Journey Through The Maze: A Family Caregiver's Tale

Sometimes in life, you just can't pick up where you left off.  When I decided to relaunch this blog so much had changed in my life that simply pressing the pause button to resume writing was not an option, just as there have been no quick fixes for restarting the life that I placed on hold to be a family caregiver.  So I dropped the blog's previous name relinquished the domain PointOfView316 and chose a name that reflected the journey which my life has taken. 

The new name, "Journey Through The Maze" was partially inspired by the 150th anniversary of Lewis Carroll's story "Alice in Wonderland".  And while I certainly didn't fall through a hole while chasing a white rabbit, I have been on a strange and unexpected journey through the world of being an adult orphan and former family caregiver.
  
Why do I draw parallels between a caregiver's journey and Alice in Wonderland?
For me being a family caregiver has been a mashup between the experiences of Alice and the Cheshire Cat. 

Sparksnotes gives us this brief synopsis of the two characters:

"The tension of Alice’s Adventures in Wonderland emerges when Alice’s fixed perspective of the world comes into contact with the mad, illogical world of Wonderland. Alice’s fixed sense of order clashes with the madness she finds in Wonderland. The White Rabbit challenges her perceptions of class when he mistakes her for a servant, while the Mad Hatter, March Hare, and Pigeon challenge Alice’s notions of urbane intelligence with an unfamiliar logic that only makes sense within the context of Wonderland. Most significantly, Wonderland challenges her perceptions of good manners by constantly assaulting her with dismissive rudeness. Alice’s fundamental beliefs face challenges at every turn, and as a result Alice suffers an identity crisis. She persists in her way of life as she perceives her sense of order collapsing all around her. Alice must choose between retaining her notions of order and assimilating into Wonderland’s nonsensical rules.

The Cheshire Cat is unique among Wonderland creatures. Threatened by no one, it maintains a cool, grinning outsider status. The Cheshire Cat has insight into the workings of Wonderland as a whole. Its calm explanation to Alice that to be in Wonderland is to be “mad” reveals a number of points that do not occur to Alice on her own. First, the Cheshire Cat points out that Wonderland as a place has a stronger cumulative effect than any of its citizens. Wonderland is ruled by nonsense, and as a result, Alice’s normal behavior becomes inconsistent with its operating principles, so Alice herself becomes mad in the context of Wonderland. Certainly, Alice’s burning curiosity to absorb everything she sees in Wonderland sets her apart from the other Wonderland creatures, making her seem mad in comparison.

SparkNotes Editors. “SparkNote on Alice’s Adventures in Wonderland.” SparkNotes.com. SparkNotes LLC. 2005. Web. 29 Jul. 2015.

Yes, my journey both during and since being a family caregiver has definitely been a mashup of Alice and the Cheshire Cat, trying to maintain the calm and objective perspective of the cat while simultaneously feeling that life is spiraling through one insane situation after another with no seeming end to the madness in sight.  

Here's a situation that I described in a previous blog post :

My mother was taken via ambulance to the emergency room of a local hospital at 5 pm on Tuesday, February 16, 2010.  I advised both the paramedics and the attending in the ER that my mother was diagnosed with NPH (normal pressure hydrocephalus) in 2005 (the actually diagnosis was in 2004 but the date was changed to protect my mother's privacy when this was originally posted*)  but recently she had been experiencing a drastic decline in mobility. She had also been complaining of pain in her right ankle, knee and wrist which might be the result of a fracture sustained during a recent fall.  In addition, and not in any way related to a diagnosis of NPH, a large unknown mass had appeared on her abdomen.



At approximately 1 am, Wednesday February 16, 2010, we were still in the emergency room and I had to repeat the same detailed information again to the admitting resident.

  Finally, at 3:30 am, after 11 hours in the ER, my mother was taken to a room. Once again, I provided the nurse with a full description of my Mom's condition.  Later on Wednesday my mother was seen by a neurologist. In fact, I was able to have a wonderful discussion with him when I visited my mother later that afternoon. So far all was going well.

