Coping with caring for an ill spouse. Tips for the challenges behind caring.
Coping with caring for an ill spouse can be hard.
Chronic illness can happen to anyone. Many people are affected by it, but no one talks about spousal caregivers, for whom caring for an ill spouse can be really challenging.
Some people even leave their partners. An example would be a much higher divorce rate amongst adults with endometriosis than of the “healthy” ones.
The pressure on caregivers varies from person to person, but most of the time it can be very overwhelming.
There will be days when your partner’s illness won’t bother you as much, but there will be days when it affects you really hard.
Every year millions of couples are faced with a serious illness. Chronic conditions are life-changing for both of you.
And if your partner suffers like my wife from multimorbidity, it makes things 10 times worse, especially, if it’s endometriosis and fibromyalgia.
However, there are plenty of blogs describing the needs of those who suffer, but rarely the needs of the supporter.
We are often overlooked and forgotten. Our needs simply aren’t met.
Coping with caring for an ill spouse can be very demanding.
Not only do you have to take care of your ill partner, but family members like kids, sometimes aging parents.
But what about you? Why does no one talk about family caregivers?
It’s time to speak up! Our voices need to be heard! This is why I created Worry Head. To spread awareness about the unspoken challenges of caregiving male partners.
Here are 7 strategies to help you cope with caring for an ill spouse without affecting your partner:
- Get informed.
- Listen and share time.
- Talk to doctors together.
- Prioritize your opinion.
- Keep encouraging.
- Accept help.
- Do something for yourself.
You have suddenly been put into the role of caregiver and don’t know what to do. How can you stay mentally strong while you do it?
Let’s begin with these 7 tips…
Family caregivers cope better when they know what to do.
Your chronically ill partner knows what to do when the flare-ups occur. Their body tells them so.
They learned what triggers them and what to do to prevent or minimize their symptoms.
So, the answer is right in front of you – your partner.
They have a piece of accurate, firsthand information about their condition, about their needs, and sometimes even about the treatment.
While the internet may provide you with general and specific information about your loved one’s condition, it takes time to research it.
There is no better way than asking someone who experiences it directly. It will serve you best in coping with caring for an ill spouse.
Additionally, it’s important that you remember that the reliability of medical information on the internet may be risky.
Some websites provide inaccurate information, so you should always talk to your health care provider about the medication.
That brings me to another vital point – do it together!
Talk to practitioners together.
Every time my wife went to her appointments alone while I was at work, she literally got nowhere.
They were a few reasons for it.
The first one was always the fact that M is a woman and unfortunately, the reality is that male doctors don’t treat women fairly.
Since they will never experience menstruation, they have no clue how it feels (myself included).
Many of them say that period should be painful and cramping with ovulation is normal. They don’t learn often about endometriosis because it’s “a female problem “.
The second reason for talking to doctors together is the fact, that if a stressed woman visits them alone, they blame her symptoms on anxiety.
Both reasons made me so angry, I wanted to put the end to it. I took time off to accompany my wife on her next visit.
Just my presence changed things dramatically, and when I spoke my mind, confirming my wife’s symptoms, it was a game-changer!
Men take other men more seriously than women, that’s a sad reality.
I went through this process enough times to tell you it’s true.
I was present at my wife’s hospitals and GP’s appointments, even took my own initiative to call her work manager to organize her Occupational Health care at the workplace.
So gents, my advice for you is this:
Don’t sit in the waiting room or stay silent during medical appointments. Talk to the clinician explaining your partner’s struggles, and organize the plan of care together.
The time with the physician is limited, so it is helpful to write a list of questions and concerns together before you get to the medical appointment.
Listen and share time together.
Not sure what to say to your suffering spouse? No problem! Simply reassure your partner that you love and support her/him.
Listen if your spouse wants to talk. I’ve made a mistake in the past trying to put a word in with my “ideas of how to fix things”, but that meant to her that I wasn’t listening at all.
