Thoughts on Being a Caregiver (originally posted 11-28-2005)

Today's entry is written by my husband:



Thoughts on being a caregiver to a spouse / partner who has Lupus


My wife was diagnosed with Systemic Lupus in 2003. She has been ill since 2001. She recently approached me and asked if I would write some thoughts down regarding my experiences as a Caretaker.

My hope is that someone reading this might be able to garner some ideas for themselves. At the very least, I hope that you can relate to some of the experiences I share so that you don’t feel that you are embarking on this journey alone.

I am not an expert on Lupus. I am also not an expert “Caretaker” or “Super Husband”. Some days I do well, some days I don’t. At times I take pride in being a good husband and caretaker, while other days I fail spectacularly. If you’re reading this, I suspect that you fall into this all too human category.

I can’t offer you the “10 easy steps of being a caretaker”. There’s no easy cookbook or guide. Rather, I’d just like to share what I’ve come up with. Here’s hoping that it helps.

1. LUPUS CHANGES EVERYTHING

I remember reading a book by Scott Peck, entitled “The Road Less Traveled”. The first sentence of the book says –“Life is hard.” If he had written a book about Lupus, he might have said it twice.

Lupus changes everything. Her life and yours has just become hard (or harder).

And don’t most of us (including me) kick and scream when life as we know it gets turned upside down.

Consider this example: I remember when I became a dad. It felt like, one minute, my wife and I were a happy go lucky couple. Suddenly, we two became a trio. I became a dad. It was a wonderful (and frightening) revelation when it hit me that I will be a dad forever. In other words, my former life as I knew it had passed away, never to return. I was a dad. I will always be a dad.

I don’t know what your life withyour wife, girlfriend, or partner was like before Lupus. We had a very full, frantic, yet fun life (emphasis on the word “fun”).

We met doing theater.

We continued to do theater together when we were engaged and after we married.

My wife worked full time, eventually decided to pursue a Master’s Degree, and also held down several positions as a professional church musician.

Despite her many responsibilities, she found time to dote on me.

Looking back, I was fairly spoiled.

She gave me an enormous amount of affection, time, and emotional re-assurance.

I was a loving husband.

I worked an extra job so that we could afford to go on vacations (sometimes several) during each year. We went to Disney World at least five different times.

But Lupus changes everything. And how you choose to accept this truth may determine how well you and your partner will adapt to this new life.

Scott Peck was correct – life is hard. However, most of us don’t get into trouble because we believe that “life is hard”.

Most of us get into trouble because we believe –

“Hey! My life isn’t supposed to be hard! My life is supposed to be easy!”

We struggle, we get angry, we feel “entitled” to an easier life, feel that “it isn’t fair”. We get angry, we get impatient, we get (fill in the blank).

In short, we make more misery for ourselves and others when we invest countless hours of energy in the “My life isn’t supposed to be like this” temper tantrum.

However, if we can truly accept that “Life is hard” (or in our case, that “Lupus is hard”), then we can make an accommodation with it. When we accept that this is supposed to be difficult, we transcend it. It becomes a part of our life.

In reading over these words, I realize that I am making this process of acceptance sound easy. It isn’t. The arrival of lupus in our life was an event. The acceptance of Lupus as a part of our life has been a process. A process with many ups and downs. You can easily compare this process to the grief process – whenever we lose that which is dear, we go through many stages toward acceptance. There is denial, anger, fear, bargaining, and finally some form of acceptance. Often we can go through this process many, many times. I have witnessed my wife’s grief process. There are times, for example, when I believe that she has acclimated herself to no longer working. Then one day, she cleans out our spare bedroom. She unpacks a box that contains some belongings from her office. Some times it’s only a few seconds worth of mementos that can bring the grief right up to the surface again.

I too can easily have this experience. It can be something as simple as looking at old vacation photos. There’s my wife, sitting in the sun on the beach. She looks happy, tanned, and fit. Then I am recalled to our present circumstances – my wife can no longer sit in direct sunlight, as it makes her ill. My wife can no longer “boogie board” at the beach. A simple date to the movies can now be difficult to coordinate. Our life has new boundaries.

