Living with Loss

A new perspective and eight strategies to help long-term caregiver widows move on
By Diana B Denholm, PhD, LMHC

“What now? What am I supposed to do? How am I supposed to feel? Who am I”

When the funeral is over and the guests, helpers, and relatives are gone, it is common for a new widow to sit and mull over such questions. Satisfying answers certainly can be found, but the challenges to discovering them are different for long-term caregivers than for “sudden widows.” Identifying and mitigating these challenges is the key to moving on.

Meet Fran and Martha. Fran cared for her husband, Frank, for nine years while he struggled with cancer. Dale, Martha’s husband, struggled with MS for 13 years before his death.

Different People Have Different Reactions

Though both women were long-term caregivers, Fran and Martha reacted very differently. Fran expected to feel sadness, but instead felt nothing. For years, she fantasized about how great it would be when her caregiving days ended. She even planned a little celebration, but when the time came she felt neither relieved nor celebratory.

Unlike Fran, Martha felt extremely relieved that her caregiving was over—and also thought only a terrible person would feel that way. Rather than the veiled grief of feeling nothing, Martha’s grief was quite visible. Her crying was so frequent and intense that it triggered asthma and anxiety attacks.

These are just two reactions among a myriad of possibilities. Since each woman anticipated her husband’s death and prepared for it for many years, they wondered why it was so hard, why they couldn’t just get on with their lives. Both discovered very good reasons, which are listed below. Knowing these, they were able to put things into perspective and begin to move on.

“Caregiving Residue” Underlies Challenges

Whether it’s brought on by illness or catastrophic injury, caregiving demands are endless and extreme. The reality is that caregiving isn’t the beautiful, fulfilling, warm journey often portrayed. Somehow, on top of facing tragedy, a wife must figure out how to manage her new caregiving role and still function within her existing life while everything around her is falling apart year after year.

Caregiving happens within the context of an existing marriage. Some marriages respond to the new situation by strengthening, while others disintegrate. Some women are in abusive relationships and the abuse continues or increases as their husband’s health deteriorates. Others find, much to their surprise, that they become emotionally, and sometimes physically, abusive to their husbands. Some start or increase alcohol and substance abuse (including food) or have affairs for emotional sustenance. Long-term caregiving quietly debilitates caregivers and often provides countless opportunities to say and do regrettable things.

All of this leaves a residue on caregivers—a residue that sudden widows never have to face. Shedding this residue will let gratifying answers surface, and allows widows to move on.

Typical Caregiver Losses—Beyond Losing Your Love

>> Your job - For the first time in years, you aren’t needed anymore.

>> Your identity - No matter how hard you tried to avoid it, your primary identity has been “caregiving wife.” You may have given up a career to be a caregiver, and lost that identity as well.

>> Your financial stability - In many cases, income was cut, assets depleted, and life insurance policies cashed in to cover medical expenses, yet hospital bills continue to flow in.

>> Your friends, connections, and support systems - Illness and caregiving are isolating. Friends get “used up” over the years, leaving fewer to support you when your husband dies.

>> Your good health - Caregiving wives face long-term undue exertion and deplete themselves physically.

>> Your emotional equilibrium - Trauma and uncertainty have been the norm for many years. Anger settles in regarding many issues, including years lost from caregiving and the toll caregiving has taken on your life.

Move On Using Vital Strategies

Looking at the list above, you can understand why “just moving on” isn’t as easy as it may seem. Fortunately, you can remove the residue and eliminate the stumbling blocks from your path. Here are a few strategies.

1. Avoid judging and comparing.

There is no right way to grieve, no correct completion date, and no proper amount of tears. As a caregiver, your grieving process started when your husband was diagnosed as terminal, causing you to go through the “five stages of grief” years ago, so you might not go through it again now. Your emotional reaction does not indicate the depth of your love—it reflects your personality. Some people emote more than others, whether by nature or by training from parents or society. That being said, trying to hold in your emotions will likely cause future psychological and physical problems. If you sense you’re either too shut down or too emotional, consider checking in with a grief counselor.

