When Rob Obey became a full-time caregiver for his wife, Bridget, he knew some of the obstacles he’d have to contend with. But even the most knowledgeable among us may underestimate how much a new situation or set of circumstances will impact our lives.
Now in his eighth year of full-time caregiving, Rob would like to share his top tips for managing mental and physical health, caregiver-patient communication, and being part of a team.
“As a new caregiver, it can sometimes feel like no end is in sight,” Rob says. “We've all had dark times. I promise you, though, it does get easier.”
I'm now in my eighth year of full-time caregiving for my wife, Bridget.
My wife is as dear to me as the day we first met, so I would have loved to tell you how easy it's been. But, if you, like me, are a caregiver, you'll know providing full-time care can be exhausting one moment, frustrating the next, and horribly lonely at times - even with your loved one by your side.
For me, transitioning to full-time caregiving wasn't up for debate, but just because it was necessary doesn't mean it wasn't hard.
One day I was chasing the next big promotion, grinding away to put food on the table and living life as most couples do. The next (so it seemed), my job and income were replaced by the 24/7 responsibility for somebody else and an overwhelming feeling of sadness.
I had to adapt to my caregiving responsibilities
People say, "Time is a great healer," and I can't argue with that. The sadness dwindled a bit as the months passed, and I got used to our new life. Everything wasn’t such a shock anymore, and Bridget and I learned to adapt to the circumstances. But the sadness never wholly disappeared - sometimes, it likes to make an entrance.
Even today, eight years on, I am hit by waves of grief more than regret. Neither of us chose this, and it's not a result of "bad decisions" on our part. Instead, I might feel melancholy about the life we could have had if our cards were dealt differently. While "Time is a great healer" may be true, "You can't miss what you never had" is only technically correct. As is, the phrase is a platitude at best and a reprimand at worst.
Then reality kicks in, and I remember to be thankful for the life we have now. There are still many things I'm grateful for, and navel-gazing wastes time and energy.
Caregiving is hard, but we can make our lives slightly easier
My story isn't unique. Very few of us plan to become full-time caregivers for a loved one. Often, caregiving is forced upon us without warning, and we have no other option but to rise to the challenge.
And that's the purpose of this article. I want to share my experience and practical tips to make your transition to full-time caregiving as smooth as possible.
Our experiences may differ, as will the needs of the person we care for. However, there are some constants and things you can do to help yourself.
Here are four considerations for being or becoming a full-time carer when we know how hard caregiving is.
1. Care for yourself first
It sounds contradictory, but there are thousands of articles on self-care for family caregivers nowadays - and with good reason.
Simply put, if you are ill, run-down, tired, or stressed, you'll struggle to care for someone who relies on you. If you don't tend to yourself first, you both lose.
I know this to be true. I didn't look after myself first, and we both suffered the consequences.
1a) Look after your physical health
We tend to underestimate how much physical activity is involved with caregiving. There could be:
- Fetching and carrying
- Pushing a wheelchair
- Providing physical support for leaning/walking
- Bathing, grooming, and dressing your loved one
- Constant bending down and standing back up
- Holding arms out or keeping an uncomfortable position for more than a few seconds
If all this sounds like enough of a workout, think again. Research shows that a physically demanding job can't compete with the benefits of exercise. In fact, men with jobs in manual labor have a shorter life expectancy than those with sedentary jobs getting 30 minutes of daily activity before or after work.
Why? It almost isn't fair. Physicians and scientists have also attempted to puzzle out the reason.
Firstly, cardiovascular exercise (the type to get your lungs hurting and heart pumping) is more effective in short, intense bursts. Once the activity is over, your body can rest, heal, and strengthen.
Jobs requiring a lot of heavy lifting, standing, climbing stairs, and keeping uncomfortable positions are beneficial for a short while. However, after a few weeks or months, the small benefits dwindle to neutral, then negative.
Workday activities such as standing, climbing stairs (even several times per shift), lifting heavy boxes, or making repetitive movements are:
1) Not done enough over the day to fulfill your exercise needs
2) Not varied enough, so the body gets used to them quickly (if you do move non-stop for hours)
3) Causing your cortisol and blood pressure to spike for dangerously extended periods, negatively affecting your health in the long run.
In addition, the demands of a physical job don't allow us to hydrate, rest, or eat when we need. Instead, we gulp down water, stuff ourselves, or collapse from exhaustion when we get the chance.
This isn't good for us. Exercising and eating well (even when we really don't want to) will strengthen our hearts and muscles enough to reverse the toll of physically demanding jobs.
So, look after your physical health, even if you didn't before becoming a carer. I didn't, and I became pretty ill four years into caregiving for Bridget.
I had a heart attack, developed heart failure, was diagnosed with fibromyalgia, and had a kidney removed because of cancer.
I couldn't care for myself, let alone my wife.
I was lucky because I had a family to step in to look after us. Imagine what could've happened if I didn't.
I know it's hard, but create time to exercise, even if it’s just chair exercises when you get a spare minute.
