Being a good advocate for institutionalized family member - need advice


#1

Brother-in-law is in a long-term facility the past 4 years and has been ill for 25 years apx. My mother in law kept us out of the loop and took care of everything until her passing last fall. Now my husband is his guardian, though he is not inclined to jump in and be very involved.

I am, however, a “fixer”, and want to know what sort of meds he’s on, and how often he sees a doctor, etc. His “primary” doctor is a DO in a town 3 hours away, though we live near a major metro. My brother-in-law’s demeanor has become very withdrawn; he won’t come out of his room to see us when we stop in, and refused to see his mother the last 18 months of her life.

I suspect that he’s overmedicated, and wonder about the quality of psychiatric care he’s receiving. He is on Medicaid. The last family meeting acquainted my husband with his diagnoses (8 or 9 are listed) and the basics and my husband didn’t ask much.

For those who have experience handling this situation - how insistent should we (I, let’s face it) be about having his meds and care evaluated, or should we leave things alone if he seems stable, is eating and not being violent. I do know that his meds have been periodically changed.


#2

**Hi Barbp…
Is your brother-in-law near you? Sounds like he may be upset about losing his mom. Seems like his doc would know about this and be able to answer your questions on his behavior, meds, etc…I know that sometimes they will not give out that info if the person is of age–but since your husband is now his quardian, he should have access to that info.
I would also be worried about his medications.
Please dont try to take this on yourself. You havent said what kind of illness he has. I am assuming schizophrenia. If you live in the city, there should be a local NAMI support group in your area. They can help with a lot of resources and offer support. Maybe even help to find a good doc in your neck of the woods.Hope this helps—. **


#3

Can I ask you which medications he is on now. Nothing helped my brother until he was put on Clozapine. You might want to consider putting him on that, if possible. My brother took Clozapine for 20 years until he had to quit due to side effects and now we are looking for another medication. I think it’s great that you are interested in trying to help your brother in law. So many people dont have anyone to help.

Is he in a nursing home or assisted living facility. My brother is in assisted living but I am trying to get him into a facility with no help from his doctors.


#4

Yeah, someone can be on the same meds for years and be doing OK and then for some unknown reason, the meds can stop working. Or sometimes the dose needs adjustment, maybe higher, maybe lower.
My diagnosis is paranoid schizophrenia. Of course I’ve never been in your situation, but if I was you I would talk to the doctors in the facility to get an idea of what kind of treatment he’s getting. I seriously doubt he’s suffering any abuse, but there is always that possibility. Just generally find out what his life is like in the facility, find out what a typical day is like, or a typical week. Yes, when I was hospitalized several time, they always upped my medication until the crisis ended. But yeah, see what medication he’s on and the dose and maybe do some research about it online. I would be insistent about it. After all , his doctors should have nothing to hide about his treatment if they are doing nothing wrong. They are professionals, and they should act like it. They should EXPECT that family would want to ask questions and actively get involved. After all, his facility is not the Pentagon, it’s a hospital and families have rights. And PATIENTS have rights, and you have every right to make sure NONE of those rights are violated.
Nowadays, many businesses and stores and other services post reviews online. Maybe you can go to the hospitals website or some other related website and see if there’s reviews. if so, read them to see what other people thought about your brother-in-laws hospital. Just a thought.
Maybe investigate why your brother-in-law changed and became more withdrawn. Look for a possible trigger, and what they’re doing about it.“The squeaky wheel gets the grease, right”? Your brother-in-law is lucky he has you. People need someone who cares. I wish you good luck.


#5

Your poor brother-in-law. He could be over medicated or he could be in negative symptom. Probably a bit of both.

It’s amazing what meds can do and can’t do. It does sound like they have him sedate enough to put him in a corner and forget about him. No therapy or retraining of skills?

My brother was on 150 mg of seroquel, and a very high dose of zoloft and between the two, and the addition of negative symptom, my brother sat very still gazing at the walls or sleeping for 19 hours a day. He hardly spoke, he hardly moved, he was living in the nightmare of his head. He withdrew, he was physically still here, but he was fading from us.

His meds got changed to 50 mg seroquel and 40 mg Latuda taken off the Zoloft and put on Xanax AND, here what he credits as his success; was put back in Cognitive Behavior Therapy so he could relearn the skills this illness took from him. That was almost three years ago.

Flash forward to today and my brother has a job as a gardner with the city parks department, he’s just started college, he has his own apartment. I do live with him as I start college too. (I’m almost 18. My brother is 29) His humor is back, his zest for life is back. I get to see what a kind and amazing guy was trying to get out from under this illness.

