Well, it happened. After all of the talk and worry and planning, Sherrin came home from the hospital on December 15, about two weeks ago. One year, 7 months, and two days my sister spent in the hospital and now we are slowly trying to figure out her new life at home. We have transformed our basement to be Sherrin’s room that is equipped with her medicine, linens, wheelchair, Hoyer lift, and every piece of equipment needed for therapy. We put in a stair lift on the staircase that leads to the main level of our house from the basement. With this, we can roll Sherrin and her wheelchair onto a platform and raise her up with a remote so that she can come upstairs.
It’s an adjustment to have her home, a huge, huge adjustment, and it hasn’t been easy to say the very least. The way I describe Sherrin being at home is great for her, but a huge burden on
my dad, mom, and me. For Sher, she gets to be in an environment in which she knows and is familiar as well as getting to see her friends nearly every day. Her friends were probably one of the most important things to Sherrin before the accident, and being away from them for so long practically killed her. Being home makes Sherrin feel more normal and not just a patient in the hospital.
However, for my family and I, it is exhausting to have her home. We watch after her constantly. It literally does not end, but we’ve been able to have some help so far. My dad arranged an at-home care service for Sherrin that provides nurses, aids, and physical and occupational therapists for about five days a week. The service is pretty great so far and we’ve had little to no problems with them, but it’s a small company and the one of the only ones in the Northern Virginia area, so we didn’t have much of an option. This was a problem we have been worried about since the beginning of this experience – adequate brain injury specialists simply do not exist in this region. Neurology is a highly specialized medicine that is only concentrated in very few parts of the country, like New Jersey/New York, Atlanta, Denver, and Chicago, so being in the DC area is a huge obstacle to provide Sherrin the care that she needs to make a recovery. My parents debate about moving back to New Jersey permanently so that Sherrin can go back to the doctors and therapists that were helping her so much, and who knows, maybe we will one day, but for now we must make do with what is available in Northern Virginia.
One of the main problems we have with the care in this area is that we don’t have help at night. When Sherrin was in the hospital, my parents and I would stay from 8 AM- 8 PM and were able to go home and sleep for the night while the nurses and aids at the hospital watched Sherrin. Now, we don’t have that anymore. There isn’t a service that will provide a nurse or aid for a brain-injured person for overnight, so its either one of my parents that watches her or me. And when it’s your turn to watch Sherrin overnight, you don’t sleep. Sherrin is almost like a newborn baby that needs care at every hour of the night. During the first few nights she was home, one of us would sleep down in the basement on the couch next to her. Now, we put a video baby monitor on her so that we only have to go down to the basement if we hear her wake up, which is often. Sherrin has not been sleeping well at all (some nights not at all) since she’s been home. Some nights she wakes up every 30-45 minutes and yells “Ow!” or “Oh my god!” or “Please, help me!” These pleas are hard to interpret. Sometimes she calls out to one of us because she needs to have her diaper changed or wants a drink of water or her hands are aching. One time she accidentally pulled out her feeding tube from her G-tube in her stomach and all of her food spilled over her bed and the floor (she gets fed through her stomach at night). But other times her pleading is just for attention. Sherrin was always the type of person that could never be alone. She was an extrovert to the extreme. She would refuse to do simple errands like going to the gym or mall unless someone went with her. So, the nights that no one is sleeping down there with her, she yells until someone comes down and checks on her. She just doesn’t want to be alone; I guess it’s scary for her, which makes me sad, but its impossible to be with her 24/7 like that. My family and I need to sleep, but anything can happen with Sherrin overnight, which is why we have to do this exhausting task. Without a doubt overnight care is the thing I miss the most about Sher being in the hospital.