2. Avoid woulda, shoulda, coulda and other time wasters.

You neither asked to be a caregiver nor were trained to be one, and the strains of caregiving—along with being human—left you with guilt, regret, remorse, and anger. In all areas of life, people do the best they can with the skills they have at any given time. If you could have done things differently or better, you would have. If you knew exactly what would transpire, you might have done something differently—or maybe not.

But these strong emotions are present, and you can do something about them. First, recognize that emotions are neither good nor bad, they just are. Don’t judge yourself for having or not having them.

3. Greet your guilt, regret, remorse, and anger.

Rather than either letting these thoughts mull around in your mind or avoiding them, get them out in the open (for your eyes only) by writing them down. Don’t censor and don’t analyze. It’s tempting to look for deeper meanings: Why me? Why him? What’s it all about? Who is to say what the right answers are—if any even exist.

4. Finish your emotional business.

Using the list, talk to your husband! Good or bad, get it out. This is your “do-over.” It’s never too late to say things you always wanted to. You can go to the cemetery and have a chat. If you need more privacy, imagine him sitting wherever you used to talk. Do whatever feels right to you, even if it seems silly.

If it feels too awkward, write him a letter, or maybe several letters. This isn’t a one-time activity. It’s healthy to get this out of your system. (You can learn more activities for safely releasing emotions in The Caregiving Wife’s Handbook.) Fran had a fight with Frank shortly before he died, so she talked to him to apologize and say all the loving things she wished she had. Martha never told Dale how badly he hurt her with his cruel behavior, so she finally had that conversation with him and was greatly relieved.

5. Recognize how you’ve changed.

You are not the same person you were before caregiving. You’re likely stronger and more self-reliant, and surprised at how much you can handle. Compare your behavior before caregiving to what it is now. If it has changed for the better, note that so you can continue this new way. Fran was extremely pleased to find that she had a right, and was able, to communicate and take stands on issues of importance to her.

On the other hand, if you don’t like what you’ve become, explore ways to make changes. Martha didn’t like her new harsh demeanor and the way she overreacted to people, so she worked to reclaim the sweet person she was before caregiving.

6. Take caregiver strengths into your new life.

Along with behavioral changes, you acquired many new skills, strengths, and abilities. What did you learn and where can you use those skills now? Martha never handled finances until her caregiving days. She discovered that she liked working with figures, and is now doing part-time bookkeeping from her home. Fran took over yard duties from Frank, found a new interest in it, and now is a tour guide at a botanical garden.

7. Reclaim your health: What did you learn from your husband’s illness?

A common complaint wives have is that their husbands either could have either completely prevented their diseases or at least could have prevented their symptoms from getting worse. They will wonder why their husbands didn’t see things that were so obvious to them.

Now is the time to apply that scrutiny to yourself. The one thing you are in charge of in this world is you. The choice is yours to pick health and you now have the freedom to do it.

8. Practice Self-Kindness.

Self-care probably was low on your to-do list, perhaps because it felt like one more job. Instead of self-care, consider the concept of self-kindness: How would you talk to your best friend? What would you suggest she do for fun? What would you say to her about unfinished business? Would you berate her for being less than perfect? Would you rush her through the grieving process or would you suggest that now she deserves to take a break?

Be as kind to yourself as you would to your best friend.

As a therapist and long-term caregiving widow myself, I know it seems that for years you had no options or choices in your life, and certainly no control over it. Now those options and choices are available—ready to identify and claim. This is the time to give yourself permission to create your own life to fit your personality.

You can rejoin the world in your own style—create the life that pleases you.

 

Diana B. Denholm, PhD, LMHC is the author of The Caregiving Wife’s Handbook: Caring for Your Seriously Ill Husband, Caring for Yourself. A diplomat of the American Board of Medical Psychotherapy, she has been a therapist for 35 years, and cared for her critically ill husband for nearly 12 years. She gives presentations and workshops for major corporations in the United States and abroad, the Palm Beach County medical community, sports centers, and nonprofit agencies. Her blogs and articles are on major websites throughout the country.