Well, I was, but you get the picture. Someone is genuinely trying to tell you how they feel and you interrupt them…
And don’t forget to simply spend quiet time together.
If possible, keep sharing routines that have been part of your life together — for us, it’s Latin-Ballroom dancing. For you, it might be TV, a cinema movie and popcorn, or coffee (it’s our thing too, she’s Italian).
Prioritize your own opinion and questions.
Remember, your relationship consists of two people, not one.
If you don’t take care of yourself you will not be able to help your partner. This is how it is. Think of a plane.
Whenever a flight attendant shows the “boring” sequence of events in case something happens during the flight, they stress putting their own mask first.
If you don’t do that, you may lose consciousness and be no help to others.
This simple example shows the importance of taking care of own needs before others. Practice self-care care whenever you can.
Sure, but the most important one is your loved one but you cannot neglect your feelings either.
Coping with caring for an ill spouse isn’t easy. You need to take care of your needs too.
That also relates to doctor’s appointments. You can with your partner, or even separately, book your own appointment to discuss with the doctor ways of coping.
They may also advise, and help you organize a therapist for your loved one to help them cope as well as for yourself.
I’m an optimist. An optimist to the point that my wife used to be fed up with my never-ending happiness.
I kept telling her when she felt most fed up and sad that everything will be ok, because… adding my a list of reasons why.
Even though she used to tell me to shut it, in the end, she was very grateful for not giving up on her to make her smile.
Chronic illness changes people. Not only mentally, emotionally, and psychologically.
Any medical diagnosis can lead to changes in your spouse’s diet, physical activity level, adding or taking away medication, and a need for more rest.
My wife’s endometriosis and fibromyalgia cause her extreme fatigue on their own, she’s not on any meds, and yet, chronically fatigued.
I have to sometimes remind her of things as her fibro-fog makes her dozy.
Your support and encouragement can help your partner stay on track, but nevertheless, this new role can also trigger a lot of frustrations for you too.
When your partner feels stressed, you might want to move away but you should stick around and help.
Remember, that you can always rest after but your loved one is exhausted at that moment and needs your support.
After they recover from fatigue, our partners appreciate our efforts. Even if they don’t say it out loud, they really do!
Don’t be a hero, believe me, I tried.
I’m a physically fit, the mentally strong, optimistic young man (ehm… 41), but even I needed a break and had to ask for help.
This is when mothers-in-law come in handy. Contrary to the stereotype, I’m lucky to really like her.
But let’s talk about you bud!
You need to lighten your load so you can focus on your ill spouse and get needed rest and support for yourself.
You’re not unbreakable. You’re human, and there’s no shame in asking for help.
Being a care partner can leave you feeling very overwhelmed. When coping with caring for an ill spouse you may experience:
This is a normal reaction. Because you too, as well as your loved one, experience a loss of “good old life”.
Don’t let this discourage you from loving and supporting your partner.
It will bring you much closer, closer than any other couple. Your intimacy will grow.
You will begin to appreciate these little things that other people never take notice of. Like a singing bird, walk in the woods, a moment with a nice cuppa coffee.
Your gratitude towards what you have will grow. You will become wiser, more careful, yet more adventurous.
You see, people make a mistake rushing through life. They take things for granted.
They stress over working hard to earn “valuable” in their eyes things, to impress people they don’t even like. It’s a rat race out there. But they miss on the crucial thing – living!
Live life like there’s no tomorrow because there isn’t one.
We only have so much time here. Let’s use it to love and help each other.
Just because your partner has a chronic illness, it doesn’t mean your lives are over!
You set your goals. Even though for people like us it might take a little bit longer to get there, but when we do, we appreciate it more.
I hope you found some peace of mind in this post. Coping with caring for an ill spouse can be challenging, but it also brings joy and happiness.
Don’t let your partner’s illness discourage you both from living. Love living life!
Hi, I’m Lucjan! The reason why I decided to create this blog was my beautiful wife, who experienced a lot of pain in life, but also the lack of information about endometriosis and fibromyalgia for men…