Thursday, 18 May 2017

Tongue-Tied in Caregiving: Why is Asking and Offering So Hard?

Most days I drive across a bridge linking my neighborhood with our son Nick's suburb. Homeless folks hang out at the stop lights either side of the bridge. They bob between the cars, hat in hand, trying to make eye contact. They smile, with or without teeth. Depending on my mood, I smile and shrug, or I hurry to find some coins. Some days I stare straight ahead. Yesterday I found myself wondering what would happen if I began a conversation with one of these panhandlers. Would I be tempted to offer a place at my table or a room in my home if I knew their sad story?

"What stops me from making eye contact or from speaking to a homeless person?" I wondered as the light turned and I drove away. I thought, "If I did stop and say hello, what exactly would I say?  Excuse me, Sir... or.... May I help you? (do they look as if they need 'help'?) or.... Would you like something to eat?  (I don't want to accompany this person to a restaurant, I'm on my way to an appointment!) Oh, forget it.  I don't know what to say."  So, in my mind, I keep walking.

It's so difficult, negotiating the giving and receiving of care. Have we forgotten how to do it?  Did we ever know how? Or, do we need to invent a new language of expressing need and gratitude?


I've begun to think about the purpose of our language in caregiving.  So much talk is given to helping our loved ones be more 'independent'.  But is that what they (or we) really want?  One thing I know is that independence is not what it's cracked up to be.  Independence is a cruel fiction for many of our loved ones and even for those who are more able, it's just an idea that equates to loneliness.  'Interdependence' is a much better guide post for our actions and policies to support both caregivers and their charges, but that word hasn't caught on as many of us had hoped.

I think it's dignity that must drive our search for the language of care and most often, dignity can be equated to contribution.  Everyone wants to feel useful and to have the opportunity for being empowered to act, even if their physical or mental capacities are very diminished.  So perhaps, it's 'enabled autonomy' that we strive for in our caring relationships.  Let it be so for the purpose of this line of thinking.

If we want to help someone be autonomous (even if they need assistance to get through much of the day), what are some ways of offering help?  Perhaps the first way is to be silent and observe closely.  Is your loved one struggling to do something?  Is that the moment to ask, "Want some help with that?"  Next time that task comes up, does it seem appropriate to mention, "I saw in a magazine recently these really nice sweaters with zippers instead of buttons.  I'll pick one up for you to try, but in the meantime, I could help with these buttons - they are so annoyingly tiny!"

Facilitating people to be autonomous with dignity is time consuming work of the human heart.  Caregivers know perfectly well that it's much quicker and easier to just do the task for the person while prattling on about a different topic in order to distract 'the patient'.  And there may be times when that is necessary, but can't we be honest about it?  Our loved ones deserve the dignity of an honest exchange during their care activities.

Offering assistance when it's unwelcome can be tricky.  Sometimes, "I'm here if you'd like a hand with that" can result in watching in painful silence while a loved one tries and fails to manage eating a bowl of soup from a spoon held in a trembling hand.  If inserting dignity into the situation, rather than dealing with the mess (or eating the soup) is the objective, perhaps it's not so hard.  Make the soup texture the common enemy - "look at how they make the soup so runny these days!  It's probably a cost cutting measure.  Let's see what's in the fridge - maybe we can use that soup as a base for stew.  Mashed potatoes here we come!"  Because dignity is the objective and enabled autonomy is the means to the end, the words come out in ways that are conspiratorial, empathetic, light-hearted and conversational.

But, what of asking for help?  Should we expect our charge to be aware of preserving dignity in herself as well as her caregiver?  I believe we should.  Take the case of our son.  He has very severe cerebral palsy, but that hasn't stopped him exercising terrible manners over the years.  A disability is no excuse for rude or self-centred behavior in our house.  So, when I walk into his room in the morning and it's Mother's Day, for example, I might hear a demand to change the channel on television.  I want to correct, but not demean, so Nick will laugh as he tells people that my response will be "Nick, I'm going to walk out of your room and walk in again.  We're going to say good morning properly next time so repeat after me, 'Good morning, Mom! You look especially fantastic today!' (I jazz up the compliments so we can both laugh, but he gets the point of the exercise.)  And for those who aren't aware, Nicholas is non-speaking.  But his language comprehension is near-perfect and if he manages to blow me a kiss the second time around entering his room, I take that as a respectful morning greeting.

