Life & Times of a Caregiver

The saying between a rock and a hard place couldn’t be truer than when you’re trying to help someone with mental illness, addiction and/or another condition.  You’ve got your loved one’s irrationals thoughts and need for help and on the other side the bureaucratic red tape of agencies and HIPPA rules alongside of that.  The situation can become so muddled you can feel like you’re watching an episode of “The Three Stooges”, but no, this is your life – the reality of it all.      

A mental health agency’s recorded message states to make an appointment call between 8:00 AM and 10:30 on Wednesdays.  The future client calls – and then calls.  After a time, a new message tells the client appointments have been filled – have to try again next Wednesday.  On the third Wednesday, the client gets through to a person, a real live one, who tells him to make an appointment, he first has to have a referral from a doctor and a physical (because it’s been some time since he’s been seen by a doctor).

The client then tries to find a doctor.  He begins calling a local clinic.  I try to help by calling them first to see if they accept the type of insurance and if they’re accepting patients.  They are taking new patients, and the receptionists says the future client can call the office.  He calls the office; The receptionist says the persons who takes new appointments isn’t there and to call back at 11:00 the next day.  The future client tries for two more days with the same result.  I call the office back and the receptionist explains that appointments for that day have been filled and the future client just has to try back each day.

The future client is tired and discouraged.  He doesn’t want to make any more attempts and gives up.  These experiences feed his philosophies that world isn’t really there to help people and that everyone is involved with “playing games”.

I read an article in the paper about improving services for people with mental health problems.  I email the person and explain the situation.  He, kindly, emails me back offering some new contacts and ideas for support.

I try to give this information to the person seeking help, but his ambition to pursue help is fading.  His orientation to time is different from the average person’s.  He may not know what time it is or the date.  For him to follow instructions to make appointments, he needs to be coached each time.  He may not write down important details needed to follow through.  Days pass and turn into weeks.  The situation remains the same.

I echo the sentiments of the writer from the newspaper, but realize improvements or changes won’t be happening soon.  Many who are functioning people, without mental illness or other conditions, wouldn’t even realize the extreme effort it takes for someone with mental illness to try to follow the steps needed to make “simple” appointment.   They won’t consider that awareness of time may be an issue (along with transportation – which bus route to take and of course, what TIME does a person need to be at the bus stop to make their appointment?)

Additionally, the future client’s own experiences with medication and the side effects influence their motivation to follow through with the steps needed to complete the process along with muddled nature of making an appointment.  Further, once the client gets to the appointment, there will be more instructions.  He’ll write the appointments on slips of paper that will be put through the washer.  He’ll fill medications that he may not take or not take correctly.  When he does take them, he may experience side effects that make him wonder if this is worse than how he feels without medication.

He says the medication makes him feel like a mannequin – plastic and not real – like he’s separate from himself.  He may develop tics where his leg bounces and his hand looks like a claw.  He may be unable to sleep and pace back and forth.

When this happens, he’ll withdraw and ignore any type of instructions he’s supposed to follow.  This will go on for some time, until he feels so desperate that he thinks he wants to try to get help once again.

And, in between, he may decide to use drugs to find a quick escape from his feelings from mental illness and feelings of inadequacy that these appointments and carrying on with general life is such a trial.

And, YOU, as the caregiver will just have to watch it all.  Watch it all happen again and again.  You’ll try to tell the people on the other side of those phones about the situation.  You’ll try to talk about following through that things take time and patience (and they do).  But the whole cycle will replay itself for years.

Strength means recognizing that it is impossible to be strong all the time.
Sally Franser

A caregiver can only do so much.  Make so many calls.  Give so many reminders.  A caregiver can lose themselves in the cycle.  They, too, have to remain aware of the time and the date and the instructions their supposed to follow in their own lives.  A caregiver has to decide how much they can do and still remember their own self as a person.

That has to be enough for a caregiver.  A caregiver is always left hoping one side or the other with make a positive move to try something to make a change and move out of the cycle and that each side will see that they are living breathing people trying to live another day.

It’s not the load that breaks you down, it’s the way you carry it.
Lena Horne

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