Family member not improving after initial treatment

Family
1

I could use some advice on how to help a family member with
her treatment of schizophrenia. This will be a long post so that I can provide a
lot of detail.

Back in the October my mother had severe auditory
hallucinations to the point she was putting herself in danger. We tried to
convince her to see a doctor and counselor but she wouldn’t agree, and she
ended up needing to be committed after another incident.

She spent a couple weeks in a hospital where I think she was
being given plenty of attention and improving pretty quickly. The hospital then
determined she should be moved to a longer term treatment center. Apparently
the patient gets the choice of where they will be treated. My mother did not
want to be far from her home, so rather than choosing one of the recommended
mental health treatment centers farther from home, she chose an assisted living
facility that wasn’t as high up on the hospital’s list of recommendations.

For a couple weeks, she sounded a lot better. She hasn’t
mentioned hearing voices in a long time. She sounded positive and sharp.
However, she’s been in the facility for over 3 months now and doesn’t sound so
good any more. I know she’s been more tired than usual, has problems with
blurry vision, and her memory isn’t as good as prior to treatment. She sounds
depressed, which is understandable since she doesn’t have much freedom where
she is and she really wants to be back in her house.

Her medications are Haldol and Cogentin. She sees a
counselor once every 2 weeks. She sees a psychiatrist near her home once a
month, and another psychiatrist that visits the facility’s residents once a
month.

She hasn’t come to terms with her diagnosis and is stubborn
with sharing her medical information and signing the necessary forms. I don’t
think she is open to moving to a different facility as she thinks she should be
back in her home.

Nobody that I know has experience with schizophrenia, but my
other family members and I feel she should be seeing a counselor or
psychiatrist more than every two weeks. We’re concerned that since the facility
she’s in doesn’t specialize in mental health treatment, that they’re not doing
as much as could be done.

Ideally, we’d like to see her get to a point where she’s
accepting of her diagnosis and understands why she’ll need to continue taking
medication and having regular psych/counselor visits. We’d love for her to be
able to return home since she’s a lot more comfortable there. I don’t want to
see her in an assisted living facility for the rest of her life as she’s just
over 60 years old – she has a lot of years left to find enjoyment.

What do you think we can do to help her improve? I
understand that for some people it just takes time, but it’s been a total of 4
months now, 3 of which she’s seemed worse rather than better.

It’s tough to know what’s best to do without knowing anyone
with experience. The social worker at her facility has been helpful with
answering my questions, but hasn’t given a lot of insight. She basically
suggests having her psychiatrist continue to make medication changes and wait
to see if she improves. I’d welcome any suggestions. If there are any more details I can provide I’d
be happy to. Thank you for taking the time to read this.

2

Firstly 3 or 4 months is not a very long time… I know it sounds long, but myself and my sister (also Schizophrenic) have both stayed in hospital for much longer stays. They are hopefully trying to ‘stabilise’ her.

If they succeed in a med change / increase / polypharmacy (more than one antipsychotic) / injections which really does make her well, then there will be acceptance and coming to terms with her diagnosis

She is probably still experiencing ‘lack of insight’ which is common in people who are acutely unwell, it is the norm for that situation.

This will improve when she is well again

is this her first psychotic episode?

also the once every 2 weeks - i have only seen once a week - that is not great - but it really doesn’t change so much week to week unless there is a change for the better. Counselling is for well people not currently psychotic people - and is not needed at this point.

The hospital i was in had light Art therapy though - i found that useful.

unfortunately for the family it is a huge waiting game, which often ends well

3

You didn’t say if she was still psychotic. Was she hearing voices or hallucinating in any way? If not, maybe you could switch her medications. Haldol is a very harsh drug. The years I was on it were the worst years of my life. There are drugs that are not so demoralizing. There are two types of anti-psychotic med’s today. The older drugs are referred to as “typical” med’s, and the newer ones are called “atypical” med’s. Generally, the atypicals are much easier to tolerate than the typicals. If she’s not psychotic, there is no reason your mother needs to be on such a harsh drug.

4

Yes, the treatment did come after her first psychotic episode. For a number of years prior she had become mistrusting of others and became delusional, but the voices came on very suddenly. When I initially asked the director of the facility if she anticipated my mother improving enough to return home after a few months, she seemed to think she would.

What kind of time frame do you think we might expect? She does have a house and a pet that family members take care of (I live across the country) and I handle her finances, but if we’re looking at several more months, or even years, we’ll need to plan accordingly.

5

No one can say how long. It depends on the medication and the compliance with the medications and how individually suited she is to each medication they try her on.

