18 HOURS

A Guest Post From a Tired Caregiver

With a short break for sleep, my teenaged daughter Lily has screamed, shouted, ranted and thrown household objects for 18 hours straight. She follows me outside and from room to room inside. If I lock a door, she pounds on it and shouts. The only way I can escape her is to make a break for my car, start it at lightning speed and drive away. But she’s not safe to be left for too long, so after a few blissfully silent minutes in my car, I return to the shouting. 

I have followed the instructions of her mental health team. I have phoned the emergency mental health number. They won’t come because she is ‘acting out’. “Phone the police”, they say. I phone the police. They tell me it’s “not really our bag”, but agree to send a car. They phone a few minutes later to say that car has been diverted to another incident. They’ll come, they say, they just don’t know when. Several hours later, we phone the police again. “Sorry”, he says. “Sunday’s a big day for us. Just going off duty but if it gets worse, phone this number.” It gets worse. We phone the number he gave us. Eventually, after several more hours, our kid finally exhausts herself, takes her meds and goes to bed. I totter straight to bed too. We are woken at 11pm by police with flashlights who have finally arrived to do a welfare check only to wake Lily up! Luckily, her meds send her back to sleep.

Today, my teenager has gone to school where no doubt she will NOT scream and shout. I’m holding tight the strategic lines advised by our mental health team. She has no privileges and still no emotional input from me.

This is not new for us. Lily has a little-known chromosomal disorder which causes (amongst many other things) learning disabilities, extremely high anxiety and obsessive/compulsive behaviour. As she struggles to regulate her own emotions and find her own solutions, I have acted for many years as a kind of external hard drive. She logs in to me for solace, to pick through and make sense of her emotions. But I’m burned out now. My health is failing. Despite years of coaching, loving, strategizing, supporting and seeking every possible avenue of help, Lily’s needs continue unabated, relentless.

In the outside world, Lily appears high functioning. To the untrained eye, she does not have distinguishing features like Down Syndrome and for short periods of time, she almost passes for ‘normal’. She is often affectionate and engaging and although her neediness is apparent, her school teachers only see the tip of the iceberg and they remain sympathetic and helpful towards her. I’m so grateful for this – they’re wonderful! But they’re not her external hard drives and all her angst and anxiety and her anger is saved up throughout the day to be downloaded to me. This is Lily’s M.O. She even contains with her grandmother whom she adores and sees every day.

I’ve lost count of the times that people have shared with me that she’s just spoilt. “She only behaves like this with you!” “She’ll be fine!” “All children behave like this.” “You need to look after you.” “Have you tried…(insert treatment of choice: Bach flower remedies, mindfulness, gluten free diet, horse therapy, CBT, ACT, DBT…)?”

It wasn’t until just last week that a Clinical Psychologist told me, for the first time in 16 years, “this is not your fault.” She told me that Lily’s condition is largely a biological accident. That yes, we’re always working on improving situations, but you did not cause this situation. This brought me some relief from exhaustion. But it doesn’t present a place for Lily to go where she can be safe, yet apart from us.

Lily’s IQ is not low enough to admit her to Intellectual Disability Services. She is not (now) violent enough for the police to come. She used to be – but in those days we were still coping and keeping her behaviour to ourselves. Government Child Services have few residences and those are poorly staffed and sometimes unsafe. Our mental health team of Psychiatrist, (occasional) Psychologist and Social Worker do their best with meds but can’t control much beyond that.

So, we exist, but we are largely unseen. Lily struggles with significant disability but is not disabled enough: not for outside services and not for the kind of social support which I now crave. We are copers, my husband and I. We have coped. But over time, coping has come at the expense of our social life, hobbies, my career and our health and wellbeing. The erosion has been so slow and steady that it has taken us a long time to finally look up and see how isolated we are now. But we’re still working, earning, staying washed, clean, lawns mown, nutritious food cooked. I communicate competently with the school, mental health and health services. We’re educated, well spoken, white and straight. We live in a nice part of town. Our neighbours know about Lily – so they don’t call the police even when it sounds like they probably should. It has been said that we’re our own worst enemies.

Yet to behave otherwise would seem a gross injustice to Lily. She is our child. We love her beyond measure. We have done everything in our power to give her the chance to live her best life. We’re still doing everything in our power… but our wattage is dimming. We’re frightened now. We’re getting older, less vigorous. I simply cannot imagine what will happen to Lily when her external hard drive croaks. The living possibilities for people Lily are limited and we are working on setting up a private arrangement. But we need more time, so for now, we push on. More strategies, more coaching. Hoping that eventually she’ll take over some of her own emotional regulation.

