Hi again K,
First of all, thank you for your kind comments :) Sounds like you have
experienced first-hand one of the greatest tragedies of this illness
... symptoms that lead to noncompliance with treatment.
One of the links Knowledge Seeker gave you was for NAMI in Sacramento.
That web page has some tips for families.
Helpful Tips for Families
http://www.namisacramento.org/helpfultips.html
Let me begin by saying that I agree with much of the information on
the Family Tips page above. But I don't agree with their statement at
the top to ignore delusions. Further down on the page it recommends
that you reassure, and that is what I usually advocate unless there
are unusual circumstances.
Here's an example. Let's say the individual with schizophrenia is
convinced that the neighbor is out to get him. Furthermore, the
schizophrenic believes the neighbor has gone so far as to bug the
schizophrenic's home. Instead of saying, "Oh that's nonsense!" or
ignoring the schizophrenic's concerns entirely, you can respond to the
emotional state. This is different than fueling the misbelief! For
example, you can say, "That must make you feel quite violated" or "I
can only imagine how upsetting it is to believe someone would do that
to you." I think this type of response leads to less commotion than
simply ignoring the schizophrenic's statements. No one likes to feel
ignored :) You can provide support by focusing on the feelings
underneath and not on the delusional statements themselves, which can
seem very non-sensical. I learned a long time ago that I'm not going
to talk someone out of a delusion, but I can calm him down by
addressing how he feels. I hope that made sense!
In looking at the web page for NAMI's family to family class, it looks
like they address communication issues. I hope you will contact them
at your earliest convenience.
NAMI Family-to-Family Education Program
http://www.namisacramento.org/familytofamily.html
If NAMI tells you that no classes are starting soon, please ask if
they have any information to send you or anyone you can talk to
because you need help dealing with a loved one NOW. They should be
able to refer you somewhere.
You mentioned in your comment that the individual was formerly on
Haldol. You didn't say if the individual did well while taking haldol.
I am assuming the person is off meds now. If I am misunderstanding the
situation, please correct me :)
It may not be possible for you to convince the person to resume
medication without professional assistance. There are a number of
factors that can lead individuals with schizophrenia to stop their
medications. You are probably well acquainted with many of them. But
as I list a few of them below, please try to put yourself into your
family member's situation. Please try to imagine things from his/her
perspective. Sometimes patients stop medications for reasons entirely
unknown to the family. Some of them include:
1- Side Effects: Some of the anti-psychotics have very uncomfortable
side effects. Imagine having to make the choice of feeling bad vs
being able to think more clearly. Sometimes it doesn't seem like much
of a choice! If side effects are the issue, there are other
medications which can minimize the side effects.
2- "But I'm OK": Sometimes after feeling the benefit of medications,
patients feel they are improved and therefore not in need of medicine
any longer. They don't understand that it was regular medication that
was enhancing their stability. Or they may be in denial about having a
chronic illness. If this is the case with your family member, then
psycho-education about the long-term use of medications is a crucial
aspect of treatment for your loved one. Most mental health providers
incorporate this component in their treatment plan. Be sure this is
part of your loved one's treatment plan if s/he returns for medical
care.
3- Cost: Sometimes it's very expensive to get anti-psychotics,
especially the newer ones Knowledge Seeker listed for you. I remember
when Clozaril came out and was hailed as a wonder drug for
schizophrenia. My state's Medicaid program wouldn't cover it, and it
was a nightmare to get this medicine for patients. Sometimes insurance
companies won't cover certain expensive drugs without further
documentation. Or sometimes newer meds require periodic blood tests,
and this may mean extra costs for the patient. Financial issues can be
very complicated and sometimes aren't readily apparent.
4- Inconvenience: Sometimes patients have to travel long distances by
bus or on foot to retrieve their medications from mental health
centers. And sometimes those periodic blood tests require hours of
waiting. Sometimes the mental health system puts up barriers that
actually make it difficult and inconvenient to access medications and
testing. That does little to motivate compliance!