I still don't know how to begin a conversation with a homeless person I've never met.  I don't know how I would end that conversation, if I ever did manage to begin.  The language of care is very tricky and fraught with emotion.  But one thing that my gut tells is right: we must begin with love and dignity in our hearts.  Perhaps the words will follow.

Saturday, 13 May 2017

Mom: You've Been Here All This Time

Very recently my sister shared with me a beautiful New York Times opinion piece titled 'Our Mothers As We Never Saw Them'. The author became interested in contemplating the photos of women before they were mothers. Gazing at these young faces and beautiful bodies, so bright and innocent, made me feel weepy. Why are their images deeply touching and what can they tell us about motherhood?

I think becoming a mother teaches us the responsibility of holding life and death in our hands. We learn that hard adult lesson: we are not in control. We learn unconditional love on the delivery table. And when we grow up and care for our own mothers, we begin to see them not as simply our mothers, but as people who are frail, mortal, unique and whole.

Our young selves could never imagine that a husband would die young of a stroke or that a child would be born with cerebral palsy. Our young selves cannot know how much love, care and hurt is in a mother-heart.

This Mother's Day, I give myself this photo of my Mom before my sister and me. In her direct gaze, I can see her grit and determination. And to me, it looks as if she's thinking of what to say - Mom never shies away from offering an opinion. A child of the depression and the war, I imagine my mother is thinking, "You got a challenge? Bring it on."



And I give our daughter and our son this photo of me before I had them. This was a summer holiday that Jim and I took in the Greek island of Kos. The year was 1979 - I was 24 and full of optimism and curiosity about life and adventure.


Through all the children, the love, the pain of loss and the work of caring, we really haven't changed much, have we? We've been here all this time. Happy Mother's Day!

Wednesday, 10 May 2017

WHY WON'T ANYONE HELP?!

Yesterday, I read an excellent blog post titled "Asking for Help" on the Caregiver Space.  The article is chock full of good ideas and practical advice.  It was the comments that got me thinking, though.  Many sounded like this:

What if no one asks if they can help? That’s my problem….. I’m here 24/7, if someone would ask if they could come stay here for a little while for me to get out, I might take them up on it, but nobody offers that….. It’s hard…..it’s been 3 years….. A lot of people say….call me if you need anything….. But that’s not the same as a real offer….

Others on the Facebook posting of the blog said they did ask for help, but the response from siblings was 'I think I'm busy'.  

So, what's going on with caregivers who aren't getting the help they need from family and friends? 

FEAR OF ASKING FOR HELP



There's a cop in the head of many caregivers and that cop repeats things like, 'you should be able to do this alone. What's the big deal with doing laundry or shopping or banking for Mom?'  Many caregivers believe that they are shirking their obligations and actually betraying the love they feel for a dependent loved one if they ask for help.  It feels like an admission of failure in the most important job of your life.  

Caregiving websites are littered with blog posts, resources and inspirational sayings about self-care.  We've all heard that we must care for ourselves in order to care effectively for our loved ones.  So, why is it so hard to ask for help?  And why do people say no when finally the request is made?  

One answer could be that by the time a request is made, the caregiver is so exhausted and angry that the request sounds angry.  And a caregiver who is overwhelmed is not going to be asking for something small, the request is likely to be for someone to come and 'take over' for a few days.  That's not unreasonable when one sibling (or parent) is doing the lion's share of care.  But there may be a good reason that even someone who wants to help will say no in this situation.

FEAR OF THE UNKNOWN

Caregivers who aren't used to asking for help often don't share the details of their caring lives with family and friends.  Not sharing stories and information is part of the 'Oh, I can do it myself, it's all fine" modus operandi of the caregiver who is locked in the time bomb of 'look after your own' mentality.  Family and friends who are asked to help someone in an emergency whose needs they know nothing about will be afraid to help, especially if the request sounds angry or desperate.  

HOW TO GET THE HELP YOU NEED

Change the words of the cop in the head - say instead, "I need my family and friends to be on my team.  I need to help train them. And that training will take time and encouragement."

