Let Go: Because You’re Worth It

As caregivers, it seems we’re always taking on more and more, which just adds to our already crazy stress level. So, what can we let go of to lighten our load? Here are a few suggestions from my own experience.

Being nice, no matter what. Strive to be kind, but nice is not always possible. Sometimes, you just have to speak your truth.

Relationships that aren’t working. People change. Needs change. Sometimes, stepping away is the healthiest thing, even if it’s only temporary.

Expectations of how others should act. That is a guaranteed misery maker. Am I right? You can only control your own actions, and even that’s tough, sometimes.

Second-guessing decisions. The reality is that caregiving often puts you in heartbreaking, no-win situations. Don’t beat yourself up. You can only work with what you have.

Trying to be the perfect caregiver/daughter/partner/sister. Who you are is good enough. Let me repeat. Who you are is good enough.

Worrying what others think. I stopped giving a rat’s patootie about this early on. No one has walked in your shoes, and there will always be “judgers,” no matter what you do.

Trying to fix everything. This was a hard one for me. Despite your love, concern, and efforts there are simply some things that can not be fixed.

Even if your choices are different than mine, it’s clear that letting go begins with the belief that caring for ourselves is just as important as caring for a family member.

What are some of the things on your list?

 

Let’s Talk Tough Conversations

Caregiving is filled with difficult discussions and End-of-Life talks are particularly hard, uncomfortable, and can even feel insensitive, at times. The key, though, lies in reframing these conversations as acts of love that satisfy a dual need for both you and the person you’re caring for. Not only does your parent/grandparent/spouse/partner have the right to be heard and respected for their choices, but this kind of validation can also bring them comfort and piece of mind. This is the very same thing it can do for you as it removes the burden of trying to guess what their wishes are in a time of crisis.

A good place to begin is with talking to your adult family member about the kind of medical care they want and don’t want as they grow older, become ill, or if a catastrophic health event were to occur. Some questions might focus on their priorities such as wanting comfort care over aggressive treatments; preferring hospice care at home, if possible, over spending final days in a hospital; or embracing quality of life over quantity.

These conversations are deeply rooted in a person’s values, beliefs and what is most important to them, and even if your family member is in the early stages of a dementia diagnosis, he or she may still have a strong desire to make their preferences known.

Talking about it isn’t enough, though. Their wishes must be outlined in a legal document called a Living Will, also known as an Advance Directive. The Advanced Directive spells out instructions regarding preferred medical care if a person is unable to communicate this information on their own.

There’s another necessary legal document that names a Healthcare Surrogate, aka Healthcare Proxy, or Healthcare Power of Attorney. This person becomes the voice of the patient if they’re unable to speak, so this needs to be someone who the patient trusts to do their best in terms of ensuring that medical personnel carry out their wishes. It’s a hugely important role, and one that not just anyone can fulfill. In fact, when I was going down the list of potential prospects for me personally, I ended up choosing my ex-husband, who I will say, was very enthusiastic – almost too much so!

Finally, another critical health-related document to discuss early on is the Do Not Resuscitate form, or DNR, a formal doctor’s order that must be completed and signed by a physician and your family member. Essentially, it states that CPR should not be performed if they stop breathing or their heart stops beating.

The reason this form is so critical has to do with the effectiveness of CPR procedures, which include mouth-to-mouth resuscitation, but also electric shock, inserting a tube into a patient’s airway, and even open-chest heart massage. If someone is already in a fragile state, CPR may leave him or her in profoundly worse condition than before. It’s a very personal choice but one that needs to be made ahead of time. For the record, during the time I helped care for my mom, I carried this document with me in my Caregiver Purse, and always made a point of letting hospital personnel know about it. Sometimes, I felt like the Angel of Doom, but making sure my mother’s wishes were honored was always what guided me.

So what should happen next? Make copies like crazy and share t with all healthcare personnel involved in your family member’s care. Keep a set in the person’s home. If they live in a residential care community, make sure the administration has the documents, and always keep copies that you can put your hands on quickly. Also, give to the hospital and/or ER whenever your loved one is admitted. Don’t assume that if you gave it to them once, it will be enough. With the DNR in particular, make sure it’s in a place that can be clearly seen in your family member’s home or room.

