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Many families have to move a loved one into a nursing home because of dementia. The experience often comes with grief and loss and a sense of failure.
For his series Getting Into Their Reality: Caring For Aging Parents, News Director Eric Douglas visited a nursing home in Marmet, West Virginia with a memory care program for people with dementia to discuss the process.
He spoke with Julia Smythe, the dementia program director, and Natalie Petty, the director of admissions and marketing.
The transcript below has been lightly edited for clarity.
Douglas: People only put their family member in a nursing home for the first time once it’s an overwhelming feeling of, “Oh my God, what’s going on? I don’t understand any of this.” There’s a lot of fear. There’s a lot of confusion. And I can speak to that personally. So talk to me about what that’s like. What’s the admission process? What do you do when somebody comes and says, “My mom has dementia. I don’t know how to deal with this, what do I need to do?”
Smythe: What we do is we provide support through resources through the Alzheimer’s Association for caregivers. What I always do is I send out a packet to the family member that includes caregiver stress, how to care for yourself while you’re caring for others, and grieving because during the process of dementia, you don’t grieve once, you grieve several times, because you grieve the loss of each stage.
That’s a very real experience that all family members I talked to experience. So when they’re admitted here, what we do is we have a meeting with the family and we discuss what it’s going to be like living here for their family member. And we include the family members and all activities that they would like, too. They can come in freely and join in on activities and mealtime. You can join in on meals here, too. It’s supposed to be a home-like environment.
When I’m talking with family members about placement, what I usually stress is, it’s the safety of your loved one. That’s what we’re most concerned about. Because when it comes to the placement, most people are at the point where their family member is trying to elope from their home, because they don’t feel safe. They keep saying that they want to go home even though they’re already home. And that’s all because they don’t feel comfortable in their own body.
Our job is to create that comfort through the programming. So that’s really what I talk to family members about to try to ease them. And of course, when they’re here, I encourage them to visit as much as they want unless it causes some behaviors, because it can for some people with dementia, if they think you’re not the person you are. We monitor those things to try to work with family members to see what the best visitation schedule would be for them and how we can use our tools that we do in the beginning.
Petty: When it comes to the financial issues, that is also very overwhelming. So I will also meet with families, tell them where to start, how to start the Medicaid process if needed. We even have some girls in our office that can help walk you through that application and get that submitted. So we help with the steps to that as well.
Douglas: Let’s talk about the admissions process a little bit more.
Petty: Depending on where the family member is, if they’re at home, I usually start with the family. And like we talked about earlier, we bring the family and we talk about what their needs are.
Douglas: Let me back up and ask one question. Do you need a doctor’s referral?
Petty: Yes. That’s usually where I have everybody start, especially if they’re from home, I have them start with their doctor, have them get an appointment with them, let them know what situation they have at home. There is a pre-admission screening form that has to be filled out by the doctor. And we need a little bit of clinical information from that doctor’s visit, we can get that submitted for approval.
And then we start looking at their payer sources, if they have insurance, what type of insurance they have, if they need Medicaid, we start working on that and get everybody started with that process. And then after that, you’re on the referral list. And so it’s just a matter of when we have an open bed. And when all the paperwork gets approved. Once we do that, then we usually contact the family and we set up a time for them to admit their family member.
If it’s from the hospital, a lot of times that works a lot faster than home. It’s a process when they’re at home. But the hospital’s able to bypass your family physician. They have doctors that can fill out that form and they have access to all the clinicals when the patient’s in the hospital so and we have liaisons at the hospital that can come in and assess the patient when need be. So all of that can be fast-tracked through the hospital.
Smythe: I also assess patients in the hospital and at home and other facilities. So I can go into the home as well upon request or they can come and bring their loved one to the memory unit to see how they do interacting with other residents. We’ve done that before, too.
The memory care staff also sets up a community activity to allow family members or members of the community to come in and experience what it’s like to have dementia, including the physical and perceptual challenges.
Listen above to Julia Smythe explain the dementia experience in this bonus audio content.
The transcript below is from the dementia experience.
Douglas: Tell me what you’re doing here today.
Smythe: We are running a dementia experience. We dull your senses to the point that someone with dementia would be feeling. We want you to try and to take on everyday tasks with your senses dulled to see how difficult it is to do your activities of daily living. What we do is we put gloves on you, we put little earplugs in your ears, we put a hat over your head, we put prescription glasses on, and then sunglasses over those. The reason for that is when somebody has dementia or Alzheimer’s, their vision is greatly affected. They usually have tunnel vision, their peripheral is very dark. That’s what causes a lot of falls and mobility issues. We also put rice in your shoes. And so the rice in the shoes is to show you how off balance somebody is when they are not able to feel their extremities the way they used to. You can see the shuffled gait or the high risk of falls with the rice in the shoes.
What we do is we have you put all of those things on, and then you have to attempt to get dressed and put a piece of jewelry on. And then we move to the second station. That’s our office station where we have you read these bills here. And then we will have you fill out these checks. And we want to see if you can match the amount with the correct amount on the form here. Running this experience, we’ve seen that with all of the gear on, it’s extremely difficult to find these lines. It’s extremely difficult to write the same way that you normally would. Your handwriting is not as legible.
That’s actually one of the things that I noticed about my grandmother when she first started getting sick. She used to write scripture all day, and I noticed that her handwriting was getting worse. And then that’s when all of the cognitive issues started and she started being looked at for dementia.
It’s little things like that when you notice trouble with finances and then the inability to write or verbalize things the way that you used to.
Then we have our assorted folding station. As you can see, it’s a jumbled mess. You have to attempt to fold the scarves that we have here. And then you have to match all of the socks. And then you take all of the utensils here, and you have to separate them into our utensil bin here. So this is a very difficult station here because you can’t feel your fingers too well. And it feels like you have really big hands.
Our last station over here is pill sorting. Because of the gloves you can’t feel where the pills are.
Members of the community interested in going through the dementia experience can call the Genesis Marmet Center to schedule an appointment.