Begin training on a good day, when everything feels under control.  Think of what members of your family naturally like to do or talents they might have.  The agenda is to familiarise your future team members on the needs of your loved one.  Remember, every caring task by itself is perfectly doable.  But taken together and over time, caregivers become overwhelmed trying to do everything alone.  Pick one task you think a friend or relative might be able to do.  Ask that person to do that task once a week for a month with a promise to re-evaluate on both sides after the trial period.  Some caregivers might not have the words to make that first request.  Try saying, "I know you love cooking and we always love all the treats you prepare.  I don't have time to cook a healthy meal every night, so I wondered if you would like to make us a meal once a week for a trial period of month or so?  You could pick a day of the week that works for you and we can check in after a month to see if that day works for us all.  What do you think?"

THE REALITY

The reality is that most people want to help, but they don't know how.  And they see the danger of becoming overwhelmed.  That's why it's important to choose small tasks that people can absorb into their lives and feel good about helping in a way that exploits their talents without feeling out of control.  Once family and friends have some experience in helping that feels good, they will be much more likely to help out in an emergency.  They'll be your teammates in caregiving.


Monday, 1 May 2017

Are There Limits To What We Will Do For Love in Caregiving?

A couple of days ago, I saw a play that made me ask the question, "Are there limits to what we will do for love in caregiving? If so, what are they for me? Are there limits to love in care receiving?"

The play was Kill Me Now by Brad Fraser. Billed as a black comedy, it's the story of a close family in which every person is flawed in particular ways. Joey, a young man with severe cerebral palsy, lives at home with his father Jake, whose promising writing career has been on hold since the birth of Joey. Jake's sister Twyla visits often, as does Joey's friend Rowdy. Rowdy has fetal alcohol spectrum disorder. Twyla drinks too much and finds intimacy painful. Jake locates solace in the arms of his married lover, Robyn. But as playwright Brad Fraser says in the program notes, "This is not a play about disability. It's a play about love and courage."  He went further in the pre-show discussion by explaining - "This is a play about saying goodbye to one's parents. It's about the limits each of us will go to for the sake of love."

As I watched the story unfold in the play, I found myself reflecting on how we choose to exceed limits in caring for those we love every day. As we set new limits, they remain intact only until the next time our loved one's needs change. This is true of our loved ones too, as Fraser sensitively portrayed in his play. They have limits of what they will give and receive just as we do. Their limits are equally challenged by the messy business of family life and everyone's changing needs.

The poignant end of the play in which father and son reverse their caring roles drove home to me how we are all compelled to constantly push the limits of what we will do to care for the people we love.

Are there limits to the loving care I will provide to my family members? Certainly I haven't experienced any limits to my love; not yet, and I don't believe I ever will. But I have experienced hard limits to the care I could physically provide in spite of my love.  Exhaustion and sometimes illness prevented me from giving the care my family members needed. In Kill Me Now, Joey's father Jake is stricken by debilitating spinal stenosis. Back pain so severe that it completely incapacitates is the trigger for everyone to re-evaluate the limits of love and care in this particular family.



Brad Fraser is a distinguished Canadian playwright who writes poetically about the alienated and the marginalized - outsiders. It's no wonder then, that he chose themes of disability and caregiving to examine in this new work. One reviewer clearly understood our daily dual realities of the mundane and the Shakespearean when he wrote: We’re seeing a troubled household here, but not a classically dysfunctional one. It’s certainly imperfect, offering sightings of flabby human bodies and the smell of pee. Fraser, a naturalistic playwright of the sort who would shudder at the thought of writing a traditional drawing-room comedy, finds his most comfortable spiritual home in the world of the alienated and marginalized....Cory Wojcik’s outstanding performance gives us a Jake who proves to be far more courageous, complex and tragic than the sagging, pot-bellied failure we initially take him to be, but even his resilience falters in the face of unexpected new challenges to the already shaky equilibrium of his existence. The abiding constant, however, is Wojcik’s truthful and heartfelt portrait of unreserved paternal love. It’s one for the memory books.

This could be the story of any one of us.

Wednesday, 26 April 2017

Meltdowns in Kids with Disabilities: Coping Tips for Parents

By guest blogger Kristen Heller

Whether you have a child who has Down’s syndrome, Asperger’s syndrome, or a child who is somewhere on the autism spectrum, there’s a good chance you’ve dealt with a meltdown at some point as a parent. As a single mom (I’m a widow) caring for a son with Down’s Syndrome, I’ve dealt with them many times, particularly when my son went through a period of grief after his father died. Meltdowns transform my son into a child I barely recognize, and there’s screaming, kicking, head banging, and hitting to contend with when they happen. I can’t count the number of times I’ve headed to the bathroom for a good cry after going through a meltdown with my son.