Two good websites for more guidance on Living Wills include: AgingWithDignity.org, which offers a form called 5 Wishes, a type of Living Will that addresses emotional, spiritual, and personal needs in addition to the medical side of things. The other site is TheConversationProject.org, which actually offers conversation-starter kits to help individuals and families feel more comfortable when talking about end-of-life choices.

There is nothing easy about having these kinds of talks, which can often be very emotional experiences. And it’s ok to say that it makes you uncomfortable, and you’re unsure how to begin. But, as a family caregiver, having the courage to take the lead on this can actually offer an opportunity to create an even deeper relationship with the person you’re caring for. Who wouldn’t want that?

Note: Another important conversation has to do with seeking a loved one’s input regarding  their funeral or memorial service. Again, it may seem like a subject you shouldn’t bring up, but in reality it’s a way of showing your respect by wanting to honor their final wishes. For more info, see this post (a reader favorite) about planning my mom’s funeral with Barbra Streisand’s help.

 

Speaking Up

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Awhile back I invited my writer’s group to compose a letter to people they interact with who are not caregivers themselves. To say the flood gates opened with this assignment would be an understatement.

Responses included:

The son or daughter who never calls, or who only calls to tell you about their problems. Or maybe they rarely visit, or never ask how you or your spouse is doing?

The busy sibling who has no time to help, yet is always happy to criticize your caregiving efforts.

Numerous acquaintances who use that well-worn phrase “Let me know if you need anything,” as a sign-off to every conversation, and that’s where it stops.

The well-meaning friend who comments on how worn out you look, just when you were feeling pretty good.

The doctors who act like you and your parents are working for them, and not the other way around.

It’s clear this particular prompt struck such a nerve, and in all instances the group remarked that they stifled their responses for fear of being labeled a complainer, a troublemaker, or a bitch. I get that keeping quiet can sometimes be the better plan, but, there are many instances where we’ve simply got to speak up, because remaining silent only reinforces a status quo which is hurtful to those we love, and to ourselves.

Here are a few excerpts from my own letter, written to some of the physicians involved in my parents’ care over the course of six years. This isn’t an indictment of all doctors, for some were compassionate, generous with their time, and truly seemed to understand the challenges faced by my parents, and me as their advocate. For the record, I gladly wore the labels noted above and did share a few of these comments with healthcare personnel.

______________

Dear Medical Professional,

Before we begin, please fill out this ten page form of very tiny type, documenting your qualifications. Already completed this for the last caregiver? Sorry, I’ll need you to do it all over again. You’ve been waiting to see me for an hour? Well, everyone knows that a 9 o’clock appointment really means 10.

Do not automatically assume that all patients in their late 80’s have no capacity to understand what you’re telling them. Also, be prepared to answer a list of questions about side effects, expectations of recovery, etc. after you propose a risky surgery or procedure. Never use the enticement, “You’re not paying for this. It’s covered by Medicare.” Where do you think Medicare gets their money?

Please refer to elderly patients as Mr. or Ms. or Mrs. and not by their first names, or as the UTI or cardiac cath in room 202. Surviving this country’s health care system thus far, entitles them to a great deal of respect, and you are treating a person, not a condition.

Stop saying, “How are we doing?” when a caregiver and her parent finally get to see you after sitting for two hours. WE are pretty damn tired of late night trips to the ER. How are you?

Don’t look at a caregiver and say, “You need to do such and such,” as if this person has been hanging out on the couch eating bonbons and watching soap operas, all this time. Instead, look her in the eye and ask, “And how are you holding up?”

The next time a nurse brings an elderly patient the two Tylenol you prescribed for pain due to a pelvic fracture, don’t get all huffy when the daughter/caregiver raises hell and demands to speak with another hospitalist. Prescribing opiates may not be your first choice, so do your research, or call in a pain management specialist. Just don’t minimize that patient’s distress.

