The Dirty Job No One Discusses

Each December I write a mentoring article. This one, Old Age Sure Ain’t For Sissies, lit up my inbox.

Friend and subscriber Rick G. wrote:

“I have a suggestion for a follow-on article which would be of great value.

There is lots of advice available for patients. What about the caregiver?

While there may be acknowledgement and lip service, that is normally where the conversation stops. Family and friends are uncomfortable, hoping they never have to deal with these situations as either a patient or caregiver.”

We have dozens of caregiver friends. I’ve written about my cancer challenges and the caregiving role Jo played in my recovery. When friend Chuck Butler learned my tongue cancer was gone, he assigned me a new role, helping and mentoring others, talking as a voice of experience.

I asked her a simple question:

“When I was diagnosed with cancer would you have welcomed advice from caregivers who have been there, done that?”

Her response: “YES, absolutely!” Jo echoed Rick’s sentiments.

I interviewed family and friends, who have served, and continue to serve as caregivers. 100% wished, “They knew then, what they know now, and would have welcomed some mentoring.” They all jumped in, sharing ideas and experiences in the hope of helping others.

After many hours, I had several pages of great ideas.

What’s a caregiver?

A caregiver is, “a person who tends to the needs or concerns of a person with short- or long-term limitations due to illness, injury or disability.”

Short-term caregiving is generally event-based. While I became self-sufficient after two years of cancer treatment, Jo’s caregiving role changed. She proactively stays on top of our health care, accompanying me on doctor visits, etc. Her nursing background has been invaluable in deciphering medical jargon, understanding and decision-making.

Long-term caregiving requires more constant care, dealing with chronic conditions over a long period of time, including the loss of a loved one.

The level of care required varies widely, from taxi-driver to daily spoon-feeding and diaper changing.

Despite the differences, they all had much in common. 100% agreed with Rick’s comment about lip service. While people may feel they understand, unless they have been there, done that, they really don’t. They mean well, but you are generally on your own.

I asked about “feelings” along the journey. The list was long:

• Anger

• Frustration

• Exhaustion/Fatigue

• Helpless

• Bewildered

• Sad/Happy

• Can I do this?

• Will I ever get time for myself again?

I was surprised how many ignored their own health issues, subordinating their needs in favor of the person needing care.

Caregiver suggestions

I gave the caregivers free rein, many times writing feverishly as they spoke. I’ve tried to organize their recommendation in some logical order….

Learn new skills now! During your working years, expediency requires each partner assumes certain roles. We used to call them pink jobs and blue jobs.

Overnight an accident, heart attack or stroke can totally change things. The caregiver must focus on giving care to their loved one, while feeling helpless, sometimes terrified, because of what they can’t do.

Don’t ignore this suggestion! Swap roles and learn the skills now. Caregiving is stressful enough. Knowing you can, at least temporarily do the other job is extremely important.

Take care of yourself so you can do your job for as long as it takes. One family member went to exercise class twice a week before her husband ran into problems.

She said she was lucky, getting some great advice. Her exercise instructor emphasized, “Don’t stop your exercise routine. You now HAVE to be strong, both physically and mentally – and perhaps for a long time.”

Advice was spot on…. This petite lady had to help her large husband in and out of bed, etc. She was a heavy-duty 24/7 caregiver for over five years – but somehow continued with her exercise class twice a week. She stressed how important it became for her both mentally and physically. Her husband passed away a few years ago, she is closing in on 80, and still goes twice a week.

Having a schedule makes things much easier. All emphasized, while things changed from when both were healthy, having some sense or order is a must.

One set up a twice a week, “reading with Grandpa” event. Grandpa was immobile, yet still could communicate. Young grandchildren would come over and grandpa would read with them. Home health care, family and friends visit on schedule allows the caregiver time to look after other issues, including their own.

“Action is the antidote to despair.” — Joan Baez

The sooner you accept your new job, the better. Each person had their story transitioning from their “normal” life into their “new normal” life.

Being angry, why me – and all the other aforementioned feelings are normal, but don’t let it get you down. It’s counterproductive; focus on the task at hand.

Get aggressive with medical community. When asked, “Knowing what you know now, what would you have done differently?” This was on the top of the list. One friend said, “Don’t tolerate their BS!”

Several accompanied their spouse on doctor visits. The doctor would ask the patient how they were doing – but never asked the caregiver, who is with them 24/7; or asked for their opinion.

Demand straight talk and clear diagnosis. One said, after several years of trying to help her husband struggle with rehab, the doctor finally pulled her aside and said, “He’s not going to get better, only worse.” She was furious, why wasn’t he honest from the beginning?

On a personal note, Jo and I have made it clear to all my doctors, should they feel I am past the point of no return, tell us. I want to speed up the process, not put my family through suffering any longer than necessary.

Demand honesty and clear assessments from day one….

Realize when you MUST become the parent. The caregiver is the adult in the room and has to make the decisions, which is often difficult. Those who ended up in that situation wished they realized it earlier.

Expect frustration and try to hide it. Caregiving is a tough job, not every patient is always understanding and appreciating – yet can be very demanding.

I heard countless examples about the caregiver becoming angry and feeling guilty afterward.

In the middle of ugly cancer treatment, I asked Jo why she was closing the door to her office. She hesitated and finally blurted, “Because I don’t want you to see me cry.”