5- Delusions: This can be especially difficult if the individual is
paranoid. I've met many patients who believed that someone was trying
to poison them with the medicine, therefore it was dangerous to take
it. There are many delusional "reasons" I've heard through the years
for not taking meds, and this can be a very difficult aspect to deal
with. But again, psycho-education and other therapeutic techniques can
help. This should be incorporated into the treatment plan for your
family member if it's an issue.
If you can discover the real reasons your loved one stopped
medication, and show genuine concern for those reasons, you may be
helpful in convincing your loved one to return for medication
re-evaluation. But don't feel like a failure if you can't do it alone
:) It truly may take some professional intervention.
Here's a method I sometimes use when I am working with families. (You
can ask a local mental health professional to assist you in trying
this. Please don't try it without professional assistance if you think
it may backfire or you aren't comfortable doing it without
professional help!) I frequently try to find the patient's closest
ally. Who is the person the individual trusts the most? Whose advice
would s/he be most likely to take? Who is it that the patient would
turn to in a crisis? I try to narrow down the list to a maximum of two
friends or relatives because I don't want the patient to feel "ganged
up on."
Then I try to get the patient to listen to this trusted individual. I
have the trusted individual give in simple but concise terms what
observations lead him/her to believe the patient needs to resume
treatment. For example, "You used to take a great deal of pride in
your appearance. You always looked nice and neat. But now you rarely
shower or change your clothes. That makes me think something is going
on that we need to look at." Or "You used to love going to <name a
place> but now you stay home by yourself and don't go anywhere. I'd
like to help you get back to the point where you go out and have fun
again." Or "We used to be able to sit and have nice talks. Now when
we try to have nice talks you accuse me of things and we argue a lot.
We didn't use to have this problem when you felt better, did we? Let's
see what we can do help you feel better again."
Those are some brief examples. It's helpful to have the trusted person
talk with the mentally ill person in the presence of a professional.
But if you can't get professional help as quickly as you want, you can
still try to have the most trusted individual talk to your loved one.
But only if you are comfortable doing so ... otherwise please get
help! If you have someone talk with your family member without
professional support, it can be helpful to have the trusted person
remind your family member that the conversation is being held solely
for the benefit of the family member. In other words, have the trusted
person point out that s/he gains nothing from the loved one's return
for evaluation. The conversation is only taking place due to concern
for the individual with schizophrenia. Then use non-judgmental,
concrete observations of ways the person has deteriorated and the
negative consequences of that deterioration. Stress areas in the
patient's life that may improve if s/he returns for treatment. And
point out examples of how the individual was able to do things before
while receiving treatment that s/he can no longer do ... or do well.
And most importantly, let your family member with schizophrenia know
that the family will accompany him/her for a return to treatment ...
there is no need to go alone. And there is no need to feel ashamed.
Schizophrenia is an illness, not a faulty personality or failed
ability to cope with life. Find out, if you can, what your loved one
needs to have or do in order to feel comfortable to return to
treatment. Try to address those specific concerns if you can.
When you say the person has "left their home," I presume that you
don't mean for hospitalization. I presume you mean to wander the
street or go to another city .... am I right? That is a tragic and
very difficult situation. But it's also a sign that the person is
probably unstable enough that s/he may qualify for some
community-based programs. If you make some contacts from the local
NAMI links given to you, you should be able to learn more about
community-based programs which can offer help and support.
In my community, there is a home evaluation program for people who
have deteriorated and refuse intervention. I confess that I don't know
if one is available in Sacramento, but I suspect there is. The link I
gave you above for involuntary hospitalization referred to a "mobile
crisis team." In a city the size of Sacramento, I am sure there are
multiple community-based programs. The key for you is to find out
which ones and how to refer your loved one.
It's difficult to give suggestions based on a scant amount of
information. I hope that you will contact NAMI or one of the numbers
on the crisis contact page from the Sacramento NAMI link given to you
by Knowledge Seeker. I think it's helpful for families to compose a
list of questions to ask.
Here are some questions you may want to ask after you have a chance to
explain your situation:
1- What programs are available in the community to help me find help
for my family member? Provide your family member's age. With such a
lengthy history, there may be programs for people who are chronically
(that is long-term) ill or for older (geriatric) adults.