Sherrin’s days so far have mostly been somewhat quiet since we are still working on choosing the right outpatient rehab center we want her to attend. We have occupational and physical therapists (no speech therapist, yet) come about 3 days a week so far that help Sherrin a lot. We are planning for Sherrin to get therapy at 3 days a week at home and go to a facility for outpatient for 3 other days, but this plan is still being hashed out with our insurance company and doctors’ recommendations. When Sherrin doesn’t have therapy at home, her friends will come by and hang out with her for a couple of hours. This is so great for Sherrin. When she sees her friends, her face just lights up and she can’t stop smiling. Like I mentioned before, her friends have always meant everything to her and it is so nice to see her happy and feel normal again. We try to start getting her ready for bed around 7 or 8 PM that includes a sponge bath or shower, getting her nightly medications, brushing her teeth, and cleaning out her G-tube. We leave her to go to sleep at around 9 PM but she really doesn’t fall asleep until midnight (if she does fall asleep that night). The reason why we put her to bed so early is that we are completely and totally exhausted from the day and pushing her bedtime any later is asking a lot out of us. We found that this time was a good compromise for both Sherrin and us.
Sherrin has been begging to go up to see her old room. She can’t really cry but you can tell she’s hysterical when we tell her that she can’t go upstairs. We didn’t put a lift on the staircase that goes upstairs to her bedroom because it wasn’t completely necessary and it cost about an extra $16,000. Yes, it’s heartbreaking to tell Sherrin that she can’t go up there but then at the same time we ask ourselves if it’s worth $16,000 — probably not. We have thought about carrying Sherrin up there, but that’s a very hard and scary task. Sherrin is 100 lbs of dead weight and she’s very stiff and fragile. We would need at least two people to carry her, my dad is the only one strong enough to do it but he can’t do it on his own. But then it’s a question of what if we drop her up the stairs? What do we do when we get her up there; just have her sit on her bed? We can’t bring up her wheelchair so she would be pretty much just bound to her room. When she gets upset that she can’t go upstairs I try to use it as motivation. I say to her, “Sher, if you want to go up there you need to walk up there, you can’t depend on us for that. It’s on you.” But she just gets sadder and falls deeper into depression. We try to distract her with other things so that she doesn’t ask for it anymore, which seems to work most of the time.
Sherrin was able to make it home from the hospital in time for Christmas, our first holiday that hasn’t been spent in a hospital since May 13, 2012. It was quiet. Sherrin had gotten pretty sick on Christmas Eve due to changes in her medication and had thrown up several times, so come Christmas morning she was very weak and quiet. Our family in the area was spending Christmas at my cousin’s house and had wanted us to bring Sherrin. Unfortunately, we can’t bring Sherrin there because she physically can’t get into the house (they have stairs leading up to the main entrance) and she isn’t stable enough to be out for more than a couple of hours without getting irritated or feeling weak. We didn’t want to do Christmas at our house with the family because it was way too much of a burden with everything going on with Sher. So, we just kept it quiet and had visitors stop by throughout the day. We exchanged gifts and Sherrin got a neck massager and seat massager that can be put on her wheelchair. She LOVED the neck massager and couldn’t stop smiling when we put it on her. I love it whenever she smiles or laughs, it is really the sweetest thing ever, and makes caring for her so much easier.
Sometimes (a lot of the time) I get really overwhelmed with the situation that we are in. It’s so exhausting to push through every day and care for Sherrin, but whenever she smiles or laughs I feel better. I know it sounds cheesy but it is so true. When I really think about my family’s new life and what my sister has to endure every single day, I fall into depression. I can’t help it and I feel like anyone with a pulse would do the same as me. But when Sherrin laughs or smiles, I am able to pull myself out of the depression in a split second. The way my mom describes it is that Sherrin is the light at the end of the tunnel. With all of the upheaval and constant battles, knowing that Sherrin is happy even for 5 minutes makes it all worth it. The other day I played a joke on my dad who was underneath the kitchen sink fixing our garbage disposal. Sher and I were in the kitchen and I yelled, “Oh my God, Dad, there’s a mouse right next to you!” My dad freaked and jumped 10 feet away from the sink. Sherrin and I couldn’t stop cracking up about it. Even if it was at my dad’s expense we both were so happy that Sherrin was uncontrollably laughing. It made all of the bad not seem so bad. Yes, tensions are always high in my household because we are both frustrated and exhausted, but attitude really is everything. Being able to snap out of the depressed mode is hard, but we have to do it for our sanity and Sherrin’s sake. If we crack then Sherrin can’t get the care she needs. You do what you have to do to save your loved one, so you forget about how you feel and suck it up for them.