And eat well, too. After an exhausting, emotionally-shattering day, I want to sink into the sofa and eat comfort food. I certainly don't want to spend time preparing a healthy and filling snack when I'm starving and feeling burned out.
But it was time I faced the facts. If you eat well, your body performs better, you have more energy, and you're more alert.
If you're concerned about your health, no matter how small the issue, seek advice from your GP. There may be a million reasons for not wanting to find help - you're tired, busy, or hope the problem will "go away." Still, you must look after your health before your body has to deal with the consequences.
I'm living proof of that.
1b) Look after your mental health
Looking after your mental health can be more challenging than managing general fitness. Setting aside viruses, bacteria, accidents, genetics, etc., looking after your physical health can be whittled down to four key points:
1) Eat healthily
2) Exercise for 30 minutes at least 5 days a week
3) Sleep for 7 to 9 hours per night
4) Avoid bad habits like smoking or drinking to excess, especially to manage stress
On the other hand, following the above four guidelines may help without guaranteeing sound mental health. Our mental health is often influenced by circumstances, friends, relations, and other outside forces. We may even be okay with a situation until our mental health deteriorates without us noticing.
You face a massive life change when you become a part or full-time caregiver. Caregiving is hard on you in all sorts of ways, and life as you know it will never be the same. Both you and your loved one must accept it.
For me, the first few months of caring were like a holiday. Then the magnitude of our situation dawned on me, and I became overwhelmed.
I didn't crash, but my mood became progressively darker and more negative. I was carrying a heavy weight and couldn't put it down.
I should've spoken to someone; a friend, a family member, or my GP. I resisted fiercely - I thought I could deal with it in my own way, and asking for help was a weakness.
How wrong I was. Nothing changed until I accepted I needed help and asked for it.
Yet before I spoke to anyone, what really helped me was writing. Over time, it became my release.
Writing was a way to share my thoughts and offload my worries. I had no idea it would turn into a new career.
Ironically, one of my first posts was: Four Things I Hate about Being a Full-Time Carer.
Speaking to someone would've been quicker. Still, writing lifted a heavy weight from my shoulders; it was my escape.
My point is that help is available if you want and ask for it.
2. Instead of thinking in terms like "caregiver" and "dependent," reinforce that you're caring as a team
Caring for someone is a two-way street. Looking out for each other as a team is more effective than caring alone.
I'm lucky because Bridget can communicate her needs which makes things easier. She can tell me how she's feeling, what she needs, and (dare I say it) when I'm doing something wrong.
What caregiving is NOT doing is taking away autonomy from your loved one. If your loved one can still communicate with you - verbally or non-verbally - thinking "I know best" and overriding their wishes will damage your relationship.
You are there for practical and emotional support, not to take away a person's independence. Being the only "decision-maker" also piles unnecessary pressure on yourself.
Take time to sit down and chat about what's expected of both of you. If you don't, resentment can rise, and tempers can flare. You don't want that.
3. Acknowledge the hard times - past, present, and future
There will be plenty of tough times when you're a caregiver. Resilience and patience are required to get through these periods.
Remember, being a caregiver is not synonymous with being a superhero. You won't win awards for carrying the load on your own. In fact, simply acknowledging things can be difficult or beyond your control can validate you far beyond a fake "happy face."
If you can practice my previous "caring as a team" point, riding the tough times out will be less challenging. At the very least, you need to be able to communicate and resolve any niggling issues.
If you can't resolve problems between you, exploring options from outside agencies is a sensible option. This could mean:
- Therapy (for you as a couple and individually)
- Respite care, if affordable and available
- Frequent communication with your support circles
4. Know it does get easier (even when it seems like it doesn't)
As a new caregiver, it can sometimes feel like no end is in sight. We've all had dark times. I promise you, though; it does get easier.
And, despite caregiving being one of the hardest things I've ever done, it's also rewarding. It has brought Bridget and me closer together.
We are now much more in tune with each other's needs because we have a shared purpose. We laugh together, cry together, and drive each other mad.
Most of all, we understand that caregiving is part of our identity and doesn't define us. We are still who we've always been, now with extra responsibilities.
I have never liked the label "caregiver." I know it's a necessary label to receive certain types of support. I'm just a man trying his best to make his wife's life as easy as possible.
There is no definitive guide to being a caregiver; you usually make it up as you go along. It can be frustrating, exhausting, upsetting, and financially draining. Sometimes you'll get ill and will have to rely on outside help. Other times, you may feel like you can't give any more than you have already.
But seeing my loved one surviving and sometimes even thriving makes it worth it.
My advice would be to do your best, talk to each other, and remember why you're doing it. You are a caregiver for a loved one because you love and trust each other. If that's not being held in high esteem by the people who matter, I don't know what is.
Note: The information presented is solely for educational purposes, not as specific advice for caregivers. Please consult with a professional who can apply best practices and appropriate resources to your situation.
NPS-ALL-NP-00650 NOVEMBER 2022