How being a caregiving spouse affects you? Taking care of a chronically ill partner.

How being a caregiving spouse affects you?

I’m the husband of a chronically ill woman who suffers from deep infiltrating endometriosis and fibromyalgia. Everyone always asks me what these illnesses are, and feeling sorry for her, no one is ever interested in how I feel. Sometimes I would just like to hear, how am I? How being a caregiving spouse affects you?

The number of spousal caregivers is constantly growing, to be exact, as nearly 22% of family members become carers for their chronically ill, disabled, or aged partner, however, no one ever talks about family caregivers and rarely you can find blogs teaching people how it is to be coping for an ill spouse.

My wife suffers from multimorbidity, which means that she has more than one condition. Managing endometriosis is really hard on its own, let alone having to deal with fibromyalgia.

The pain, fatigue, anxiety, and depression caused by these disorders are extremely difficult to deal with on a daily basis. Sure, it is a full-time job for those who suffer, but for every woman suffering from these conditions, there is an army of men who support them.

So, how being a caregiving spouse affects you?

Here’s the answer:

It can be really challenging for spousal caregivers to cope with their partner’s physical struggles, their mood, and the financial pressure they are in. Caregiving for a spouse causes plenty of social, financial, emotional, and physical issues. Society expects caregivers to deliver and provide help, assuming that chronically ill people are the priority.

Marriage isn’t always easy when you add caregiving responsibilities. It can affect your marriage, and the pressure you’re under puts a strain on your relationship, causing frustration, anger, resentment, fatigue, stress, and ultimately – caregiver burnout.

Emotional impact.

Being a caregiver for your loved one in any relationship can be emotionally draining, however, when you’re married, it puts more pressure because you feel responsible for your partner.

In sickness and in health is what keeps me going, but what about you? How being a caregiving spouse affects you?

For me, handling a range of emotions that are caused by my need to care for my lovely wife can be truly draining. 

While many people who suffer from debilitating effects of chronic disorders such as endometriosis and fibromyalgia, also suffer from anxiety over the unknown future and from depression over the loss of old life. 

Research has shown that spousal caregivers like myself may be likely to experience depression as well, however, with an even higher rate than those for whom we care.

Such depression can be caused by a variety of emotional struggles. 

Our suffering partners may no longer have the ability to be physically engaging in traditional intimacy, which leaves us – spousal caregivers feeling as though we have lost the wife (or the husband) that we once knew so well. 

My wife asked me to divorce her on four occasions, but I refused every time… 

Yes, it made me feel proud, but at the same time, I couldn’t help but imagine, how it would be to feel free from my caregiving responsibilities. So, aside from feeling proud, I felt guilty over even trying to imagine how would that make me feel.

Many times, caregivers may feel as they’re adjusting to taking care of an entirely different person, and my wife said it about herself too, because she realized that apart from her, I should be mourning over the loss of my previous life.

While caregivers may feel guilty for these emotions, they are completely normal.

Physical impact.

Naturally, emotional strain can have an impact on your physical well-being. It happened to me too.

Excess stress can lead to poor sleep, increased blood pressure, weight gain, or loss. I stopped exercising despite my love for gym workouts, in order to be with my wife.

As the need for your partner is understandable when you feel bad enough when you’re not able to get out of bed, when you are able to take care of yourself on a good day, you shouldn’t ask your partner to do the things you are able to do.

Aside from physical conditions that can negatively affect a caregiver’s health, physical challenges may present themselves in other forms too. 

For example, wives may have problems physically helping their husbands move around the home due to a difference in weight and size, but husbands may find that their own physical conditions make it difficult for them to help their wives with mobility. It goes both ways.

To help work around these physical challenges, it may be helpful to seek assistance from a home care agency.

Aside from being a spousal caregiver, I’m a professional caregiver too. I do it for the job. I know that physically able friends and family, or assistive devices like hoists, hospital beds, motorized wheelchairs, or walkers can help reduce some of the physical strain. 

I always felt guilty calling myself a spousal caregiver because of the fact that my wife isn’t disabled enough not to do things for herself.

However, recently I had a meeting with my employer’s medical team. I spoke to one of the nurses in my team wh explained that actually, I am a caregiver 24/7.

