When her mother was diagnosed with ALS, Latoya left her job, moved in with her parents, and became one of her mom’s primary caregivers. After her mom passed, Latoya began volunteering at the ALS/MND Center of Hope at Temple University in Philadelphia. Now, as the clinic’s Patient Services Coordinator, she is a compassionate advocate for families impacted by ALS.
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"The journey can be done. You just have to have that hope and that faith. Hope, faith, and love can get you through anything."
Tell us about your experience as a primary caregiver.
I was one of five kids who took care of our mother after she was diagnosed with ALS. I was her Power of Attorney and eventually her mouthpiece throughout the journey.
I had a very positive experience. You only get one mother, so why not take care of her? We did anything and everything we could for her so she could continue to live on this earth.
We still did fun things, like renting a handicap-accessible minivan to drive to a family reunion in Delaware. We took another trip to Atlantic City for a girls weekend to gamble a little bit.
I had a very positive experience. You only get one mother, so why not take care of her? We did anything and everything we could for her so she could continue to live on this earth.
We still did fun things, like renting a handicap-accessible minivan to drive to a family reunion in Delaware. We took another trip to Atlantic City for a girls weekend to gamble a little bit.
What was your mom’s approach to living after the diagnosis?
We are big on our religion. She just dealt with it and she accepted the fact that she did have ALS, and it didn't stop her. Her approach to the diagnosis of ALS was like no other. She really took this on, and we just followed behind her. We didn't know anything about ALS until she got that diagnosis. Once she did, we learned everything about it from Dr. Patterson and her team. And she just went on ahead with life. She accepted it and she just lived her life, with the help of us.
What were some of your biggest challenges as a caregiver?
The biggest challenge was getting things approved with the insurance company. If it was approved, we had a big out of pocket expense that we had to pay in order for her to get certain medications or certain equipment. But we made it work. We didn't stop pushing or fighting. We worked with Dr. Patterson and her team. I made some phone calls myself to see what I could do to expedite the process. I didn't take no for an answer. I went through the back door when I needed to. I said, "Someone is going to hear me."
How can caregivers advocate for their loved ones?
You just have to be on top of things and just keep pushing and fighting. I had this book here that I made up for my mother. It had her name and ALS reference book. So, anything that I did, I would always jot things down in this book. I call it the bible, because I had everything in here as far as her vital signs, what she was allergic to, when she was admitted in the hospital, when she was discharged.
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I had her PCP information in here, all her specialists that she went to. Any durable medical equipment that we used, because we had to order supplies on a monthly basis. I had it in this book. And whenever I wasn't around taking care of my mother, that next person will be able to pick this book up and see what's the next step, or what she needs.
I also had a bag. I had it to the side if an emergency come up. We have a ready-to-go preparedness bag. Everything that she needed in that bag was there, so we would know we would pick that bag up, along with this book.
We had an emergency where we had to take my mother to the emergency room, and we go into the emergency room and they ask different questions. "Is she allergic to anything? What are her medications? What's her doctor's name, number?" I would just give them the book, because my concern was my mother, just to keep her calm, keep the rest of the family calm. Everything is here in this book, everything is updated. I updated on a daily basis, so everything was here. They were really amazed how I had everything in order. This is the only way. This helped me a lot.
I also had a bag. I had it to the side if an emergency come up. We have a ready-to-go preparedness bag. Everything that she needed in that bag was there, so we would know we would pick that bag up, along with this book.
We had an emergency where we had to take my mother to the emergency room, and we go into the emergency room and they ask different questions. "Is she allergic to anything? What are her medications? What's her doctor's name, number?" I would just give them the book, because my concern was my mother, just to keep her calm, keep the rest of the family calm. Everything is here in this book, everything is updated. I updated on a daily basis, so everything was here. They were really amazed how I had everything in order. This is the only way. This helped me a lot.
Did your mother get a feeding tube?
Yes, she got a PEG tube rather early and it was a good decision, I think. She was still able to eat by mouth. At restaurants, she would say, "Latoya, don't worry about me eating." I'm like, "No, mom. We're here at a restaurant. We want to enjoy ourselves. I'm going to feed you. I don't care how long it takes. Let's just make sure you’re safe and swallow correctly, so we won't have accidents or choking incidents."
She did use the feeding tube eventually. She did bolus feeds, which worked out for us well. She was able to do the feeding herself until we had to do it for her when she didn't have strength in her hands.
She did use the feeding tube eventually. She did bolus feeds, which worked out for us well. She was able to do the feeding herself until we had to do it for her when she didn't have strength in her hands.
How did you navigate home accessibility challenges?
She had a power wheelchair, so we had to have some modifications done because she couldn't get in and out of the house. So, my nephew, who does construction, moved the steps to a different side of the house and installed a lift. We had a portable ramp to get her from the living room out to the porch, and then she would just drive out to the ramp. We all chipped in to get the ramp. Inside she had a stair glide to get up and down the stairs.
