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After Karen's husband Joel was diagnosed with ALS, she cared for him until an injury prevented her from caring for him alone. They searched for, hired, and trained paid caregivers, but grew frustrated when the caregivers quit because they weren’t prepared to care for someone living with ALS.
To improve caregiver retention and quality of care, Karen and Joel collaborated with Your ALS Guide and ALS Hope Foundation to develop The Joel Goldhirsh ALS Home and Daily Living Guide, an online training guide for ALS caregivers. |
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"Obviously, the disease doesn't just affect the patient. My world was turned upside down. It's important to take time for yourself."
Tell us about your experience as a primary caregiver.
My husband Joel started showing symptoms about four years ago and it was a 13-month journey to get the final diagnosis. I did an immense amount of research, found out about ALS clinics, and hooked up with one in Orange County, California, where we used to live.
At first, I was doing all the caregiving. As his hands started to weaken, I learned to become a manicurist, a barber—everything. We decided to move to Colorado to be closer to our daughter. We bought a house and started making adaptations before we even moved in.
At first, I was doing all the caregiving. As his hands started to weaken, I learned to become a manicurist, a barber—everything. We decided to move to Colorado to be closer to our daughter. We bought a house and started making adaptations before we even moved in.
I became stressed, depressed. I just felt like I couldn't do it all. If we went out to dinner, I had to feed him and I couldn't enjoy my meal. We started by hiring caregivers for a couple hours a day, then it started increasing. Now we have help from 8:00 in the morning to 9:00 at night. I fell off my bike and tore my rotator cuff, so I couldn't do things. I couldn't lift them. I couldn't do a lot of things. That's really what precipitated getting more time with caregivers.
How did you start looking for paid caregivers?
It was a long journey finding caregivers. I probably interviewed 12 different agencies. We recently settled down to two agencies. I can't tell you how many people have been in and out of this house. I would train them and explain where everything was, and then they'd quit. That's when I started developing some tools to help with what his routine was and where things were located, because I was tired of answering the same questions over and over again.
Why did you want to develop a caregiver training guide?
So that they don't make the same mistakes with other families. Many caregivers came into my house not knowing anything about caring for a person living with ALS. Teaching them how to help him eat, drink, and dress if he can’t use his arms. And how to use equipment. If they were trained ahead of time, it would be a lot less frustrating for families. It's hard to find somebody with experience caring for ALS.
What do you say to families that want to hire a caregiver?
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We made the decision that we didn't want to do a private hire because of the liability. We didn't want to worry about taxes. And so that's why we started with agencies. I did a Google search, and the ALS Association gave me their list of five. Then I called and asked, first of all, if they even had people, and then secondly, how they compensated the people, which I thought was important.
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And finding the right agency where people cared. They need to come to your house, see your house, see what you have and get an understanding of the person that they're caring for. They can’t just talk on the phone and send a body. They have to understand what the needs are. So, make a list and ask all the questions you need to ask, and make sure that you get answers for all of them.
One agency would send new caregivers in to mirror the caregiver that's already been here, and they didn’t charge us for that time. You start with one caregiver who knows what's going on, and then you kind of build on that and have them mirror that person. That was the easiest. Starting from scratch is hard.
One agency would send new caregivers in to mirror the caregiver that's already been here, and they didn’t charge us for that time. You start with one caregiver who knows what's going on, and then you kind of build on that and have them mirror that person. That was the easiest. Starting from scratch is hard.
What do you look for in an individual caregiver?
For Joel, it was important that they were strong enough to lift him. And they needed to have a caring attitude and be very attentive. It needs to come from the heart. The best ones are the ones that really care. You want to really look for someone that's compassionate, attentive to detail, and really enjoys doing this job. And it's not a job for everybody. I personally had to do it and it was hard on me. It's important that the person has the heart to do it. It helps me immensely.
What do you say to new caregivers?
The first thing is understanding the person's routine. What is their routine for morning, afternoon, evening? The attention to care. Constantly being near them if they're on a walker. Make sure they stay hydrated. And just little tips for eating and drinking. So that they can understand what some of those basics are. Some come in and they think it's just companion care. He doesn't need companion care. He needs self-help care. All the things that you think you can do yourself, he cannot do.
What do you do when a new caregiver arrives?
