On My Mind

A greeting,
a puddle, stepping,
to the side

I am reminded today of the film Groundhog Day. When Ned greets Phil on the street (everyday) & Phil steps into that deep puddle (everyday). Then the FREEDOM of stepping around in time!

I see you today puddle - all wet & awaiting, yet my feet will stay dry.

(Just because one person cannot do a thing - does not equate to this person having to do that thing instead).

My Dad loved buffet meals at my house so much that he was always first in line .

cwillie,

I agree. Many years ago, when I was hosting a buffet supper in my home and handed my FIL a plate and told him to help himself, he refused the plate and told me that a man is served his food by a woman.

My response was "So manhood is something a woman serves you on a plate?"

Nothing to do with being old fashioned, the man despised women.

Beatty, I have known one person who was diagnosed with BPD and she is all over the place in terms of symptoms. Long crying jags, super high mania, delusional thinking, and verbally and physically abusive with husband and children.

The SMIs are all cyclical in nature (recurring at intervals) this particular person with BPD has several regular episodes a year. The episodes last for weeks as she skates back and forth between the symptoms mentioned in the first paragraph. During those episodes she makes her family's life miserable. Even when the episodes decline they all do the traditional egg shell walk, they are terrified they will set her off again.

When she was younger, she was better at hiding her issues. If she slipped up and people saw her upset in public and asked her what was wrong, her blue eyes would get round, her voice would pitch higher and she would blame husband or children for upsetting her. She looked as innocent and childish as Shirley Temple as she told her story. People would comfort HER.

She's older now, early 40's, getting worse, and her public filters are slipping. Instead of coming to comfort her, people are now approaching her family and asking them if they realize she has a mental illness.

Men who expect their women folk to wait on their every need are not old fashioned, they are self serving and misogynistic.
You couldn't have gotten any more "old fashioned" than my father - born in 1920, spent his whole life within the same rural community, church elder - and he never had those kinds of beliefs.

I finally got my hands on a copy & just finished Liz Scheier's book.

So glad I did. Not only an inspiring & honest book but funny, insightful & very well written too. I was amazed at her natural boundary making skill.

It appeared her Mother had BPD, a strange label I have never got my head around. I think I've met one or two, not sure.

I felt the air had been sucked from the room with one - just so needy.
Like a black hole. The other was a trouble maker - had a non-friendly smile & an excited glint in her eye as she found a sensitive topic to poke & drive a skewer into each person she met.

That description of the meds numbing the whole brain fit with my experience with Scz. The 'positive symptoms' of voices/delusions get dulled & the 'negative symptoms' of deep stillness/blunt affect can be somewhat lifted.

My LO has been very stable a long time. But I still see both distraction & bluntness.

As a child I found trusted adults to nag at to DO something... Yet none would get involved (or saw the futility in doing so). I had & still have the siblings that prefer to look at the rug, never what was swept underneath.

AlvaDeer,

"Anyone who has dealt with mental disorders knows exactly what we are talking about".

You are so right. Once you know SMI, you can't unsee it.

I think one of the bigger problems is how few people actually can recognize mental illness when they see it. Schizophrenia and bipolar are like their genetic buddy autism in that they are spectrum disorders. Sure, we all can pick out the SMI homeless person who is yelling at the empty space around them, but, when we are looking at the people in our families, who we grew up with, recognizing mental illness is complicated.

Even psychiatrists aren't comfortable diagnosing SMI until they have worked with someone for at least 6 months. What is really interesting is that no one wants to diagnosis children with mental illness. The reason is pretty simple, children can present the characteristics of their mentally ill family members.

While there are complicated explanations, there is also a single word for how that happens - it's called normalization.

If you grow up with a parent with SMI there is a strong chance you will normalize their SMI behaviors. If one sibling tries to point out that Mom or Dad's behavior is questionable, they might be shouted down by the other siblings. Or they might be alone as the Liz was in her book "Never Simple". Liz's struggle to communicate how hurt and confused her life was by what she saw as her mother's constant lying, is painful to read.

Of course she sees her mother's constantly changing statements as lies. That's how rational people process information. In other words - Liz realizes her mother is not telling the truth, her rational brain concludes that mother is liar. Problem is mother is suffering from SMI and isn't rational.

