I’ve read some wonderful, well written, articulate articles on The Caregiver Space. Textbook perfect! Some of them, in my opinion, worthy of an award. In the perfect world of a caregiver, or at least a sane world, following many of the guidelines I’ve been reading, life would be much better for the caregiver. And yes, all or most of what I’ve read, I believe, would truly be in the best interest of the patient and caregiver. But what if you reside in the “insane” world of a caregiver, where reasoning, rationalizing, thinking on your feet with little or no sleep is required on a daily basis? Remember, these articles are written as general guidelines, and are to help those that in many cases can be helped.
Food for thought. I was a caregiver for my wife Annie, who was fighting a particularly nasty blood cancer. Each night before I gave her nighttime medications to her, I checked her ostomy pouch for any leakage. Any signs of leakage meant I had to change her bag. On one particular night I noticed a trace amount of yellow staining around the seal. I immediately knew there was a leak, and the bag had to come of immediately. The yellow staining is indicative of stomach acid. Not good! Acid will fry the skin in very short order. Before I took the bag off, I always made sure to cover any exposed skin area so there would be no germ transfer from feces. Once the skin was covered I’d remove the bag. On this particular night she was experiencing diarrhea. So the body waste was shooting out about 6 inches or more. That was around midnight. I know this because my daughter Melissa called me to check on her momma before she went to bed.
The problem with Annie was, she had an Ileostomy which tend to always be putting out waste or drainage. And when there is waste or drainage, there can be no bag placement as the seal will not stick. This was my worst nightmare when changing her bag–when will the drainage stop? So while Annie slept peacefully in her hospital bed, I set beside her in her wheelchair waiting for the drainage to stop. About half way through the night I saw what I thought was the perfect opportunity to put the pouch on–I needed a four minute window. So I immediately started heating the rubber seal that goes around the stoma (the end of the small intestine where the body waste comes out) with a hairdryer. Once heated it could be molded to fit over the stoma, sticking to the skin, and the bag would then be placed over the stoma too and stick to the seal But fate was not on my side and the body waste started coming out again. That event was replicated a few more times. At 7:30 A.M., Melissa phoned me on her way to work to check on her momma again. I told her I couldn’t talk at the moment as I was just finishing up putting the pouch on. She was a bit shocked, but such was the chaotic life of this caregiver. So there was rarely such a thing as a sleep schedule for me, but when there was, it was 2 A.M. to 6 A.M.
My Sleep Solution
The morning of this event I could not just get up after changing the bag and say, “Annie, I’m going to go get some sleep honey.” Not even a chance! It was time to start her day. But I had a plan–sleep when she sleeps. I knew she’d have a two hour nap or so in the afternoon, and I could nap, too. So what I did when she fell asleep, was pull her wheelchair up beside her bed, put her hand in mine, then lay my head down on the bed and nap. By holding her hand, if she moved I’d feel it and wake up.
Backdrop to this event: Annie was at home, but her condition was serious to critical. Two weeks prior to this event while in the hospital she had surgery and 18 inches of her intestines were removed, creating the ostomy. She now had a feeding tube as well, with no mobility. She weighed seventy-nine pounds and was essentially dying. As her loving caregiver husband, I had the Power of Attorney to choose life over death, or as some would say, death over life. I chose life and fought off two aggressive attempts to put her on hospice and took her home. However, the hospice company honored a request by me, and made sure I had all the equipment I needed to care for her at home when we got there. I brought her home on a cold February night after 51 days in the hospital, and by doing so we ended up making our “Last Summer,” the “Best Summer Of Our Lives,” as we made a box full of new memories that I still cling to today.
You can learn more about Bob’s caregiving journey at becuaseofannie.com