This is a caregiver’s story. But I’ve broken the narrative rules. This is not an uplifting, empowering and positive story. Within the organisation that I’ve helped form over the years to inform others living with Lily’s condition, there is a standing joke that I should never be allowed to speak in public lest I frighten the families. The publicly palatable version of disability is that they are our gifts, that they enrich our society and we are grateful for their lives. Our family laughingly calls this the #blessed discourse. And of course, there’s a great deal of truth in this. Lily has changed us – in some ways for the better. Unable to work full-time, I have studied. I have a post-graduate qualification in Psychology!

But I also want the less palatable stories told. I want to hear stories from the ‘grey areas’ where people are not disabled enough or sick enough to attract the care they need. I would love those stories to be heard without judgment and with compassion. Even better, I would like to see those stories translated into changed services for families like ours. Services which acknowledge the needs of caregivers as crucial. Services which, as well as being patient centred, are caregiver centred and which put in practical measures of support before it’s too late.

I hope it’s not too late for us. We’ll see what the next 18 hours bring.

Sue is a native New Zealand mother, grandmother, small business partner and post-graduate student of psychology. When she's not looking after her family and pets, Sue indulges her passions for wine, media and books. 

The Importance & Complexity of Compassionate Caregiving

It is my pleasure to host this guest post from author Christian Worstell on the subject of compassionate caregiving. Can compassion in caring be taught and learned? Or, is it a talent that is either in us, or not? Read on.

Photo Credit: Pexels

What do you think of when you hear the word care? Do you instantly think of compassion, or do you think of physically taking care of someone?  For me personally, care and compassion go hand in hand. But unfortunately, it’s not that simple.

Caregiving can be extremely challenging and frustrating at times. The journey of caring is not an easy one and it’s completely normal to feel burned out. As tempting as it may be to feel guilty or embarrassed, it is important to understand that you’re making a huge difference in someone’s life. Your feelings are real and valid, and odds are you don’t give yourself enough credit for your hard work.

So when you’re questioning your purpose or feeling worn down as a caregiver, I challenge you to think back to why you do it. It isn’t always a choice, but here you are doing what so many are scared of.

The thing is, you can’t provide adequate care without compassion. Compassion is essential to caregiving; it involves showing understanding and appreciation for others feelings and emotions. Without compassion, caregiving can be counterproductive.

Research shows that compassionate interaction with doctors can affect healing. In fact, having a connection can actually stimulate self-healing techniques.

It’s no secret that a little compassion can go a long way, but it’s important to note that expressing compassion can have a positive effect on caregivers, too. When you add compassion to caregiving, a true bond can be formed. And this can make being a caregiver a lot easier.

So instead of turning to a self-deprecating mindset, be proactive and utilize skills that you can learn to improve yourself as a caregiver. I know this is easier said than done, but there are some simple steps you can take each day to implement compassion into your caregiving routine.

Use good listening skills

Sometimes we get caught up and we don’t properly listen. We only half listen or don’t listen at all. Developing good listening skills can help you build compassion in your role.

Practice mindfulness

Learning to have more compassion really involves making the shift to assume the best in others. And that’s an amazing skill to have. Make mindfulness a priority, and always give the benefit of the doubt. This skill may benefit you in other aspects of your life, too.

Avoid biases

It’s normal for us to make assumptions, but try your hardest to fight them. Biases can really interfere with your ability to express compassion.

Make eye contact

We’re so busy that sometimes we forget how meaningful simple eye contact can be. Make it a priority to make eye contact from time to time. It can really help to form a connection with your patient.

Pay attention to your body language

Sometimes our body language doesn’t match our words. Be conscious of this, and practice compassionate body language.

Familiarize yourself with caregiver burnout

Learn the symptoms of caregiver burnout and seek help if you feel you are experiencing it. Please make your mental and physical health a priority so that you can be at the top of your caregiving game.

Consider compassion training

Compassion training for health professionals is a real thing. Do some research on it and see if it’s a good fit for you.

As a caregiver, there are so many things you have to keep up with — medications, your loved one’s health insurance, doctors’ appointments and more. Showing compassion is not at the top of the list, but try to make it.

Remember that the best caregivers are the one who do just that — care. Keep this in mind on your caregiving journey and continue making a difference. You are appreciated more than you know.

