Caregiver to my wife since 2006

My role as caregiver started in earnest in 2006. Here’s what I remember:

My wife wakes me up at about 1:30 in the morning to say that she can’t pee. She has to go, but she can’t.

We eventually show up at the emergency room of the University Hospital. The physician asks if my wife has “Ghee-yam-bo-ray” (Guillain-Barre) syndrome* or myasthenia gravis**. Never heard of them.

The physician has only one ear.

My wife tries one more time to pee; now it’s difficult to walk. The catheter goes in. An incredible amount of fluid comes out. She starts to complain about severe pain just from the light touch of the sheet on her legs. Even a sudden draft of air bothers her.

The orderly arrives to take my wife away for a stat MRI. We say goodbye. I have to leave so that I can get our daughter off to school. We expect that I'll pick her up later that day.

When I come back, I find out that she's been admitted.

*Guillain-Barre syndrome
**myasthenia gravis

@SquarePegGuy it sounds like you have been through a lot with your wife.

Besides the stress of dealing with her and her situations, how are you coping with things? I am a caregiver also and I have to make a conscious effort to do self care and not let myself become part of the problem by getting frustrated or angry. It is not easy.

CANDC

[If you want me to see your reply to this post please include @CANDC in your message - not in requoting my message]

Thanks for asking, @CANDC! I'm doing okay.

I understand this very well: "not let myself become part of the problem by getting frustrated or angry."

I tend to be not too empathic, so I'm a bit shielded by the trauma of medical issues. But the job can be stressful.

I get most anxious about money. I'm frugal, so I can cope with tight finances. I don't have a lot in savings to fall back on, but we have a Care Credit card account that provides 0% APR on medical, dental and veterinary bills. And I have good credit, so I can tap into home equity or qualify for 0% APR offers.

I do meditation and breathwork. I have a sleep disorder, so I fall asleep very (too) easily.

I underwent a neurological evaluation in September and was diagnosed with Major Depressive Disorder. So I started a low dose of Effexor and began talk therapy in October.

As my wife undergoes an MRI, I send our daughter to school and then call my workplace to get the day off. The secretary’s response reminds me of the day I called in to work twenty years ago to tell them my father died.

I go through the house. Get some of my wife’s clothes, her cellphone charger, toiletries and makeup bag*.

I return to the hospital and learn that my wife has been admitted. They say they weren’t sure where to put her at first. The condition is so rare – fewer than 1 in 100,000 people get it. Eventually they choose the oncology ward because of its elevated infection control protocol. Huh?

The neurologist gives the diagnosis: Idiopathic transverse myelitis**, inflammation of the spinal cord.

She is given an IV of corticosteroids at a high dose to reduce the inflammation. This greatly weakens the immune system, which is why she is placed with cancer patients. Another IV is given for pain treatment.

My wife seems fine from about the waist up. She cannot walk. Her leg muscles are rock hard – they are in a constant state of contraction. She’s in good spirits.

She tells me that she gets visitors. A doctor will show up with a gaggle of med students. They ask questions. She answers, pleased to be the center of attention. They will never see another patient with transverse myelitis for the rest of their careers.

I bring our daughter to visit. At first, the head nurse refuses – the protocol prohibits children from entering the ward. They harbor too many pathogens. But eventually she relents -- mother and daughter are united.

As "Mr. Mom" I treat my daughter to Chinese food, my homemade bachelor food, casseroles provided by her classmates or neighbors. We go on day by day.

* The makeup bag turns out to be a great indicator of my wife’s mood and condition.

** Transverse myelitis

Following. And thinking of you.

There is great rewards to be had in having disabled people do things on their own. I was a CNA when I worked my way though the university. It would be far faster and easier to dress people than to help them help themselves. But there is much self esteem to be had by having them do as much as they can. The fact that your wife does go get her snack when she doesn’t want to wait shows she can do more on her own. That’s to be encouraged. It’s mentally strengthening to help yourself.

@SquarePegGuy sorry for the loss of your lifestyle and having your wife so unable to use her legs. Grief can pop up its head. It is a change of a relationship which can be interpreted as a loss.

CANDC

[If you want me to see your reply to this post please include @CANDC in your message - not in requoting my message]

@CANDC, @Nammu, @unaluna

Just want to clarify that I've been describing an event that happened in 2006. My wife is not in the hospital, and she is able to walk at this time (and the daughter is living in TX). The lifestyle certainly has changed, but things have stabilized. Our relationship definitely has changed, as you so perceptively noted, CANDC.

Sometimes a person just has a need to talk about a trauma, even if it happened years ago. I’m glad things have stabilized. Feel free to keep talking about it.

@SquarePegGuy I am glad your wife can walk again. When my partner had their first in patient hospitalization, it dawned on me that our relationship had changed due to circumstances. It was no one's fault. It just happened.

What you write reminds me of when my dad had a stroke in the early 80s, and my mother's taking care of him for the next 7 years or so. We all struggled to live a "normal" life.

There were moments of humor. About 6 months after the incident, my dad announced at a sunday family dinner, "i think im pretty much back to normal now, but too bad that wasnt better to begin with!" He and i laughed, but my mother and my brother were both horrified. I thought it showed his acceptance of the situation, but they thought it expressed our denial.

Some years later, my mother expressed her frustration saying, "im gonna run away!" My dad instantly replied, "Take me with you! Im not having any fun here either!" Mother, completely lacking a funny bone, goes, "What? Im trying to get away from you! Why would i take you with me?"

Thankfully, my mother when she passed did not linger, as she had already expressed her plans to be even more ornery and disagreeable if she became infirm.

That totally sounds like something I'd say. LOL

Thanks for sharing, @unaluna!

[more from 2006...]
One of my wife’s nurses is a beautiful, soon-to-be married young Indian woman. Her slender hands are the color of patina bronze, and they’re adorned with an intricate Henna pattern. She is talking to my wife about her upcoming wedding while replacing the painkiller in the syringe infusion pump. She forgets to swing the plunger over the syringe; I tell her that it’s not connected. She checks the tubing, but then I point out the error. She flashes me a smile of gratitude, but I’m the grateful one because I just prevented a bout of agony for my wife. The drip is behind the gurney, out of my wife’s view.

The painkiller is an opioid, which causes constipation. Bowel movements are infrequent and large when they happen. She tells me that the Pastor visited during one. What luck, right?

Our daughter is upset this day. She turned in a big assignment to her third grade teacher by leaving it on his desk. But he never saw it. Thus, when the assignments are graded, our daughter is the only student who doesn’t get awarded for the effort. She is terribly upset. My wife, although she’s incapacitated by spinal inflammation, gets the school’s Vice Principal on the phone, tells her what happened with so much emphasis that the Vice Principal herself visits the classroom the very next day to personally hand-deliver the award to our daughter. My wife can’t move herself, yet she can move others.