The most difficult part of caring for an ill spouse. The struggles of spousal caregivers.

What is the most difficult part of caring for an ill spouse?

I always wondered if I was, but if you’re married to someone with chronic illness, then you are a spousal caregiver. I later found what is the most difficult part of caring for an ill spouse.

My M doesn’t suffer from one illness only. After her diagnosis of endometriosis, my wife was diagnosed with fibromyalgia.

She has multimorbidity, which means that she’s affected by more than one condition.

The mental impact these conditions have on her is vast.

She has anxiety and depression however, her anxiety developed into Obsessive-Compulsive Disorder after her laparoscopic surgery for endometriosis.

But what does it do to me as the caregiver? What is the most difficult part of caring for an ill spouse?

Being both – professional and spousal caregiver, I have the best answer to your question:

Spousal caregivers are forgotten and our voices are simply not heard.

Behind every spousal caregiver’s lying a hidden world of experiences that no other family caregiver has.

Caregivers hide their emotions because they don’t want to overwhelm or hurt their chronically ill partners who suffer enough already.

Caregiving is an overwhelming, terrifying, often complex job with no relief in sight. Caregivers who work don’t have enough support at home, and often have to take time off.

Aside from the financial impact caregiving has, the complex emotional and physical demands lead to isolation and depression.

You need to respect yourself in order to provide the best support for your loved one.

You need to practice self-care because spousal caregiving causes you to feel frustrated, angry, resentful. It makes you feel grief, guilt, anxiety, and depression.

Caregiver burnout is rarely mentioned despite the stress that comes with caring for your chronically ill partner.

The most difficult part of caring for an ill spouse…

Caregivers’ voices aren’t heard enough and this is the reason for society expects us to take the hardship on the cheek and deal with it.

When male spousal caregivers have access to help, many of them still come up with excuses to turn it down.

Why?

Because we are afraid to be seen as weak in other men’s eyes.

We feel that opening up to someone else means that we cannot cope with difficult situations on our own.

But the possibility of accepting support ensures that you can have a life apart from the needs of your chronically ill partner.

When you are a professional caregiver, you’re in luck because your employer’s duty is to provide you with support.

As it happens I’m a professional caregiver, but when I come home, I’m a spousal caregiver too.

I have knowledge from both points of view and can tell you what is the most difficult part of caring for an ill spouse because my caregiving duties never stop. I’m a caregiver 24/7.

If I had to put it in one word, the most difficult part of caring for an ill spouse is not being heard.

Not being heard alone is a vast subject because there are many aspects of being a caregiver that isn’t spoken of.

Let’s begin with the basics and ask the question that nobody asks – why no one ever talks about the family caregiver?

Why does no one talk about the family caregiver?

Society expects healthy people to take care of the sick ones. Fair enough. Furthermore, if it’s your family member, the expectations become even more prominent.

The imbalance between the focus being placed on the chronically ill person and their loving spouse who supports them is still invisible.

But let me remind you that for every woman who has endometriosis there is an army of men who support them.

For every woman suffering from fibromyalgia, there is another army of men.

But the question remains. Why caregivers aren’t taken seriously? This is the most difficult part of caring for an ill spouse.

I am never asked enough what I think or what I feel. I even made myself believe that I’m not as important as what my wife is going through.

And however that’s true, the job I have taken on is a tough one.

Sometimes I feel like banging my head against a wall, and still, I’m not being heard.

This is why I created this blog. Worry Head was created to give a voice to the spousal caregiver.

Why aren’t we heard?

Because we care about our partners so much, we don’t tell them how we feel.

We believe that by doing so we would make them feel worse. They go every day through a lot of anxiety over their unknown future, and that is the last thing they want to hear.

Well, at least this is what we believe. We don’t want to overwhelm them with our emotions.

And so we keep those feelings bottled up within ourselves.

I do better when I have someone else to express my feelings to. I consider myself tough, and I’m an optimist, but I am not superhuman.

What helps my situation is the fact that apart from supporting my wife I work professionally as a caregiver for disabled young adults, and along with my job comes professional help.

