Recently, I have made some changes to my mother's environment. The aides have changed and so has the agency from which they came. Let's hope this agency will prove to be more organized. I sometimes wonder if you need any education at all to man these agencies? For instance, speaking English, I don't believe is a necessary requirement nor is having any organizational skills. I know that the coordinator of these programs must put together a schedule for dispatching aides to various locations and I would think organizational skills are mandatory, but on more than one occasion an aide has not been notified to come to my house when the permanent aide has called out. Hence, after two years of dealing with constant miscommunication I was advised to change agencies; so, I did. Unfortunately, so did the dispatcher. Hopefully, she did not go where I went; wouldn't that just be a kick in the head!
I took my mom to see her neurologist last week. Doctor Gorgeous, not his real name but certainly an accurate description, is one of the kindest doctors I have met in dealing with my mom’s illness. He makes himself accessible to me through emails which works better than taking her to visit him because she becomes disoriented when her routine is disrupted. I keep him up to date on her condition via email, not as much fun for me, but better for her. This last visit took two days to get over because for some reason she thought she was going for a haircut and when that didn't transpire she berated me for not doing anything for her. I wish he could have given her a little trim it would have saved me from her wrath.
As per his suggestion, I stopped the Seroquel but kept the Zyprexia. Unfortunately, she has gotten up three out of five nights trying to get out of the bed. Sometimes I think if it isn't broken than don't try to fix it. Same thing with the changing of the aides. Although one had to go, the other one did have a connection with my mom and my family. Since she's gone, and the new aide who is really nice has taken over, mom doesn't really speak too much, nor does she engage in conversation like she used to. I'm not blaming it on the aide, I think she might be depressed, I know I am. I also think this is a natural progression of the disease and/or a reaction to change. Am I right or does life suck?
Lately, her mouth is more often than not filled with saliva and runneth over like Niagara Falls, and her knowledge of where she is has greatly diminished which at times works to our advantage. When we watch Secretariat she insists on placing a bet and than she wants to know how much she's won. Any movies shot in other countries or periods transports her there faster than the Concorde. While she is able to feed herself she doesn't realize how much is going into her mouth. When you talk to her she nods, but very little conversation takes place. If I ask her why she doesn't say anything she tells me, "What do you want me to say?" Or, "I'm not ready." Boy, I wonder what she's going to say when she is ready?
"We're not in Kansas anymore?"
Saturday, August 13, 2011
Saturday, August 6, 2011
The Inmates are Running the Asylum
Frederick Loren: Once, the door is locked, there is no way out. The windows have bars the jail would be proud of and the only door to the outside locks like a vault.
House on Haunted Hill 1959
The Inmates are running the asylum: Thus begins my description of the home health aide agencies that service the five boroughs of New York. One in particular, which shall remain nameless, services my mother’s needs on a daily basis for twelve hours a day. She receives one aide for three days and one for four each coming with their own brand of expertise and what that is I still haven’t quite figured out after two years. What I have realized in as many months is that the nicer you are the easier it is for them to take advantage of you and yours.
In the last two years I have had several different full-time aides come into my home, eat at my table and take part in family events and holidays. In as many years I have had the displeasure of discharging several of them because I realized that they would rather be my friend and chit chat than take care of an old woman with Dementia and Parkinson’s. I can’t say I envy their jobs and that is why I NEVER EVER wanted to become a nurse. Being a caregiver for my mother was not one of my life long desires, however, it was a choice I accepted and on those days when the aides show up late and I have to bathe and take care of my mom, I do. It is not easy, but in my house with internet, flat screen TV’s, a full refrigerator and dinner made for you, it’s not so bad. I might also add that in most cases I do the wash and iron my mom’s clothes, I cook dinner or pay for take-out, clean and clock them in early so they can leave early. Yet, somehow they still manage to run the show.
