great pet peeves: The way some so-called experts describe the help family and friends provide loved ones with care needs. Lynn called them out for using the phrase “informal caregiving,” as if this were merely some sort of casual relationship. You know, something like old pals getting together every couple of weeks for tennis.

The phrase itself acknowledges how people misunderstand what family caregivers do, or their connection to those they are helping. Can you imagine describing a parent’s care of a child as informal? It would be beyond bizarre. Yet somehow, it is a widely accepted way to label an adult child helping a parent, or a wife assisting her husband. As Lynn asks, “Is there anything casual about an adult daughter helping her father use the toilet?”

In part, the phrase is a clumsy attempt to distinguish between family support and paid aides. But it is also reflection of how little some value the role family members play in supporting relatives with chronic conditions or disabilities. But language that dismisses family caregiving also helps frame in unhelpful ways the policy debate over how we deliver and pay for long-term supports and services.

“Informal caregiving” isn’t even the worst of these descriptions. That award goes to “free caregiving.” The implication: There is no cost to the support that child gives to her parent, or a wife provides for her frail husband.

The cost, in fact, is enormous. Anybody who has done it (and both Lynn and I have) knows about the price they pay—physically, emotionally, and financially.

Take just the financial cost. One survey reports typical caregivers spend $5,500-a-year out of pocket to assist a family member.

And that is just the tip of the iceberg. A 50-something woman who quits her job to care for a parent will forego more than $300,000 in lifetime income. Not only will she reduce her current wages, but she’ll also give up retirement income by contributing less to her 401(k), losing her employer match, and diminishing her future Social Security benefits.

People who talk about “free” or “informal” care really mean is that no money changes hands for family care. Nobody is paying for home health aides, assisted living, or a nursing home. Specifically, neither government nor private insurance is paying. Families just do it and somehow absorb the cost. Lynn and her colleagues at AARP estimate that economic value of family caregiving topped $450 bill in 2009.

And that’s why this language really matters.

If family caregiving becomes widely described for what it really is–rewarding for sure, but also very hard–people might demand help. That’s what happened in Japan.

Working women who were also caring for their mothers and mothers-in-law gave their own label to what they were doing: Caregiver hell. That’s a long way from “informal caregiving.” And it had a powerful effect, driving the government to create a national social insurance program for long-term care.

Here, policymakers live in mortal fear that family caregivers will similarly demand help. If, for instance, everyone eligible for Medicaid benefits took them, the cost of the program would explode. But people don’t, since it often means moving to a nursing home.

Make the program too good and people will use it. They even have a name for the phenomenon: The woodwork effect. Like cockroaches, people will come out of the woodwork to apply for benefits. Offended yet?

Similarly, private insurers understand that many families will continue to care for their aging parents without paid help, even if they have long-term care insurance. This phenomenon is so widespread, it is built into rates. Without it, already-high premiums would increase even more.

So, we blithely talk about informal care and free care. Makes it sound so easy. As if the issue will just float away.

From Donna Thomson: 

With respect, there’s a tone to your remarks that I find… sad. I am a lifelong caregiver – our son is 25 and has multiple, severe disabilities. I also help to care for my mother who is 92. I am an author, consultant and speaker on caregiving issues. As in the disability community, we in the caregiving community are struggling to identify a vocabulary that accurately reflects both the struggles and the joys of caring for our vulnerable loved ones. I have used the terms unpaid care, family care, informal care, natural care and loving care at various points in my writing and speaking. I don’t think any of these captures the myriad of caregiving experiences that individuals face on a daily basis. But ‘caregiver hell’ is one term that excludes the powerful reality of the love we feel for our family members who need help getting through the day. This is one descriptor for my job that I will not be using. That is not to say that I am not a strong political activist for due attention to be paid to the needs of those giving care – I am. But I will always lobby (no matter how I refer to family caregivers) for a broad societal support that includes the help of extended family, friends, neighbors, employers, the medical community and all levels of government. I don’t mean to imply that I have never experienced ‘caregiving hell’ – I most certainly have and it was always when I was unsupported by others. But even in the darkest moments, my love for my son never wavered. I talk about the ethics and economics of caregiving on my website www.donnathomson.com and I strongly support secure personal support networks for caregivers (www.tyze.com). You will see throughout my work a strong determination to tell the true stories of the caregiving experience, a call for broad support and a narrative of the love that drives us.