Archive for the 'Places to Live' Category

A Place to Live for the Young & Mentally Ill

Wednesday, December 26th, 2007

This is the next installment in the series of Recollections post from last summer 2007.

I made mention before of trying to find a personal care home for my son when he was in the the hospital for the first time this year in June. From what I was told, a personal care home would be the only feasible option of a residence for my son. I describe personal care homes (PCHs) here.

In the hospital the social workers tried to find him a place but were unsuccessful. I was told BH of Altrus was an expert who would get in touch with me and be a big help.

One week after DS’s discharge, I have had no phone call from BH. I call her. She says she had DS’s name, but no contact information for him. (Hmmm, I know at least two social workers in the hospital that could easily access that information for her.)

I have made quite a few telephone calls with BH back and forth so I admit that some of it is a muddle to my memory. One time she tells me I need to locate the home first before getting SOURCE approval. At another time she has given my name to a SOURCE worker who calls me to get some information. This person then tells me to locate a home first.

After some delays, BH gives me the names of two personal care homes in Cherokee County, with telephone numbers and owner’s names. These were the only two homes in this county with a vacancy at this time. It always seems to be true that when you call these homes, a staff person will answer the telephone. They then inform you that they are not the owner and they give you the owner’s cell phone number. The owners are usually most available in the evening, so I assume they may work regular day jobs and keep a personal care home for side income. They nearly always have a foreign language accent, so communication is not so great.

I call the first PCH and make an evening appointment to see the place alone. I say “alone” because my son is still in the hospital (second time). The last half mile to the home is a gravel, rutted road. The brakes in the car I was driving were very bad and scaring me the whole way over there. When I come to a place in the road where the grade is very steep, I have had enough. I turn around and make a cell phone call to the owner with apologies for canceling the appointment.

I call the second PCH and make an appointment to see it at the owner’s convenience, two days later. The morning of the appointment I receive a call from her that the vacancy has been filled. I begin to get the feeling that PCHs are rare and you need to rush to get in one when there is a vacancy.

So, according to BH there are no more vacancies in Cherokee County (Georgia) where we live. Let’s try neighboring Cobb County I tell her, thinking about the OCS program I was told about, which provides transportation to residents of Cobb. This county is a great deal larger in population and there are many PCHs. BH promises to mail me a list. I wait a week: no list. I telephone her. She asks if I have a fax machine. Thank heavens I do. She faxes me a two-page list of homes. I have found the fax machine to be a big asset on many occasions since DS’s illness began.

I begin telephoning PCHs, going through the process of calling the home, getting the owner’s number, calling the owner, waiting for the return call, etc. I find through this process that some homes are just for women, most homes are just for the elderly and most homes have no vacancies.  

At this time I was fortunate to receive a telephone call from KM, who called herself a therapist at the hospital, Wellstar Behavior Health. I am not sure why she has this information, but she says she knows of a PCH, though not SOURCE-funded, that would possibly take DS at a discount because they have empty beds they are trying to fill.

To make an even longer and boring story short, this place becomes DS’s first PCH. They agree to take him at $600 a month. They say they are applying for SOURCE status, but they cannot promise when that will happen. The home manager I speak with most of the time, MG, is from England, so she has a British accent, but I can actually understand her most of the time. The owner is a very excellent nurse, I am told. The home has seven beds for women and eight beds for men in wings at opposite ends of the house. There is a large living room with a big-screen television and a dining room that seats all the residents at two tables. Most of the residents are elderly, but three of them are more middle-aged and are friendly and happy to talk about the place with me. They aver that this personal care home is a great place. Two say they have schizophrenia. We chit-chat about medications and doctors. I think, “this place exceeds my expectations.” I decide to snatch up a slot for DS before it gets filled.

I bring DS to visit the home, that I will call AM, on the very afternoon he is discharged from the hospital. He seems to be all right with it also. We spend the week trying to scrape together the paperwork because my husband and I have a trip planned to see his mother the following week. (She had a close call with an illness and recently went to live in assisted living herself.) DS and I go the rounds to the health department for the turbuculosis test, the primary care physician for the physical forms, back to the health department to read the results of the TB test, etc.

