Finding a Georgia Personal Care Home

Posted July 28th, 2010 by
Categories: Mental Illness, Places to Live

{UPDATE 27 Sept. 2012 due to change in .gov website}

Go to

http://dch.georgia.gov/find-facility

and click on the link in the first paragraph that says “find facility.” From there you are taken to a Facility Location and Information Guide. 

Make your choices in the boxes and click “search at the page bottom.

 

Go to http://georgiahealthinfo.gov/cms/

Click on “Search For Care.”

A window pops up for you to select “Type of Facility.” Choose “Long Term Care.”

Enter your zip code or address. Then enter your choice of type of Long-Term Care, “Personal Care Home (Assisted Living).”

You will now see a map, and as you page down, a list of dozens (hopefully) of local PCH’s.

Now, I am not kidding you, this is where the work begins. If anyone knows of any shortcuts, please let us know. The only way to begin to find a suitable Personal Care Home for a mentally ill person is to telephone them one-by-one. Ask if they take residents of the age your loved one is. (Most take only elderly people.) It also helps to eliminate those that are female-only or male-only. Ask if they have an opening. If they answered the first two questions positively make a note to yourself to call them back every month or so to see if something opens up. If you call every home on the list and find no likely places, change the zip code search to a more distant one.

If you find a home that takes a young mentally ill person, go visit the home. Keep an open mind as you visit if you are really desperate to place your family member. None of these places are the “Holiday Inn” if you know what I mean.  The PCH’s that take a young mentally ill person are rare and the available slots fill quickly.

Let me mention one more method for finding a Personal Care Home. If your loved one has been hospitalized for mental illness (or maybe even if they haven’t been recently), ask the social workers at the hospital. This is how we found our first PCH. It was not an accredited or licensed home (or something like that) because it was relatively new and they were “working on” it. Anyway, they had empty beds and my son was actually fortunate enough to get a private room.

My son DS is now living at home again. Last year the Social Security Administration contacted us about a change in his benefits. They said he should be on SSDI instead of SSI. This was not something we could refuse. (Apparently this had something to do with a job he worked bagging groceries for two years.) What this meant was a little more money, but a loss of Medicaid (replaced with Medicare) which meant a loss of “SOURCE” funding which meant a loss of his personal care home. Fortunately things are working out okay at the present. He seems to be fairly stable in his mood and the “schizo” side of his illness; the drugs are managing things well enough or his illness has stabilized on its own. He is very grateful to be home. At first he was thanking me every day. Now he is down to telling me maybe once a month that home is so much better. Of course, this tweaks the guilt pangs in me, but I only need to remember how rough the first two years, and especially the first year of his illness was to calm those pangs. Now it is fine that he is home.

When I reflect back I feel that we were carried in the palm of God’s hand. I was stretched beyond what I thought my limits were many, many days, but there were so many little miracles that came through at the right time. I hope others too will find the little miracles they need to survive: there are no easy answers when it comes to mental illness.


Finding PCHs and Physicians in Atlanta, Georgia

Posted December 3rd, 2009 by
Categories: Mental Illness, People Who Help, Places to Live

I recently received the following comment from Elizabeth B.

I am so glad to have found your blog. My 20 year old son has been in residential treatment for severe major depression/ PTSD for 2 years. I am heartsick that we cannot afford to keep him in treatment any longer and am desperately seeking a good group home in the Marietta area as well as a therapist and a psychiatrist. These clinicians have been provided by the residential facility but neither is in private practice and he has outgrown the child/adolescent ones from pre-residential days.

My DS is still a high school senior but has been on hospitalization status for 2 years. I have recently been appointed his legal guardian and we are in the process of obtaining SSI/Medicaid. He self-harms and is chronically suicidal (many features of BPD) but no “official” diagnosis. He averages at least one 1013 hospitalization every two months. Even if we could afford to continue residential treatment, he is being discharged from the residential facility for failure to make adequate progress and for not keeping his safety contract.

I also have completed the NAMI Family to Family course and found it to be invaluable. The course I attended was in Atlanta though and I am lost trying to find something for my DS in Marietta. Please help!

Hello Elizabeth,

I am sorry to hear about the difficulties your DS has been having. I have a few thoughts that I hope may be helpful.