I was very troubled that my mother had had very, very little sleep in over 36 hours but I believed that she was receiving the care that she needed. 

I won't bore you with all of the details so I'll just skip to 11 am Thursday, February 18.  While attempting to determine just who in the hospital was coordinating my mother's care, I was advised that the attending intern/resident in the ER had failed to note anything on her chart about the abdominal mass or my concerns that my mother may have sustained stress fractures during her last fall.  In fact, I have good reason to believe that it was not until I brought the non-NPH issues to the attention of the admitting physician on Thursday that X-Rays of her limbs and a MRI of the abdomen had never been ordered. Needless to say, I was not a happy camper. However, at least now everyone was on the same page and all of my mother's health concerns would be properly addressed. Or so I thought.



Since the hospital was well aware that my mother suffers from NPH, a disease which affects memory and mobility function, I thought certain that they would contact me on Friday morning with her tests results. Unfortunately, not only did the hospital fail to contact me with my mother's test results, a doctor making his rounds on Friday morning told my mother (not I) that she was being released that day. My mother called me at home at 2pm on Friday and informed me that she was being released. After confirming this with the nurses' station, I contacted the hospital's social services office and, in a very forceful manner, asked that they make arrangements to have an ambulance taken out of their establishment asap. Yes, I ranted and now, of course, those rantings are being chalked up to caregiver burnout.

 My mother's discharge papers simply read:

Discharge Diagnosis: Normal Pressure Hydrocephalus
Follow up with your office in one week
Activity: as tolerated:
Diet: regular
Discharge to: Home

Oh how I wish that I could tell you that this hospital visit was atypical but I can't.  Scenes like that this one became the norm after my mother retired and I had left my job to be her full-time caregiver.  Sadly many people, even those entrusted with maintaining the public's health, seem to have a general disdain for the elderly and those whom they perceive as not actively contributing to society.  The sentiment, "what have you done lately" seems to have replaced the "golden rule"  as well as the hippocratic oath.  And it certainly didn't help that both my mother and I were women. 


As Hoffmann and Tarzian cited in their article, "The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain": 

"There is now a well established body of literature documenting the pervasive inadequate treatment of pain in this country.  There have also been allegations and some data, supporting the notion that women are more likely than men to be undertreated or inappropriately diagnosed and treated for their pain.

One particularly troublesome study indicated that women are more likely to be given sedatives and men to be given pain medication.  Speculation to why this difference might exist has included the following: Women complain more than men; women are not accurate reporters of their pain; men are more stoic so when they do complain of pain 'it's real'; and women are better able to tolerate pain or have better coping skills than men." 

In essence the medical profession is trained to believe that female patients simply can't be trusted to relay their own feelings.  Insanity.

spinning in circles

Of course caregiving isn't solely about hospital visits and patient advocacy.  There's the day to day feeding, bathing, and medication management duties as well as the legal and financial responsibilities. Some days you find yourself spinning in circles

praying

If you are a religious or spiritually minded person you spend a great deal of time in prayer.

warrior woman

You spend a great deal of time advocating for and occasionally literally fighting on behalf of your loved one.  In her article  "Call to Duty:  The burden that women take on far more than men do" Allison Pugh writes,

"Some people run towards commitment, not away from it. We all know someone like that — those who take on the care of a child with special needs, an elderly person with Alzheimer’s, or a mentally disturbed spouse.

It is difficult to estimate their numbers, but there are certainly millions of these heroes in the United States. More than 15 million Americans give unpaid care to someone with Alzheimer’s — three out of five of these reporting high or very high emotional stress in doing so — while more than half report facing significant financial strain. Most of the 5.9 million children with severe disabilities in the United States are taken care of at home by their parents and families.