I am getting a little ahead in my narrative now, because I did not talk about the going-ons with the second hospitalization, and I will in the next post. Just suffice it to say, finding and getting a loved one in a personal care home is a big, inefficient hassle. Dealing with it on top of dealing with symptoms of an illness was a lot to bear. I did not make much progress until DS was back in the hospital again.

Another funny and sad thing… the whole time I was trying to get information from BH I had to be very secretive about it. DS had met BH in the hospital and did not like her at all… he wanted me to have nothing to do with her. It was his paranoia I know, but I could not help but agree that his general feeling about the state of housing for the mentally ill was right.

Pharmacy Foul-Ups & A Good Report on the PCH

Wednesday, December 19th, 2007

Today I got a call from CA, the owner of the personal care home. She was having difficulty refilling DS’s prescription. He had only one tablet of Risperdal left for today and he is supposed to take two. (How did that happen? The last dose in the bottle should have been two tablets. Oh, well.)

CA’s problem was a pharmacy foul-up. The Rite-Aid pharmacy (formerly known as Eckerd’s) that is near my house tried to transfer his prescriptions, including a record of one refill being allowed, to a pharmacy near CA’s house in Douglasville. They mistakenly sent them to a pharmacy in Atlanta. The pharmacy near her house suggested she call the doctor for a refill. She tried to do that and only got a telephone answering system. (I know. You are required to listen carefully to the choices and press the right numbers to talk to the right person or voice mail box.)

I understood her frustration, and I offered to make some calls to try to straighten things out. First, I told her I would be leaving the doctor’s office out of it. It was the pharmacy’s fault, and this doctor’s office is an even greater pain to deal with,  in my opinion.

In the end I discovered that the pharmacy in Atlanta that had the prescriptions, an independent store named Pay Low,  was only twelve miles from where she lived, and they offered free delivery. I agreed. I was glad things were cleared up this time with very little trouble.

I have had my complaints before with Rite-Aid. They did not have Abilify in stock at all, when DS first needed it last summer. Typically when I try to refill the Risperdal, they do not keep a sufficient amount in stock, and they give me only a three-day supply, at first. Then I have to return for the other twenty-seven days worth. I asked them specifically with a “please” to stock it, but a pharmacy tech tried to explain that it was company policy to treat this drug this way. I suppose they have their reasons. I warned CA about this problem and advised her not to delay refilling prescriptions.

On a brighter note, I spoke with DS today. He seemed to be in a somewhat conversational mood. I filled him in on family plans for Christmas and assured him that we would be picking him up. I tried to catch him up on news of his brothers and sisters.

He filled me in on his doings. CA has been taking him shopping almost every day. “Christmas shopping?” I ask. Food shopping he says, and other kinds of shopping. Also, she has taken him to eat in restaurants quite a few times. (I forgot to ask who has been paying, but DS does have $97 a month to spare after paying for his PCH.) “How very nice,” I observe. He never got that kind of treatment at his other personal care home. He said he likes it in his new PCH much better. I am glad of that. This is a very unusual PCH because it is the home of the owner who is also the “staff” person.

It sounds to me like CA does not let DS stay at home alone much. She has taken him to church with her and on walks with the dogs. That is very wise on her part to keep him busy and to keep an eye on DS. It sounds like we are very blessed right now.

Restoration of a Favorite Pasttime

Saturday, December 8th, 2007

home computer

Today DS had his computer delivered to his personal care home, with desk, chair and a dresser full of his stuff. My dad and husband brought it to him. I stayed home with little brother and sister.

I have been hesitant about letting him take the computer out of house and using it unsupervised. With his illness I am mostly concerned about him spending money online that he shouldn’t. I am also concerned about him messing up or damaging his computer in some way when he is not thinking clearly, but so far the only thing strange he seems to do to his computer lately (when he came home for visits) is run anti-virus and anti-spyware programs all the time.

