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Hiring and Managing Caregivers for a Stroke Aphasia Patient



June of 2005 I received a phone call at 1:10 am. The voice on the other end of the phone was telling they had my mom over for dinner and she fell and had a stroke. She was in ICU in a hospital in California and I needed to come immediately. My husband had just left for a business trip to Europe and I was all alone. I phoned my brother in Portland, Oregon with the news. We both packed our bags and left for LA.


The situation was dire. But she was expected to make it but would live out the rest of her life with severe aphasia. (A speech communication issue making difficult to understand what is being said.)


Five days later Mom was back home and having to get used to the New Her. She still could walk but her speech was suffering and she had a deficit in her right eye. We were told she needed 24 hour care and that she is not to drive again. 24 hour care? Someone mentioned a nursing home, someone else assisted living.


Okay - where do we start. After sitting down and thinking about the situation and visiting various facilities we decided the best place for her was her home. But how do we find someone so that she may stay in her to keep her in her big home with a view of the ocean and in an area she has known for 50 years. So the hunt and education started.


This is the story - my story of what has transpired over the past 5 years. Let's say that I like to keep a comical spin on the situations I have found myself in, otherwise it would be too heartbreaking.


The case nurse at the hospital told us it is best to find someone who is recommended by someone else rather than use an agency. Why? Because agencies pay their caregivers $9-$10 an hour and the workers are looking for that full time direct pay. So there is little consistency with who is sent out and there is a lot of turn over.


I spent the next 4 months, calling researching and sorting. From a practical standpoint I thought everything of value had to go. Starting with her jewelry, all those pieces were put in the safe deposit box and even the rings and bracelets she wore. Every piece was replaced with cubic zirconium. My mom understood that this had to be. Not only were we protecting us but if she had taken off a ring and then could not recall where she put it, we would blame who was ever there. All the bank statements, checkbooks, investment information was removed from the house. I went from room to room looking at sterling silver pieces, artwork etc. Whatever I thought would be of value to someone else was put away.


I started calling all of my mom's friends who were in their late 70s and 80s. After 3.5 months - I found someone. She had worked for someone who was a friend of my mom's and she came highly recommended. My brother and I interviewed both her and her husband (who was also a caregiver). She seemed lovable, caring and very capable of handling the situation and my mom.


In Los Angeles 90% of the caregivers are from the Philippines. She was as well. And they send money back to their families there!!! There is a huge discrepancy in what they make and what a good income would be in their native land. So she asked if she could work 7 days a week. Which I thought crazy but then said that it would be okay!!! And we said her husband could stay one night a week. We ran a background check on both of them. Everything checked out!


So Nancy brought in some clothes and other things in a suitcase and settled in. I left for the east coast and with one last prayer asked Nancy to make sure she took great care of my mom.


I was not home 4 days on the east coast and was getting a feeling things were not right. Now remember my mom cannot tell me much. I then get a call from the caregiver who says "she quits". She misses her husband too much. After talking to friends and my brother we decided to allow her husband to stay there full time for 2 weeks. He was recouping from a heart attack at 46 years old. How much trouble could there be in two weeks time?


During the weeks that followed I was having more and more concern about what was happening at the house. Getting bits and pieces from my mom, hearing from her friends - someone had waited 8 hours for the caregivers to come back one day. Where were they going - what are they doing? As time went on - I could not stand it. I bought a ticket to LA and told the caregivers I was coming out. They decided to go visit cousins in SF and left the house.


When I got there, I found that they had permanently moved into my mom's house. They got rid of their apartment and moved refrigerators, big screen tvs, stereos etc. Literally they had taken over her house and she was now the guest in her own home. And then there was something else, my mom's computer was very slow. Hey it is brand new - what is going on with this thing.


I am not that computer savvy but did set it up with a guest account. That does not allow a user to change or manipulate the computer in anyway. Well, let's look at the history in Explorer. And there it was - her husband was addicted to pornography, even getting on websites looking for sex partners using my mom's zip code. With a private entrance to their room I imagined that my mom at any time could have been put in harms way. What are they thinking?


I called the police and reported them, I called an attorney and a locksmith. All the locks were changed. In addition, I arranged for their items - 100s of them to be removed. And then I got a call that they were coming back early.


Got my mom situated and printed out 100s of pages of porn websites. When they arrived at the door I stated they could not come in the house and we were to sit outside and talk. There I read them some of the websites asking that they stop me when they started sounding familiar.


Both of them started crying. I said "either you call your priest or I will". And then I found out that they had taken my mom to a Philippino market to buy their weekly talapia. They left her on a bench outside for 5 hours while they cleaned 100s of fish. A Philippino tradition. They say 9 hours at a clinic for people without insurance with my mom so the gal could have some lump of hers checked out. God only knows where else they took her without my knowledge, in our car with our gas. Hmmmmmm. There are now solutions for that.


They were fired on the spot. There things were taken out of the house and put in the garage and they were told they could get them in 72 hours. What they did not know was that in the state of California - they really had to be evicted. They had squatter rights. Fortunately they did not know that and they slept in their car for weeks.


A cocktail party with every man I knew in the area was thrown in the garage when they arrived to pick up their things!!!


Now What Do I Do?


Well, I felt better but I am back to square one. Yup - I need to go home to the east coast. The phone rings and it is a friend of my mom's who says she knows someone looking for full time work as a caregiver. Great.