We tend to look at the moments in which our family members with SMI are acting normal and use that as the proof our brain needs to keep normalizing all of their behaviors.

Once Hated DIL,
I am so glad you read Liz Scheier's memoir, Never Simple. It's one of the most profound I have read on the subject of dealing with a mentally ill loved one. There is only so much that one can do, and he medical community can do almost nothing. You are so right about the idea that medications may help. Even if some drug or some drug "cocktail" is found to address things, nothing in our diagnoses today is much more than guesswork. In a case in my own family, when questioned, a doctor said basically they know it is "bipolar disorder" if Lithium works. And that's about the truth of it. So little is known about our brains and dementias of the aging brain aren't understood much better than brains impaired by varous mental illnesses and disorders for being "understood at all".

Therefore we end up medicating so that someone can be "lived with" or "cared for", and even when something is found that holds a patient between being knocked out completely or over the top "acting out", the cocktail doesn't continue to work after a bit of time.

Anyone who had dealt with mental disorders knows exactly what we are talking about. It can become/can see so very hopeless. And often it IS in fact quite hopeless. We just don't know enough now.

A word about psych meds. We need realistic expectations.

These meds don't really treat schizophrenia or bipolar, the hope is that the meds will lessen the symptoms. For some people they work really well, for others they work less well. The meds do have really unpleasant side effects that can become permanent.

As was said in a NAMI Peer to Peer presentation in regards to meds. "There is a tiny bit of your brain that's not working right. The meds numb up your entire brain in hopes of helping that one tiny spot."

Some families have disappointing results with AP meds, other families have tremendous results.

On the personal side, we are lucky that my son will take anti-anxiety drugs. Anxiety is often the side effect of the symptoms (with the paranoid version of scz, well who wouldn't be anxious if everyone was out to hurt you;) Interestingly enough, his paternal grandmother's scz was quite similar to his - the voices she heard were also the voices of actual people in her life.

I just read Liz S.'s book, a great read - oh my the trouble my MIL's lying caused (!) Now we realize for her it was real, but at the time people believed her lies. She used to tell people all kinds of stuff that she claimed I had said. Eventually, I wouldn't visit her or even talk to her on the phone . There was no way I could have possibly said such things as his extended family believed, I hadn't spoken to the woman in years. My husband's family (especially his mom) hated me for the terrible things I (hadn't said) to his mother.

As Alvadeer pointed out in another thread - we often get dragged back to take care of these abusive people in the end. Even though her mental illness caused the issue, the abuse suffered is real.

cw: So sorry for the loss of your mother's roommate.

I just noticed an obit for a woman who was one of mom's roommates, it says she died in her 90th year. I can't get over the fact that poor woman was only in her early 80's when mom was there.

Need, that is such a wonderful thing to do. I so wish there was a way to share pictures here. I know it's not possible. Just a winsome thought.

I have been spending too much time surfing on the net! I love doing my genealogy work but it’s addictive!

So, I called a head start preschool and found out what size clothes the kids wore. I have started sewing projects to give to the children. I am doing dresses and small stuffed animals.

The internet is a wonderful thing for satisfying curiosity

boondocks (n.)
"remote and wild place," 1910s, from Tagalog bundok "mountain." A word adopted by occupying American soldiers in the Philippines for "remote and wild place." It was reinforced or re-adopted during World War II.

JoAnn, "lives out in the boonies".
We use that term here too! Wonder where it originated from..

Pam, I used to have a hairdresser who did appts. at her home. Once I went and she ordered a pizza and offered beer. Still charged the same though.

Very convenient, Pam! Sounds wonderful!

I had a first today! A good first that I wished was available when Mom was still with me. My beloved hairdresser quit her job at the salon about 5 months ago.. told me she would do me privately. But with my pending retirement and summer activities I was swamped. Called her last week,, she is now a "traveling hairdresser",, she comes to your house! My hair was a wreck, and I was a bit nervous about what this involved and might cost,, but what the heck I'll try it once. I love it!! She brought literally everything and cleaned up after, and the price was less than when she was at the salon! I'm going to get my color redone in a few weeks, and I am sure going to recommend her to everyone! She told me she does entire families in one visit ( this is a sell for one of my friends) and that she does early am apts where people are still in their jammies with their coffee! this is the life!!