He has always been very responsible with his money, but last June when he was very severely ill he did some borrowing on his credit card that he should not have. I believe he was very confused and his memory was not working well. He had a balance of $400, paid it off with a spare $400 he had, then he charged $400 worth of stuff including a new computer monitor that he did not really need. He thought that would leave a balance of $0, but of course, that leaves a balance of $400. He is still rather distressed about that debt. His grandparents have agreed to pay it off for him by giving him $100 a month.

I have his credit cards at home, so hopefully the spending will not be an issue. My husband found out that CA, the owner of the home, already has DSL internet, so DS only needs a wireless router to get connected to the internet. His grandparents have already decided to give him one for Christmas.

When my dad and husband got back from there, I took the opportunity to grill them on what they thought of the place and what happened there. Neither one of them saw doggie pee on the floor. Good. I hope it stays that way. My dad loves dogs and actually played with them for quite a while and talked to CA about his dogs. Good. Building goodwill. My husband fixed a computer printer problem CA was having. Very good. Building even more favor.

CA was overheard to say to DS, “you have such a nice family.” Dad and husband say they think it is a better place. DS still has not complained of anything at all. I hope he will be happy there.

Wash, wash, wash

Friday, December 7th, 2007

shower head with waterTonight I get a telephone call from CA, the owner of the personal care home where my son, DS lives. She tells me that DS has been taking two 30-minute showers a day. She says she timed it. I tell her I believe her. She wants to do his laundry once a week, but he changes he clothes twice a day, so she must do laundry twice a week. He is also washing his hands three or four times a day. (Only three or four?) I tell her to look on the bright side. He is clean.

At first I think she is distressed about this strangeness, but then I realize she is concerned about the money. She wants to be reimbursed for the increase in her water bill.

She tried to justify her concerns by mentioning the horrible drought we are having here in Georgia, but that to me is irrelevant. His reality is that his environment is contaminated so he MUST wash. It would be cruel to anyone to be denied cleanliness. Yes, it’s very annoying though. It’s time-wasting and water-wasting, but I don’t know what can be done to help him.

I am going to call the caseworker on Monday to see if any funds to supplement the water bill will be forthcoming, but I doubt it. I understand CA’s concern. One month last summer when DS was still at home he caused our water bill to go up an extra $20. At that time he was washing his sheets every day and all his clothes, so he was doing three or four loads a day.  Fortunately we have a water-efficient washing machine. This is not to mention all the handwashing and showers. One day last summer, DS literally stood by the washing machine all day and washed the same load over and over. I explained to CA that this is part of DS’s illness, and it has been gradually improving. I am not sure if it has increased since the move to CA’s home because I do not know what DS was doing in this department at the previous personal care home.

I told her I would talk to DS and ask him whether cleaning the carpets with the rug machine will make him feel better. I doubt it, but I think it will make me feel better.

CA also told me she knew another young man (in her home?) that did the same thing and his mother told her that he is now in an institution. I said, that is interesting, but I was under the impression that institutions for the mentally ill no longer exist: there are only hospitals for short-term stays and jails for long-term stays.

I will give CA some credit to try to soften the impact of what she was trying to say to me by praising some of DS’s finer traits. He is very intelligent, articulate, etc.

I know. They have been telling me that all his life.

My Son Gets Visitors?

Thursday, December 6th, 2007

This new personal care home that my son moved into last Saturday is the first SOURCE-funded personal care home he has lived in. Maybe I need to define a few terms here first. A personal care home is a facility kind of like the assisted-living homes you may have heard of for the elderly. Assisted living requires more independence on the part of its residents than a nursing home would. Typically, personal care homes are full of the elderly. Typically, near where we live, the personal care homes are houses in regular neighborhoods. There may be between three to six residents. A staff person may live there with them, or staff people come and go. The staff do the laundry, the cooking, the cleaning, and administer medication. A resident may have a private room or roomates. Residents watch TV all day and go on walks. Smoking is allowed outdoors. That is my definition of a personal care home.

SOURCE, from what I understand, is government money to pay for needs of certain indigent persons. I believe my son qualified because his only income is his SSI (Social Security disability) money of $623 a month. A cheap personal care home will typically cost $1200 a month. SOURCE pays for his personal care home, except for $528, which he must pay for out of his pocket. I really do not understand all of this governmental regulation and la-di-da, but I have heard a few people say that my son gets a Medicaid waiver also, as it relates to his housing, whatever that means.

