Live to fight another day or fight to live another day…welcome to the struggles of longterm care. I wrote those words, and many that follow, last fall – long before I recognized the perils our vulnerable populations would face during a pandemic.
After a recent call from the nursing home, I realized I often feel like I’m walking a tightwire trying to decide whether to live to fight another day or fight to live another day. For the past three years, I’ve been in charge of the care of my mother’s first cousin who recently turned 99. Three months into my unanticipated stint as her POA, Trustee, and Health Care Proxy, she broke her knee.
Let me go back a moment. I began to fill all of those roles when my mother had a stroke and could no longer speak or take care of her own affairs. Unbeknownst to me, I was listed in all of the legal documents for her cousin as the successor. Yes, you read that right. I was not asked OR informed that I had been selected for those duties.
I’m not complaining. I’m just letting you know that I had not mentally, emotionally, or otherwise prepared for this eventuality. At first, it was just a matter of sorting through a mountain of records; getting power-of-attorney and contact information changed with banks, investment firms, insurance companies, social security, and the IRS; and paying bills. The work wasn’t fun, but it was routine.
Two months later, my mom died leaving me with an entangled mess of property to sort. A month after that, I got the call that added a whole other level of decision making to my responsibilities.
I was on the phone with an EMT who had just picked my cousin up off the floor of her home. He actually thought she was just bruised, but I knew I needed to make the three hour drive to make sure. In the meantime, I sent my sister to keep an eye on things.
When I arrived, the cousin was in bed for the night. I stretched out on the couch. In the morning, it was clear she had more than a bruise and we were headed for an X-ray…at the hospital…it was Easter. She couldn’t bear any weight on her knee and I was not strong enough to get her to the car.
In rapid-fire fashion, I went from trying to work the paperwork puzzle my mom had left me to deciding to call 9-1-1, choosing an orthopedic doctor, pushing for one more night in the hospital (luckily, the hospital social worker tipped me off that Medicare wouldn’t pick up the hospital tab unless we stayed three nights), then to picking a rehab facility while listening to my screaming patient (who was in pain) and explaining to her three times every five minutes what was going to happen and why in what I hope was a calm manner. You could call it orientation, bootcamp, or a rude awakening, but it was just the beginning of an ongoing fight to ensure my cousin continued to have the best quality of life available.
As I disseminated updates regarding her health and mental capacity, it has become clear that few of her friends or our relatives have had experience with dementia and longterm care. This leaves them unprepared should they be thrust into a similar situation. I now believe it is important to share what I’ve learned.
Let’s start with one overarching reality. If you are in a position to need a longterm care facility, you also need an advocate. Period. Choose one now. (Please get consent!) When it comes to the quality of your everyday life when you are aging, ill, injured, or incapacitated, this is as important as an advance directive.
A need for that level of care means you have some sort of limitation. Limitations can make it difficult to impossible to get the quality of care we all desire. Dealing with the system can exhaust even the most energetic, healthy, well-balanced person you know. It is simply beyond the reach of most longterm care residents.
My mom’s brief stay in a rehab facility sent my stepfather into a mood of contentious petulance. I understood his frustration, but because he didn’t know when to drop an issue and live to fight another day, the staff had a desire to ignore any call to mom’s room. And who can blame them? They knew they were headed for a fight.
So goes the great balancing act of navigating longterm care. As the advocate, an unwillingness or failure to be a visible presence, question, push, talk to pharmacists, or get the doctor involved can mean your resident continues to receive medication that is causing diarrhea, bleeding, restlessness, or hallucinations.
It can mean that food allergies are ignored. It can mean that your impaired resident who cannot lift her dominant hand is left alone to try to eat with the other hand each and every meal even though she’s drastically losing weight. It can mean that your resident is drugged to the extent he cannot stay awake. Things can quickly reach the point at which you must fight to live another day.
On the flip side, too much pushing, monitoring, and interference may mean your resident’s care becomes less attentive, less responsive, and less cooperative. Any longterm care staff is made of humans who have a chronically stressful job and are often underpaid. They can run out of patience with interference. Some may choose to take that out on the resident.
Even the best facilities can be crazy-making. Choosing and acting as a Health Care Proxy requires careful consideration.
Here are some things to contemplate as you make care decisions:
What are the qualities needed in a Health Care Proxy?
