When Did I Become A Caregiver?

By Gary Chester

2 min read

In the three decades of my marriage to Cathy Chester, an award-winning healthcare blogger and MultipleSclerosis.net contributor, there have been times when I had to increase my role as a husband due to her moderately-controlled MS and other health issues. During these periods, I have simply done what is necessary and looked at it as part of my role of a supportive spouse.

I didn't feel like a "caretaker"

When it was suggested that I contribute to MultipleSclerosis.net as a “caretaker,” it struck me as odd. I am not a caretaker. I don’t render any medical assistance to my spouse. It is a matter of taking on additional roles such as grocery shopping, cooking and doing laundry when Cathy does not have the energy to do those tasks.

A caretaker is one who helps people stand, dress, walk and engage in everyday activities. They feed those who are unable to feed themselves. They inject medications into people. They are healthcare professionals.

A much broader definition

As it turns out, caretaker has a much broader meaning than one might imagine.

Although some sources define caretaker as one who is employed to render care and support to others, some authorities exclude the employment requirement. According to Merriam-Webster, caretaker means “one that gives physical or emotional support.” Well, if that is the case, most of us are caretakers of a spouse or a child.

The Cambridge English Dictionary offers this nugget: a caretaker can also be a caregiver. Okay, so the proper label is caregiver. If offering support, both physical and emotional, to a disabled spouse makes me a caregiver, I’m okay with that.

The label doesn't matter, the care does

Frankly, it’s not the label that is important. Caretaker, caregiver, health partner. The label is not important, it’s the “care” that matters. The disabled community needs to know that they have a team of people who care – both inside and outside of the household. Since our medical resources are becoming increasingly more taxed as our population ages, the care that begins at home is essential.

The core of caregiving is emotional. Listening to one with a serious medical condition and offering help is important to the patient’s mental and emotional well-being. And we all know that the mind-body connection is a component of so many medical conditions. Those who are disabled do not want to be undervalued or forgotten and it is the primary focus of anyone who cares to show that they are recognized and valued.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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mario-lobo Member
Dear Gary. First of all, Cathy is lucky to have you. You're a good man and great husband. I think you're right about what caregiving is all about. And as you phrase it, a key component is " to show that they (the recipient of the care) are recognized and valued". So I can see the difficulty in differentiating between the roles of "caregiver" and "good spouse". Yet, at a certain point, as the caregiving role expands, it becomes less "something that a good spouse does" and more the major defining factor in the caregiver's life. This happens if and when the needs of your spouse reach a tipping point of interference with what was your "normal" life. It may start when you're no longer able to do a certain type of recreational traveling and vacationing together. While that's inconvenient and disappointing, it's not necessarily life altering. That kind of sacrifice isn't such a tremendous burden. But as your spouse's condition deteriorates, and her needs grow, the impact that it has on your life expands, and over a period of time, your main role in life evolves to become that of a caregiver, and your main challenge in life is trying to fit in so many other things that you took for granted around the caregiving. This includes things such as: Being able to hold down your job - not easy when you're frequently called away to attend your spouse's needs, Maintaining friendships - when you're main focus is on caring for your spouse, your friendships invariably suffer and some former "friends" can't deal with the new reality, Finding time to just relax - as you have no control over when your spouse needs you to do something, finding time to relax is often impossible. And if your spouse has cognitive issues, you may also lose much of the peer to peer relationship you once had and took for granted, and your relationship becomes asymetrical, with you responsible for just about everything. Depending on the specifics of the situation, caregiving can occupy most of your waking hours. It can be physically exhausting, isolating and emotionally draining. And when you're not actually doing "active caregiving", you're worrying about what's next, because there's always something next, and it's almost never good. When it reaches that point, you realize that the word CAREGIVER defines you - everthing else is secondary. Fortunately, many people with MS never reach the point that they require such sacrifices from their caregivers, be they spouses, children, parents or friends. Thank you for the thought provoking post. Mario Lobo
Gary Chester Member
Mario, Thank you for your thoughtful comment. I couldn't put it better myself; what you have described is a fear that all of us have with this unpredictable disease. It is the hope of every spouse and every patient that the ever-increasing therapeutic options or just plain luck prevails and the challenges you have articulated are minimal. They are not minimal for many. But big or small, many diseases pose challenges that not everyone is equipped to face. Hopefully, the posts and the discussions on this site - the sharing of common feelings, concerns and information - provide insight and comfort.
teddys Member
Hi Gary, I wanted to reply to your post here because your wife was among the many fine people who contribute to this site that had very kind words and thoughts for me while my late fiancee, Tracey, was in her final days. When I first met Tracey, she was in a wheelchair, and suffered from bladder incontinence. But she was very self-sufficient. Over the first 5 years, we did all those things a happy, committed couple would normally do. I learned to help her do things that were difficult for her to do by herself. As a person with a disability myself, I knew when to offer my help and when to stand back and let her figure things out. I got used to helping her change her diapers and dress and bathe, and everything else that gradually became very hard for her to do herself. I can say the exact day I became a caregiver: July 15, 2011. This was the day she came home from the hospital after 6 weeks of trying to stabilize five stage 4 bedsores. Though she now had a visiting nurse and a 40 hour a week attendant. I learned how to change wound dressings and deal with blocked catheters, and how to change them. How to quickly lower her body temperature during the chronic UTIs. I had to learn it all and be prepared to do it, because attendants and nurses are not 100% reliable. She went from a healthy 135 lbs. to 75 lbs. during this time, and because of that, and the advancing MS, no longer had the strength to do anything for herself. She was now fully dependent on others, especially me. Our situation brought us closer together, with our love growing stronger and stronger. I was ready for whatever MS delivered next, or at least I thought I was. Looking back, I was not prepared for the dementia, although her dementia was not angry and mean spirited, as I have heard it can be. I was lucky that way, but it was still frustrating to deal with, and I probably could have done a better job with it. Thank Cathy for me on her kind words and thoughts those many months ago. I wish you two the best of luck going forward
1. Gary Chester Member
 Teddy, Thank you for sharing your remarkable story. I can relate to the personal bond, though not the depth of your joint challenge. Tracey was very fortunate to have your support and comfort and I do think that what we gain is a gratification from greatly supporting someone we love; what can be more important than that? Will pass your thoughts along.
jlnewport Member
I had 3 decades with my husband when I was diagnosed. He stuck around for 4 years and then left. First emotionally then physically telling me he "couldn't deal with my MS anymore". So when I read stories like yours I'm very encouraged that there are spouses that do care, making you a caregiver. Honestly, it makes me a bit jealous too. Why does one spouse stay and another leaves? I wish I had the answer to that. Thank you for writing.
1. Gary Chester Member
 Julie, Thank you for contributing to the dialogue and for sharing your personal story. In some cases, though apparently not yours given the 30 years of marriage, there may be an underlying instability in the marriage that manifests when one spouse becomes ill. In addition, some people have a very hard time dealing with anyone's illness. My father's first cousin lost his spouse and my parents were very supportive. Later, when my father became ill and died, his cousin was nowhere to be found - he was always too weak (childlike?) to handle any sort of adversity. I suspect that you are simply a much stronger person than your ex-husband. Hope you are doing well.