I have two cousins, parents are siblings, that are Bi-Polar. Neither take meds not because they don't think they are Bi-polar but because of the side effects.

E is a 71 yr old male. He said meds make him feel like he is another person and he did not like that. So he told himself years ago that he needed to except his Bi-polar and deal with it. He smokes Marijuana to help wuth symptoms. He has had a great life doing all kinds of things. His last job he taught for 20yrs.

S is a 67 yr old female. She self-medicated with alcohol and was diagnosed in her 40s. She took meds but said she never felt right. She said she drooled like a little old woman. She stopped them. I have not seen her in years because she lives 2 days drive and lives out in the boonies. Her husbands cousin does visit when he is in the State and says my cousin has gone off the deep end. Very hard to handle. Since ALZ runs in that side of the family, I would say she may have early onset.

I think my cousin E is in denial when it comes to ALZ. The family members who suffered from it, his Mom, her mother and Moms brother, all showed signs in their 70s. There were 8 kids and 2 passed before they hit 70. The others had other health problems.

Once hated. Thanks, and you have opened the door to more research for me!!!!!!!!!!!

This discussion on anosognosia is very interesting to me.

It was a new Doctor, hearing my tales & trouble, that first told me about it. Said it appeared my LO 'lacked insight' & stated this medical name. Also stated anosognosia was common in stroke survivors & more severe mental illness, especially Sz. I forget the stats now but Sz may have been 60-80% I was like WOW. Now I see!! This makes sense now.

I am reading Liz Scheier's book now. 3/4 through. Thankyou for the Spoiler warning!

Alva, We deal daily with people in the medical field who have no knowledge or understanding of anosognosia. Fortunately most of our family members can win their doctors over by sharing the writings of Dr E Fuller Torrey - his work on schizophrenia is recognized world wide. The writings and experiences of the individuals are nice to hear, but they are just a tiny bit of the story.

As you say there are lots of reasons to not take the meds. Our family members can usually list all of the side effects and all the good reasons to avoid those side effects.

Confabulation is the magical thinking of the world of anosognosia. First discovered with patients who had lost limbs and dementia patients, confabulation is often the "shifting of the story" to match the need of the moment. And our family members believe the second, third and fourth story, just as they believed the first version.

There aren't any strict lines in the brain damage caused by severe mental illnesses. They aren't being led into traps, their brains are broken and people tend to forget that when dealing with them for the very reasons you point out, many of our family members retain cognition and are quite brilliant.

The "voices" and sounds that are heard by people with schizophrenia register exactly the same on their brain waves as actual sounds. Identical. Some of those voices are quite friendly and as intelligent as the brain of origination.

As was said, scientists and doctors don't know anything about the wide spectrum of severe mental illnesses that come under the umbrella of schizophrenia and bipolar. They are all working from the symptoms.

Adding to say - Schizophrenia, bipolar and autism are all genetically linked - that's the biggest science news we've had so far.

Once hated, as a nurse who worked often being floated to the psyc unit, our patients said they did not wish to take their medications for VERY REAL reasons. They were many and involved. Foremost among them was the side effects of the medications including often impotence and lack of interest in intimacy, as well as their preferred their unmedicated world. For instance, the schizophrenic who loved all 200 0dd angels who visited him with regularity. Difficult as it is to imagine, they are often more comfortable in their unmedicated world. The third reason I often saw, one that after all her years as a teacher/physician, the bipolar Kay Jamison Redfield says that she comes to believe she will be fine without her meds in the same way the alcoholic believes that he will be OK with a few drinks now that he is all better. They are able to discuss amazingly rationally their reasons for not medicating. They have some great insight, but it is simply WRONG insight, and often in discussion they will admit that rationally they KNOW it is wrong, and they are being led into the trap of magical thinking.

60% of the people with schizophrenia and 40% of the people with bipolar suffer from the symptom anosognosia.

Anosognosia is a lack of insight - this means the person is unable to understand they have an illness. People with anosognosia aren't going to take medications or comply with treatments because they are incapable of understanding that they are sick. A simple phrase for this is "they are too sick to realize they are sick".