Just recently the aide that used to come four days now comes three and is taking the month of August off. I asked the other aide who is on the four alternate days if she would take over the days of the other aide so I could replace the alternate days with someone who is familiar with taking care of my mom. It would mean that instead of working Wednesday, Thursday, Friday and Saturday, she would work Sunday, Monday, Tuesday Wednesday. I explained that if she would do this for me for one month, I would be able to have another woman who I know and can trust. After waiting several days for an answer I asked again and was told “No. I don’t work on Sundays.”
I suggest that I would accept whomever they send on Sundays, could she please just do the other three days.
“No,” was her final answer. Three days later she asked me if she could bring her granddaughter to my house. I said yes and the seven year old swam in my pool while she talked on her cell phone. Now some might agree that I was too nice, but I know if I had said no she would have called out and who knows whom the agency would have sent. My kitchen is under repair and the less confusion around my mother the easier it is for all concerned. So I let this episode slide by for the moment.
The aide that is going on vacation is no longer speaking to me because she said I yelled at her. Let me explain. Why I even have to address this issue in the first place is one, for my own sanity; two, because anyone who is in a care giving position will learn from my mistakes.
On Saturday my kitchen tile floor was just laid down and no one could walk on it. The following morning, Sunday, the aide called at 6:40 am to remind me to clock her in (she really is not supposed to come until eight am.) Mistake number one: I have allowed this inconvenience to perpetuate because I thought she had my mother’s best interests at heart and I felt sorry that she had to travel from East New York to Tottenville.
“Good morning, Debbie. Can you clock me in?”
“Okay, but you can’t come in the front door.”
“What did you say?”
“You can’t come in the front door because the tile…”
“I can’t hear you the bus is making too much noise.”
Now I am yelling, “You can’t come in, just call when you…”
“What, I can’t hear you.”
“Forget it.” I hung up and figured that the door was locked anyway so she would have to call once she got here. What I didn’t figure on was her attitude once she arrived.
She wouldn’t talk to me or to my mom. She didn’t say more than ten words to my mom the whole morning.
“What wrong ----?”
“You yelled at me. There was no reason to yell at me.” I was stunned. I tried to explain but she would hear none of it.
Later that day I came in from the pool to make dinner for my mom and her and I found my mom sitting in her wheelchair slouched over to one side amidst all the kitchen cabinets that were stacked up in the living room. The aide was sitting in a chair about three feet in front of her watching the television. This was not the first time I have found the aide either sitting in front of my mom or in back of her. With the limited eyesight that my mom has left, when she can’t see anyone next to her she thinks she is by herself.
Once again I asked the aide what the problem was and she said, “You always find fault with me but not with your mother.”
“My mother is 92 years old with the latent stages of dementia and Parkinson’s and nearly blind. What fault do you want me to find with her? She spits too much that is a condition of the Parkinson’s. If you would read up on her illnesses you might come to realize that she is not doing this on purpose as you have pointed out to me on as many occasions as possible, but these are symptoms of her condition. Why I have to explain myself to you or to anyone else is beyond my understanding. If you don’t think you can do the job or you have had enough I understand. I realize it is not an easy job.”
All the while I’m thinking: Of course what a difficult job this is: you get to sit on your - - - and watch my Television and eat my food and talk on your cell phone, and tell me what you want from the Chinese restaurant. Yes, I know. This is a really hard job.
House on Haunted Hill 1959
The Inmates are running the asylum: Thus begins my description of the home health aide agencies that service the five boroughs of New York. One in particular, which shall remain nameless, services my mother’s needs on a daily basis for twelve hours a day. She receives one aide for three days and one for four each coming with their own brand of expertise and what that is I still haven’t quite figured out after two years. What I have realized in as many months is that the nicer you are the easier it is for them to take advantage of you and yours.
