Archive for the 'Places to Live' Category

Finding a Georgia Personal Care Home

Wednesday, July 28th, 2010

{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

Thursday, December 3rd, 2009

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?

The Letter I Never Mailed to the Georgia Governor

Tuesday, February 26th, 2008

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

Tuesday, February 19th, 2008

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.

Creative Hospital Discharging of the Mentally Ill

Tuesday, January 29th, 2008

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?)

“A Night of Shock Horror”

Wednesday, January 23rd, 2008

PsychCentral.com has this article about a teen who was given electrical shock against his treatment plan. I identified with the observation about immigrant workers. I have always wondered why it is that immigrants dominate staffing and ownership of the personal care homes in this area.

New Problem Brewing in Son’s PCH

Friday, January 18th, 2008

Today I spoke with CA, the woman who takes care of my son, DS, in her home, which is also a personal care home. She was asking again about the possibility of finding some day program for DS because she has no time to do things by herself. Apparently it is a state regulation that she cannot leave him in her home by himself. When she leaves to go to the store or anywhere, she takes him with her.

I can sympathize with her complaint. I really do not know what to say. DS had a bad experience with a previous day program. I just cannot imagine him agreeing to go to another one. CA suggested that if DS could come home for one day a week, it would be a help. I need to think about that one. Right now I need to have my husband present when DS is around because my nerves are rather shot by the verbal abuse he is inclined to heap on me when we are alone. I figure that is why he did so well during the holidays… lots of extended family around. 

The alternative will be getting CA to the burned-out point where she will probably ask that DS move to another home. I am heartsick about both possibilities.

Totally changing the subject, DS called me today to let me know that Bobby Fisher died. DS has long enjoyed chess, so I am not surprised he would want to call me with the news. He said, “Isn’t it interesting that Bobby Fisher died at the age of 64 and there are 64 squares on a chessboard.” I wonder if he thought that one up himself or if he read it somewhere.

snowmanmelted snowmanOn the lighter side, we had snow here in Georgia yesterday. My five-year old daughter and I built a one-foot tall snowman. Here are the before and after shots of the snowman yesterday and today.

Move to the First PCH and Third Hospital Admittance

Saturday, January 12th, 2008

This post is the next in my series of Recollections about my son, DS, who was diagnosed with schizoaffective order in the summer of 2007. My son’s second hospitalization ended on July 24th, 2007. I brought him home and we began to prepare for his move to a personal care home I had found which was located about thirty minutes away in Marietta, GA. On the night before DS moved (July 28th), he did not sleep much, I believe. He was trying to decide what to bring and cleaning, cleaning, cleaning as he was going along, of course. He has never lived away from home before, even for college, so this move was stressful for him. On the morning of the 28th, he was very agitated and upset. He was saying he wanted to go back to the hospital. That did not make any sense because he hated and feared the hospital.

black and white trianges

photo by silentvale 

When we got to the personal care home—I will abbreviate its name as AM—he was calm enough. They had told us in advance that check-in would take two hours and they were right about that. They had a plethora of paperwork for us to do. I remember DS sitting on the couch next to me, looking very drowsy through it all. They gave him a room with no roommate, though no guarantees that it would remain that way since all the rooms had two beds. His bedroom had a doorway adjoining a bathroom that passed through to another bedroom where two other men stayed.

I helped him to unpack and we had to make an inventory of every item he brought. In theory that sounds like a good idea, but in reality, over the course of the next few weeks we were bringing stuff in and taking some stuff out, and there never seemed to be a staff person available to bother with updating the inventory sheet. He wanted to bring his computer, even though there were no guarantees about being able to get it hooked up to the internet. That was an issue that MG said she would look into, but she had not yet. With the computer desk it was just too much for me to be bothered with that day. I told him we would try to get it to him in a week or two when I could get his grandfather (my dad) to help.

There was one ironic thing that happened. The home manager, MG, had brought her grandchildren with her to work that day. One grandchild was a two-year old little boy who wandered into the bedroom as we were unpacking. I could tell his presence was making DS anxious, either because to DS’s mind the child was not clean enough, or the room was not clean enough and the child was touching things in the room. One of the reasons I was putting DS in a personal care home was to get him away from his two and one-half year old brother. I gently nudged MG’s grandson out into the hall telling him, “go find grandma,” and shut the door behind him.