You’ll find plenty of good information on what defines a meltdown, differentiating a meltdown from a temper tantrum, and how to hold your child safely during a meltdown. When I started dealing with regular meltdowns from my son, all that information was great. But I was left wondering, how do I cope with these meltdowns myself? Meltdowns take a physical and emotional toll on parents, and I was left struggling, trying to figure out how to cope myself while helping my son get through meltdowns. If you’re dealing with meltdowns and struggling to cope, here are a few of the coping tips I’ve learned through the past couple of years.

Tip #1 – Stop Taking Meltdowns Personally
When you’re in the middle of a meltdown with your child and dealing with screaming, hitting, kicking, or punching, it all feels personal. It feels like an assault on your person. You’re left trying to keep your child safe, yourself safe, while minimizing any damage to surrounding property, and it’s a tough task. It’s tough to keep your composure when dealing with a child who can no longer control his own behavior.

Try to remember that the meltdown isn’t personal. Your child isn’t lashing out at you. He’s lost control and you’re the closest target. Remember, your child’s aggression and anger is about his inability to deal with the situation, not about you. Start realizing that it’s not personal and you’ll find it easier to cope with the meltdowns.

Tip #2 – Realize a Meltdown Will Come to an End
Meltdowns feel like they’re going to last forever. But recognize that they will end. Eventually your child is going to run out of energy, since meltdowns are just as exhausting for your child as they are for you. Knowing that they’ll end can help you remain calm when a meltdown happens. Sure, it can be embarrassing when it happens in public, but ignore the odd looks or comments of others and hold on to the reality that it will end soon.

Tip #3 – Take Time to Care for Yourself
As your child’s parent, you’re his first and last defense. You’ll often be the one trying to help him get through a meltdown. If you’re going to be an effective parent, you have to take care of yourself, too. This is a lesson I’ve had to learn the hard way. After my husband passed away, I spent all my time focusing on my child. I wasn’t taking time out to care for myself, and before long, I ended up in the hospital. Investing in yourself helps you ensure that you’re equipped to give your child with disabilities the care he needs.

Tip #4 – Consider Some Help
I used to feel that to be a good mom to my son, I had to do it all myself. I was wrong. There really is a lot of truth to the saying, “it takes a village…” It’s even more true when you’re raising a child that deals with disabilities. Don’t feel like you have to do it all alone. Let friends and family members help if they can. Consider a home care aide who can help you with daily personal care tasks that take up a lot of your time and leave you struggling to hold on when meltdowns occur. Don’t feel like you have to do the job alone. Try it and you’ll crack under the pressure.


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Dealing with meltdowns can be one of the toughest parts of parenting a child with disabilities or special needs. And you need to know that it’s okay to fall apart yourself sometime. There have been days I thought I’d lose my mind if I went through one more meltdown with my son, but I learned ways to cope. And I survived. You can too! Learn to cope and take care of yourself and when that next meltdown occurs, you’ll know that you’ve got this.

Kristen is a passionate writer, teacher, and mother to a wonderful son. When free time presents itself you can find her tackling her lifelong goal of learning the piano! 

Sunday, 23 April 2017

Give Up My Job to Give Care? OK, Pay Me.

Many years ago and before we had children, my husband and I took a week-long holiday at a Caribbean resort. We befriended a couple from Baltimore who had an interesting story to tell. When I asked "What do you do?", the woman answered, "Well, I used to be in the insurance business, but I quit my job to look after my Mom full-time. She needs a lot of help and she would rather stay at home and have someone in our family give care instead of professionals. So we made a deal that my husband and I will move in with Mom, I'll be her paid caregiver and my husband will continue working as usual. I start my new job with Mom next week!"

I nodded and smiled politely and exclaimed that I thought these arrangements were very imaginative. But secretly, I was shocked by how a daughter could turn family caregiving into a commercial transaction. Didn't this woman love her mother, I wondered. Of course, these were the naive thoughts in my head before I became a caregiver myself.

Now looking back, I think this woman did a wonderful thing for her mother. And she did so without shortchanging herself - she even told me that she'd drawn up a contract with her Mom so there would be no misunderstanding. How clever!