In the last two years I have had several different full-time aides come into my home, eat at my table and take part in family events and holidays. In as many years I have had the displeasure of discharging several of them because I realized that they would rather be my friend and chit chat than take care of an old woman with Dementia and Parkinson’s. I can’t say I envy their jobs and that is why I NEVER EVER wanted to become a nurse. Being a caregiver for my mother was not one of my life long desires, however, it was a choice I accepted and on those days when the aides show up late and I have to bathe and take care of my mom, I do. It is not easy, but in my house with internet, flat screen TV’s, a full refrigerator and dinner made for you, it’s not so bad. I might also add that in most cases I do the wash and iron my mom’s clothes, I cook dinner or pay for take-out, clean and clock them in early so they can leave early. Yet, somehow they still manage to run the show.
Just recently the aide that used to come four days now comes three and is taking the month of August off. I asked the other aide who is on the four alternate days if she would take over the days of the other aide so I could replace the alternate days with someone who is familiar with taking care of my mom. It would mean that instead of working Wednesday, Thursday, Friday and Saturday, she would work Sunday, Monday, Tuesday Wednesday. I explained that if she would do this for me for one month, I would be able to have another woman who I know and can trust. After waiting several days for an answer I asked again and was told “No. I don’t work on Sundays.”
I suggest that I would accept whomever they send on Sundays, could she please just do the other three days.
“No,” was her final answer. Three days later she asked me if she could bring her granddaughter to my house. I said yes and the seven year old swam in my pool while she talked on her cell phone. Now some might agree that I was too nice, but I know if I had said no she would have called out and who knows whom the agency would have sent. My kitchen is under repair and the less confusion around my mother the easier it is for all concerned. So I let this episode slide by for the moment.
The aide that is going on vacation is no longer speaking to me because she said I yelled at her. Let me explain. Why I even have to address this issue in the first place is one, for my own sanity; two, because anyone who is in a care giving position will learn from my mistakes.
On Saturday my kitchen tile floor was just laid down and no one could walk on it. The following morning, Sunday, the aide called at 6:40 am to remind me to clock her in (she really is not supposed to come until eight am.) Mistake number one: I have allowed this inconvenience to perpetuate because I thought she had my mother’s best interests at heart and I felt sorry that she had to travel from East New York to Tottenville.
“Good morning, Debbie. Can you clock me in?”
“Okay, but you can’t come in the front door.”
“What did you say?”
“You can’t come in the front door because the tile…”
“I can’t hear you the bus is making too much noise.”
Now I am yelling, “You can’t come in, just call when you…”
“What, I can’t hear you.”
“Forget it.” I hung up and figured that the door was locked anyway so she would have to call once she got here. What I didn’t figure on was her attitude once she arrived.
She wouldn’t talk to me or to my mom. She didn’t say more than ten words to my mom the whole morning.
“What wrong ----?”
“You yelled at me. There was no reason to yell at me.” I was stunned. I tried to explain but she would hear none of it.
Later that day I came in from the pool to make dinner for my mom and her and I found my mom sitting in her wheelchair slouched over to one side amidst all the kitchen cabinets that were stacked up in the living room. The aide was sitting in a chair about three feet in front of her watching the television. This was not the first time I have found the aide either sitting in front of my mom or in back of her. With the limited eyesight that my mom has left, when she can’t see anyone next to her she thinks she is by herself.
Once again I asked the aide what the problem was and she said, “You always find fault with me but not with your mother.”
“My mother is 92 years old with the latent stages of dementia and Parkinson’s and nearly blind. What fault do you want me to find with her? She spits too much that is a condition of the Parkinson’s. If you would read up on her illnesses you might come to realize that she is not doing this on purpose as you have pointed out to me on as many occasions as possible, but these are symptoms of her condition. Why I have to explain myself to you or to anyone else is beyond my understanding. If you don’t think you can do the job or you have had enough I understand. I realize it is not an easy job.”
All the while I’m thinking: Of course what a difficult job this is: you get to sit on your - - - and watch my Television and eat my food and talk on your cell phone, and tell me what you want from the Chinese restaurant. Yes, I know. This is a really hard job.
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