After the unpacking was done, DS had to submit to a visual inspection of his undressed body, performed by PL, who is the 27-year old son to MG and father of the aforementioned children. (That probably explains, too, why the children were there. Their father had to bring them along because their mother was working.) The reason for the inspection was so that any bruises, injuries, or whatever could be noted and documented in the paperwork. I began to piece together that AM was a family business. MG was the home manager, her mother was the owner and her son worked there as staff from time to time. They had at least a half dozen different staff people that worked there at one time or another that I saw, but usually when I dropped in I only saw one staff person in the home at a time.

I left instructions that DS was to go to a hospital outpatient program called OCS (Outpatient Counseling Services at Windy Hill in Marietta) and they had transportation to pick him up. They said they would be sure to wake him up early enough to be ready and they did. The program was five days a week. I was told by people at the hospital (Wellstar Behavioral Health) that it was an excellent program for people newly discharged.

It was on a Saturday when DS moved into his personal care home, AM. On Monday, his father and I, and his five-year old sister and two and one-half year old brother got in the car to make a trip to Florida to visit my husband’s mother and sister’s family. It had been a long time since we had visited them, but it was not easy for me to leave town since I was worried about DS. We had planned this trip for a long time because my husband had some work scheduled off then. We planned to return on Thursday because the five-year old had a kindergarten open house on Friday. I got a telephone call from DS about once a day. Although he had made some improvement at the time of his most recent discharge from the hospital he was reporting that there were drugs all over the chairs at OCS and there were gangs outside of AM making gang signals. He did not feel safe. These were his typical delusions that he was having at the time of his first two hospitalizations.

Wednesday night around 10 p.m. I received a telephone call from MG, the manager of AM. She said DS was on his way to the emergency room. She told me the following story. DS had also told her that he was not feeling safe. She understood what was going on and offered to drive him to the emergency room. They got in her car and were driving down the road when he began to vomit. She pulled over to the side of the road. He got out of her car and when he finished, he took off running between some houses and trees and disappeared quickly. She called the police. When they arrived she answered all their questions and asked them, “please can I go now to look for him.” She said she “felt for DS” like her own son, because she has a son the same age. While she was talking to the police they received a radio report that DS was found. Apparently he had stopped at some house to ask for assistance and they had called 911 for him. For anyone keeping count, (I am) that made DS’s fifth encounter with police or emergency personnel for the summer.

We were planning our return home on Thursday morning (August 2nd) anyway, so there was no need to change our travel plans.

Recollecting the Second Hospitalization Summer 2007

Wednesday, January 2nd, 2008

DS’s second hospitalization last year for schizoaffective disorder with psychosis lasted from July 13th through July 24th, 2007.

It began with a marathon session in the emergency room. DS’s grandfather (my dad) and I accompanied him. After we got in an examination room, a woman came in to do an evaluation. I am sorry I do not know her job title or name. She remembered DS and his grandfather from his previous emergency room visit, and after we were able to speak with her privately in the hall, she expressed her shock that he was back so soon. I now wonder how long she may have been in her job. Given our experience this year and all I have learned since, can it really be possible that it was a shock that he returned? My Dad spoke with her about our disappointment in the lack of communication we felt we had with Wellstar Behavior Health last time. She gave me the name, “Lily,” someone in a position there, and said I should speak with her if I ever feel communication is a problem again. I never did that, and I probably should have. 

It did not take too long waiting in the emergency room for arrangements to be made for the hospital transfer from Wellstar Kennestone Emergency Room to  Wellstar Behavior Health. What REALLY took so long was waiting for an available ambulance. We were there before noon, but DS was not transferred until after midnight. I wonder why mental hospitals do not have their own emergency rooms or triage area or whatever. It was not at all a pleasant experience with DS belittling or berating me constantly for causing him to be there. Finally around 10 pm, my dad, who is a very soft-spoken and gentle man, somewhat uncharacteristicly let it be known to DS that he was out of line. I was very grateful to Dad for that. I suppose it was not a necessity that we wait with DS for his transfer. They had a security person checking the room every few minutes. (Would that have been enough to prevent an “escape?”) However, he was sick and I did not want to leave him alone if it was humanly possible for me to be there. Also, I think anyone is justified in not wanting to leave a loved one alone in a hospital any more than absolutely necessary with nursing shortages and medical mistakes, etc. We had a very bad experience with my mother in this same hospital a few years ago. 

