When Caregiving Gets Messy

post-surgical sweetheart comfort Waking up is hard to doMom has had a very rough 6 months.

At the root of this complicated, draining and scary health journey is the dreaded “D” word.  It’s the health topic no one wants to talk about. People ask how my Mom is doing and when I tell them there is often an uncomfortable silence – it’s a messy subject. People really don’t want to know the details. It’s one of those delicate topics that seem so private and off limits in polite conversation. I have, frankly, avoided writing about it for that reason, using terms like “gastrointestinal distress.” But I have been so focused on it for so long that it seems no different than talking about blood sugar or high cholesterol to me. It happens to all of us. At best it’s an occasional minor annoyance and at worst a chronic debilitating illness that is, in my opinion, the root of all evil.  At least it has been for Mom. I’m talking about diarrhea.

Diarrhea has hi-jacked my Mom’s life, and mine along with it. It was the reason my mom suffered a terrible fall, which resulted in a fractured spine and a very extensive and risky spinal surgery followed by a second one. Those were followed by a blood stream infection (resulting in sepsis), a heart attack, pneumonia, coresungestive heart failure, angioplasty with two stents, several trips to the ER, 40 days in hospitals and 3 months in a nursing facility. It’s a vicious cycle that still has not ended.

Mom has the double intestinal-whammy. First she was diagnosed with Collageanous colitis , a microscopic colitis that can only be diagnosed with an intestinal biopsy,  is difficult to treat, and most often requires steroids. She then contractedClostridium difficile (C diff) in the hospital, a horrible bacterial infection in the colon that is passed around hospitals because sterile precautions are not adequately taken.

People get C diff when they have been on antibiotics and the good bacteria in their gut have been wiped out, creating the perfect home for C diff to flourish. Older adults, children and anyone with a compromised immune system are particularly vulnerable to it. It destroys the appetite, is increasingly difficult to treat and often takes months, and recurrences like Mom has experienced, before it retreats. Just when we thought she was past it – the beast came back and took over her life again. To complicate matters more, steroids aggravate C diff, so the collageanous colitis can’t be treated adequately until we know the C diff is gone.

The diarrhea had actually been alleviated the last few weeks Mom was at the nursing facility. We thought she had conquered it. So when she came home a few weeks ago we were all encouraged and excited for her to keep gaining strength. But three days later the diarrhea returned after a round of antibiotics for a urinary tract infection (another “off-limits” topic, but a chronic condition that should be discussed more, as it haunts many older women and undermines their overall health frequently.) 

Mom is so tired of the constant trips to the bathroom. She lost 10 lbs. because she doesn’t want to eat partially because as soon as she does it seems to come out badly. We constantly battle dehydration and keeping her out of the hospital. So far so good with this recurrence; now I know to constantly give her bananas, potassium, and fortified beverages. I have learned that she won’t drink a large glass of water, but more frequent smaller glasses are less intimidating. Add a packet of flavored electrolyte powder and a straw and she’ll drink it right down.

Mom cannot be left alone at night, as the diarrhea seems to hit her worst then. I don’t want Daddy to deal with the stress of it, as his dementia has worsened so much over the past 6 months of Mom’s illness. So I stay with them every night. We are up 3 – 5 times a night – sometimes for an hour at a time with the clean up process (C diff is only killed with bleach cleaner and I am desperate to prevent my Dad from getting it.)

When I had to travel on business, we paid a caregiver for 6 nights (cha-ching) and my sister came to stay 3 nights. This week I broke down and am paying the caregiver to spend two nights a week. Mom can nap during the day, but I have to work and take care of Dad and her; I have to get some sleep. During the day I am there a great deal of the time and we have paid caregivers who are supposed to come every 2 hours to take her to the bathroom, bring lunch and help Dad. The cost is astronomical. And they are not always reliable, so there are gaps when they don’t come. Most days I am with them, working, making bathroom runs, cleaning up, helping Mom to her chair, helping Dad, dealing with the doctors, nurses, therapists…

I try to take this one day at a time. If I look too far ahead, the thought of this phase of our caregiving journey continuing at this pace is just too overwhelming. It’s hard to see the light at the end of the tunnel at times like these.  Sleep deprivation is the enemy of all caregivers as it robs us of our ability to draw a positive outlook from deep within.

So I focus on the little triumphs. A few nights ago we got 4 hours of uninterrupted sleep. I never thought I’d be grateful for only 4 hours of sleep! But it felt like the greatest gift I’d ever received.

Photo Credit: Amy Goyer

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