I give them a tour of the home and point out the different equipment. I have a caregiver routine spreadsheet that details—from getting Joel out of the bed to when he goes to bed at night—what to do. Have them look at that list and say, this is what you need to do. This is how you get him out of the bed. This is how you get him into the power wheelchair. Very specific. I have checklists for the caregiver to complete every day for medication and equipment usage and maintenance. The caregiver also keeps me informed when refills are needed.
And so I go through that list, and they need to reference it several times. And then I show them the second list, which is where everything's located. I ask them to please put it back where you found it. And then just basically going over it again. I say, "Just imagine yourself. You can't use your hands and your arms. Think about that. And that's what he cannot do." So it is just emphasizing that over and over again.
And so I go through that list, and they need to reference it several times. And then I show them the second list, which is where everything's located. I ask them to please put it back where you found it. And then just basically going over it again. I say, "Just imagine yourself. You can't use your hands and your arms. Think about that. And that's what he cannot do." So it is just emphasizing that over and over again.
Was it hard to leave Joel alone with another caregiver?
I wouldn't leave him with someone brand new, but I don’t have a problem with people that have had a lot of experience with him. I feel confident in their care. I have a care book with key phone numbers. We've had EMTs over here many times to get him off the floor when we couldn't get him up.
How can EMTs help?
I learned right away that you call 911 and say you need a lift assist. You don't want sirens. And then they connect you to the fire department and you repeat the same thing. I just need a lift assist. He's not hurt. He would slide out of the chair and we just couldn't get him up. Now, we have a mobile Hoyer lift that we can use, but I would say they were here five or six times. When you need help, you need help.
How has hiring caregivers changed your life?
It gave me some freedom. It allows me to just sit down in the morning and read the paper and drink my coffee. I go out and walk the dogs, run to the grocery store, and every now and then go shopping with my girlfriend. Before I couldn't leave the house, and I wanted to be able to work out. That helps with my stress level and I needed it to rehab my shoulder.
What would you say to family caregivers who are struggling?
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You’ve got to take care of yourself. In my support group, we encourage each other to take breaks. You need reprieves. I went through a lot of health issues last year and I definitely think they were caused by all the stress that I was under. I spoke with a counselor. A doctor prescribed some medication. My husband will tell you, too, that it has made a world of difference for me. I can stay calm and not get upset. Counseling, my support group, and medication helped me.
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Can you elaborate on how medication helped?
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The ALS Rocky Mountain chapter recommended two psychologists. They are experienced working with people that have ALS. So they know something about it. If you're going to get counseling, get it with someone who has experience in this area because it is totally different from other diseases.
I'm not one that likes to take a lot of medicine, but I was just so anxious and depressed and I needed something to help. I told my doctor I can't sleep, etc. He said, "Okay, I'll start you low." And you can ask my husband, I'm a much happier person. I mean, I don't feel any different, but I don't feel the anxiety that I felt before. Now I can stay calm. |
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How can support groups can be helpful for caregivers?
You hear people who are feeling the same thing. The reactions. Stumbling trying to find different care, tools, and caregivers. But I would say the biggest benefit is the emotional support. Everybody's kind of going through the same thing at different levels. Some people are just newly diagnosed. One woman lost her husband. Another lost her mother. What they went through helps prepare me.
It'll wear you down. You need to get help. You can't do it all yourself. I mean, some people are proud and they want to do it, but they're not helping themselves because if you're not healthy, you're not going to be able to take care of your loved one. And that is said over and over again at our support group, that we have to take care of ourselves.
And you hit your limit and you say, "I need a timeout. I'm going to go shopping for a little while or I'm going to go take a walk." You’ve got to take those breaks. Obviously, the disease doesn't just affect the patient. My world was turned upside down. It's important to take time for yourself.
It'll wear you down. You need to get help. You can't do it all yourself. I mean, some people are proud and they want to do it, but they're not helping themselves because if you're not healthy, you're not going to be able to take care of your loved one. And that is said over and over again at our support group, that we have to take care of ourselves.
And you hit your limit and you say, "I need a timeout. I'm going to go shopping for a little while or I'm going to go take a walk." You’ve got to take those breaks. Obviously, the disease doesn't just affect the patient. My world was turned upside down. It's important to take time for yourself.
