Al was in a skilled nursing facility for five months after his most recent stroke, a hemorrhagic stroke that made him a functional quadriplegic. This means he has quadriplegia in terms of lack of function throughout his body, but his condition isn't the result of a spinal cord injury like most quadriplegics. He does have feeling (although probably dulled) throughout his body, and he can wiggle his toes and squeeze our hands. Otherwise, caring for him is no different than caring for a total quadriplegic.
We worked for months to put all the pieces in place to bring Al home. There were days I'd visit him in his tiny, cramped, overwhelmingly warm 150-square-foot room (which he shared with an elderly, crotchety roommate), and he would plead with me, "Please get me out of here!"
It was heartbreaking because he sometimes thought we had abandoned him or that we weren't doing anything to help him. I was hopeful that we could get all the help we needed, but there was a tiny part of me that was terrified that he wouldn't be able to come home.
Because taking care of a quadriplegic is a lot of work! (I bet you figured that out before I even said anything.) And there were countless pieces to put into place before his homecoming.
I prepared myself in every way I could before he finally came home. I pleaded with God to help me to have enough strength to care for him and to be enough for him. I haven't regretted a single day since.
But there have been days.
Oh, there have been days when I reached the very end of myself. My lower back spasmed, my hips ached, my brain was exhausted. (And that was just from getting out of bed!)
I thank God daily for coffee. Sometimes hourly, or even with every taste.
You think I'm joking, but I have a shrine to Juan Valdez in my kitchen.
Nothing compares to that first stimulant-laden steaming hot sip of joe, especially in the quiet of the morning, usually with my favorite kitty on my lap. (Shhh, don't tell the others.)
But then, The day starts. And it looks something like this:
Al's caregiver arrives at 9 AM. We chat for a bit and catch up on Al's needs for the day. Our discussions can range from how he slept to the jokes he's been telling, from his bathroom needs to how we should position him in bed for maximum comfort.
Stop for a moment and imagine this: You have just awakened, and you're snuggling under the covers for a bit longer before you have to get up. But then you get a little too warm and throw the covers off of you. You grab the water bottle by your bed and take a long swig. It's not too long before you have to get up and use the bathroom. Then, you have to decide whether or not you should get up and start being productive or if you want to watch a bit of Netflix before fully engaging the day. You reach for the remote.
Now, imagine the same scenario, but you can't move. You have to wait for someone to come and take that heavy comforter off you so you don't roast. You have to work hard to form the words to ask for a drink of water and hope your caregiver understands you. When you have to use the bathroom, you just go in your disposable brief, and someone will clean up the mess later. If your hand is falling asleep because it's in a weird position, someone has to move it for you. You hope they'll turn on the TV for you before they leave the room.
I can't imagine being in Al's situation. He relies on me (and his caregiver and our kids) for literally everything. It's like being a baby again, except that he still knows and understands what is happening to him.
A day in our life probably looks very different than it does for the average person.
After Al's caregiver arrives and we touch base on his needs, we give him his meds, which get crushed and dissolved in hot water, and a carton of nutritional supplement since he's not able to take all of his calories in by mouth. He gets too tired, or sometimes too bored or distracted, to finish a full meal. Even the act of chewing and swallowing is a chore for him because his body doesn't remember something as simple as swallowing. We have to give him frequent drinks of water, and we engage in other tricks to help him remember how to swallow the food in his mouth.
Except recently, most things that go into his mouth - whether solid or liquid - make him cough violently. So we've had to figure out ways to keep giving him the nutrition he needs. He gets two nutritional supplements per day, which equals 1000 calories, so how do we fill in the rest of his needs?
For now, I've decided on a plan that I hope will work. (Until we can finally get in to see a gastroenterologist and find a dietitian to manage his needs, which has been ridiculously, stupidly difficult and still hasn't happened, although he's been home for three months.)
For breakfast, he will have a fruit, yogurt, protein powder, and juice smoothie. For lunch, he will have a carton of Boost nutritional supplement. For dinner, he will have soup. We will offer him pureed and chewable foods as he can tolerate them.
Most of his meals can be blended and thinned enough so that if he can't ingest them through his mouth, we can put them into his feeding tube.
Enough about nutrition. It's probably a little boring to read all the fine details.
Let's move on to the rest of the day:
As mentioned, Al gets two of his prescription supplements and three rounds of prescription medications, all through his peg tube (feeding tube).
We change his brief 3-4 times per day, which often results in us having to change his bed pad and sheets as well. And let me tell you how much fun it is to change the sheets on a bed with a person in it! (We use the term "brief" instead of diaper because a. that's the way the nursing home did it, and b. it helps him retain a bit of dignity.)
We feed him all his meals. When coughing is not an issue, he can eat almost all of the foods we eat in small, less-than-bite-size pieces. He also gets occasional snacks. He is obsessed with chocolate pudding right now, and I can't keep enough of it in the house.
