Tag: Caregiving

Sometime Around 2 A.M.

By Mark E. Smith

I don’t know what time it is? I guess it’s sometime around 2 a.m. It was mere weeks ago that I could simply roll over or sit up and look at the clock. Not anymore.

I awake several times per night like this now, in pain from not being able to roll or shift positions myself. I lay awake until the pain is unbearable, then I wake my wife. Sweetie, can you please roll me over?

Age, disability, illness and surgery has all taken its toll – and much of my physical abilities and health with it.
I suppose I should be devastated, even bitter toward it all. I’ve had to live with cerebral palsy my whole life, now this – how can life be so cruel?

Yet, I don’t feel that way at all. In fact, I feel the opposite – blessed. No, I don’t want any of this, not the debilitating illness or chronic pain or loss of abilities. But, it’s not my call. It’s aging and illness and life at play. Resenting it all wouldn’t change anything other than adding a self-defeating tail spin to my life. Acceptance is liberating.

My wife is right next to me, touching me, side-by-side. We have a king-size bed, and she insists that I somehow end up on her side no matter what. Yet, in reality, I don’t think she’d want it any other way – close, touching, reassuring, especially now, for the both of us.

Life is about change, and questioning it or resenting it over the long run only defeats us. I’m not saying taking time to acknowledge loss or express our feelings toward adverse changes isn’t normal or healthy – absolutely it is. However, there has to be an expiration date for it, or it will consume our lives more adversely than the actual changes.

I’m to the point where my pain is unbearable and I need my wife’s help rolling over. I gently awaken her, and she softly rolls me over, asking in the darkness if I need anything else?

I answer, no. My answer applies to both the immediate and my life in whole. In the silence of the night, I think about my wife and our daughters and the blessed life I have – and I recognize that I’ve never had more.

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Brave New World of Trust and Intimacy

By Mark E. Smith

Words are just that – words. While they have formal definitions, the way we interpret and experience words vary greatly. Trust and intimacy are two such words that, despite formal definition, have dramatically different connotations and practices in our relationships.

On the surface, most see trust in a relationship as intertwined with commitment, meaning your partner isn’t going to betray you. Similarly, intimacy generally means closeness, both emotionally and physically. However, while most couples have built relationships on these core principles for countless generations, the scope of what trust and intimacy mean within relationships is dramatically changing in our culture as we speak.

See, baby boomers, born between 1946 and 1964, are now between 53 and 71, to the tune of 76 million, the largest aging population in US history. Of course, there are a lot of aspects to the baby boomer aging population, but one that is especially intriguing is the shift couples are having to make when it comes to trust and intimacy. I’m not a baby boomer myself, but as a married man with a disability, I have an understanding of what many aging couples are facing, where trust and intimacy are taking on deeper, more complex meanings within relationships based on changing abilities.

The reality is, while baby boomers are demonstrating living longer than their parents’ generation, it means facing such realities as later-in-life illnesses and debilitating medical conditions. As a result, couples are finding themselves in the circumstance of one spouse caring for the other – and it’s a complex transition. Trust and intimacy, then, become a whole different experience from what a couple once knew.

In many situations, the individual needing caregiving must trust enough to feel safe in sharing vulnerabilities with his or her spouse – and that can be a harrowing leap of faith. It may have been that trust was once about fidelity or finances, whereas now it’s about your spouse helping you use the commode or bathe. That’s a big leap in trust for many. Similarly, the caregiving spouse must trust that his or her spouse is comfortable in receiving help.

On the intimacy side, it can likewise be a difficult transition. Imagine being a modest person, where your spouse must now assist you in very private living skills, such as bathing. Intimacy takes on a whole new meaning. It requires a deep understanding of each other’s emotions given the circumstance, and that can be tricky.

Interestingly, when couples are able to expand their scopes of trust and intimacy to include illness, disability, and caregiving, it can bring them ultimately closer together. The key I’ve witnessed, though, is that long-standing routines of life must remain in order to keep perspective and romance within the relationship. And, depending on the circumstance, that can be hard to do (and sometimes impossible). My wife helps me considerably in the mornings and eves, but the bulk of our life is that of a 40-something couple with children moving through life. In our case, while my disability and her caregiving aren’t the ideal, we have evolved and expanded our scope of trust and intimacy, and it adds to our unity as a couple. Put simply, we’ve learned what we can work through together – and that’s empowering to all aspects of our marriage.

Such circumstances are an increasing part of relationships within our culture as it ages, and I hope couples are able to navigate these new waters in ways that expand trust and intimacy rather than erode it. Life is about change and growth – and fortunate couples evolve together, regardless of what life sends their way.