First, even though you have applied for SSI/Medicaid, can you try to fight to keep your son on your insurance or your husband’s? This is one of the regrets I have about my DS. At the time he became too old to be covered by my husband’s health insurance he was not “disabled enough” in my opinion to qualify as a disabled adult dependent. Now ten years later, I fear the delay in asking for coverage may make it even more impossible to get approved. Then again, I wonder if my son would have qualified for SOURCE if he still had some private insurance. I don’t know.

About finding a place for your son, such as a group home or a personal care home, I suggest you start here:

http://socialworkersteam.com/Lincensed_pch.aspx . {Edit on July 28, 2010: This site appears to be dead. See my next post on finding a PCH.}

Start with the SOURCE Placement Services. Personally, I would advise skipping Betty Hardy. Unfortunately they don’t always help a lot with the footwork, and you may still find yourself calling a hundred places to find that most of them do not accept clients of your son’s gender or youth, or that they have no current openings. I fear that your son’s inclination to self-harm may make it difficult to find placement also. Nobody wants clients that are troublesome, but there may be a few caring souls out there. Also, understand that personal care homes are not places of treatment; they are only a place to room and board. They give a certain amount of supervision and they make sure the medicines are taken.  At first I was nervous about the fact that they did not lock doors during the day and my son could just walk away whenever he felt like it. At least the latest PCH my son is living at has an alarm that sounds on the outside door when it opens. The list of personal care homes on the above page is very abbreviated. There are many more personal care homes, and the people from the SOURCE Placement Services can give you more names to check out.

From what I remember of the procedure, you need to have a personal care home picked before you can go through the application process for SOURCE, but you should ask about that. It can be tough to find an opening in a personal care home you would care to use, then you could lose the slot while you are waiting for approval, I think. Hopefully, they still do not require you have a slot before going through the process for SOURCE. After we got approved for SOURCE I found that my DS’s SOURCE social worker was sometimes a good resource for information on some things.

About finding doctors or therapists, I think Medicaid does not pay for therapists.  I could be wrong, but I think that is the reason my son has never had one since he left private insurance. About finding a doctor, I started with the doctors I heard about through my son’s numerous hospitalizations. I would read online anything I could find out about the doctor’s background. I learned, for instance, that one doctor that eventually “fired” my son from her practice after he was verbalizing some violent inclinations, had the most interest in treating postpartum depression: not a good match for my schizo-affective young male, I guess. There was one doctor I found by this method that I thought sounded like one of the best doctors I could find in the Atlanta area for treating schizophrenia. Then my son refused to see him because he had some paranoid feelings about this doctor when he met him in the hospital. We are seeing another doctor in the same office. I figure one doctor may consult another if the one is having a difficult patient.

By the way, what is a 1013 hospitalization?


From Weight Gain to Extreme Weight Loss

Posted October 15th, 2009 by
Categories: Medications, Mental Illness

It has been a long time since I have posted, and I just want to give a little update on our recent concerns.

My son DS is still living in a personal care home, and thank heavens, except for occasional frictions, it seems to be working out. He has been there since December 2007. He refuses to have anything to do with a day program, but we have worked out a bit of a compromise with the caregiver to give her a break: DS comes home on the weekends.

A year ago this fall, DS was beginning to have some mood problems again. We felt the psychiatrist was not taking our concerns seriously. We made a change to another psychiatrist. Dr. K. made some changes and the moods seem to stabilize. In the meantime, we continued to be concerned about DS’s weight gain. Since 2007 he had gained about 50 pounds or so, after initially losing 20 pounds or so during the worst times of his fears and paranoias. The weight gain was most likely due to the Risperdal he has been taking since 2007 to control his psychotic symptoms. In many people, Risperdal will adversely affect a person’s appestat to the point that they can eat and eat and not feel full.

So there was a concern about his weight gain, and Dr. K. suggested we try a new drug to control DS’s psychosis. The drug was Abilify. We stuck with the Abilify for about three months. The good news is his appetite was reduced and he lost about 30 pounds. The bad news is that many strange behaviors began to crop up. A few examples of what I call strange: he was talking at the refrigerator one day for about a half hour. He was kneeling on the floor in the middle of the kitchen praying for at least an hour solid. (Our religious practice, such as it is, would be to pray in private out of sight of anyone else.) Also, we caught him a couple of times stepping outside the front door in the nude. He could not explain why he was doing that.

So anyway, these behaviors were new and somewhat different from what was going on before. He did not seem to be having the excessive delusional fears of before, or at least he was not vocal about it.  So Dr. K finally admitted that the Abilify was not working out. DS went back on the Risperdal with all the cautions about being careful not to start overeating.