There are some hard days for him. There are times when his self termed “head circus” acts up and makes his day harder then need be. But he still goes to therapy, and takes his meds and keeps in contact with his doc. He does drive and is learning more coping skills and learning how to manage his money. He’s working his butt off now to be more self-preserving.

The meds woke him up, the therapy and retraining gave him many of his functioning abilities back.

It’s a hard situation all the way around. Getting a doc closer to you guy will be of great help in case of emergency.

there are many good resources.
www.schizophrenia.com

www.nami.org

These are great starting places to learn about this disease, meds, treatments, answer questions and get to a lot of other resources in your area.


#6

Welcome to the forum Barb.

You may have to get your husband to ask these questions. Due to privacy laws your brother-in-law would have to sign a release form giving you access to his file and it doesn’t sound like he is capable of or wants to do that right now. As guardian your husband should have the right to know what medications he is on and how often.

The situation does sound concerning. Without seeing him than there is no way to tell what condition he is really in. Not that I think they are mistreating him but it’s always nice to see for yourself. Personally I would insist on being able to see him however I don’t know what the best approach would be to accomplish this.


#7

Thank you all so much for your replies and ideas. I can get my husband to make inquiries about what the meds are, he just won’t be very proactive as he thinks that eating and not being beaten or beating anyone else is good enough at this point. I don’t suspect the facility of mistreatment, I just think it’s more warehousing than therapy or attempts to help him recover.

My BIL has a diagnosis of schizophrenia, former alcohol abuse, OCD, suicidal ideation (something I’ve not heard before was an issue with him), delusional disorder (this I DO know - he thinks he’s Jesus and has worn robes for years), and a “head injury” which occurred while hospitalized years back and he fell or struggled out of bed and knocked his head on the floor and had a hematoma. Mother-in-law finagled a cash settlement out of the hospital and it then became a frequently-mentioned cause for her.

The religious mania has been present for a long time, also eating disorders, anger at and manipulation of his mother for keeping him locked up. With his limited freedoms this took the form of having “trances” where he would run around knocking things over and unresponsive to others until he practically fell down, and then finally refusing to see or speak to her after years of multiple daily calls to her.

He initially did well on meds, once adjustments were made to where he wasn’t a complete zombie, but his mother insisted on getting him out of the residential places and “giving him a chance” to live independently, whereupon he quit the meds and ended up back in care in worse shape than before. Repeat that pattern several times until he is in the state he is now.

And overall, I do realize that we’re even fortunate that a place was found for him - our country’s mental health care system and procedure for getting people into help is a mess. His mom did her best, but she also made a lot of mistakes along the way that made things worse, refusing all help out of shame and defensiveness. This was too much for one person to try to handle.


#8

I am so sorry this poor man and his mother had to live through this. She was afraid to get help and it sounds like that in turn didn’t give him much chance for healing.

I’m glad to hear he has a place and he won’t be isolated or ignored any more. How scary and sad for him to have all that time “locked up”, be it in his head or in a ward. Your right, the man is being “Warehoused” There is so much more potential for healing if he’s just given a chance.

It takes effort and patience. I am grateful that my family didn’t give up on me, and got me help and got me out and about. I applaud your efforts and your caring for being a good advocate. I bet once your husband sees improvement in your B-I-L, he’ll be more on board with helping him heal. But if he was kept in the dark about a lot of stuff, he might very surprised about how all this played out.

I was very hard on my siblings when I wasn’t well at all, and because of that, I’ve been reading about “Sibling’s survivors guilt” I wouldn’t say your husband isn’t proactive, he just might be very overwhelmed. This is pretty hard core family dynamic.

I am so glad your brother in law has someone on his side.
I’m rooting for you


#9

Surprised, you are so right about the guilty sibling thing. The third brother is a quadriplegic/quadriparetic since 1979, cut down at age 19 in a drunken car wreck. So mother-in-law was trying to manage both of them in a very codependent way, overdoing to the point they became even more helpless, if that’s possible, even as she discouraged my B-I-L from getting proper mental health care for several years. Estranged dad was no help other than to criticize all three sons.

My husband feels very guilty that he had a relatively normal childhood and escaped without the kinds of problems his brothers have. Since M-I-L died, he is also having to supervise the bedridden brother who is still living in the family home, though it’s not a legal guardian arrangement. This is not in his area of comfort or expertise.

We are going to get a list of meds/dosages for the past 2-3 years, finding out if and when they were changed. It has been suggested to me that we should look for a pattern of changes at the same time each year, perhaps after the supervising doc attended the Big Pharma convention and was sold on some new meds to try. Not sure there’s any long-term caregiver at the facility that would remember if B-I-L did better or worse after the changes.

I do appreciate the thoughts and support!