When pressed, they all felt it was normal. No matter how hard you try, you won’t be perfect, just do the best you can. Fatigue makes the job very difficult. Everyone wished they had more patience – don’t we all….

Don’t be afraid to ask for help. Many had plenty of offers, with little follow-through. They soon realized people were sincere but didn’t know what to do. It is incumbent on the caregiver to ask specifically for the kind of help needed, and when.

Help may be simply babysitting for an hour, or reoccurring tasks like “meals on wheels” or home health care. Children may schedule and rotate their visits in order to give the caregiver a much-needed break.

I sensed a general reluctance to ask, feeling they would look bad, or their spouse might feel they don’t love them anymore. Some put their own health in jeopardy before finally giving in. They concluded, don’t worry about what others think, they’re not in your shoes.

Because you love them you want to provide the best care, while maintaining your own health so you can continue doing so. If you need help, speak up!

Along with that…

Home Health care is expensive and can be unreliable. Home health care appears to be an employment agency for those providing care. Like Forrest Gump’s box of chocolates, you never know what you are going to get.

I heard lots of horror stories. Some are reliable; others may just not show up or do their job poorly. One friend had a home camera and watched the nurse spend the entire time talking on the cell phone while her husband needed help. Another caught the caregiver stealing.

They emphasized you are paying a lot of money for professional babysitters and you should expect quality care and concern in return. If you don’t get it, speak up; and fire as many as you must until you get it. Set expectations with your provider and monitor their progress. Just because they advertise “compassionate care” doesn’t make it so.

Completing The Journey

For those who lost their spouses, I asked for afterthoughts.

One discussed a positive aspect. He’d been retired for several years and became a full-time caregiver. He felt he had a real purpose in life and doted over his wife for the entire process.

All took great pride in saying “I kept my vow.” They took on an incredibly tough job, did the best they could; honoring promises made generations ago. They should be proud.

They also added, “I come home to an empty house, and it’s quiet. I miss them every day.” While their spouses have been gone for years, those feelings will never go away.

100% gladly pitched in, sharing their experiences, feeling that caregiving was the toughest job of their life. Their caregiving continued, hoping their suggestions help others following in their footsteps. That’s what mentoring is all about….

Help keep us online! I love it when readers thank me for “telling it like it is” for providing content they won’t find in the mainstream media. I’ve been sent to Facebook purgatory a few times – they didn’t approve. Free speech isn’t appreciated in all circles. When I started Miller On The Money, I vowed to keep our newsletter FREE! I’ve kept my promise – our weekly letter is an expensive hobby. Donations are our primary source of financial support, and what keeps us going. We don’t peddle your name to anyone. I’ve turned down proposals from advertisers, feeling their offerings were inappropriate for our readers. Readers pitching in to help offset our cost are much appreciated. It’s strictly voluntary – no pressure – no hassle! If you want to help, click the DONATE button below. You do not have to sign up for PayPal to use your credit card. And thank you all!

On The Lighter Side…

This article was one of the most emotional challenges I’ve ever taken on. I interviewed loved ones, family and friends. It was impossible to emotionally detach myself from their situation. Angst, tears, sadness and sometimes laughing hysterically was common. The emotions mentioned in the article were something they experienced every day – and then again when sharing their challenges.

All were grateful for the gift of life and emphasized how we should count and appreciate our blessings while we can.

Jo was driving on I-10 in West Texas as we motored home after Christmas. She was in the left lane, passing a truck. All of a sudden, a semi in the oncoming lane swerved off the road into the median. A huge truck wheel came flying across our bow, missing us by mere inches, hitting the semi in the right lane. We were a split-second away from what could have been a real disaster. Jo checked her mirror and the semi she was passing never lost control and slowly pulled off the road into the right lane.

Terrifying for sure! Count your blessings and enjoy every day as best you can. You never know….

Quote of the Week…

“A person should do the things a person loves with the people a person loves.

Because you never know what happens next.”

— From the movie Goodbye Christopher Robin

And finally…

Friend Phil C. offers some opinions on marriage from young children:

HOW TO DECIDE WHO TO MARRY

-You got to find somebody who likes the same stuff. Like, if you like sports, she should like it that you like sports, and she should keep the chips and dip coming. — Alan, age 10

-No person really decides before they grow up who they’re going to marry. God decides it all way before, and you get to find out later who you’re stuck with.
— Kristen, age 10

WHAT IS THE RIGHT AGE TO GET MARRIED?

-Twenty-three is the best age because you know the person forever by then.
— Camille, age 10

WHAT DO YOU THINK YOUR MUM AND DAD HAVE IN COMMON?

-Both don’t want any more kids. — Lori, age 8

WHAT DO MOST PEOPLE DO ON A DATE?

-Dates are for having fun, and people should use them to get to know each other. Even boys have something to say if you listen long enough. — Lynnette, age 8

-On the first date, they just tell each other lies and that usually gets them interested enough to go for a second date. — Martin, age 10

WHEN IS IT OKAY TO KISS SOMEONE?

-When they’re rich. — Pam, age 7

-The rule goes like this: If you kiss someone, then you should marry them and have kids with them. It’s the right thing to do. — Howard, age 8

And the #1 Favorite:

HOW WOULD YOU MAKE A MARRIAGE WORK?

-Tell your wife that she looks pretty, even if she looks like a dump truck. — Ricky, age 10

Until next time…

Dennis Miller

“Economic independence is the foundation of the only sort of freedom worth a damn.” – H. L. Mencken

 

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