Interviews are really important. I make a list of things to ask and spend a lot of time asking those questions, getting to know that person as much as possible.I am leaving my mom with them.


Along Comes Terry


Not having a lot of options - after talking to her for an hour, running a background check, getting insurance papers for driving, etc. I hire her. She is not the most fun person in the world. Frankly she is very depressing. But I am thinking it is because she was just let go from the last job. What she told me in that interview about why she was let go was the reason she did not last with us.


But Terry did stay with us for 3.5 years. She was clinically depressed and had no common sense at all. The things she did were always astonishing to me. If my mom was instructed to take 700 mg of some vitamin, she would look for days for that dosage. And when she could not find it she maybe able to find an 800 mg and then try to shave off the 100 mg. Hey - just call me - that 100 mg is not an issue. She called 911 if my mom had a nose bleed, if she had an ear ache. We had to pay off the fire department each Christmas due to all the false alarms.


Terry wanted to work 6.5 days - again a Philippino gal who was sending money back home. She would leave on a Sunday morning and was scheduled to come back at 8 pm and I have not idea how many times she would not come back and force the person relieving her to stay. She told them, make sure you do not answer the phone. Just have my patient answer it. Oh I get it -- my mom cannot tell me what is going on. Not only was it insane, the cost to pay the hourly person was three times what she got on a daily basis.


In 2008, Terry told me she was getting married. What, you are getting married? Did not know you had a boyfriend? No, she did not - she was marrying a cousin's friend because had health insurance. Okay. In May of that year, she left for the Philippines and married and it went down hill from there. She barely worked. I quit my job to spend time finding people each week to cover her shifts. I thought I would go nuts. Finally we got an email "she quit".


Thought it was a blessing in disguise. Maybe I was wrong all along. Let's research agencies and they can manage this. I called the most expensive agency - thinking they would be the best. Wrong. During the week they were there - they spilled the pillbox and lost the remote to the garage, leaving the house open. No one had called me to tell me this and had I not flown out to see for myself, my mom would not be here today.


Had to send a text message to the mba phd owner. Why she had to sign her name that way is insane. Prior to her employees arriving a nanny cam was installed. I did it myself and it works off a broadband connection. I can see and hear what is going on and can tape days if I care to. I have not seen anything of interest but one caregiver asleep while my mom asked for a drink. The all know it is there and were told it only works periodically.


The owner of the agency was outraged that camera existed. I told her it is none of your business. It was in full view and was necessary. Makes you wonder why she was so upset about it. That agency was fired after I had spent over $8000 for 10 days of nightmares.


Moving On


Found a new Philippino agency who provided two lovely gals. But once they got wind of my mom waking up 2 times a night for the bathroom. The $160 day rate went to $500 a day. And the gals are not making the money the owner was. Fast forward - cannot afford to pay this kind of money. The caregivers who seemed versed in this situation tell me to tell here that. She came down to $220 a day but still the gals were not making a lot of money so I paid them a bit more under the table. Don't tell the agency you will do that - which I did - I was looking to get back my $160 day rate from the beginning.


Where Do They Really Go During The Day


I don't know where they really go - sure it is written down in a log and faxed to me each week but is that where they really are? Is that where they really go? No! Two of the caregivers - weekly and weekend do not like one another - well that is putting is lightly. They started telling me things about the other. I found out one takes the car to a diet center three times a week, leaving my mom in the car (my mom has a choking issue and needs constant supervision). Great. Someone saw my mom in the car sitting there alone. I called that caregiver asked about this situation and she admitted it. Never apologizing. The other one thinks she needs two people to help my mom transfer from the wheelchair to the whatever - so when she is on the shift we have two people. Come to find out she drops them off at dinner and movies and goes home to her house. How do I know that scenario? Because I installed a tracking device that allows me remote access via the internet to monitor where ever that car goes with the exact address. She spent over 3 hours one day at home while being paid. And when I confronted her she said "she quit".


More Later.


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I can soooooooooo relate to your experiences with caregivers for patient with aphasia. Since 2004, I can't even count the numbers we have been through either on our own or with an agency. I would come home early and find one screaming and yelling at my husband because he was choking and spitting his food, another one had put him back for a nap the minute I went out the door so she could talk on the phone (argue with family member), one got on my computer and stole credit card information which took me over six months to clear up, another one used her calling card to call relatives in Africa but I got charged a connection fee because I didn't have long distance service, and on and on it goes. It must be even more difficult for you with being so far away. I certainly can empathize.



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WOW! I'm a a stroke survivor

first and a caregiver second to my husband with aphasia two years after my stroke. Great post.

You have done the best to your ability for your mother inlu of you being her caregiver. I love the putting in the nanny cam. But when reading further and you put a tracker on the car, you go girl!!!!:You-Rock:But back to the beginning, you taking all valuables including paintings was a very smart move. You really thought this process of having a caregiver stay at the house. You need to write a book on the positive and negatives of a living caregiver.


I'm waiting with bated breath for you next post.

remembertolaugh, Jeanniebean :cocktail::dribble::dribble:

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hi Patty:


welcome to wonderful world of blogging. I am shocked & amazed at what you have been through while trying to take care of your mom from long distance. Its nightmare & I m sure must have caused so much anxiety & trouble. stroke changes lives of everybody.



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