I’m talking about counseling.

It wouldn’t be wise of me not to discuss it, so the next part of the post is dedicated to therapy.

The importance of counseling!

The importance of counseling for caregivers is not well known, because the awareness of their struggles isn’t spread around.

As a professional caregiver was offered therapy. It was the nurse that works with me who offered the counseling.

I am lucky enough to live in London. By working for my company I have CBT therapy totally free.

But it doesn’t change the fact, that free or not, you are going to need it if you have no one to talk to about your feelings about being a spousal caregiver.

CBT stands for Cognitive Behavioural Therapy. It’s often offered to people who struggle with mental health.

Although caregiving is a rewarding experience, it is also mentally and physically demanding.

Without proper support, it can take a toll on your mental well-being and lead to caregiver burnout.

Burnout is your worst enemy, but mental health resources can help you provide the care you need.

Yes, not only your chronically ill partner needs that. You have to take good care of yourself, otherwise, you will not be able to help your partner at all.

I’m yet to begin my counseling as I was offered it a week before writing this post. I am going to let you know how it goes. In the meantime, I’ll base it on what I know.

My wife had three separate therapies and they helped her every time.

I know that the subject of this post is the most difficult part of caring for an ill spouse, however, since my wife’s health affected me, I joined a few of her sessions and learned how it works.

Why caregiver counseling is a necessity?

Amongst spousal caregivers, the prevalence of mental health disorders is higher than among common carers.

Not all spousal caregivers experience anxiety or depression, but for those who do, learning how to understand and address your feelings is one of the greatest benefits of cognitive-behavioral therapy.

Keeping negative feelings inside is unhealthy. It leads to isolation and feeling powerless.

Those caregivers who receive regular emotional support often prevent burnout and can handle difficult decisions, to balance their own needs with those of their partners.

Caring for caregivers.

If you don’t get help such as counseling, you are risking your own mental health problems. Stress is your enemy and you have to make taking care of yourself seriously.

The stress is caused by the emotional and physical strain of caregiving. Because many of us are on call every single day, we can get overwhelmed.

The amount of care we need to provide adds up every, day and eventually causes high-stress levels.

There are signs and symptoms pointing towards caregiver stress, and they include:

• Feeling overwhelmed.
• Feeling alone.
• Having insomnia.
• Feeling tired.
• Losing interest in activities.

These high-stress levels can affect caregivers in a number of ways, and if not treated properly, it could lead to more serious health problems.

It is important to remember that, as a caregiver, you need to prioritize your own health as much as your spouse’s.

Many caregivers will experience stress. You’re going to feel overwhelmed, irritated, and socially isolated.

As I said at the beginning, the most difficult part of caring for an ill spouse is not being heard, and what’s the best medicine for that – it’s being heard.

So, if counseling seems out of reach to you due to its expensive nature, or you have to wait in a long, 9-month cue as my wife did, there are other ways to be heard.

One of the best ways is finding social or support groups, which can go a long way toward helping with social isolation and reducing stress.

Not only such groups are created by those who suffer and know how to help you, but there are also groups created by professionals.

So, don’t underestimate the power of Twitter or Facebook groups. They are a big help!

Conclusion…

Caregiving for a chronically ill spouse is a very challenging task.

The most difficult part of caring for an ill spouse is undoubtedly not being heard, not only by family members but sometimes even by the person you care for.

A society focused its minds on people who are on the receiving end since they suffer from chronic conditions there’s no cure for, but along with them, caregivers suffer in silence too.

We need to talk about it, we need to spread awareness about those forgotten caregivers who sacrifice their lives to help others.

Our voice matters and this very blog is going to spread the word.

I’d like to invite you to raise awareness too. So please, speak to your family, friends, doctors, because our numbers grow.

For every person suffering from chronic pain, there is a spouse who supports them.

If we spread the awareness, it will make their job easier.

I hope that the most difficult part of caring for an ill spouse will come to an end when we learn more about the struggles of spousal caregivers.