Except for possibly a post about alternative living arrangements and involuntary admissions, this is the final part in this series. So…
Back to our infamous analogies!
THE COSMETICS ANALOGY: You found a date! Great! Your make-up is good to go and it’s time to enjoy your night on the town, right? Yep. At least for now. But, let’s say that you and your date really hit it off and you eventually decide to start seeing each other exclusively. Great, right? Well, yes, maybe. Before you don those rose-colored spectacles, remember past exclusives. “Relationship maintenance” ring a bell? Yep, all successful relationships require maintenance. Let’s be truthful, we all have our needs, wants, and desires when it comes to relationships. Keeping our wants, needs, and desires in some sort of quasi-balance with our mate’s wants, needs, and desires can be a tricky task. And yet to be successful, that’s exactly what we need to do! Congratulations, you’re on your way to having a lifelong best friend — assuming you read plenty of John Gray books, you remember proper toilet etiquette, and you eat your Wheaties.
THE HOME ANALOGY: So, your home is finished! Time to move in and enjoy all of the great things about your new abode, right? Yep. At least for now. Hopefully, your contractor was professional and did an exemplary job on your house. Still, you’re going to have upkeep on your new residence, correct? Correct! Immediate upkeep means paying the mortgage, paying the utilities, and doing the seasonal yard work so that your local municipality doesn’t fine you for grass that has grown up to your groin. Longer-term maintenance includes interior design changes — painting, new appliances and furniture, upgrades on electronic equipment, and eventually a new electrical system for your house (to keep pace with the new technology you’ll surely spend too much on!). Over the next several decades, the list of maintenance projects, home improvements, and tasks required to finish that basement will take some time, energy, and of course, money. So, strap on your hardhats, because owning your own home just became a lifelong project! Really: Congratulations. Getting to this part, while still potentially labor-intensive and while still potentially marked by setbacks, can also be filled with its fair share of celebrations and joyous moments, like bringing your newborn baby into the home.
So, I’ve beaten the analogies into the ground. Sorry if you found them too extraneous. I hope you found them at least a bit amusing.
Now, to the real world.
Topics to be covered: first hospitalizations, subsequent hospitalizations (if applicable), treatment teams, med adjustments, hiring (and firing?) mental health professionals, going to (or back to) school or work, relationships (of all kinds), keeping the environment schizophrenia-friendly, and that dreaded word: relapse.
Let’s start out with your loved one’s FIRST HOSPITALIZATION. Again, I’m going to assume a couple of things — first, that your loved one is responding reasonably well to medication (and was voluntarily admitted), and second, that he or she is fairly able to be active in at least some of the programs and activities available on the unit, some of which may be mandatory but in my experience, most of which are encouraged but voluntary. Here’s a quick rundown:
Wake-up = probably between 6:00-7:00 AM
Breakfast by 7:30 or 8:00 AM
Visit from psychiatrist = between 7:00-9:00 AM
Community Meeting - plans and goals for the day = 9:00-9:50 AM
Group Therapy = 10:00-10:50 AM
Break time = 11:00-11:50 AM
Lunch = Noon-12:50 PM
Group activity (arts, crafts, games, etc.) = 1:00-1:50 PM
Break time = 2:00-2:50 PM
Group activity = 3:00-3:50 PM
Break time = 4:00 - 4:50 PM
Supper = 5:00 - 5:50 PM
Evening free time, including a 2-hour visitation period.
This is a generic day but one that is not unlike
a lot of the ones I've experienced.
My advice: If you aren’t able to make it to visiting hours, at least call your loved one once a day. If you are able to make visiting hours, ask your loved one if she wants you to come. Sometimes, there is a limit on the number of visitors a person can have (two is customary). Nothing says you have to stay the entire two hours, but your presence may mean a great deal to your loved one, especially because he’ll be in an unfamiliar place with unfamiliar faces. If you aren’t able to make it to visitation, explain to your loved one that you are very sorry and that you will do your very best to make it to the next one (or one soon thereafter). This assurance (along with phone calls) will probably be much appreciated by your loved one. Also, try your best to meet with a member of your loved one’s treatment team at least once during the hospitalization (more is better — up to a point).