The weird thing is for the next three months he continued to lose weight. His intake of food was obviously very reduced, so that is why he was losing weight. After losing another twenty pounds or so over a couple of months, Dr. K. said that DS would need to stop losing weight, or he would put DS in the hospital. DS got very upset about that, but I had to agree that the doctor had a point. He was under 160 pounds, and if things continued, it could get very unhealthy. So this feels very strange, but now we are trying to encourage him to eat. DS has been up and down a few pounds, but he seems to be maintaining at the moment.

It does not make sense why there continues to be weight loss even now that he is back on the Risperdal. These drugs don’t do the same things to different people, and sometimes even the same people at different times, I suppose. Also I think the Abilify may have disturbed something in his system that still has not been put right.

So there we are.


Another Mother’s Story

Posted November 9th, 2008 by
Categories: Mental Illness

I received the following in an email from a reader of this blog. She gave me permission to republish it here. 

Dear Hero, I just read parts of your blog and wanted you to know that we have lots in common concerning our sons. Mine was born in October 1979. He was in gifted programs up until 9th grade. The doctor thought he might have Tourette’s at 6 when the teacher sent me in to have his eyes checked and it was tics. He had the vision of superman according to the doctor, but his “suspicion” was the Tourette’s.At 16, he finally got a diagnosis of Tourette’s, OCD and lots of ADD behaviors but no bother to fully diagnose it. My own diagnosis and other psychiatrists who never bpther to go too far with him has been Asperger’s all along, with the other symptoms waxing and waning, from month to month. He went to community college, got in through Running Start with the highest scores the counselor had ever seen in one of her high schoolers. He quit about one quarter short of an AA. Dad kicked him out at 20, to hopefully get him some help via a police call, when he threatened him once, but that only brought on more heart ache.My insurance dropped him at 23 and I was too tired to pursuit an appeal to keep him on it, so now his teeth are falling out, due to no insurance, but medicare and medicaid. Those dentists will only pull out the teeth. So I know some of your journey. I have been trying to find him an appropriate living situation, he is in an apartment through a mental health program now but very lonely, but is more skilled than the people who are in group homes.His family is worn out and yet can’t turn him away, but we are broken and it does not go away. His trials go on and on and what I have done the past ten years does as well, I often pray that God would trade me for him, to give him a better life, but so far, God has not agreed to this prayer. Sometimes, it feels that desperate. I so want him to be well and like he was when he was young. I just wanted to let you know you are being prayed for tonight. God Bless You and your family, (Another Mother) 

 


Weight Gain Problems as Mental Illness Stabilizes

Posted April 29th, 2008 by
Categories: Medications, Mental Illness

Last year after my son’s major psychotic break started and went on and on for six months, he actually lost weight… I guess about thirty pounds or so. The weight loss was a good thing because he was a little overweight to begin with, therefore the weight loss made him look to be at a healthy weight again… not too thin and not overweight.

solitary man in desert

photo by greggoconnell

Now as the severity of his mental illness symptoms has abated DS has started putting on weight again. I would say in three months he has put it all back and more. I went with my son to one of his psychiatric appointments and the doctor, after making a visual observation, decided to change one of his medications.

This is interesting how no weight scale is used. If I go to my regular doctor for anything at all, they make me step on the scale. I have never seen a scale in a psychiatrist’s office.  I have read that this is becoming a matter of debate. The majority of medications for treating mental illness cause weight gain. Obesity is becoming a major contributor in the USA for many serious health problems, such as heart disease, stroke, diabetes, etc. and any doctor should be concerned about this side of their patient’s health.

Then again, where mental illness is concerned, medication compliance is a serious issue. It is a common thing to hear of a person going off their medications and having relapses. I wonder if psychiatrists do not want to draw attention to a person’s weight gain because it will cause only more reluctance to take the medication. Psychiatrists and their patients have to walk a very fine line. This is something very hard to do where the science is so inexact, and the medications leave a great deal to be desired for being effective without serious side effects.

So, how do my son’s medications cause his weight gain? From what I have read they interfere with his body’s ability to recognize fullness after eating. He can eat and eat and eat (and he does) and never know when he has had enough. For the last couple of months I have tried talking to DS about this problem and let him know that he cannot trust his body’s ability to signal fullness. Also with him being a young man and not having much experience with dieting or counting calories or all that, I have tried suggesting to DS that he merely look at his plate, put a reasonable amount of food on it, eat, and be done.

