CAREGIVER DIARIES: HEALTHCARE

Senior citizens desperately need advocates. 

They need eyes, ears, and hands to help them navigate the health care system on which they depend. It's a system that seems to forget their age, and overestimate what they're capable of.

 

A conscientious EMT made an executive decision, and once again, I was riding in an ambulance with my Dad. 

Again, I was allowed to witness, and my Dad to experience, the care that should always exist in healthcare. 

Fortunately, the letter I drafted never had to be sent:



“Good Morning.
My father, was a patient at Inova Mt. Vernon from Tuesday, October 17 until Saturday, October 28. 

I am writing to request a copy of his discharge papers, to include the wound care instructions given to the Rehab Center. 

Three days ago, he was transferred to ___________Rehabilitation Center. 

At Inova, I believe, great strides had been made by Dr. Tabari, Dr. Anand, Dr. Rahmanian, and others, to restore circulation in his leg, isolate the infection in his gangrenous left foot, and slow further deterioration. 

I want to thank you for your part in that outcome. 

I also want to do all I can to ensure that your work was not in vain. 

I visited my father at _________late morning, yesterday, October 30, and was horrified to find his sheet stained. 

Someone had put a sock (no-slip footie) directly onto his wounded, un-bandaged foot. 

No one could confirm to me exactly when, or why this was done, except to suggest that the foot needed to be "covered," during his physical therapy session. The sock evidently adhered to my father's wound, because he cried out in pain while a nurse removed it. 

The CNA simply stood there dumbfounded, not knowing what to do.

When deciding what facility my father should go to, __________was chosen over a much more conveniently located facility because, although we were told that we could not be "steered to any particular place", __________ was “exceptional”. 

When my father was admitted to __________, I was assured that the staff would continue the wound care protocol followed by Inova, through the weekend, and that __________’s wound doctor would assess the injury on Monday. 

At Inova, I observed Dr. Yoon's treatment of the foot; how he took great pains to cut away any dead skin that would create pockets where fluid would gather. Each day at Inova, I observed twice daily application of Betadine, and gauze bandaging. 

My father was also wearing the blue boots to protect his feet and heels. 

At __________, to lift the tight bedding and see him wearing a mere footie, and see his blue boots lying at the foot of his sleeping roommate's bed, was extremely disheartening. 

He'd had no breakfast, nor had he been showered.

I understand that each facility and doctor may exercise discretion in recommending and administering treatment, but I could not have anticipated __________’s wound doctor simply leaving the foot uncovered and unprotected, nor the PT expecting the foot to bear weight. 

It departs entirely from Inova's protocol, which had been demonstrably successful over the past weeks. The only explanation I've received, in response to my questions, is that __________ has its own doctors, nurses, and plan of care, and is under no obligation to follow Inova's.

My father's Foley catheter bag was lying flat, next to his foot, on the bed. 

In addition, I could not believe my eyes when I saw a dog that I'd seen outside, running through the lobby. 

When a cat followed the dietician into my father's room, I was informed that the animals "lived there". "Oh. You don't like cats? Are you allergic? Is he allergic? I just won't let him come into this room, then", the dietician said.

She scooped up the cat, and put him in the hallway, but as soon as someone else opened the door, the cat walked back in---at which, the dietician simply shrugged.

The only thing that seemed clear to everyone at __________, was that my father not be resuscitated, should his condition worsen.

Based on this, and all that I saw and heard at __________on Monday, I am worried that I will soon find my father in a similar, or worse situation as he was in, when we first arrived at Inova's ER from __________ three weeks ago.   

In view of the above, in your professional opinion, is there ANY basis for him to be readmitted to Inova at this time?

Who determines the rehab objectives for him?

Is there any procedure for coordinated care between Inova and __________ (or another facility), whereby the treatment is strictly directed by Inova?

Dr. Dunkle  was very forthcoming in his discussions concerning palliative care. I realize that my father is 90 years old, however it appears that the best, and most diligent and compassionate care he has, and can receive is at Inova.”

Respectfully,

Vanessa R. Williams 

I admit, Virginia's Inova facilities, and their employees, have drastically changed and colored my view of health care.

Mt. Vernon. 
Leesburg. 
Loudoun. 
Landsdowne. 
Maybe it's not fair to compare other places to them, but they are a testament to what is possible in health care. Every ailing human being deserves that level of excellence, compassion, and attention to detail. 

Why is it not the rule? 

Why don't all facilities win national awards like the one where my Dad consistently made progress?