Average stay (in my experience) = anywhere from 4 – 10 days (for a first hospitalization involving schizophrenia – in a conventional hospital mental health unit, my estimate would be 7-8 days minimum).
Some things to expect when your loved one comes home:
- Your loved one may feel awkward. Remember, he’s just survived one of the most horrific brain diseases out there. On top of that, he’s been in a relative cocoon for the past week to ten days. To be thrust back out into the “real” world might be a shock to him at first. Recall the phenomenon of stimulus-overload. This can happen fairly easily, even to the most-seasoned veteran but especially to a first-timer. Expect it. Plan for it. Going out to eat at a busy restaurant probably isn’t going to do your loved one any favors. A quiet ride to a familiar place (like home) followed by a light meal might be more his speed.
- Do not expect that taking a pill is suddenly and magically going to make your loved one better, able to leap tall buildings in a single bound (or do work around the house, or go back to school, or get a job right away). Unfortunately, it doesn’t work like that. The aim from an initial hospitalization is to stabilize the patient as quickly as possible, so that they can be released as soon as possible. Don’t blame the treatment team (including the psychiatrist) or the hospital. It’s our health care system that needs fixed. So, contact your government representatives!
- Expect a relatively stable but slow progression toward partial recovery. Yes, there will be setbacks. Yes, there will be successes. The overall trend should be toward recovery, however. This is done with medication adjustments and a continuing beneficial professional relationship with a competent talk therapist.
- Then, there is the question of which symptoms should be alleviated and which shouldn’t. First, in my opinion, there should be a general trend toward better mental well-being. If there has been no progress whatsoever after the first hospitalization, then your loved one’s treatment team needs to be notified of that. As far as symptoms, all symptoms are troublesome; however, most people report that the positive symptoms – hallucinations and delusions – are the most troublesome. [“Positive” symptoms are simply traits that are present in the afflicted individual that shouldn’t be there. They are in addition to the normal range of traits or experiences the individual should have.] Most anti-psychotics target the positive symptoms of schizophrenia. Which one will work best for your loved one is determined by your loved one’s individual response to particular medicines or med combinations. Last word: Some people experience weight gain with anti-psychotic medication. If this occurs and it is troublesome to your loved one, please let her doctor know.
- As for the “negative” symptoms of schizophrenia, these are traits that should be present but are lacking in the person with schizophrenia. Some of the newer anti-psychotics (or more appropriately, medicines that target schizophrenia) address these symptoms which include avolition (lack of motivation), lack of proper hygiene, poor educational/occupational performance (especially with regard to one’s expected or previous abilities), and poor cognitive abilities (e.g. the ability to grasp abstract concepts like the meaning of “A stitch in time saves nine” or “People in glass houses shouldn’t throw stones”). In today’s world of psychiatry and psychology, I would be concerned if these were prevalent. Notice I said “prevalent” instead of “present.” Chances are some of these will be present, especially in the beginning stages of treatment. Expect these to improve as the months go on.
- Finally, expect some (possibly a considerable amount) of social awkwardness. Schizophrenia has a tendency to disrupt the social maturation process. It’s going to take time to catch up with others who are your loved one’s age, and I’d venture to say that “catching up” is the wrong way of viewing it. Everyone will have their capabilities and potential along with their timetable for reaching these potentials. Encourage and offer opportunities for social, cognitive, and emotional growth but don’t push the issue. Pushing the issue is a surefire way of having a setback and hopefully not a relapse.
SUBSEQUENT HOSPITALIZATIONS can sometimes be demoralizing for your loved one. If this is the case, offer genuine encouragement and support. Let them know that you are going to be with them during the recovery process and that better days are ahead but that those better days are going to require a substantial amount of work — on their part as well as yours . Also, let your loved one know that “getting to work” on their problems is not an immediate need. Give them time to rest and recuperate. Usually, subsequent hospitalizations are required for relapses, emergencies, and/or a major tweak in the medication regimen (e.g. the introduction of a new medicine). Again, ensure your loved one that he or she has a support system he can rely on.