I have also talked to CA (the woman who takes care of him in her personal care home) about creating fewer opportunities to overeat by cooking less at a time to begin with or putting away the extra food in the refrigerator after putting portions on their plates. She says, he always asks for more and it is hard for her to say “no.” I can understand this. I don’t always like facing his angry moods either, and I am always treading softly. (Yes, I am a wimp.) CA also made me aware that DS is buying cookies and sugary drinks in large quantity at the grocery store when they go together. He takes them to his room and eats them there, so there is no hope of her being able to regulate it. I agree this is a big problem also, so I have told her I will try to discourage him from taking as much money from his checking account, talking to him about having a plan for how he will spend his money.

This weekend when he was home for his visit, I tried to enlist him in talking about behavior modification to prevent overeating, using myself as an example. Yes, I could lose a little weight also. Last year while DS was losing thirty pounds, I was putting on thirty pounds. I had my pad of paper and pen and was writing down ideas and trying to elicit suggestions from DS. I then tried to get DS to do the same for himself. He was not interested. He knows he has a weight problem, but he says he is sure he can exercise it off. I expressed skepticism about that, but when I could tell I was not going to change his mind, I suggested we make a trial of it. We then talked about his exercise goals, and before his dad took him back to CA’s, I spoke with her by telephone within DS’s hearing about his new exercise goals. She wanted to argue with me about the futility of the program without controlling eating, and I had to say, “I agree, but we are making a trial of this, it’s a first step, and hopefully we can make adjustments in the future if we need to.”

Before DS left, all three of us, Dad, DS and I, took our turns stepping on the scale and we recorded our weights on the calendar. I am trying to make this weight loss program a supportive thing and hopefully not a competitive one. I never can get myself to lose weight for external reasons; I have to be ready to do it for myself, so I don’t know if I will be able to lose weight right now while I am dealing with some other stresses and goals in my life.   I have found weight loss to be rather difficult when I cannot make it my number one priority all day long.

From the way I see it, my son has just the opposite problem. He has very little to do all day long, so I can see that eating and sleeping may be his escape from boredom. Also I still wonder how much his schizoaffective disorder has affected his ability to focus on a goal or any task for that matter. While his delusions do not appear to be as severe as they were last year, he sometimes does not seem to be “all there.” This falls in line some with what I learned in my NAMI Family-to-Family class. Mental illness has positive and negative symptoms, meaning it adds things (like delusions) that were not in a person’s life before and takes away things also.


The Letter I Never Mailed to the Georgia Governor

Posted February 26th, 2008 by
Categories: Day Programs, Mental Illness, Places to Live, Recollections

I was going through my stack of papers and found this one. I intended to mail it to Governor Sonny Perdue of Georgia, the lieutenant governor, the Cobb County Community Service Board, and a few other individuals that I could locate on the mental health section of the Georgia state government website. I do not know why I did not mail it, other than from a feeling of hopelessness that it would do any good.

stuffed folder of papers

My overstuffed folder of papers pertaining to DS’s illness last year.

September 5, 2007

Dear Governor Perdue,

My son DS is mentally ill with schizoaffective disorder and living in a personal care home at _________________ Road, Marietta, Georgia, in Cobb County.

After some type of state inspection of the PCH last week, we were informed that DS needed to be attending a day program. He needs the therapy to prevent a relapse that could cause him to be re-hospitalized. (He has had three hospitalizations since June 1st, 2007) Also, the personal care home will lose its license if he is not involved in a day program, we were informed. If he does not attend a program, he will have no place to live but the streets. We were given two weeks to resolve the matter.

DS did attempt the program at OCS (the Hope Program?) off Windy Hill Road in Marietta. Unfortunately because of his mental illness, he is having fearful delusions about that place and is adamant about staying away from it.

We have been attempting to contact the Cobb County Community Service Board to find out about other day programs or solutions to his residential problem. My first attempt was shrugged off because I am not the client. When I put my son DS on the telephone, he first dialed ____________ and was directed to dial ____________. After dialing that number, he was directed to call the first number! When he informed the person on the line that we tried that number already, his call was redirected to a voice mailbox. (I do not know whose.) We have waited for a reply to the message left there 24 hours ago and have received none.