It is hard to say - she could be better in 2 weeks or still unwell after 2 years (rarer)

the most common I believe when you get past 3 months continuous would probably be a 6 month stint in total

This is absolutely based on what i’ve seen in psych wards only
it’s very anecdotal

So sorry to be so blunt, but in a way it is a hopeful thing to say because even after so long recovery is possible
recovery as in a good life not off meds and cured

6

Prior to being hospitalized, she was hearing voices constantly and could barely function. I’ve spoken with her about it as well as the case worker at her facility, and she says she no longer hears voices. However, she does have a lot of delusional thoughts, which has been the case for years. For instance, when she sees certain combinations of numbers it can arise suspicions, and she’s skeptical of signing any kind of paperwork.

Thank you for your input on medications. Do you think I should try to get in contact with the psychiatrist directly to express my concerns and ask about switching her to a newer class of drug?

7

also wanting to go home is common - don’t let it upset you please

It is completely natural and feels sad to watch, but believe me it’s better she is in a facility while she needs it

8

I’m on an older class myself that is not used in the USA even… but i have only heard bad things about haldol, it surprises me that they use it. They tried my friend on it, it didn’t suit her, now she is unmedicated. they tried my sister on it, it really didn’t suit her either .

The drug i’m on is a lifesaver and at least i don’t have to worry about the meds causing diabetes, the new ones carry that risk, although a small number, it’s significant.

The new ones are less likely to cause movement disorders. sorry you are finding your self and your family in this situation… it is extremely difficult for the carers
I’ve had Schizophrenia since 1992 roughly and there is a lot of support on this site

9

It is hard to say what to say to a psychiatrist.
They don’t pay an awful lot of attention to the family very often.

10

Thank you for all of your input, it’s much appreciated. I guess expectations were a little high from myself and family members in regard to how soon she’d be well enough to be on her own. We certainly don’t want her to be home if she’s not truly ready. I will keep checking in with her case worker and see what I can do about having her medication changed.

11

She should probably be tried on something else though yes, haldol is the cheapest you can get, so that could be why they still use it.

if she is clearly not improving something has to change

12

I would guess so. One thing about the atypical med’s - some of them are more expensive than the typicals because they haven’t gone generic yet. The med’s I take - Geodon and Seroquel, have both been around long enough that they have gone generic, so they’re cheap for atypicals. Zyprexa, Risperadol, and Clozaril I think have all gone generic. Also, how a person reacts to med’s can be unique. Generally, the atypicals are much easier to tolerate than the typicals, but it isn’t that way for everyone. I talked to one guy who found Geodon hard to tolerate, and Haldol easy to handle. That sure isn’t the case with me, and with the majority of sz’s. I would imagine that you would need to talk to the psychiatrist the med’s.

13

Getting your mom to sign a release would help you get more info. on how she is doing. You can always tell the doctor what you know.
Sounds like the medication she is on is not helping. Hopefully they will find the right meds for her BEFORE she gets out. That way, they can monitor how she does.
I hope your family can talk her into getting into a better place if she`s not able to come home yet.
It might be helpful to join a support group for yourself. Check out nami.org for information and groups in your area.

14

Thanks for the suggestions. I’ve had her sign a release for the assisted living facility, but not with her doctor. I’ll see if I can do that as well and give the doctor my input.

From what I’m gathering, to reach a point where my mother is accepting and understanding of her illness will mainly require finding the right medication. If that is the case perhaps the facility she’s in wouldn’t have a big impact. She does see two different psychiatrists once a month each and they speak with the staff at the facility, who have all been very friendly and helpful, and don’t doubt they have her best interest in mind.

Anyone have experience with both mental health treatment centers and assisted living facilities at this stage, or have an opinion on whether this would have an impact on her improvement?

15

bump
I have experience of my sister in supported housing of some sort, she was too unwell to stay
Hospital didn’t help her either and she died absconding after 2 yrs inpatient

16

Hi @cygotta. When it comes to privacy laws and release there are some work arounds that you can do. My son has a habit of not signing releases. Recently he was in a shelter and because he wouldn’t sign one for me then I wasn’t aware that he was in the situation that he was and therefor unable to help because I didn’t know. Finally I got mad and called the shelter stating: Look I know you can’t talk to me however I KNOW that you can listen to me and I need someone to listen to me. They put me through to someone and I was able to fill in the missing information and correct the misunderstanding that was happening.

Phrases like: Hypothetically what would happen if… You can talk to her psychiatrist and doctors this way. Ask questions about different types of medications and what the standard procedures are. How long one should be on a medication before the decision is made to switch. You can also tell them what you are noticing and what your concerns are.

It does sound like she has access to good support and treatment. Unfortunately sometimes all the options don’t add up to much when the person doesn’t accept the diagnoses and treatment.