I stopped my beloved gym workouts, I also feel drained because of my emotional load. Spousal caregiving affects me physically.

Social impact. 

How being a caregiving spouse affects you socially?

Well, when my wife began to require to work from home and has more need for care due to the effects of endometriosis, fibromyalgia, and her mental impact that goes along with these conditions, the dynamics of our marriage changed significantly. 

We used to dance professionally. The vast majority (99%) of our friends are dancers. My wife used to dance for the job, I used to assist her in teaching. We performed together earning a dough. However, all of this ended when my wife became ill.

We had to stay home for years to come, we had to put a pause on dancing, she has lost her job as a teacher and performer. Not only did this impact us financially and emotionally, but the social impact was also clear…

We found ourselves in a difficult situation, we realized who our true friends are. Out of hundreds of people we knew, only a handful stayed true friends to us.

We used to go out with our dance crew, after each performance, class, or social event. We enjoyed our time together. After my wife became ill, we’ve lost it all. Only one person from the entire dance team stayed a true friend till today.

So, as you can see, favorite pastimes such as travel or meeting friends for dinner may become more difficult and require you as the caregiver to choose between abandoning some of your old habits or modifying them to allow the care for your spouse. The same goes for work.

Many times I had to choose between work and caring for my wife. Actually, I am writing this very post as I stayed for the second day to support my wife emotionally.

She felt extremely depressed lately realizing that her endometriosis symptoms began to gradually come back.

It impacts her mental state every time she has a bad flare-up. I always find myself battling between work, finances, and my wife’s care. I always choose the right thing – my wife!

Financial impact.

How being a caregiving spouse affects you?

All caregivers who experience elevated levels of stress are at an increased risk for physical and emotional issues, however, like I mentioned before, caregivers are heavily impacted financially.

My wife’s illnesses caused her to leave her dream job as a dance teacher-performer, and she began to work part-time as a health care secretary.

That alone lessen our income, not to mention the time off I had to take when M needed me the most.

There were times when I had to take two months straight of work in order to take care of my wife. It affected our income further. I could only take so much of holiday pay, the rest, I had to somehow save with my wife.

We were forced by our situation to move back to live with her parents. Luckily, the house is big and we live on the first floor above them, however, we were still impacted by financial loss.

It wasn’t easy, it cost us some disagreements and frustrations, even though no one was to blame.

Luckily, we live in the United Kingdom where paying national insurance on a monthly basis gives us access to “free” healthcare.

I cannot imagine how it is in other countries, especially in the United States, where women who suffer from endometriosis have to pay a lot of money for their treatment.

Additionally, we have no kids, endometriosis did not allow us to have them. Again, financial strain must be even bigger for people who have kids and live in countries without “free” healthcare.

There is plenty of limitations due to the expenses which caregivers and their partners have, because of the risk that comes with losing, or cutting on work in order to prioritize the health of a chronically ill spouse. There is a lot of financial consequences.

So, How being a caregiving spouse affects you?

Caregiving to a partner is tough, but when it is your wife that you vowed “in sickness and in health”, you feel responsible for her wellbeing.

Even the strongest of marriages can be put to the test as you get older. My one definitely was. Fast-forward 14 years, we have succeeded in making it work.

There will be plenty of usual challenges that come with caregiving responsibilities when your partner is in need.

This change can impact your marriage in ways such as a financial burden, time spent together as a couple, causing frustration, resentment, and fatigue, not to mention anger, tension, and conflict.

As a caregiving spouse, you may feel very isolated from friends and sometimes even from your partner. You may feel tremendous guilt about your own needs that aren’t being met.

There can also be a sense of loss of your partner’s happiness, which impacts your own.

All caregivers who experience elevated levels of stress are at an increased risk for physical and emotional issues.

But you always need to remember to take care of your own health before anything else. Remember, that if you don’t help yourself first, you won’t be able to help your loving partner.

The message for those who are on the receiving side of chronic illness is, that your caregiver will be in better hands if he’s healthy.

You have to try and take any tasks that aren’t important away from him, so he can have time for himself, recharge batteries, to practice self-care. Remember, that it isn’t all about you, You both are in this together.

Take care of one another!