I am asking for some help in finding a day program for DS in Cobb County. His only resource to pay for one is Medicaid. (For out-of-county letters: I am willing to look at other residential arrangements in other counties, if that is what it takes to have DS in a residential arrangement and a day program.)

If HIPAA (privacy issues) make it difficult for you to communicate with me, DS would probably sign a release to discuss matters with me.

Sincerely,
(my contact info and DS’s picture)

I had forgotten about driving down to my son’s PCH and putting him on the telephone. I also remember another example of my level of desperation at this time. I took DS to the local homeless shelter (MUST Ministries in Marietta, GA) to try to find some volunteer who might be able to steer us in the direction of finding some alternate housing or programs for DS. As it turns out, it was Labor Day, and there was no one there we could talk to. We did see the homeless people loitering in the parking lot. It upset DS and he said, “you are trying to scare me.” I am not proud to say it was true. I was hoping to scare him sufficiently about the prospect of joining the homeless that he would return to the OCS program. Didn’t work.

One more note about the Governor Sonny Perdue. My mother said to me the other day that she had heard that the governor was proposing more money for mental health in Georgia. I usually avoid discussing anything remotely political with her because of our differences, but I replied, “Yes, more money would be good, but I think we need some new ideas, too.”


The Failings of Day Programs for Mentally Ill

Posted February 19th, 2008 by
Categories: Day Programs, Mental Illness, Places to Live, Recollections

Here is another of my Recollections posts, where I am trying to catch-up the story of my son’s diagnosis of schizoaffective disorder in 2007. 

Fom my son’s first hospitalization, the social workers’ I spoke with reminded me that an outpatient program would be available for my son, if transportation could be arranged.
 
The program they were talking about was called “OCS” or sometimes even the “Hope Program” and it is another offering of the Wellstar Health System. It is located off Windy Hill Road in Marietta, Georgia. The address is 2000 South Park Place, Atlanta, Georgia. I only know a little of what happened in the few days my son went there.
 
While my son was attending OCS, he told me the chairs and floors were coated in drugs and one of the other patients threw his drugs at him. Since this falls right in line with the delusions my son had been having all summer long, it can be assumed that he was still very ill. (I did have a social worker that told me she could believe the latter about drugs being thrown at him, because she had heard of just about everything in her line of work. To me, that stretches credulity just a bit too far.) My son DS also mentioned that he had seen Dr. K., while at OCS. I thought this was a good thing… you know, doctor supervision.
 
Whether because of the delusions or something else, in just a few days after his third hospitalization, DS got to the point where he vehemently refused to go. I telephoned the program to speak with someone about DS’s situation and to ask whether there was something they or I could do to help him to want to return to the program. I received a very flat refusal to discuss anything about my son because of patient privacy laws or in other words, “Mighty HIPAA.” (Let us all now kowtow.) That was the end of my son’s attendance at OCS.

Months later, I found a folder about the OCS program in my son’s room that he let me have since he wanted nothing to do with the program. Here are some quotes from the Orientation Handbook.

Quote from page 3:

The objective of OCS is to help our clients reduce or elimate symptoms and make positive lifestyle changes while focusing on a holistic approach. At OCS, we work with individuals who are experiencing marked distress due to depression, generalized anxiety disorder, panic disorder, obsessive compulsive disorder, bipolar disorder, schizophrenia, addiction etc. Through a multidisciplinary approach, our staff assesses symptom severity, determines the appropriate level of care for each individual, and assists him/her with the development and attainment of appropriate treatment objectives. When appropriate we use release of information to help us create a holistic treatment involving clients’ supportive social network (e.g. family) and multi-disciplinary doctors in order to provide an effective continuity of care.

In our case, obviously, the lack of “release of information” may have contributed to my son’s lack of “continuity of care.”

Quote from page 12:

Family members and/or close friends of clients are encouraged to attend each week. Mental health disorders and substance abuse/dependency are disorders that typically affect the family unit as a whole, Educating and treating the client, and the family, on Disorders increase the likelihood of the client maintaining a long-term lifestyle of recovery…. Family members and significant others are encouraged to utilize this opportunity to get support for themselves while continuing to support the client.

It is too bad no one told me I could attend with my son. After DS came from a mental hospital setting where visiting hours and information were extremely restricted, I do not know why anyone would think I could make that leap of thought.