To close, I get that you work long and demanding hours. As a caregiver, so do I. Maybe we can work together as a team to change things in this broken healthcare system of ours. Please accept these suggestions as a token of my commitment to this worthy goal. The next batch of suggestions will be accompanied by a bill for consulting services rendered. Payment will be due within 30 days, and FYI, I don’t accept insurance.

Respectfully,

Judith Henry

______________

Readers, if you’re game to give this exercise a try, pen your own letter to someone, and look closely at what you’ve written. Like the members in our writing group, you may feel a sense of relief just getting these unspoken words out of your head and onto paper. But think for a minute – is there a way to present your thoughts constructively to the person you’re writing to?  For example, instead of automatically saying, “I’m fine” to the adult kid who calls with a cursory “how are you?” be honest. To the physician who barrels in with a treatment or surgery, assuming your parent (or you) will acquiesce quietly, explain you have a list of questions prepared to be answered first.  When someone tells you, “Let me know if I can do anything,” don’t just say ok. Tell them what they can do to help, and be specific.

You never know. Your words may just start changing things for the better.

 

Are you the bug, or the windshield, today?

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As the Mary Chapin-Carpenter song goes, “Sometimes you’re the windshield. Sometimes you’re the bug.” While there’s simply no way to steer clear of the many challenges this caregiving journey brings, we can learn so much from them. Here are just a few things I discovered along the way.

In addition to constantly multi-tasking, you’re also dealing with a multitude of conflicting emotions. Caregiving is damn hard work, and if you don’t explode once in awhile, someone needs to take your pulse. Give yourself permission to feel what you feel, without judgement. Sit down with a cup of hot tea or a glass of wine, grab a journal, and write it out.  Venting on paper offers an opportunity to safely process all that we’re going through, and the realizations that are often unearthed can be very powerful.

When the planets align and things go according to plan, that’s usually due to one person who’s willing to go the extra mile (in addition to you, of course). Maybe it’s the doctor’s receptionist who slides your dad in for an appointment on a day you can be there; or the nurse’s aide at your mom’s rehab facility who always treats her with such respect. To acknowledge such kindness, I maintain a stash of thank you cards and inexpensive gifts like pretty notepads, hand-made soaps from a local artisan, $5 gift cards from Starbucks. Small gestures like this can can have a big impact, because they’re so unexpected. The caveat is that you have to do it for yourself, as well. For me, a small reward was heading to a favorite thrift store for a $3 treasure, or 15 minutes of quiet with a good cup of coffee from my favorite cafe.

Reach out to a support group, either close to home or online. You may think you don’t need this, but the reality is that caregiving takes a village. Isolation is a very real concern that can affect your mental and physical health. These communities are a way to make friends, receive support and encouragement, and gather helpful strategies from people who are living the tough stuff every day. Many focus on special needs like caring for a loved one with dementia (check out Brenda Avadian’s site, The Caregiver’s Voice), or working daughters caring for aging parents (Liz O’Donnell of WorkingDaughter.com has a site that offers great advice and support, and a FaceBook group that offers the same.)

Accept help early on, while people are most likely to offer, even if you think everything’s under control. The reality is that the longer you go on doing it all yourself, the less people tend to believe you need assistance. Be specific. Maybe it’s asking someone to bring a meal; or having a friend sit with the family member you’re caring for, so you can take a break for a few hours. Make a list that includes daily, weekly or monthly chores that others can perform, and when someone says, “Let me know if there’s anything I can do” be ready with, “Well, actually there is. How about……” Believe me, this points out who you can count on pretty quick.

Maintaining a sense of humor while caregiving isn’t a luxury. It’s a necessity. Laughter, even the dark kind, allows your body to relax during stressful times. But, did you know it can also keep you from being crushed by emotion? It saved me countless times, especially the last day I spent with my father at the hospital, simply holding his hand. When the nurse asked if I wanted someone from the clergy to visit, I asked for a rabbi. As he entered the room, I couldn’t help thinking that he didn’t look like a member of my tribe. Reading my mind, this lovely man said, with an apologetic smile, “I’m not Jewish, but will an Episcopalian do?” In that instant, I laughed. Not a nervous titter, but a loud, life-affirming sound that provided me with what I needed most – release and relief.