We try to give him a bed bath twice a week and check specific areas like his eyes, ears, nose, and fingernails (and armpits!) throughout the week.
We also have to keep Al positioned well, which is not easy. Because of his most recent stroke, he now tends to lean to the right, and his head bends over so far sometimes that it looks like it's at a 90-degree angle. So, the remedy is to put a positioning wedge next to his pillow to force his head to stay upright. Sometimes, he slides down in bed, making him bend in the middle, which, as you can imagine, is uncomfortable. It's also a problem when we feed him through his mouth or his peg tube because he is supposed to be sitting up as much as possible during both kinds of feeding. Slouching down in bed or not sitting up straight can cause a host of problems.
He has a bed pad underneath him at all times. This helps us boost him up in bed by grabbing the edges of the pad and dragging him. This takes two people. The pad also helps to contain any "bathroom" mess, so we don't have to change the sheets with every brief change.
When positioning him, it is also essential to tuck pillows under his arms, legs, and elsewhere to keep him from falling over, slouching, getting bed sores, or just for comfort. We are incredibly blessed that his air mattress has a pump that alternates the pressure in his bed, which helps immensely in preventing bed sores.
It would be ideal if Al could get up in his wheelchair and join us in the main part of the house; however, he doesn't have a custom wheelchair yet. It's ridiculous how many hoops we've had to jump through to make this happen. He does have a loaner chair that does the job, but it is very uncomfortable.
To get him into his chair, we have to use an electronic lift. We put a sling under him with loops at his shoulders and thighs, attaching those loops to a metal bar on the lift. Then, we let the lift itself do the work of getting him up out of bed. We have to turn the lift and position him over his wheelchair, guiding his head and bum accurately into the chair so he is as comfortable as possible.
We have all been trained to do some passive range of motion exercises with his arms and legs. This means we move his arms and legs for him so he can maintain a reasonable range of motion and avoid contracture. Contracture is a condition of shortening and hardening of muscles, tendons, or other tissue, often leading to deformity and rigidity of joints. When you see a person whose hand is curled up or bent in an odd position, this is what contracture looks like, and it can be very painful.
Even with the help of a caregiver six hours a day, there are still a few tasks that only I can do; i.e., the caregiver isn't trained, so even on the occasional respite day, I still have to perform those tasks.
I change the inner cannula in his trach daily; I change the entire trach once a month. Changing the inner cannula involves removing the gauze from around the trach and cleaning the area around the stoma. Then I apply triple antibiotic ointment and replace the gauze. Then, I remove the inner cannula from his trach. The actual trach tube - a hard plastic tube - stays in for about a month, while the inner cannula - a flexible plastic tube that slides into the trach tube - gets changed daily. Sometimes, I have to change it more than once, especially if he's coughing a lot and gets a build-up of mucus inside the tube. (Of all the bodily fluids, mucus is the absolute worst in my book. This alone should be enough to prove my love for Al!) Changing the full trach is a little more daunting because I have to slide the entire thing out of the stoma, clean around it, and then insert the new trach. I've only done this a few times and it doesn't always go in easily on the first try.
I also change the dressing around his peg tube, which is usually pretty clean and unproblematic, but it has been bothering him more lately as it's been getting pulled often and has started to become infected.
(Side note: any time there is an infection around any of these sites, I have to change out the gauze 3-4 times per day instead of just once.)
Al has a suction pump,p which I mainly use whenI brushg his teeth. He has a special toothbrush that connects to the suction hose so I can brush his teeth, and any extra fluid gets sucked away so he doesn't choke on it. I also occasionally use suction to clear out saliva from his mouth if he forgets to swallow it. And once in a while, I have to use a suction catheter which gets inserted into the trach tube and sucks out any mucus that's blocking his trach. If I'm really lucky, I just put a few drops of saline into his trach and he hocks up a giant glob of mucus. I've learned to place some tissue or gauze right in front of his trach to catch it.
So.
That about covers the everyday life of caring for a quadriplegic. I didn't even mention the mounds of laundry, the emptying of the suction jar (which is probably the most disgusting thing I've ever done), the washing of his enteral feeding jars, syringes, blender parts and special straws. And don't forget all the phone calls for appointments, calls for special transport, paperwork, ordering and reodering supplies, etc.
Nor did I mention Al's discouragement about the entire situation. That's for another post.
Yes, I'm tired. Yes, I still have rheumatoid arthritis which rears its ugly head every few weeks. I'm blessed to have physical help with the most demanding tasks (changing him, bathing him, and getting him into his lift/wheelchair.) But honestly, it's the mental load that sometimes threatens to drown me.
But each day, God's grace is enough for me, and for that, I'm incredibly grateful.
For that, and coffee.
