A Caregiver's Perspective: Dealing with Loss

During my nursing training, I was introduced to Dr. Elizabeth Kubler-Ross’ five stages of grief and loss related to helping patients and their families as they experienced dying and the loss of a loved one. Since that time, I’ve come to realize that those five stages of grief are not exclusive to death and dying. We experience the same emotions whenever there is a significant loss, including the loss of what “should” be.

I would suggest that most of us think of our life span in stages:

Stage 1 Preparation for Life:  Being born, the preschool years, completing K-12, college or career training

Stage 2 The Productive Years:  Finding a mate, starting a career, having a family, settling into a pattern of living.

Stage 3 The Plateau Years:  Instead of struggling up the hill to acquire and achieve more, you start to live out the life you have chosen with marginal ups and downs, some crisis, but you know what you have planned your life to be like and you’re living it.

Stage 4 The Declining Years: Children grown; maybe starting their own families. You are not still trying to build a career but are instead reaping the seeds you have sown so your push forward and upward is declining and now you’re settled and taking it easy. Probably having more aches and pains and the development of some chronic conditions has likely happened as age wears away at muscles, joints, energy, and memory.

That’s our expectation for how life should go. Then somewhere in your productive years, you start noticing that something is just not right with your spouse. He’s getting tired more often. He’s having more difficulty with activities. First, he goes to the doctor for this and then for that…he gets better but it comes back…and you start to wonder what’s happening. Then someone mentions Multiple Sclerosis. You dismiss that notion because it just can’t be true. He’s fine. He’s able to _____(fill in the blank depending on what you have seen of people before with MS). He’s young. He’s strong. He’s healthy….They are wrong. I won’t let it be true.

So you go look for “someone who knows what they are doing” and get referred to a neuro-someone—neurologist, neurosurgeon, neuro-ophthalmologist, or maybe a physical medicine/rehabilitation specialist.  Someone orders an MRI, a lumbar puncture is performed, and blood is drawn. Then you get the call, “your husband has MS,” and your blood turns to ice. No, it can’t be. They must be wrong. We have children to raise. I have a career. What if he can’t walk? How will I do this along (having already put in into the ‘disable’ category? What does this mean for us...for me?

And, just like that; you’re been thrown head first into the spiraling stages of grief and loss...only you’re not the one who has the condition causing the loss; you’re the one who is supposed to be understanding, supportive and their “rock” to hold onto while they go through their emotional crisis. But, when you’re married and your spouse has MS, he’s not the only one with MS; you have it too, by proxy. So the shock, disbelief, denial that happens with him also happens to you.

There are a few ways I’ve seen family members deal with the initial stages of loss associated with MS. My husband refused to “name it” or “claim it.”  He felt that if he didn’t accept the diagnosis then he would not live his life as if he had the condition and through sheer will-power he would keep the condition at bay. He would, therefore, not talk about; not read about it; leave the room when it was mentioned and change the subject if it was brought up. Fine for him, but someone needed to know what to expect and what needed to be done to keep him as safe and healthy as possible, so while he went into denial; I was forced to go “undercover” to find out what we needed to know to make the right decisions about medications and treatment options. I would look up information on the internet, read brochures, and talk to friends who had family members with MS but have to shut down the computer, change the subject, or stash the brochure if he came near….and I resented having to do that.

I needed to talk. I was afraid. I had never been around someone with MS. I knew very little about what to expect. I needed to know he was going to be able to handle this. I needed to know how I was going to handle this. I wanted answers and he wanted to hide. I was trying to find out information on my own and he would get angry that I had left a piece of information out where he might see it. It was a dark time where we had this huge elephant in the room that had us slammed against the wall yet we were ignoring it was there. Not only would he not talk to me about it but he tried to keep it from his son. He didn’t want to tell his son who was a pre-teen at the time; however, everyone else in the family, his son included, had expected that he had MS all along. So for all the rest of us, we just wanted to talk it through and reassure each other and he was closing that door for us. The rest of us HAD to talk it though so we would gather far from him and talk about it and we all just waited for him to open the door.

I finally started seeing him occasionally on the internet researching information. He started talking on occasion to others about what he had. He would comment on something he had heard and that would open the door to letting me in. It was a difficult time to wait until he was ready to talk. It’s still difficult for him to accept that he will likely not drive again and not be able to finish the house he started to build with his own hands. The fact is these stages of grief never go away. It’s not like you can say, “I’ve gotten through denial now; on to anger.” You constantly are re-working the stages; going back over old territory as new issues come to light. You don’t go through the stages of grief and come out on the other end; it’s more like it becomes a part of you that lingers and shifts putting emphasis on whatever aspect of it you need at the time you need it…sort of like an old shoe. And though we deny it’s there, we trip over it now and again as a reminder that the shoe is still with us so we need to look at where are.

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