Author: Suzanne Marriott

Suzanne promotes caregiving as a transformational journey.

Dreams of Loss

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Sometimes dreams guide us and sometimes they foretell things, maybe things we would rather not face. I’m including a selection from my upcoming memoir, Watching for Dragonflies, that speaks to this.

Dreams of Loss

More than once, in these summer months after his collapse, Michael asks, “What is happening to me?” It’s more a bewildered lament than a question.

As his legs stubbornly refuse to respond to his will, he begins to feel that his body has betrayed him. He can no longer control it; he is no longer himself, and his image of his old self is inexorably slipping away. 

Our growing anxiety continues to be echoed in our dreams. In a recent one of Michael’s, he’s driving a big truck down the highway when suddenly he loses control and panics; the truck veers sharply out of its lane. He is terrified. 

In one of my own, I witness a showdown. We are somewhere in the Wild West. Michael appears youthful, in jeans and a plaid cotton shirt. We want to go through a gate in a fence, but a huge, intimidating animal bars our path. It looks like a kangaroo with a seal’s head, and, as Michael attempts to pass, it continues to threaten him. He’s afraid, but he confronts this unnatural-looking animal, refusing to flee. I can see his body begin to shake, and he finally decides to turn back. I, in turn, am left to wonder whether I have the strength and courage to face down this beast by myself.

Questions and Mood Swings

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Photo by Evan Dennis on Unsplash

What follows is taken from my memoir, Watching for Dragonflies: A Caregiver’s Transformative Journey. I was learning how to be a caregiver for my husband, Michael, who experienced inexplicable mood swings as he wrestled with multiple sclerosis.  Perhaps other caregivers face similar situations and questions as they struggle to learn their new roles.

I’m surprised that Michael is often irritated and angry, most often with me. He is sometimes so angry that I’m afraid he will turn against me. I struggle to distinguish between what is acceptable and what is abusive. Because Michael has MS, am I supposed to take his verbal attacks in stride? People are always telling me to take care of myself or else I won’t be able to take care of Michael. Does “taking care of myself” mean drawing clearer boundaries and letting him know what actions I will not accept? What does “will not accept” mean? Would I ever leave him? How do I draw boundaries, and how do I enforce them? 

Sometimes I feel exploited and unappreciated. I wonder just what he expects me to do and what I should expect from him in return. Other times, I reproach myself for not loving unconditionally. I feel I need to be there for him no matter what, and that I’m supposed to do this selflessly. I often feel I’m at war with myself.

Being Michael’s caregiver is new for me, and being someone who needs care is new for Michael. I guess it’s going to take some time for us both to adjust to these new roles. Michael will need to give up some control—of his situation and of me—in order to let me do things for him that he can no longer do. I know this will be hard for him, but we will need to learn to work together if we are to meet the challenges of this disease. I hope we can.

And, eventually, we did.

Self-Love

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Photo by Bart LaRue

Often when we think of love, we focus on our love for others. Especially, if we are a caregiver, we focus on our love for the person for whom we are caring. Yet, how much more love we have to give if we remember to love ourselves, too. I don’t mean we should have a narcissistic love where we put ourselves and our needs above all else. I do mean that we would be a better caregiver, and a better person, if we remembered to love ourselves, to show compassion for ourselves.

The ancient Greeks spoke of several types of love. One was philautia, or love of the self. According to Roman Krznaric, in his article in the December 2013 edition of Yes!magazine: “The idea was that if you like yourself and feel secure in yourself, you will have plenty of love to give others (as is reflected in the Buddhist-inspired concept of “self-compassion”). Or, as Aristotle put it, “All friendly feelings for others are an extension of a man’s feelings for himself.””

I know in caregiving for my husband, Michael, I often felt guilty if I took time to show myself some self-love. Gradually, however, I found that when I did, I had more love and energy to give to Michael. Some of what I did was just small stuff. For example, during Michael’s frequent stays in the hospital, when I could take a break from being at his bedside, I would go to the cafeteria and relax with a latté. My decaf, soy latté became my reward. I might have only ten or fifteen minutes for myself, but those few minutes were enough to recharge my batteries. 

Occasionally when Michael was able to be home alone, I would spend time with a friend, going to a movie or taking a walk. Sure, Michael felt some resentment, but he came to realize that these times were important to me and beneficial to him, too. Gradually, I learned not to feel guilty for these taking-care-of-myself times. I always made sure he was covered and that he could reach me by phone at any time. That freed me to have some time for myself.

I believe love and compassion aren’t just for others, they’re for ourselves, too. We do our due diligence as a caregiver; we need to be a care-receiver, too.

Planning for Your Own Future Care

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I was in a MS Society support group for people with loved ones diagnosed with MS. One of the things we learned was how important it is for spouses to have a plan for their long-term care. Because our spouses may not be there for us when we’ll need care, we must look to the future and be sure we’ll have the support we may need.

My focus was so fine-tuned on my husband’s needs, I would never have thought of this on my own. But I realized I needed to be compassionate for myself as well as for my husband. Overcoming my aversion to even considering that he might die and leave me alone, I decided to heed the advice we’d been given. I was fortunate that I was able to take out long-term care insurance early on, before it became prohibitively expensive. My policy provides for in-home care as well as assisted living and nursing home coverage. Today, however, these insurance companies are having difficulty making a profit and some have left the market. Qualifying for care is a problem, also, if you have an existing medical condition. Still, it may be worth investigating this option.

But long-term care insurance is not the only way to pay for your future care. Below are some other options. 

  • Pay with Your Own Funds. This is what most people do, at least for as long as funds last. If you can set aside a substantial amount of money for this every month, you may be able to pay as you go, at least for a while. Yet, as you may already know if you’ve researched care options for your spouse, private care can be very expensive, often more than $26/hour. Assisted living facilities can run between $2,800 to $4,500 a month or more. Skilled nursing facilities are even more expensive, averaging around $8,000 a month. If you’re paying with your own funds, you’d probably run out of money before then. 

When my father was disabled, I had to spend down his money in order to give him the care he needed. That led me to enroll him in the next option as a last resort. 

  • Medicaid or, in California, Medi-Cal. This is a joint federal and state program that helps with medical costs for people with limited income. Unlike Medicare, it pays for nursing home care and personal services. It will not pay for the costs of assisted living facilities. Limited funds are available for in-home care. It’s a complicated procedure to qualify for Medicare or Medi-Cal, but in the end, it may be your best choice. If you think you may need this, start keeping track of your care expenditures early. More information on that can be found at https://www.medicaid.govand https://www.coveredca.com/medi-cal/

Whatever you do, remember to have compassion for yourself as well as for your loved-one. Often, we’re so absorbed in being a caregiver that we forget to care for ourselves. Please don’t let that happen.