Whatever losses you and your partner have endured due to Lupus can have a profound ability to stir up a whirl of emotions. In order to transcend these emotions, you must express them and let them out. It’s perfectly normal to feel sad, scared, and very sorry that your loved one feels ill a lot of the time. It’s also normal to feel sorry for yourself, for this to feel unfair, etc. Trust me – I’ve felt a lot of messy and uncomfortable emotions. In order to work through them, you have to acknowledge and dive into them. Think of your emotions as the “doorway” in working towards acceptance. Doorways, by their definition, are things to pass through. The last thing you or your loved one needs, however, is for either of you to get stuck in the process of feeling angry, hurt, and resentful, etc. To paraphrase an old Samurai maxim: “Learn to manage your emotions so that your emotions don’t manage you”.

It took me several years to really accept that “life had changed as we know it”. There are days when I still struggle against it. I will say, however, that when I finally accepted that “Life has changed forever”, my own personal suffering decreased significantly. And it bears mentioning that you will also help to decrease your partner’s suffering by accepting and helping her to accept that life has changed forever. When we truly accept that our loved one has a chronic medical condition, we adjust not only our behavior, but our expectations.

Lupus is not only hard; it is downright frightening and heartbreaking. Over the last 4-5 years, I have watched as my wife has had to give up many things that she loved about her life and ours. She has retired from three professions (teaching, social work, and musician). She can no longer drive a car. My wife loves to read, and there have been times during the course of her illness where reading is impossible. I could list pages and pages of things like this (as I’m sure that you could).

Lupus changes everything, but not all of this change is necessarily bad.

I realize that I have grown as a man, as a father, and as a husband as a result of the Lupus that my wife and I live with.

· I am more mindful of the simple things that my wife, my son and I do together.
· I am more sensitive to their needs. I am less selfish.
· I am more responsible. I love it that my wife and son can depend upon me to take care of them.
· I have become much better at taking care of myself too.

There are many more things that I would like to share and tell you. Right now, however, I have a six year old son of mine that needs my attention! He has been sitting her patiently waiting for me to finish this entry so that we can play “Final Fantasy IX”. I’ll write more later.

Peace

Special Thanks to my Hubby for this contribution.

Loretta

6 COMMENTS:

At 8:14 PM,  kitty said...

Thank you for your thoughts. It really made me put things more in perspective about my own life. I wish you both well and will visit your blog again. - Kitty  

At 10:31 PM,  LuAnne said...

As I read your hubby's words it, once again, has made me realize how lucky we are. My hubby is a gem. He has learned to go wit the flow. He has stepped up to the plate. This illness we have has brought us so much closer. I can rely on him. I know this deep down in my soul and heart. He, like your hubby, is a keeper. Hugs, LuAnne  

At 9:37 AM,  Magogo's Musings, too said...

Loretta-I am glad to have re-found you! Your husband's words are poinant and written from his own pain and growth. Please thank him. Margo  

At 12:44 PM,  Water Tiger said...

Thanks everyone, for your kind words. Hubby really wrote from the heart. I just copied your comments and forwarded them to him. He will be writing more in the coming weeks. :)  

At 1:55 PM,  Matkaja said...

Oh what a gem of a post as well as a gem of a man! Please thank him from the bottom of my heart for taking the time to write such helpful words to newbie hubbies along this difficult path. He may never know how many Lupies have printed this out, or e-mailed his blog entry and begged their significant others to read his words of wisdom. Mine had me fooled. I thought he got it. He is deep in denial. his mom died of MS, so how could he NOT understand? The defenses are strong. I am sooo lonely in my brain, waiting for him to catch up with my reality. I cannot be the person he thinks I am; the person I want to be for him. It is a long process. It would be easier if we were on the road together, holding hands. Thank you for trying to help.  

At 11:52 AM,  Water Tiger said...

(((((Hilja))))) e-mail response