A good TREATMENT TEAM is really hard to put a price tag on (literally and figuratively-speaking). In my experience, a good treatment team has the following qualities (at a minimum):
- The members of the team, which usually consist of a psychiatrist, a psychologist or licensed clinical social worker, and possibly a recovery coach are HONEST with everyone involved, including with the client, the clients loved ones (if they are involved in the treatment process), and other members of the treatment team.
- The members of the team LISTEN to each other, to the client, and to the client’s loved one and consider each party’s point of view. They attempt to reach a consensus in an agreeable manner.
- The members of the team CHALLENGE the client, the clients loved ones (when applicable), and other members of the treatment team to strive for better results. [Note: This is not like Basic Training at the United States Marine Corps boot camp, however. And, challenging should be congruent with achievable goals. Also, as with most endeavors of this nature, breaks and possible setbacks are expected. That said, an overall trend toward better health should be expected.]
- The members of the team INSPIRE HOPE in the client, the clients loved ones, and other members of the treatment team. Why hope? Simply put, there is plenty of it to be had.
- The members of the team (along with the client and their loved ones) RECOGNIZE WHEN THEY ARE WRONG about something and are able to approach the client, loved ones, and the team about the issue in an atmosphere of nonjudgmental acceptance. While this may sound a bit Utopian, this kind of open, mutual communication is the goal. This makes progress a lot easier.
MEDICATION ADJUSTMENTS happen in virtually all cases. I can’t tell you how many med adjustments I’ve gone through since 1997. Definitely too many to count. Don’t view med adjustments as setbacks. I would venture to guess that 99.999% of people being treated for schizophrenia have undergone at least one med adjustment (probably well more than one) in the course of their treatment. And, the need for med adjustments can be advised for any number of reasons and by any member of the group (clients, client’s loved ones, and members of the treatment team alike). Of course, the only member of the treatment team (in the vast majority of the United States) who is able to prescribe medication is the psychiatrist, so he or she will have the final say in all med adjustments, but there is nothing that says that another party can’t suggest something. Two major reasons for med adjustments that I can think of are symptom reduction and alleviation of unwanted side effects (weight gain probably being the most prominent but not the only side effect).
HIRING MENTAL HEALTH PROFESSIONALS (MHPs) during and immediately after a first hospitalization is usually not something that is consumer-driven. In other words, your loved one will most likely be assigned to a particular member of the treatment team (usually a psychiatrist and a talk therapist) rather than getting the luxury of choosing the members of their treatment team. A little secret: You can change. You have every right to request or sometimes even make a change in your treatment team. There may be a process, especially if you are working through a clinic or agency; however, if you are simply not satisfied with the results, you can change. It took me three years to figure that out. Some reasons to change: Look at the above five characteristics of a good treatment team. If any member of your treatment team is not living up to your expectations regarding any of those five areas (or others you may have come up with on your own), first talk to the person and try to work it out. This is not only good practice and etiquette, it will also show the clinic or agency that you tried to work things out with the mhp before “jumping ship” on him or her. My number one reason to let an mhp go: A particular member or members of the treatment team have stopped INSPIRING HOPE in me. Hope is the #1 fuel I get from a treatment team. I lose that for an extended period of time, and I lose hope in them.
GOING TO (OR BACK TO) SCHOOL OR WORK is a dilemma faced by many people who are recovering from schizophrenia. Not all people are able to do this. In fact, the jury is still out on whether or not I am able to do this. I’ve signed up to volunteer at the local hospital and, if all goes well there, I will be looking to return to school, but to be honest, I won’t know if I can do those things until I’m in the thick of doing them. Which brings me to a couple of points I think are worth mentioning: (1) Volunteering can be a great way to test and even develop your skills. My advice: Choose something you CAN do rather than something you want to do, and start out slowly; and (2) all work is meaningful work. I don’t care if you’re plucking weeds at the county courthouse after you have had to give up your dream of becoming the next great theoretical physicist. The work is still meaningful. A sage mhp convinced me of that one. Also, you may have setbacks in this area. Most people do. Rest assured, you’re not the only one who has fallen. Hopefully, you will stand up from your fall and regain your strength to try again.