It occurred to me that I was regularly singing praises to the Inova brand, for the care my Dad received. 

I witnessed a spirit of service and excellence from every person who came in contact with him. 

The standard of care was high and consistent--unlike anything I'd ever seen in all my years as his caregiver. I realized, however, that it's not completely about the brand. It's the people: 
Tori, Meaghan, Richard, Albert, Whit, Kelsie, Alyssa, Kapil, Tammy, Donna, Catherine, Chris, Abu, Corinne, Mike, Jianbo, Huaying, James, Grace, Paramdir, Alexander, Shilvone, Val, Rebecca, Joel, Mary, Lisa, Siu, Larisa, Juana, Nas, Belinda, Frank, Leanne, Alicia, Poppy, Temidayo, Samantha, Jill, Mabel, Miriam, Amanda...

There are people--angels-- I've had the privilege to meet since October, who I will never forget, because of the manner in which they treated my Dad, and because of the manner in which they carried out their duties. 

Compassion has to be taught, as well as the importance of integrity. 

Attitude is everything. 

People, and their continuing health, have to be prioritized over profits.

Alex, one of the Physician's Transport Service drivers I met in November, said "I have a 911 background, so patients first. 

It's a patient's worst day, sometimes. 

It doesn't hurt to smile; be pleasant; let them know you care." 

You either have a heart for the well being of other human beings, or you don't. 

You either have a mind to do the right thing, and go the extra mile, or you don't. 

You either strive to do your part, and your best so that the team, of which you are a part, will succeed or you don't. 

When it's all about you; when it's all about titles, money, or being seen, preventable mistakes, unwise decisions, setbacks and failures are imminent.  

Health care is big business. 

It's refreshing to see health care provided, where the bottom line is the restoration of ailing people back to their daily lives and routines. 

For some workers, providing care isn't just a job, it's a calling. It's a ministry. 

It matters greatly where ailing people go, once discharged from hospitals. It can be the difference between major setbacks, and awesome victories. 

By being given, or by usurping authority, however, selfish, clueless, disconnected, profit-motivated people, ascribe to others what they would never tolerate for themselves. 

The unacceptable, uncomfortable, inhumane, cheap, substandard, and mediocre treatment some patients receive, would never be allowed. 

As long as it doesn't inconvenience or impact them, apparently, it's just fine for you and yours.

The research involved in securing excellent skilled nursing and rehabilitation facilities, for aging/ailing seniors, is not very different than the research involved in locating excellent schools for young children to attend. 

No one wants their impressionable child to go just anywhere. 

There's probably nowhere that's ever good enough, but you can certainly pin down high performing places that have outstanding reputations for success. You won't just settle. So much is riding on your decision. If you care, and know what's available, you'll homeschool if you have to. 

Family caregivers feel the same way. 

They'll assume the in-home responsibility themselves, but some ailments demand substantially more than a caregiver can provide. 

Caregivers, therefore, need help, but because of everything they know, and everything they've seen and experienced, not just any old help will do. 

There's no walking away for the caregiver. Family caregivers are the greatest advocates, and the most viable and reliable sources of information concerning the ailing person. 

A caregiver's input and presence is critical. Sadly, and too often, a caregiver's own health, family, plans, financial stability, employment status, is upended, but few see it this way.

Why is the “skilled nursing facility search” so challenging for some families? 

 The answer is "Location. Location. Location". 

There may very well be a facility that's close to home, but would you send a stray dog there, let alone your loved one? 

Why are facilities ever under-performing; understaffed? 

Why isn't there a skilled nursing facility adjacent to every hospital--large or small? 

Why isn’t every hospital a level 1 facility?

Why is there not a push for continuity of care, no matter where a senior goes to recover, after being discharged from a hospital?

If medical issues preclude your loved one from returning home, (where you know what kind of care will be provided because you're the one providing it), you then want to find and secure a spot in the very best facility available. 

If, for whatever reason, your loved one can't return to the comfort and familiarity of their own home, you want them to be where their history is known, their condition is thoroughly assessed, and an intelligent plan for care is established. 

You want them to be where they can thrive, be encouraged, motivated; be safe, respected, and heard. You want them to be in a sanitary, well-kept, state-of-the-art environment, where their needs are met by committed, highly qualified, caring, skilled individuals. 

Unfortunately, your zip code doesn't always deliver, so you have to search...and search...and search. 

You may not get help from case managers, because of restrictions placed upon them. 