Women are more than twice as likely as men to serve as unpaid, informal caregivers, and low-income caregivers spend more time giving care (42 percent more time than those who make more than $50,000). Families with income under the poverty line are more than twice as likely as others to provide more than 30 hours of unpaid assistance each week to elderly parents, according to one 2005 study. And a National Alliance Caregiving report found that “high-burden” caregivers spent an average of 46.9 hours weekly giving care. Often, caregivers spend years of their lives providing this social service at profound cost to themselves in terms of the strain on their personal lives and careers."

Read the rest of the article at:
 http://nytlive.nytimes.com/womenintheworld/2015/07/03/the-burden-women-take-on-far-more-than-men-do/

weathering the storm

However you spend most of your days trying to bring some measure of joy and beauty into the life of your loved one.  And you spend a lot of time in the virtual community of fellow caregivers.  In fact, the internet and caregiver support groups become a life line for family caregivers, something that seems quite abnormal to most of their real world friends and extended family.   



In their 2012 article titled "Family Caregivers Online" posted by the Pew Research Center  Susannah Fox and Joanna Brenner wrote:

"The internet is an integral part of the lives of people who care for loved ones.
Thirty percent of U.S. adults help a loved one with personal needs or household chores, managing finances, arranging for outside services, or visiting regularly to see how they are doing. Most are caring for an adult, such as a parent or spouse, but a small group cares for a child living with a disability or long-term health issue.
Eight in ten caregivers (79%) have access to the internet. Of those, 88% look online for health information, outpacing other internet users on every health topic included in our survey, from looking up certain treatments to hospital ratings to end-of-life decisions.
Caregivers are significantly more likely than other internet users to say that their last search for health information was on behalf of someone else: 67% vs. 54%. Just 29% of online caregivers say their last search was solely focused on their own health or medical situation, compared with 40% of non-caregivers who go online for health information.
Caregiving is associated with being online and with online e-health behaviors.
Caregivers are somewhat better educated and more likely to be middle-aged (ages 50-64) than are non-caregivers. However, statistical analysis shows that when comparing people of similar age, education and other demographic characteristics, being a caregiver in and of itself is associated with a greater likelihood of using the internet, particularly to get and share health information.
Caregivers are highly social, both online and offline.
Caregivers are more likely than other internet users to take advantage of social tools related to health:
    •    44% of online caregivers have read someone else’s personal health story online, compared with 29% of non-caregivers.
    •    28% of online caregivers who use sites like Facebook have followed their friends’ personal health experiences or health updates, compared with 21% of non-caregivers who use such sites.
    •    26% of online caregivers have looked online for someone with similar health concerns, compared with 15% of non-caregivers.
Caregivers are also more likely than other people to tap into their offline social networks when they need health information, care, or support. The last time they had a health issue:
    •    70% of caregivers say they turned to friends and family members for information, care, or support, compared with 47% of non-caregivers who did the same.
    •    28% of caregivers say they turned to others who have the same health condition, compared with 17% of non-caregivers who did so, either online or offline.
Caregivers are active health care consumers.
Caregivers are more likely than other internet users to read online reviews of drugs, clinicians, and medical facilities:
    •    38% of online caregivers have consulted online reviews of particular drugs or medical treatments, compared with 18% of non-caregivers.
    •    21% of online caregivers have consulted online rankings or reviews of doctors or other providers, compared with 13% of non-caregivers.
    •    20% of online caregivers have consulted online rankings or reviews of hospitals or other medical facilities, compared with 12% of non-caregivers."

In summary, family caregivers live a dual reality that blends a virtual online world with their offline world. 

By now you're probably starting to see the parallels between "Wonderland" and the "The Maze" yourself.

I am often asked if I would become a full-time family caregiver all over again knowing what I know now.  Most of the days the answers is "yes but I would do things very differently"  but many days the answer is a definite no.  Both responses of course are based on knowledge that I could have only acquired by experience and neither answer reflects my love and respect for my late mother whom if she could speak today would not be at all happy about how things have turned out for me.  Of course, my story is still being written.