Frangulation. Don’t bother Googling it or looking it up in the dictionary because I made it up. I’ve been trying for weeks to find a way to express the witches’ brew of emotions I’ve felt as a 24/7 caregiver and there is no one word that adequately encompasses those feelings. So I invented one that captures as many emotions as possible. Frangulation is the fear, frustration, fragility, anger, anxiety, guilt and exhaustion experienced all at the same time by many round-the-clock long-term caregivers. There’s also a feeling of strangulation mixed into that poisonous brew because you often feel as if the very life is being choked out of you.
This is not a pretty picture, but I tend to think it’s more real than what we see on TV or Facebook. It’s just one of our culture’s dirty little secrets that most of us would rather not think about. If you haven’t yet experienced this type of caregiving (and I hope you don’t), it’s hard to truly understand the full scope of what someone feels. I’m sure I didn’t understand until I paid some dues as a caregiver. To put things in perspective, I’ve only been in this situation for about 18 months, which is short-term compared to many others. Since I don’t presume to speak for everyone, I’ll speak for myself and you can see if it makes sense in your world.
Why do I experience frangulation? I’m frustrated and angry with my husband (the patient), the medical community that seems to have few answers and rarely asks how I’m doing, and the larger culture in which this type of caregiving is increasingly common yet there are few allowances for it. Medical providers tell me it’s quite common for the caregiver to become ill and even die before his or her chronically ill spouse. Just think about what all those emotions can do to our physical bodies.
I feel fragile and anxious because I can’t stop the progression of his chronic illness any more than I can stop a runaway train. Some of his medical providers tell me that he is not an invalid but only thinks he is and that I must apply more tough love. Apparently, I’m one of the causes of his continued sickness. Yes, blame the caregiver because he or she is the easiest target when there are no other answers.
Other providers say he’s very ill with more diagnoses than will fit on the average medical form, he won’t get any better and he’ll just have to “live with” whatever he has. They can’t explain why he is so profoundly debilitated. The cardiologist says it’s not his congestive heart failure. The oncologist says it’s not his leukemia. The kidney specialist says it’s not his kidney disease. And so on. So no matter what I do, like Humpty Dumpty, he’s too broken to put back together again. I sense that the doctors have written him off as not a good prospect for further surgery or treatment. He’s a lawsuit waiting to happen. People have suggested that we find and drive/fly to some unknown doctor hundreds of miles away who might have an answer. I can’t even begin to wrap my head around the logistics of such a trip since he can’t sit very long and needs help in the bathroom.
Then there’s the fear and guilt that no matter what I do or don’t do, it will be the wrong thing in someone’s eyes whether his, the medical community’s or even mine. If I don’t remind him 20 times a day to do his physical therapy exercises or take his medications or perform a needed test, it doesn’t happen. If I constantly remind him, he gets angry and lashes out, but if something is not done, I am the one questioned about why it wasn’t done.
The exhaustion is self-explanatory. I can’t remember when I’ve had an uninterrupted night of sleep, and all the house chores, dog care and his care management fall to me. I wouldn’t mind doing all those things if I felt he was a participant in the management of his illness. We’ve all seen those inspiring obituaries about the “courageous fight” someone waged before they died, and I wonder if those are lies or if my husband is made of different stuff. All he wants to do is lie in front of the TV day and night and seemingly wait to die. A nurse friend of mine says that many times patients just get tired of all the poking, prodding and pain and don’t want to go on. Our living room has become God’s waiting room.
He has become all the people he criticized when he was a physician’s assistant—people who didn’t try, people who stayed home from work for a slight cold, people who prolonged their ill state for whatever reason. He was proud of the fact that he once conducted a workshop while leaving the room repeatedly to vomit. Countless people have tried to encourage him and cheer him on to recovery, but he fights every suggestion they offer to get up and move and begin to do more things for himself. His favorite phrase is “I heard you the first time.” But nothing changes.
The home health physical therapist is coming back next week to discharge him for “noncompliance.” He’s tired of wasting his time—time that could be spent with those who want to get well and get back to their lives. Although I’m sad to hear that, I totally understand. Most of the other home health providers have already given up and signed off, or he has refused to see them. He has unflattering nicknames for them all and delights in telling them to their faces. It doesn’t seem to bother them because they tell me at least they don’t have to live here with him 24/7.
A fellow caregiver expressed her anger and frustration by saying, “you do and you do and you do, and they don’t do. They can’t do.” She’s really not sure if her loved one can or can’t. Yes, you’re never sure if they’re capable of doing more although sometimes you get clues. Recently I left him alone for a brief period while I went to a doctor’s appointment (a luxury for most caregivers). I had told him about the appointment and when I would return, but while I sat with the doctor, my phone rang repeatedly and, while apologizing profusely, I finally had to take the call. He demanded that I come out of the bedroom immediately and help him go to the bathroom. I told him that was impossible since I was at least 20 minutes from home. He had to take care of things himself, and did with no problem. Yet, as soon as I returned, it was back to business as usual.
He’s waiting to die, and I want to live out loud. It’s not a good pairing. In fact, Team Wilson has split down the middle as we each retreat to our own world—him to the TV and sleep, and me to my writing and dreams of once more being able to travel together, run my business or even go out to a restaurant or concert. We’re no longer a team that works together to achieve the goal of his recovery. We’re two individuals who battle about every aspect of his care from proper diet to when to put on pants to how often to take a shower. This is a man who used to be almost fanatical about every aspect of his hygiene and now looks like the main character in The Revenant.
I look in the mirror and notice new wrinkles, along with spreading acne. At the age of 68 this is a cruel paradox. I have a teenager’s problem at the same time that I no longer get carded when buying wine at the grocery store (they ask for ID if you look under 40). I have always looked at least 15 years younger than my actual age but now not so much. My skin used to look beautiful but no longer. These may seem like trifles to focus on in the middle of my husband’s serious illness, but they are just the latest things that have been stripped from me. He and I are prisoners under house arrest, likely for the rest of his life. I do get special dispensation to go for groceries, his medications and sometimes church.
This week I decided that I was done begging him to do what he needs to do to make some improvement. As a former change management consultant, I should have known that badgering someone to change behavior would not work. That old saying, “never try to teach a pig to sing because it wastes your time and annoys the hell out of the pig” is true. No more singing lessons in this house. I’m not leaving physically, but in many ways I’ve already moved on mentally and spiritually. I used to think that our love, our marriage of 40 years, would carry us through this nightmare. It’s not enough. No more trying to save someone who doesn’t want to be saved. I need to save myself now.
Author’s Note: My husband passed away in July 2017, 6 months after this post was originally published. Since then many caregivers have told me they felt similar emotions.
Originally published at marywilsonsblog.wordpress.com