Dr Xavier Amador is the expert on anosognosia and has developed a way to how communicate with people who suffer from this symptom. His book "I'm Not Sick, I Don't Need Help" introduces his communication methods. Many of Amador's lectures are available for free on YouTube.

Older medical people can be "unaware" of anosognosia if they are not up to date on their DSM. Even in clinical settings you will still find older professional people using the phrase "they are in denial".

People with anosognosia can't want to get better and can't choose to get better because they don't realize they are sick. Dr Amador's communication methods can help get them on meds, it's a long process and doesn't always work. Sometimes we can just make their lives a little better.

@Alva

You are right in everything you're saying. I have a family member who is a paranoid schitzophrenic and also bi-polar who recently spent three months in a mental facility (court-ordered).
If they had complied with their treatment plan and not fought against the people (family, social workers, nurses, doctors) who are on their case and take care of them, they would not have had to be arrested and then locked up.

Riverdale,

I am glad you read Never Simple, the memoir by Liz Scheier. I have been the one recommending it right along, and I believe that Barb has also, and has an almost personal connection with the book in terms of its editor.
I found it quite by accident on the library shelves. I have never gotten over reading it, and have recommended to so many.

Burnt,
I agree with you. I have in my extended family a lovely girl who is severely bipolar. It has broadened my outlook on mental illness and its treatment in our country (or lack of treatment. Or confused treatment. Or cost of treatment. Or lack of knowledge. or or or).

I am convinced we know almost nothing about mental illness and how to treat it. And it takes great personal and familial strength and determination to try to deal with it.

There is an author named Kay Jamison Redfield who is a favorite of mine, with some memoirs and also the author of textbooks on mental illness, a physician, a teacher, and a lifelong sufferer of bipolar disorder.
I have read almost everything she has written. An AMAZING woman, yet she suffers from a disease that can take her down in a second, and she knows it. She's bipolar.

People who live with some disorders learn the signs of needing to check up or check in. But it takes a certain mind to say nothing of enormous strength to even begin to live with or help someone else live with mental illness.

@Riverdale

I think mental illness is very similar to addiction. Whereas when the alcoholic or addict is not serious about recovery and treatment, then recovery is impossible.

The same with mental illness. Like the alcoholic or addict, the mentally ill person can be forced into treatment. Often it's court-ordered. It never works for a person when it's forced on them.

Recovery has to be a person's choice. If a mentally ill person will not comply with treatment and fights against it, they can't be helped. Locking them up in a secure facility is often the only safe alternative for them and the public. Then keep them there until they become compliant with treatment and recovery.
This does not happen though.

It's basically catch-and-release with the mentally ill. They get taken to a hospital ER, given drugs, then send back out on the street or to a nursing home where they do not belong. Many times it's literally the street or a homeless shelter. Or they go to jail. Prison is the largest mental health service provider in the United States. We also consume 80% of the world's supply of psychiatric drugs. Yes, I said WORLD supply. The rest of the planet gets by well enough with the 20% they use.

I remember when my first husband who was an alcoholic went into rehab. The first thing they did was try to give him anti-depressants which he did not need and refused.

A person has to want to get better and want recovery. It can't happen if they don't.

Regarding Shingles, I had Shingles when I was 17 and my son had Shingles at age 18. Very painful. My mom had Shingles when she was 88, from her head down over her right eye.

Finished the book. Quite amazing and heartbreaking. A certain testament to a daughters love despite going through so very much to put it mildly and am impressed with all NYC tried to do.

Riverdale, Alva and I both frequently recommend Ms. Scheier's book as a testament to the fact that there are some folks you can't help, no matter how much you love them.

(Spoiler alert)--in the end, Mrs. Scheier, with dementia, COPD and emphysema, on oxygen 24/7 and evicted from her rent-controlled NYC apartment, was situated by NYC social services in a nice Medicaid-funded Assisted Living facility. She eloped from there, got herself to a hospital emergency room in Manhattan (she was convinced the doctors there would save her) and died shortly thereafter. There was simply NO helping this lady, who was incredibly smart and resourceful, but terribly mentally ill.