It is critical that a Health Care Proxy be reliable. It may be tempting to choose a person whose position in the family makes them seem appropriate, for example: a spouse or eldest child, but it is possible a trusted friend who is more reliable would be a better choice. Before you decide, consider that a time when your care hangs in the balance is not the time for hoping someone will show up. You need to know they will.
A medically fragile, severely ill, injured, or elderly person’s condition can change quickly. If the Health Care Proxy cannot make decisions in a timely manner, it may hasten death or disability.
Always choose someone you trust to have your best interest at heart. That person can have a different philosophy about invasive treatments or medication intervention as long as they have the ability and willingness to set aside their point-of-view in favor of the guidelines you lay out for your own care. If you do not choose to set guidelines, it may be best to choose someone you trust who is more in line with your point-of-view.
In order for you to feel safe, especially if you should develop dementia, it is important to choose someone who will tell you the truth. That doesn’t mean someone who is harsh or blurts out things you don’t need to know, but a proxy who is willing to softly and kindly tell you you cannot go home if you are never going to be able to go home. In other words, choose a person who can deliver hard truths with compassion and calm.
Telling the truth to dementia patients not only shows them respect, it helps prevent added anxiety. Much like preverbal infants, people with dementia are highly attuned to what’s going on beneath the surface. They can see right through deception even when they can no longer process language.
The best care decisions will be made by those who can attend major doctor’s appointments and have time to seek additional information and education when needed.
A Health Care Proxy will not automatically receive sufficient information regarding medication side effects or drug interactions. They may need to learn on their own about different types of lifts and chairs or rehab techniques in order to make informed decisions.
Choosing a person whose schedule allows enough time or flexibility to be engaged can make a big difference in the quality of decisions that are made.
Swiftly changing circumstances often require new plans. Having an advocate who can easily adapt will prevent delays and keep plans moving forward.
Serving as Health Care Proxy requires communicating well with many professionals including doctors, nurses, aides, patient techs, physical therapists, social workers, administrators, lawyers, dietitians, and pharmacists as well as the patient. It is important to have an advocate who is willing to ask questions of these professionals.
Some people remain calm in a crisis. Others quickly become overwhelmed or have difficulty functioning. Choosing a calm, attentive, and detailed Health Care Proxy will serve you best.
The Health Care Proxy will have to live with uncertainty, make peace with compromise, and accept that some decisions must be based on a best guess. The weight of making critical decisions and supporting a weakened, limited, or helpless patient will take a toll.
And the patient may not be happy and grateful for those efforts. It is not unusual for patients to be angry with the Health Care Proxy, family, and the whole care team.
Some care situations last decades. It takes fortitude to continue to show up and be a good advocate in challenging situations.
Compassion can bridge many gaps to create a more positive environment for the patient, the care team, the medical team, and the Health Care Proxy.
If you have a sudden change in health status, it will be helpful for your proxy to be familiar with your medical history and plan for care in advance. In reality, this may not be feasible or possible. As long as you choose someone with a willingness to learn, the information can be gathered along the way.
Finding all of these qualities in a single person is a tall order. A good Health Care Proxy does not have to shine in each and every area listed.
The best choice will boil down to these questions:
Who do you trust to do their utmost to give you the best quality of life for as long as possible in accordance with your wishes? Of those people, who do you believe will have the best success navigating the system to accomplish that?
There’s also the flip side to consider. If a loved one comes to you and asks if you will serve as Health Care Proxy, can you and are you willing to commit? If you know that this is not a responsibility you can shoulder, it is more kind to say no up front than it is to say yes and hope your bluff is never called.
The longterm care system has many, many challenges. None of us want to have to think about them, but being prepared in advance to live to fight another day or fight to live another day will make navigating those challenges easier.
Sadly, we now know even the best Health Care Proxy may not be able to override public health policy that puts you in danger. Having an advance directive prepared even if you haven’t yet chosen an advocate is the best way to ensure your wishes will be followed.
There will be much to untangle once we’re through this pandemic. Hopefully, we will improve protections for all vulnerable populations and develop policies, plans, and systems that will keep them safe even during times of public health emergencies. This will not happen without deliberate action, dedication, and valuing those lives.
I hope we will use this opportunity to examine our values and priorities. I just watched a commercially built rocket head for space. We are capable of amazing things. We can do a better job protecting our seniors, prisoners, medically fragile, minorities, homeless, poor, and underserved. What we do with our resources, policies, and energy is a choice.