I think caregiving contracts in families are a fabulous idea. Of course, none of us wants to commercialise the kind of loving occasional care that is freely exchanged between family members and close friends. But when caregiving becomes a full-time job, or one sibling in the family takes on a much greater share of parental care, there should be some reasonable recognition of that labor.



A quick search of family caregiving contracts yielded lots of templates.  But all the sources I found had roughly the same advice - care contracts within families should include the following basic information:


A personal care agreement should include the following basic information:
  • When the care will begin.
  • What tasks you'll perform. Be specific and thorough, but also include the term "or similar tasks to be mutually agreed upon by the parties." This gives you both some flexibility, so that you won't feel like you need to rewrite the agreement every time you change the tasks you perform.
  • How often, and for how many hours, you'll provide this care.
  • How much you'll be paid, and when the payment will be made.
  • How long the agreement will stay in effect. This can be a set time, like six months or a year, after which you can both decide whether you want to make any changes. It may be simpler, though, to make the contract open-ended, described with a phrase such as, "This agreement shall remain in force until terminated in writing by either party." In that case, either of you can end the arrangement at any time simply by writing a signed, dated note saying that the agreement is over, and giving the note to the other person.
  • A statement that the terms of the agreement can be changed only by mutual agreement, in writing, by both parties.
Even if you don't want to execute a formal contract, ensure that there's a clear and shared understanding of how out of pocket expenses will be reimbursed. For primary carers of children with disabilities, the principle of 'Pay Yourself First' is a good planning strategy. A lot of mothers of children with severe disabilities, myself included, forego paid employment so long as their child is living at home. After many years, full-time caregivers are left without pensions or financial security, especially if they are single parents (luckily, I am still happily married after forty years, and we have saved for our retirement, thank goodness). The principle of paying oneself first not only gives value to care work, but it creates an emergency fund of one's own. Economic independence for family caregivers is a cornerstone of self-worth and personal freedom. 




Tuesday, 18 April 2017

The Unfairness of Caregiving


I've been trying to remember the first time I felt the outrage of injustice. I recall that in about grade four, I was playing outside my school when the bell rang to announce the end of recess. It was winter and the snow was piled up high beside the school. Unbeknownst to me, there were basement windows behind the snowbank and the day before when I'd been away sick, a note had gone home with all the students warning all students to keep away from the snowy barricades in case a shift in the weight of them smashed the hidden windows. Being unaware of the all-school directive, I decided that the snowbank was the perfect place to play 'King of the castle' and of course, I was the King.

The bell rang and along with a couple of my friends, I was called to the principal's office. I had no idea what I'd done wrong, but I knew I was in trouble. It was inconceivable to me that I should be treated like a common grade-school criminal. I was innocent! I decided to try distraction combined with a firm assumption of the moral high ground. I asked the principal if, by any chance, he knew the time. This was a mistake. Far from making him realize that he had the wrong girl, he got really angry and gave me a double detention. I was furious.

I've always been outraged by unfairness. I can't shrug it off. So I've been wondering about injustice in my own life experience. Most of the big injustices in our family haven't happened to me - they've happened to others who have developed care needs because of stroke (my Dad), disability (our son Nick) or age (my Mom). I've had to come to grips with the unfairness of illness and disability and sometimes it's been hard. But I realized that railing against the frightful injustice of what IS doesn't make anything better.

Have I experienced unfairness in caregiving? Of course. I think every caregiver does. And the biggest unfairness is the absence of personal choice when everything in our society tells us that we should have the right to choose how we spend our time and our money. We should be able to do what we want when we want, at least some of the time. But often in caregiving, we don't have that option and it feels very, very unfair.



I've worked hard at understanding my life in a way that makes me feel happy and fulfilled. But I don't underestimate the sense of unfairness that I've experienced and I know others experience it too. Caregiving is unfair because it's tied up with loss. But sometimes loss is just 'what is' no matter how painful and we have to accept it in order to understand that our family life and our role in it both have great value.

I think outrage is the appropriate response to injustice and unfairness. Where would we be without activists or advocates to make the world a better, kinder place? But caregivers who are in it for the long haul have to curate their unfairnesses carefully. We need to pick winnable battles.

That said, I hope that by some miracle of technology, my old school principal is reading this and is now sorry for giving me that double detention.