2- Is there an outreach person or a community evaluator who can help
me talk to my loved one in attempt to assist him/her to seek help?
3- Is there any program to assist with the cost of medicines? (If the
individual has no insurance or no insurance which covers meds.)
4- Do you know of any family support groups or family outreach
services where I can talk to other families who have been through
something similar with their loved one? (Families are TERRIFIC sources
of information, support, and ideas!)
5- I need help now. Who can help NOW? Are there social workers or case
managers who can help me arrange some much-needed services at home if
my family member refuses to go anywhere for help?
Hopefully NAMI or the California Dept of Mental Health is going to put
you in touch with someone who can help. When you get a chance to talk
to the professional, here is the type of information you can provide
to help the professional assess the situation:
-- How long has the person been off medications?
-- Is the person using illicit drugs or alcohol? Has s/he ever done so
in the past?
-- How old was the person when initially diagnosed?
-- Has the person ever received conflicting diagnoses? (For example,
two doctors said she had schizophrenia, one said she was manic
depressive, and another said ...")
-- Has the person ever been psychiatrically hospitalized before?
Where, when, how long? What events led to those admissions?
-- What led to discontinuation of medication? (if you know)
-- What symptoms improved while the person was on medication?
-- Is the individual currently exhibiting any potentially dangerous
behavior? Has s/he done so in the past?
-- What symptoms do you notice that are getting worse? (Be sure to be
specific with this one. For example, rather than saying, "She's
confused," try giving specifics such as "She can no longer remember
where she lives, she thinks her husband is still living ... ")
-- Was there any treatment provider in the past who was trusted by the
patient and to whom she might be willing to return?
-- Try to be more descriptive of those "quality of life" issues you
referred to. For example, "She burned up two pans on the stove last
week" is more helpful than "She can't cook for herself any more." Or
"He is afraid of his neighbors so he sometimes leaves home for weeks
at a time" is more helpful than "He always takes off and we don't know
where he is."
One issue you want to be sure to address is safety. It's one of the
most important evaluation aspects of any serious mental illness. If
you have any concern that the person is an IMMEDIATE danger to self or
others, you can call 911. The emergency response personnel will come
out and see that the individual is safely transported to an ER or
psychiatric emergency center if there is imminent danger. I always
recommend that families have a crisis plan. Part of that plan includes
a list of agencies with 24 hour crisis responders. You should be able
to get more info on that from NAMI or the California Dept of Mental
Health. Knowledge Seeker also gave you a web page link above with your
local contact numbers.
I wish I could be of more assistance to you. It's hard to give good
recommendations from only a slight bit of information. I can only
imagine the heartache you've been through! But I hope you will be
encouraged that help is out there. Schizophrenia can often be managed
well with proper medication and community supports. Hopefully there
are some outreach or community-based supports available in your area.
That way a professional along with someone your family member trusts
can work together in an attempt to resume treatment.
Let me close by commenting on your statement, "I am hoping that with
some help and newer treatment options that we can find a treatment
routine that will last." I often think of schizophrenia as being like
diabetes. There is no cure, but often symptoms can be managed quite
well. Just like the diabetic sometimes needs medication adjustments,
the same is true with schizophrenia. That is NOT to say the
schizophrenic should adjust meds on his/her own ... unless the
psychiatrist has advised him/her to do so. I mention the med
adjustment issue because sometimes it's just the nature of the illness
to need a medication adjustment. It isn't the fault of the person,
it's the disease process itself. Probably the most important part of
the treatment routine is the "routine" of having symptoms re-assessed
regularly and medications appropriated adjusted ... and taken
regularly.
To find a "treatment routine that will last" will require linking your
loved one with a provider s/he trusts. That can be the hardest part.
But if you listen to family member's concerns and try to discover all
his/her objections to treatment, you can then try to incorporate
his/her wishes into the referral process. And you can let the mental
health provider know what obstacles prohibited care in the past.
I wish you and your family the very best :)
fsw |