RELATIONSHIPS. Wow, I could write a lot about this one. Suffice it to say, take them slowly. You are going to make mistakes. I know I have. And, a lot of my mistakes were ones that people 10 to 15 years younger than I make. Remember the whole “interruption of the social maturation process” deal? Yeah, so do I. Let yourself make those mistakes. It’s normal. You are may get involved with a group of people who don’t have your best interest at heart. You may even get involved in a romantic relationship or two that doesn’t work out. And, you may even experience a temporary or permanent split with your family. If you experience these things, let them happen. For caregivers: unless you see that your loved one is in serious trouble, let them make and learn from those mistakes., regardless of how age-inappropriate those mistakes may seem to you. It’s natural and healthy. If your loved one is not making mistakes (and learning from at least some of them), then you should probably be worried about their progress.
KEEPING THE ENVIRONMENT SCHIZOPHRENIA-FRIENDLY. This is probably not possible 100% of the time. My advice on this one: keep expressed emotions at a minimum. For me (and I would venture to guess for most people with schizophrenia), this is the #1 environmental stressor. When tensions are high, stress levels for people who have this disorder can skyrocket astronomically. A safe bet: to prevent setbacks or relapses, keep the emotions to a minimum and the lines of communication at a maximum.
THE DREADED WORD: RELAPSE. Defining a relapse is kind of difficult, since it means different things to different people and different things can trigger a relapse. Three major contributors to relapses:
- Going off of medication and/or not going to therapy sessions.
- Stimulus overload (includes exposure to expressed emotions) for an extended period of time especially with the inability of the afflicted to distance herself or get away from that environment in order to decompress.
- Major life changes (perhaps a death in the family or of a friend or significant other, moving to a different city, death of a pet, major non-psychiatric illness/disease, loss of job or dropping out of school, other major life stressors).
What is a relapse and how does it differ from a setback? A setback is usually a minor event, is shorter-lived than a relapse, and most often easier to overcome than a relapse. It is often not caused by a major life stressor, although sometimes it can be. An example of a setback: Having to drop one of your college courses in order to make it through the semester. Chances are that’s a relatively minor event, and especially if your loved one is able to continue with the rest of her classes, it is also relatively short-lived and relatively easy for that person to overcome. This goes for all of the topics of this post: assure your loved one that you will be there for them during the setback. That knowledge and your follow through on that pledge should pay big dividends down the road.
However, there is still the issue of relapse. Relative to a setback, a relapse is usually a major event, is oftentimes longer-lived (or more impacting) than a setback, and more difficult to overcome. A classic example of a relapse in someone who has schizophrenia is if he or she decides to discontinue taking their medications AND stops going to therapy. If one or both of these occurs, contact your loved one’s treatment team right away. Do not hesitate. Now, if your loved one misses one dose, don’t get overwrought; however, if your loved one starts missing a string of doses and especially if it is apparent that they have no intention of starting back up again, contact your loved one’s psychiatrist or talk therapist ASAP — sooner than ASAP. If this is the case, you are headed for trouble, and the possibility exists that you will either have to have your loved one involuntarily committed or start over with Step #1 of this series. It does happen, and at that point, you have to ask yourself (and possibly your family) if you have it in you to go through the struggle again. Don’t feel bad if you don’t. Sometimes finding alternative living arrangements is best for everyone involved, not always but sometimes, and only you (and your family) can make the decision to try again or whether a different arrangement would be best for your loved one and you and your family.
Holy moley. My fingers are tired. And, I bet you’re tired of reading. That’s it for now. Like I mentioned, I might do a post or two on alternative living arrangements and involuntary admissions but think I’ll take a break for a while!
Take care and best wishes…