SOURCE, I have been told, is not a program that was originally intended for the mentally ill, but it is meant for the elderly.

Somebody please comment below if I have gotten it all wrong. I try to ask questions to try to relate to all of this stuff, but most of the time it is a muddle. 

So, getting back to this post headline, my son tells me he has had 2 visits this week so far. He had to do paperwork with them. This is kind of scary, because he is a little naive about certain things. Then again, sometimes he is so paranoid, he balks at ordinary paperwork. He did say that the one person who came was a “specialist surveyor” with the personal care home program. It sounds like a state inspector to me. The other visitor was a nurse who took his blood pressure. This nurse I was expecting because I was told that SOURCE homes have a nurse that comes twice a month to do that and ask questions about medication compliance or whatever.

I like to keep closer tabs on DS, but with him living an hour away from my home, it feels very difficult. Of course, none of these people call me to tell me who they are or what they are doing. DS is an adult, and even though in some matters he needs help, he is expected to deal with them on his own.

So far this is a quiet week. No complaints from DS or CA, the woman who watches him.

Not-So-Fresh Start in a New Personal Care Home

Saturday, December 1st, 2007

 December Day in Georgia

Today I took my DS (dear son) to his new personal care home in Douglasville, Georgia. This one was strikingly different from the others we have visited over the last few months. This one is a home of newer construction in a subdivision of homes advertised at 170K or so. The inside of the home seemed light and spacious, not dark and cramped, especially since the only occupants are the owner, a young male resident and the owner’s mother, who is visiting from Florida. The house has four bedrooms so DS gets his own room. The room seemed bright with a high ceiling, a spacious closet, a full-sized bed. This home had no smell of cigarette smoke, because no one living here smokes. All the other personal care homes we visited allowed their residents to smoke outdoors, but the problem is they carry the cigarette stench on their persons when they come indoors. I was excited for DS. We only located this home four days before he had to move. I thought, “At last, I don’t have to feel guilty for making him live in a PCH. This place is one in a million.”

Then, of course, after we arrived, reality came crashing down. We had only seen the home during a quick nighttime visit. During the day when we were moving DS and his stuff in, the carpet stains became more obvious. The dresser drawers were nearly all broken, falling off track nearly every time you open them unless extreme care is given. The room was bright all right. Really almost too bright. No blinds to be seen behind the sheer curtains and rather hot from the afternoon sun shining in west windows. This room will really bake in the summer. When the owner, whom I will call CA, told us to remove our shoes before stepping on the carpet during our evening visit, I thought it was because she did not want outdoor soil from our shoes on her carpet. I realized today it was because her two little mop-haired dogs pee all over the hard floors, so she does not want pee tracked on the carpet. She makes liberal use of baby gates to keep the dogs out of the carpeted rooms (living room and upstairs). The carpets still look very stained everywhere.

So the guilt returned full-force. With DS’s obsession with cleanliness, this may be really hard on him. I remember a couple months ago he was having delusions about urine and feces being on surfaces that he could not avoid touching. Now this house has dog urine all over… at least in the foyer, kitchen, dining room, family room area, and it is no delusion. Also I started thinking the bedroom with no blinds is not going to do his paranoia about being watched any good. I felt like calling CA all evening to ask her if she could throw some blankets over the curtain rods. I wanted to call and ask if I could bring a rug shampooer and clean the carpet in DS’s room and the stairs. Then I thought, “Let’s try not to offend this woman on the very first day.” She is probably having a hard enough time with my son. DS also suffered another disappointment today. When we were going over his medications we noticed the doctor had doubled one of them, something the previous PCH and I had not caught before on the bottle label. I called the pharmacy to be sure it was no mistake. Before I left he was being cranky about no soap in the bathroom, which  CA supplied. I made sure the stained pillowcase was also replaced. DS refused to sit on the bed because he was sure the bed spread was filthy.

Well, it is bedtime and no phone calls from DS or CA yet. I hope they are getting along all right.