So, DS was transferred to Wellstar Behavioral Health in the wee morning hours on Saturday the 14th. On Monday morning, I believe, I received a telephone call from Dr. LT. Almost the first thing she said to me was, “it sounds like you have had a rough week.” I wondered if she knew that from talking to DS or from some reports from the emergency room. In any case, it instantly endeared me to her. (At last, a doctor with a bedside manner and who called me first!) I wondered if DS was assigned to her because of our complaint we made in the emergency room about communication.

This time DS was started on Risperdal, Depakote and Zoloft. He continued to take the Clonapezam. I did not visit DS as often in the hospital, but we talked on the telephone nearly every day. I noticed a big improvement in the delusions within 48 hours of starting the Risperdal.

During this hospital stay we (DS, his father and I) had our first ever meeting with a social worker, JC. He mainly wanted to establish where DS was going to be staying after his discharge. DS was certain he could go to live with another patient there named Mary. All the rest of us said that did not sound like a good idea. DS was very argumentative, interruptive and demanding the whole meeting. To finally reassure him that I was interested in his concerns, I took out my red memo pad and wrote down what he wanted me to about what he desired in a personal care home. That calmed DS down long enough to give JC about a minute to have his say. DS turned to me and said, “Why are you not interrupting him?” I said, “Because I want to hear what he has to say!”

little red memo book

After the meeting when JC was showing us out the security door he said, “You were really great. I do not know how you do it.” I was shocked. You mean, he does not deal with people like this every day? Well, obviously, I was feeling like I could not “do it” much more, at least not on a daily basis. That is why we were having a search for a personal care home. I must have said something that gave away my naivete at this time about how quickly I expected medicines or therapies to help DS get back to himself. JC gave us a warning to expect things to take some time. My mind has turned back to his warning again and again when I have been disappointed.

As I was saying in this post, A Place for the Young & Mentally Ill, I did have a personal care home identified by the time DS was discharged.

Two Steps Forward and One Step Back

Monday, December 31st, 2007

Caution Step

photo by Esther17

Today I pick up DS so I can take him to the bank. The $528 rent is due and he needs to transfer his SSI money from his savings to his checking and get some cash for pocket money for the month of January. I could really do his banking for him, but I want him to handle what he can for himself. If I had my preferences I would do it all online and get him a debit card, but he has always been too paranoid of online banking and debit cards.

Before we leave the personal care home, the owner CA shows me the water bills. Sure enough, there is a $30 and 4000 gallon difference between November and December. I try to negotiate down to $25 reminding CA of certain extenuating circumstances. Unfortunately DS is in a mood to argue every point, so I just say to CA, “I’ll call you” and hussle DS out of the place.

The one-hour car ride back to Cherokee County was very unpleasant. I cannot count the number of times DS called me an idiot and said he hates me. I shocked myself by breaking down crying and then shouting at him. I can not believe how quickly he got through my shell. I can only guess that I was beginning to think of DS as normal and treat him as normal, all because Thanksgiving, Christmas and the month of December went so well. I am really hurting today.

There’s only one thing of interest to report today. Try Googling “memory impairment in schizophrenia” and you will get 1100 results. DS could not remember the wash, wash, wash conversation we had and he said he also does not remember the drugs being all over everything last June. He says things were just dirty. Once one thing has gone wrong with the brain, is it a surprising thing if another thing goes wrong? Or is it merely being so preoccupied with the other symptoms that affects the memory? More likely from what I have read, schizophrenia is so cataclysmic to the brain, nothing should surprise me.

The tic or twitch in the shoulder was back today with it extending all the way down his arm. His hand was trembling at times. This was happening two hours after we had both calmed down.

The only good news to report is that CA avers that DS continues to be polite and nice around the home. She said she was shocked by the side she saw of him today. Also, the 20-year old bipolar young man was moving out today. He was calling CA a *itch, and she would not put up with it. I reminded DS of the other personal care homes we visited, that were not as nice. We will see if he stays on his best behavior with CA.