Question of the Week - Advice

My advice as usual is that if your loved one is not himself or something isn't right, take immediate action.  The longer a person goes without medication and treatment, the harder it will be for them to recover.  My mother and father had warning signs a week or two before my breakdown.  Excited and animated, I took them both aside, separately, and was running off at the mouth about my goals and plans and ideas.  This was not like me.

Also, when your son or daughter gets out of the hospital, they may need to attend a day program and if your insurance doesn't cover it or they don't have Medicaid, consider paying out of your own pocket.  I've heard that with certain medical bills you can negotiate lower fees, especially if you pay in cash, so I would try asking for a reduced fee for the day program, it couldn't hurt, they could say no, but you never know unless you ask, they could lower the fee or offer a sliding fee scale.

I was 22 when I first got sick and had graduated college in June, and couldn't go straight to work so attended day programs for two years.  I was lucky I got Medicaid at the time.

I also suggest [though it will break your heart] to visit your son or daughter in the hospital every day, or as freqently as possible.  Not only will your loved one feel better, the staff will be aware of your presence and hopefully thus be put on notice that they can't get away with things.  [My mother gave the staff a tray of homebaked cookies when I was released after the second time, but hey, that's my Mom.}

My last words to you I give to everyone who is newly diagnosed with SZ: expect that you can recover.  You may have to go about things differently, or it may be harder to do things that come easier to other people, yet you can work with your limitations and go on to have a full, productive life.

It takes at least one year after coming out of the hospital to recuperate and get back into the swing of life.

If at all possible, you should do what you would do had not gotten sick, be active in the world and do what other young people do.  Refrain from street drugs and alcohol.  The warning label for all the SZ meds tells you to avoid or reduce alcohol, and I'd say, refrain from drinking.  To me the suggestion to "reduce alcohol" seems like a concession.  I last had a beer in 1993: 16 years ago, and I haven't felt the need to have one ever since.  Drugs, alcohol and the SZ meds don't mix.

How does this sound?  I'd love to hear your own comments in response to the Question of the Week.

I will throw my hat into this ring. The advice I want to give families of a newly diagnosed SZ is support them. Not with money (unless you want to), but with compassion and caring. I would've traded all the visits for one "I love you." 

Learn to listen for warning signs. I was psychotic for two months before my folks knew. I was hiding in plain sight. It wasn't until I got physcially sick that they took notice. Let your family member know that you are there for her/him. 

I give that advice because my family didn't offer me anything. They drove 50 miles every weekend to see me. I think it was for show and not because they cared. None of my family has ever talked about my SZA. When I told my father I was in the hospital last September, his response was "was it the same ole thing?"

Support, take interest, pay attention.

Dave

Hello everyone,

I've said it before in here and at other places: the tide could turn at any moment.  If you're seeing someone at his or her worst, know that it can get better with time. 

Like Dave said, tell your loved one, "I love you."  Heal the wounds of the past.  Come together to work on their recovery. 

Encourage your son or daughter to be active outside the house.  No matter how far-fetched the hobby seems, support them.  It could be as simple as going to a public library to use the computer.

Understand that the SZ meds could cause side effects, like drowsiness that causes someone to want to sleep during the day.  With time this could possibly go away.

Understand that things will be different, yet they can be better.  As the NAMI Connection peer support group guideline suggests, "We expect a better tomorrow in a realistic way."

Xavier Amador, Ph.D. in his Lessons Learned column in Schizophrenia Digest wrote that he was able to help and be there for his brother when others didn't know how to react because he was able to mourn the loss of the way things were and accept that Henry's life had changed and there was no going back to the way it was.  This doesn't mean it's hopeless, it just means it's different.

What happened for me was that after I relapsed and was hospitalized a second time, I decided I had to make my recovery the number-one focus of my life.  So offer positive reinforcement when your loved one make strides, however small, to live well in his or her recovery.

That's about all I have to say for now.  I'll wait for other comments before posting more.

Christina

I have started this post 3 times and canceled them because the ideas I had to offer seemed too obvious.  Like take your meds and find a support group.  Those have already been mentioned.  What I DO want to say is DON'T GIVE UP TRYING.  Set small goals and work toward one at a time.  Enlist the help of others when necessary.  Don't expect immediate results -- recovery takes time...but it is definitely possible.

Carolyn

Hi everyone,

This is one thing I feel I would be remiss if I didn't mention.

Though it is never the same after you have a breakdown, your life can be even better.  To crib something Don Fraser wrote in his SharePost and elaborate on it here, recovery involves respecting and accepting your limitations.  Some things that come easy to other people may be harder for you.  This isn't a reflection of your worth.

Another thing: a controversial New York Times article of about five or six years ago quoted professionals who claimed that after a first psychotic episode, you didn't need immediate intervention with medication because the brain would revert back to normal.  That's an unproven theory.

A cautionary tale: someone who was the poster boy for recovery went off his meds, stayed off them for five years and his behavior became increasingly erratic, disruptive and strange until he was involuntarily hospitalized and forced by court order to take the meds.  He got out of the hospital and when I saw him again for the first time in three years, he wasn't himself, he was hesitant, and there's not guarantee he'll return to his previous level of functioning. 

Moral of the story: a good way to destroy your ability to function would be to stop taking your meds or delay taking them when you've had an episode.

Carolyn briefly alluded to the "take your meds" creed and I wanted to go into detail about it here.

The last comment I want to post for now is that you employ a sense of humor in dealing with the symptoms of the schizophrenia.  To be good-humored about your hardship will help you lighten your mood and put you in a receptive frame of mind for envisioning a better future.

Cheers,

Christina