Author Bio: Christian Worstell is a health and wellness writer living in Raleigh, North Carolina.

 

"I'VE FELT SO MUCH AND NOW I'M NUMB"

Today I was speaking with another caregiver. We were talking about trauma.

My friend's Mom has been progressively losing skills due to a degenerative disease. It wasn't just the disappearing abilities that hurt my friend, it was the numbness she felt herself. Here's how she described what happened yesterday. "Mom's been using a power wheelchair to get to the dining room where she lives in assisted living. But recently, she's become unsafe driving it - she's running into walls and people. So yesterday, I took it away. I did it mechanically, I just felt numb. This was a BIG deal and I didn't feel anything. But I went home and I realized that I should be hurting for Mom. I hate this. I hate being numb. I LOVE my Mom."

I've experienced numbness in my caregiving life and I'm betting that most other long-term carers of loved ones with chronic disease or disability have experienced it too. I decided to ask my niece Christina Opolko about this symptom of stress and exhaustion. Christina is a licensed drama therapist and is highly trained in trauma response therapy.  Here's what she said:

"I think as traumatic moments and major traumas accumulate, they become something called complex trauma. Over time, when the body goes into overwhelm, some people train themselves to override their feelings (sometimes called 'functional freeze') in order to keep functioning. This is a symptom of complex trauma. Over time, this can lead to loss of identity, inability to claim space beyond the caregiving role, and a near constant anxiety regarding self and other, without a clear root cause....the cause has been cumulative.

So I think the cause of feeling numb is complex trauma, overriding one's emotions and, I would add, forced accommodation. In trauma, if you are forced to accommodate constantly to someone's needs, there is a needs imbalance, and over time, it too can feel like trauma. The body cannot distinguish trauma from shutting your needs down to serve another under stressful circumstances. The two feel the same. The neurophysiological response is the same in both extreme stress and in suppressing your needs in order to attend another."

I might add one more cause: hyper-vigilance over a long period of time. Hyper-vigilance in order to avoid dangerous and life-threatening consequences of an illness or disability can lead to 'shutting down' one's emotions, in my experience. Being on high alert for the sake of someone's life and limb is a good reason to use whatever coping mechanisms are at hand, even emotional numbing. 

So, how can burnt out caregivers get their feelings back? Christina advises two strategies to begin. The first is called 'interoception' - it simply means being aware of your body in a purposeful way, the same as in yoga, mindfulness meditation or Tai Chi. The idea is to become more acutely aware of how the sensations in our bodies influence the thoughts in our heads. The second strategy that Christina is reaching out for support - to a medical professional, family, friends, or online. Seeking support may seem like a trite or even useless suggestion to caregivers whose emotional range has flatlined. "What's the point of talking to anyone?" could well be a symptom of being overwhelmed by a sense of futility. 

Is emotional numbing a good coping mechanism? Maybe sometimes, it can be. But mostly (in my experience), it is better to cry, much better. And my worry that if I started to cry, I would never stop was unfounded. I cried, yes, but then I stopped and I carried on. We all do. I reclaimed my feelings by asking myself, "What do I feel right now? Where are my muscles tight? Where are they relaxed? How does this orange taste in my mouth? Which muscles move when I swallow?" And I reached out to my family, my friends and my fellow caregivers. For me, nature was and is a great healer, too. Being in my garden, walking in the woods, even standing at the window looking at the rain all heal my heart and soul making me MORE emotional, ready to sense my body and especially the bodies and emotions of those I love.

Christina recommended that I watch this video about healing trauma from Dr. Peter Levine. If you recognize yourself in this description of trauma experience, I urge you to watch it too.

PS: Deb, long-time complex disability Mom who is also a reader on the Caregivers' Living Room Facebook page posted the comment below. It is so beautiful, true and poignant. I just had to share. Thank you for your wisdom, Deb.

This article is bang on for me. I have been caring for my complex needs son for 30 years and the "hyper vigilance" over repeated crises, hospitalizations and just day-to-day monitoring of his medical instability have forced me to help us both survive through accommodation. I have definitely totally shut down my own needs yet, strangely, what I thought I needed before has evolved into a new and, not that awful, "extreme living in the present." If anything, I have a completely different perspective on what really makes a life and what we are able to accomplish under duress. Perhaps we are all heading toward that eventually and I am just getting there faster? It doesn't even seem like futility or numbness any more. It's more like entering a new sphere with different rules of engagement.....