They should be able to recommend, and confidently point you in the direction of facilities that function excellently, and away from veritable dungeons, but they can't. It's disappointing. 

Some searches, for skilled nursing facilities, yield horror stories of abuse, neglect, and lack. 

You wonder how some places are even allowed to remain open for business! 

What is conveniently located and accessible, for able-bodied people, isn't always what's best or even acceptable, but many families have no choice than to surrender their loved ones to people and places that are wholly unsuitable and discouraging; 

places that do nothing to promote wellness; 

places that make you realize that you and your loved one will soon be back in a hospital emergency room.

When you DO have a choice about skilled nursing facilities, however, make it. 

Do your homework. 

Visit. 

Ask questions. 

Don't settle. 

Fight. 

Advocate for your loved ones. 

They deserve to be treated with dignity, kindness, and empathy. They deserve the best. 

If they can get the best--if it's doable--it's worth the cost, distance, time, sacrifice, and effort for your loved one to be a recipient of outstanding medical care, physical and occupational therapy, emotional and spiritual encouragement. 

After all, it's about them.

Mediocrity, laziness, and apathy are unacceptable in health care. The care factor must be restored. 

People have to matter. 

The tales I've heard from people seeking, or who have experienced the goings on at skilled nursing facilities, are heartbreaking. 

In some places, people are left to languish, allowed to fall, and their conditions are allowed to worsen or go undetected. Their cries are unheard, and unanswered. Their complaints are ignored, or minimized. Medications are forgotten or skipped.

So many seniors reach a certain age, and are treated as if their lives are over. "Oh he's old. let him sleep. He's tired". 

I had someone ask me, "Why do you want him to go to the hospital? What are they going to do there?" 

I couldn't believe my ears.

 
In some facilities, patients are given pain medications to the point where they are positively catatonic or incoherent. 

Patients' wounds are left untreated. 

Those, whose meals should be attended, have trays placed in front of them, and the food just sits there and gets cold. 

Rest rooms are unclean. 

Room temperatures fluctuate. 

Flies and fruit flies abound. 

Equipment is broken or malfunctioning. 

Food is unappetizing. 

Patients are left to sit, or lie in their own filth, or aren't turned in their beds. 

Someone decided that human beings only need to be showered twice a week or not at all

Patients are left unattended to wander off.

They're left in their wheelchairs to fall asleep in uncomfortable positions. 

Trash litters floors. 

Workers cop attitudes, and act as if they're being bothered if they're asked to attend to what is clearly within their job descriptions. 

Excuse after excuse is made when preventable situations occur. 

It is no wonder why many families do what they have to do to keep their loved ones at home. 

It's why in-home, full-time caregivers need to be supported.

The skill factor has to be restored to skilled nursing. Caregivers shouldn't have to show professionals what to do. You should never wonder what wouldn't have been done, or what would have been allowed to suffice, had you not paid a visit. 

For caregivers, visiting loved ones daily in many skilled nursing facilities has become a second, mandatory job. 

With some facilities, it becomes evident, early on, that the more eyes on your loved one, the better. 

You have to attend and participate in therapy. 

Learn. Take notes. Speak up. 

There's something about showing up consistently, and at random times of day, that gets some workers moving and motivated, in ways they may not, if they sense that a senior is alone in the world. 

When you show up, some workers are more attentive, efficient, friendly, and conscientious. 

You don't have to hover, meddle, or be a tyrant. 

Just show up. 

Why many skilled nursing facilities are so woefully substandard, though, breaks my heart. 

Who's hiring? 

What are the criteria and qualifications for employment? 

It is absolutely mind boggling why people, who don't like people, particularly seniors, accept jobs working with people.

A family should never hear a case manager whisper, "If you truly love your family member, don't send them there." 

After all, human beings are the clients. 

Anywhere seniors are admitted for long term care, there should be more than enough nurses, and CNA's. There should be full-time staff doctors, podiatrists, cardiologists, wound care specialists, therapists, dieticians, psychologists, beauticians, activities directors, counselors, etc. 

There should be people who have a heart for people more than profits; people who see the value of a pleasant, clean, neat environment. There should be people who are invested in a patient's successful plan of care.

Sigh.

 
I need to be ridiculously, independently wealthy. 

If I could, I'd buy land, east of the Anacostia River, in zip codes 20032, and 20744. 

To serve the area's aging population, I'd build two new, level 1, state-of-the-art, fully staffed Inova-like hospitals, designed with walkways attached, that lead to fully staffed, skilled nursing and rehabilitation facilities.

I can dream.