I once read that, “If only” is the saddest phrase in the English language. Don’t become a prisoner of regret after a parent is gone. Be generous now with some simple, yet powerful phrases. “I love you.” Thank you. I forgive you. Please forgive me.” You would be amazed at their ability to bring about positive change in a relationship. A great book on this subject is Ira Byock’s, The Four Things That Matter Most.”

What I continue to realize is that we are all in this together, and sharing our experiences is how we begin to change things for the better. Why not take a minute and offer up some of your own hard-earned wisdom?

A Caregiving Cirque de Surreal

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By Lithograph by Faddegon & Co., lith., Amsterdam, Holland [Public domain], via Wikimedia Commons

 

One night, I got caught sleeping at the office in a queen-sized bed that stood where my desk should have been. All my teeth started falling out in one long strand. There were terrorists at the mall. I tried to escape but couldn’t pick my car out of the 1000 other grey Camry’s in the parking lot. My contact lenses were all fogged up, so I couldn’t see the numbers on my cell phone to dial for help. Frustrating? Yes. Bizarre? Not so much.

Welcome to Caregiving 101, where our dream life can make more sense than real life.

During the six years spent caring for my parents, I sometimes felt like a high-wire act in a crazy three-ring circus. Maintaining a full time job, living two hours away from my folks, dealing with a broken medical system, healthcare emergencies, fractured family dynamics, and a father who was sliding into dementia yet struggling to maintain control, there were times when I questioned my sanity and the ability to keep going. What often saved me was a sense of humor that could politely be described as “dark.”

There was the miserable rain-soaked day when I drove to Orlando to register my mother’s last will and testament. Exhausted and choking on the words, “My mom has died.” I asked a security guard at the courthouse for directions to the Probate Division. He took that opportunity to rifle through my brief case and purse, proudly confiscating a pair of tweezers. TWEEZERS. At that point, I simply burst out laughing and told him, “Good job. What a relief to know that the chin hairs of Orange County are safe for another day.”

Even my book’s tongue-in-cheek title came out of an anxiety-laden visit one weekend to check on each of my parents – my mom in rehab following her mastectomy and my father at home, recovering from a fall. Driving with my head out the car window like a dog on a road trip, I had to find some way to calm down. A stop for coffee helped a little and got me to my dad’s house fifteen minutes later than my, always punctual, 9 AM. Sitting at the kitchen table in an old flannel robe, and checking his watch, he tisked, “Well, well, the dutiful daughter is finally here.” At that point I had three choices. The first was to start crying; the second was to get angry; and the third was to laugh, kiss the top of his head and say “Thanks, Daddeo, you’ve given me the perfect title for a book.” Choosing option number three turned out to be life-changing.

Maybe we should start taking laughter a little more seriously. Research shows that it allows our bodies to relax during stressful times; releases endorphins, a natural pain fighter; lowers blood pressure, and boosts our immune system. It speaks to resilience in the face of great turmoil; protects us from being crushed by our feelings; makes it easier to step back and regain perspective during moments of anger; and sometimes it can be a powerful way to soothe a broken heart. All that and you don’t even need a doctor’s prescription – just a willingness to embrace the sheer absurdity that life tosses you, when least expected.

As caregivers, we have to find respite from the mental, emotional and physical strains of this journey.  Embracing the words of Linda Ellerbee, an American journalist, seems like the right place to start.

“In this world, a good time to laugh is any time you can.”

What do you think? Is there a time you could have cried, but chose to laugh instead?

 

A Caregiver’s Report Card

J Henry RCard

Are you secretly giving yourself a grade for caregiving? Feel you’re falling short? Don’t be ashamed to say so, because I get it. Growing up in my house, a grade of “C” was equivalent to an “F,” and at dinner each night, my younger siblings and I had to come up with good answers to my father’s perpetual question, “What did you do of any consequence today?”