From reading the OCS Orientation Handbook, I have come to the conclusion that the program’s strength lies in treating substance abuse. There seems to be an emphasis on that, including requiring patients to attend two 12-step meetings per week, obtaining the AA book and an AA meditation book. I seriously doubt this program has any benefits for a person like my son, coming off a serious psychotic episode, and probably needing rest and a low stress environment more than anything, as I have since learned.

After my son DS refused to attend OCS last August, a state inspector of some type visited the personal care home (PCH), and according to the manager, MG, my son was required to attend a day program or the PCH would lose its license. I took that to mean that DS had to attend a day program or be homeless, because I did not think the PCH would allow itself to lose its license.

house between rocks“between a rock and hard place” photo by judepics 

I tried to find out why DS was singled out for this requirement when there were other people in the home with a mental diagnosis not attending day programs. Was it his relatively young age of 27? The unofficial word I got from another staff member at the PCH was that is was the severity of DS’s symptoms that made him stand out, particularly the pacing and spending time alone in his room.

I assumed they were right… he must need a day program because his symptoms were severe, and he would get treatment or therapy or something there. (Wrong, I figured out later.)

I started calling around trying to find day programs. First, I tried the Cobb County Community Service Board. From what I have read on the Georgia government website these county community service boards are supposed to be very helpful for the mentally ill. I tried to make an intake appointment on my son’s behalf. The first question I was asked was, “why is your son not making his own appointment?” Thinking his mental illness alone might not be a good enough answer (because of previous problems I have had making psychiatrists’ appointments on my son’s behalf), I said he had autism (Asperger’s) and that makes it difficult for him. I received a firm reply, “we don’t provide services to the autistic.” When I tried to explain he had schizoaffective disorder too, the person did not listen at all, but she continued to deny us an appointment. I decided to call back the next day without mentioning the autism. As it turns out the day program that the service board administers was not accepting new patients anyway, but they did refer me to a program at “Walton Nursing” in Austell, Georgia.

This post is already too long. I will tell the sad story of what happened with Walton Nursing later. For right now, let me leave a couple of words of advice to anyone dealing with a similar situation for their loved one:

  1.  Always visit a day program with a family member. Visit for a whole day or session, if that is what your family member will be doing in the program.
  2. Speak with the state inspector of the personal care home, when they are making difficult demands on your loved one. Perhaps the PCH exaggerated the seriousness of the situation? (i.e. losing their license versus eviction of my son?)
  3. Day programs are not for the severely ill.

Mental Illness and Choosing Isolation

Posted February 4th, 2008 by
Categories: Mental Illness

There is a question of whether it is healthy for mentally ill people to isolate themselves by their own choice.

My son was diagnosed with Asperger’s syndrome (a type of autism) years before he became ill with schizoaffective disorder. He has always liked his privacy, and he has always spent hours at a time in his room.

solitary man in desert

photo by loufi

After he had his major breakdown last year, he went to live in a personal care home. It has come up twice in the past five months from the people that take care of my son, that his preference for being alone in his room is not healthy, i.e. it gives him nothing to do but listen to the voices for one thing. At one point we were pressured to put him in an adult day program with rather disastrous results. (This story will come in a later post.)

I am now enrolled in a class offered by NAMI called the Family-to-Family program. Like a breath of fresh air, I found support and explanation for my son’s desire for solitude. In short, the class taught that the three predictable features of a person in the post-psychotic stage of mental illness are exhaustion, depression, and delayed stabilization. People in this phase are in need of rest and recuperation because they have undergone major trauma and stress, physically, mentally and emotionally. One evidence of trauma I believe in my son’s case is that he lost thirty pounds with no conscious effort. He has not been in any condition to plan and execute a program of any type, even for weight loss, for months.

Here I have been trying to go to the “experts” about what to do to help my son… the people in charge of the programs. Now I find out that they do not really know what they are about.

I quote from NAMI materials (page 4.37):

This extended period of vulnerability routinely goes unrecognized by professionals as well as families. Although many professionals may now agree that biology causes the illness, they often assume that recovery is solely a function of ‘psychological will.’ Consequently many programs involve ambitious psychosocial treatments and full-day scheduled activities during the early recovery period when the individual is least able to participate.

This vulnerability period may last from months to years. Stress can cause additional relapses. The demand that he be around other people does not serve his need to heal, but I believe serves the needs of those who watch him to be able to actually see him… even when their solicitousness is probably doing him harm.