When she could no longer go up and down the steps, we transitioned everything to the living room and had her hospital bed there. We then ordered another bed that she liked way better than a standard hospital bed, because it did a lot of other things.
When she could no longer go up and down the steps, we transitioned everything to the living room and had her hospital bed there. We then ordered another bed that she liked way better than a standard hospital bed, because it did a lot of other things.
Can you tell us about her tracheotomy decision?
I'm glad my mother did make the choice to be vented and trached, because if not, she would've been long gone if she had not made that decision. She had a clinic appointment that day with me and my father. And she wasn't too certain. She was looking at us for answers. But I said, "Mom, this is something that we cannot make. You have to make this decision and choice, and whatever you decide, we're going to be behind you 100%."
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So, she made that choice to be vented and trached. And I'm glad she did. We didn't know what we was getting into as a family, but we made it work and we made it through.
Did she feel she made the right decision?
Eventually. After she had it done, she wanted to see herself in the mirror, and we were like, "No, mom, you're fine. You look good. You don't need to see yourself." But she said, "I want to see myself." We got a mirror and we showed her, and she just cried. She said she didn’t think she made the right choice. I said, "Mom, I think you did."
I don't know why, but most of our patients have this afterthought after it's done, that they don't think they made the right choice. But I said, "Mom, you did. You really did, because you’re here with us, and I'm glad." We were at the hospital for about a week. We had a good respiratory company that came out to the hospital to show us how to take care of our mother, living on a vent and trach and how to change the trach. |
I was scared. I didn't know, and I didn't even want to change or even touch the trach. The inner cannula had to be changed daily, and I was so terrified of that. I'm like, "Oh, I can't do this." But I didn't let my mom see that I was scared. I was like, "Okay, we'll get through this. We'll work it out." But in the meantime, I'm nudging my sister and brother, saying, "This is your job. I'm not changing this." They didn't have a problem.
And then one time I got the nerve to do it, because I had to, because it was an emergency. She had a mucus plug. So, I put my gloves on and changed it. I did it, and I was proud of myself. It was a good experience. I'm glad she made that choice and decision. It was some bumpy roads, but we made it work and we made it through.
She still was able to see her great grands and still mingle with her family and friends. We always had a house full. We still had parties and people would still come over to see my mother. We tried to make things as normal as possible for her.
And then one time I got the nerve to do it, because I had to, because it was an emergency. She had a mucus plug. So, I put my gloves on and changed it. I did it, and I was proud of myself. It was a good experience. I'm glad she made that choice and decision. It was some bumpy roads, but we made it work and we made it through.
She still was able to see her great grands and still mingle with her family and friends. We always had a house full. We still had parties and people would still come over to see my mother. We tried to make things as normal as possible for her.
How did the ALS clinic help your mom?
It's very important to be connected to an ALS clinic because they can give you good care and information. If something doesn't work, they can brainstorm with you.
They helped my mom learn how to swallow safely and do daily hand exercises. They made splints for her. They figured out what neck collar would work best. It's really important to be connected to an ALS clinic because they can help you through this journey.
They helped my mom learn how to swallow safely and do daily hand exercises. They made splints for her. They figured out what neck collar would work best. It's really important to be connected to an ALS clinic because they can help you through this journey.
Did you get some respite time for yourself?
I did. My siblings and my father would help so I could go out for a few hours at night if I wanted to go to the movies with my daughter. And my mother was connected through the state, so we were able to get aides and nurses. So, I was able to care for myself, take a little time for myself, which is always important for caregivers. Put your oxygen mask on first.
After your mom passed, why did you stay involved with ALS?
I wanted to give back to the ALS community. I felt as though this was a rare disease that I know a lot of people in my community didn't know about. I wanted to help them learn and be aware of this disease after my mom passed away. I just felt that I needed to give back, and this was my way to still keep my mother's legacy alive—to just keep on fighting and trying to find a cure for this disease. I started out volunteering with a few families, and then ended up with a position with Dr. Patterson and her wonderful team. I have not stopped working and advocating for our patients and families. I love what I do.
What do you do in your role as Patient Services Coordinator?
When the patients come in, I'm the first point of contact to get them scheduled. I do follow up with EMGs and additional testing that they may want to get the diagnosis. I help them schedule and get the appointments all lined up. I let patients know what DME company we will be working with and I check on insurance verifications. I also write a lot of medical necessity letters, trying to get things approved for our patients.
Is there anything you’d like to say to current ALS caregivers?
It can be done. The journey can be done. You just have to have that hope and that faith. Hope, faith, and love can get you through anything. It really can. As long as you have that good support system—good friends and family. Because we all know that with insurance, you cannot get 24-hour coverage or care for an ALS patient. The care depends totally on the family. It is nothing but family and good friends.
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You have to have a system in place. Peter will come in on Monday mornings at nine until 11, and Shirley will come in, taking over from that shift from 11 o'clock to maybe one o'clock. So, we would have to make things work. A lot of people have to make adjustments, but if you love that person, if you have that love to help someone, they will work things out.