Decades later, while caring for both my parents during the last phase of their lives, and still putting myself to Dad’s test, these are the responses I finally arrived at.

Perfect solutions don’t exist when caregiving, and what may work one day, may not work a day, a week, or a month later. Even knowing this, we often drive ourselves to exhaustion processing tons of information, and absorbing solicited and un-solicited advice while trying to honor the hopes and expectations of the parent we’re caring for. It’s inevitable that sometimes “analysis paralysis” sets in. This happens when we worry about not having all the facts, are concerned the decision may be the wrong one, or have convinced ourselves that the worst possible scenario is going to occur. What can help is learning to stop second-guessing our decisions; remembering we can only work with what we know at any given time, and making peace with the idea of “acceptable for now.”

Caregiving is a verb, and our days run on multiple To Do lists – dealing with a deeply flawed medical system, particularly where the elderly are concerned; ordering and picking up medical supplies and prescriptions; filling out insurance forms; and responding to crises we’d rarely imagined. It’s never-ending, yet caregivers often feel they should be doing more. Once in awhile, try making an “Accomplishment” list, instead. Write down all the things you manage to handle while taking care of a parent/ a spouse/ a child/ a full time job/ a home/your own needs, or any combination thereof. Even you will shake your head in disbelief at what you’re achieving under great odds.

Try not to compare your caregiving experience with others. I was speaking with someone who’d been taking care of a father with dementia for over 10 years. When I commented on how hard that must be for her, she said, almost apologetically, that her dad was in a memory care unit, so she wasn’t a twenty-four hour caregiver. The reality is that caregiving is a 24/7 job whether your parent is with you or not. You’re still the one being called at all hours when issues arise and difficult decisions must be made, so don’t ever devalue your efforts.

Often, the toughest part of caregiving is recognizing that you can’t always make things better for Mom or Dad despite your love and efforts. And sometimes, being with a parent is more important than doing for them.

Finally, forgive yourself for being irritable, resentful and sometimes wishing your caregiving responsibilities were over. It doesn’t make you a bad person. It just makes you human. The irony is that accepting this fact can release some of the unrealistic expectations and pressure we put on ourselves to try and fix everything that goes wrong.

So, for those of you who still feel the need to grade yourselves, I’ve devised a new system with caregivers in mind.

                                                    A – Accomplished

                                                    B – Big-hearted

                                                    C – Compassionate

                                                    D – Dedicated

                                                    F – Fabulous

Now – go ahead and give yourself the “F” you deserve.

Hug Your Pharmacist Today

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January 12th is Pharmacist Day, and it’s time to share a tip straight from Chapter Five of The Dutiful Daughter’s Guide to Caregiving, entitled “Kosher Pickles. Check. Blood Pressure Meds. Check.”

You may not realize it, but when caring for an aging parent, one of the most valuable relationships you can cultivate is with their local pharmacist.

Fortunately for me, my mom was a smart cookie who’d already thought of that. She was a regular at Harrison’s Pharmacy, which was only a 2 minute drive from her home. And while it wasn’t always the cheapest place to fill some of her prescriptions, the assistance we received over a period of time was invaluable. About once a month or whenever a drug was added or subtracted by one of her physicians, the pharmacist would print out an updated list that included what each medication was for, and the exact dosage. So, instead of dragging a laundry bag of pill bottles with her to each doctor’s appointment, she took this list, instead. In addition, she gave copies to me, my siblings, paid caregivers, and also kept one in her handbag for emergency room personnel at the hospital.

Since older adults can often find themselves under the care of multiple specialists prescribing a cornucopia of drugs, a knowledgeable pharmacist can be the first line of defense when it comes to sounding the alarm about potential side effects and interactions. Especially important, since taking more than three medications daily can increase those chances.

By the way, what works for your parent can also work for you. So, next time you visit your own pharmacist, take a minute to say “Thanks.” Down the road, it could be a life-saver.