Understanding is coming very slowly to me.


Creative Hospital Discharging of the Mentally Ill

Posted January 29th, 2008 by
Categories: In Hospital, Mental Illness, Places to Live, Recollections

This post falls under my Recollections posts of my experiences with my son DS in 2007, who has been diagnosed with schizoaffective disorder. As I began to explain in my Third Hospital Admittance post, my son was hospitalized for third time in three months last summer on August 1st, 2007.

My husband and I and DS’s two youngest siblings were in Florida at the time he was taken to the emergency room. We were returning to our home in Georgia the next day when I received a call from DS on my cell phone. He was very anxious and fearful about the delusions and hallucinations he was having. He begged me to get him out of the hospital. “Begging” is actually too mild a word. I have never had anyone ask me (over and over again) for something with such fervor and earnestness. If it was in my power to to do anything, I think it would have been very difficult for me to do nothing. The power to release him from the hospital was in the hands of a doctor, as I told him again and again. I was extremely upset by our “conversation” if you could call it that.

DS was in the hospital until August 15th. In the interim, I made and rescheduled three optometrist appointments for DS. I was told by MG at the AM personal care home that DS had broken his glasses. I asked if it was just the lenses that broke or whether the frames were also broken. She did not know. She was only telling me what another resident had told her: he saw DS break his glasses. Apparently no one knew what became of the broken glasses. I remembered DS telling me earlier that there were microphones in his eyeglass frames that “they” were using to spy on him. I knew from the strength of DS’s prescription he would be rather uncomfortable from not being able to see as well. On the telephone, he complained of bumping into walls in the hospital because he could not see. I think to him it was more evidence of how he was being affected by the illicit “drugs” (narcotics, meth) that “they” were trying to kill him with. I felt horrible about him not being able to see, so I kept on rescheduling appointments at the eye doctor’s office. I did not have a clue when he would be discharged, and I wanted his appointment to be as soon as possible. I felt bad every time I talked to the receptionist about changing the appointment.

She never asked a reason and I never gave one, and I silently thanked her for that. Through this whole experience I have learned to try to be less critical of people. I do not know what it is going on with their life and if they do not tell, it may be that it is too painful to tell. On the other hand, I remember, too, the critical librarian who ran my preschool children and I out of her quiet sanctuary the day we needed some refuge from DS, following his first hospitalization. It still hurts; I do not think I have been back to that library branch since.

Now I will tell you about the “creative hospital discharging.” DS was not happy with AM, the personal care home. He did not want to go back there when he was discharged; he wanted to come home. I reminded him that he felt no more safer at home than he felt at AM. I knew DS was still going to be too much of a handful for me and his five-year sister and three-year old brother to live with. I knew I had to stand firm. He could not come back to our house. On the 14th of August, I learned DS was being discharged. I asked JC the social worker, “How are we going to do this? DS says he refuses to go back to AM.” He said, “Don’t say anything about where you are going. Just pick him up and drive him to AM.” I did not think it would work, and I told him so. DS and I had had many conversations before that day, and DS knew where I stood on the matter.

So I show up at the mental hospital, Wellstar Behavior Health, in Austell, Georgia to pick up my son, DS. My five-year old was at kindergarten, but I had my three-year old with me, who was tired because it was his nap time. He clung to me the whole time we waited for them to bring DS out to the lobby. It seemed to be taking a very long time. When DS came out he was walking between two male staff members. This is the only time I have seen this. (On one of his previous discharges he came out with one female nurse who gushed, “we just love having DS, he is so sweet.”) I had the feeling that just before DS came through the door they were physically forcing him to move. The first thing DS says to me is “Mom, I can’t believe you are doing this.” Then he changes his tact and starts saying, “this is not my mother, I am not going with her.” DS had been saying the “you are not my mother” thing a few days before and earlier that summer. I am not certain if it was a delusion, or a way of trying to hurt me. I think he knew that he could hurt me worse by saying “I hate you, you are an idiot,” which he did, and still does on some occasions. A piece of me thinks the “you are not my mother” was a delusion he fell upon when I was not doing what he expected I would do and disturbing his reality.

Anyway, after discussing it for a while, it was obvious DS was not going with me. He was also saying things like “I would rather be homeless than go back to AM.” DS is standing there between these two guys the whole time, and one of them picks up the telephone and calls a RN nurse to come out. She came out and looked at me without a word with one of the coldest expressions I have ever seen in the healthcare profession, or to be less critical of her, maybe she had already had her fill of DS’s behavior for the day. (Why do they think people who are this unreasonable are ready to be discharged?) I surprised myself with my own strength when I said to her in a very calm voice, “He is delusional, he says I am not his mother and he would rather be homeless than go with me. He is a danger to himself.” She says, “ok,” and back through the door they all go. I carry my sleepy three-year old back out to the car for the fifty minute drive home. For a change, I think I do not shed a tear.

The next day, I am determined I will not answer the telephone if the caller identification says it is the hospital. JC calls once and leaves a voicemail that DS will be discharged that day even if it means discharging him to a homeless shelter. I start formulating a plan for how I will help DS if they discharge him to the homeless shelter. I figure I can show up in the evening when he is standing in line for his slot and give him his medication. I can give him food and some money for food. But I will not bring him home. This is a really brutal thing that is happening to DS. He has never lived away from home before that month, always dependent on us his parents. It was a waiting game all day. Later, JC calls and leaves a message that Dr. K. says DS will not be discharged to the homeless shelter, and JC will work on finding him another personal care home.) A sigh of relief for a brief reprieve.

The next morning I realize I have another voicemail from the day before. I do not know why I missed hearing the telephone ring. It was a call from MG at AM, the personal care home. (Sorry about all the acronyms.) DS had just shown up in a taxi on their doorstep in the evening and he did not have his discharge papers. It is one of the regulations; she needs the discharge papers. I call the hospital and request they fax me the papers. (The fax machine to the rescue again. I am telling you, if you have a mentally ill person in your family you need a fax machine.) I believe I call MG back first with apologies for not returning her call sooner; I am incredulous. DS appeared in a taxi? Who paid the taxi? It was prepaid. Did the hospital call you first to let you know he was coming? No.

When I visit DS, he is very subdued and despondent. I have never seen such a picture of abject misery. I see him still in my mind’s eye with his head in his hands as I ended our visit. I cry bucket loads of tears for him on my ride home. I guess for all of his talk about preferring homelessness he realizes he is better off to stay at AM because he could get up and walk out the door anytime if he wanted to. A couple of days later, when I get the courage, I ask him how he ended up in the taxi. He said they told him he was going home. I did not know, and I still do not know, whether I should be angry that they lied to him, or glad that he did not end up homeless in the street. I was so angry and confused I knew I could not discuss it with anyone at Wellstar. I am sure someone very smart could defend their actions by saying “we said he was going home and AM was his home.” I am sure they knew full well that DS would not understand it that way. I am still wondering who orchestrated the whole thing: the doctors, the nurses, the social workers, or all of them.

Well, how about you, my readers? Have you ever been lied to like that when you were in the hospital? Do you think I should be angry about the lie or glad that my son ended up where he would probably be safer? (I am not even sure what I mean by the last part of the last question: safer than being in a hospital that lies to you or safer than being homeless?)


Dr. Freeman’s Lobotomy

Posted January 24th, 2008 by
Categories: Mental Illness

This story makes me sick to my stomach. A couple nights ago, I watched American Experience: The Lobotomist on Public Television. The procedure itself has a great deal of ick factor, but even more alarming is how Dr. Freeman was able to invent and then cavalierly practice his procedure without scientific method, or peer review, or even a surgeon’s license. From now through January 25th, 2008, you can ask questions in an online forum of people who appeared in the program, including Dr. Freeman’s sons, and the daughter of a woman who was apparently cured of her depression by lobotomy. Don’t let this opportunity get away!

lobotomy blueprint

photo by jylcat

Beginning with his private practice, Dr. Walter Freeman eventually performed lobotomy on thousands of mentally ill people in hospitals across the US without permission of the patients or consultation with their families. He performed his procedure on more than a dozen children, including one as young as four-years old. For ten years or more in the 1940′s or 50′s he was lauded by the press as having invented a cure for mental illness. A few patients experienced a miraculous recovery, but for many others it was trade-off. They became docile, emotionless and child-like, but there was no relief of their illness or restoration of their mental health. Some patients even died during lobotomy.

I guess what really made me sick to watch this television program was to realize that with the level of desperation I have experienced since my son has become severely ill with schizoaffective disorder, I would have absolutely gone along with a treatment like this one for my son, if I had been promised by “a man in a white coat” all that lobotomy was once touted to be.