Caregiver Isolation and Loneliness
Diane Carbo: Hi, this is Diane Carbo with caregiver relief today. I have Alicia Martel. She is our end of life care advocate, caregiver, coach, and podcast contributor.
Alycia, I’m so excited. You’re here today. I’d like to start by sharing a little bit of your background and today we’re going to be talking about social isolation of caregiving.
Alycia Martel: That is a big topic. That is a big problem with caregivers. It goes to the caregivers for any type of illness, any type of caregiving, really. That’s something that everybody has experienced this past year.
Diane Carbo: Absolutely. I think that this year has changed people’s lives in ways that we’re going to feel for many years to come
Alycia Martel: a lot of people found themselves in a caregiver role as well this year. And I think it’s the perfect time to address both topics,. And how they go together. Because they’re new people to , how should I say way of life? To caregiving and to isolation. It’s not something that’s pretty, it’s not something that everybody has ever experienced before. It is definitely a lifestyle change.
Diane Carbo: I think that many caregivers go this social isolation when start their caregiving. And it’s happened slowly over time. This year with the COVID. I think what we experienced was total social isolation where the whole world was isolating and it affected everybody’s mental and physical wellbeing.
Alycia Martel: That’s right. There’s a whole component to them, the mental and the physical go together. There is a difference between this caregiving role to those sudden pandemic isolation we’ve experienced the caregiving that’s happened over time. You have people who are there in the beginning, you have your friends and family [00:02:00] and well-wishers. Both the patient and yourself, and then they just slowly drop back as they see the intensity of what you’re going through, and they see the patient maybe progress a little bit and it becomes scary to them. With the pandemic. All of a sudden it was okay, you need to stop. You need to stop. What you’re doing. Life is shutting down, go to your home, retreat to the caverns, and then. When you have to do that, physically, we become sheltered in our little, our homes, these four walls. We don’t get out as much, and that literally takes a toll on our bodies because we’re not using them.
Diane Carbo: Yeah. Increased stress, depression on even dementia must be increased during the social isolation. And it just creates like a vicious cycle or which has been really hard [00:03:00] more. So this year than any other year, because the pandemic, the consequences has just been staggering.
Alycia Martel: There have been rates of suicide have jumped. The rate of just mental illness. People seeking treatment have skyrocketed, absolutely skyrocketed. And it takes forever.at least where where I’m located. It takes forever to find a psychiatrist, a therapist, a bed, and a treatment facility. You’re waiting weeks to months for any of those treatment options? Nobody was ready for this because we are social creatures. Nobody ready for the isolation part of caregiving because we are social creatures. Even introverts are social creatures,
Diane Carbo: Exactly. One of the things that I want our listeners to understand, is that you have been a caregiver for 14 years.
Alycia Martel: Yes.
Diane Carbo: You also understand , what new caregivers may not understand is that and you had mentioned it earlier that, you slowly lose your friends. You slowly, you lose contact to the outside world. Your world as a caregiver becomes less and less. Because you become more, more involved with the person you’re taking care of. So people don’t understand that, one of the important things is that outside relationships are just like a plant that needs watering and attention. And. We start to neglect those things in our lives as a caregiver. And it’s very hard on a caregiver because they do feel so socially isolated.
How did you deal with that? I know you’re also a mom of a 14 year old right now, and you’ve been doing this for seven years, so you’ve had very [00:05:00] long journey. You’re seasoned at this. How do you keep going?
Alycia Martel: Dark humor and caffeine. I don’t know.
Diane Carbo: You do have to have a sense of humor and I think some caregivers lose that ability to find joy or laugh in their day with life because they’re struggling to take care of somebody else’s, they’re not meeting their own. Dad has dementia. And so you’re struggling with his decline and you also are a person you also suffer your own chronic medical conditions to deal with.
Alycia Martel: Oh, yeah. Yeah. I knew I struggled daily with depression, anxiety. I have a traumatic brain injury and I have good old fibromyalgia. I’ve learned over the years, how vital self-care and I’m going to say this in bold letters, self care is and that is an entire two months of talked right there alone, yeah. And part of the self-care is, the social component too, it’s so not easy when you’re trying to be a human, and take care of another human who has so many issues. They need all of attention. They need all of your help and you’re there to give it to them.
And you can. But in the back of your mind, you have the one thoughts running through your head, or you have these pains going on in your physical body, and then you have these feelings going on in your heart. Then you have the isolation component that, you can’t call anybody for any type of help or a respite, or, a cup of coffee to chat over. All of which are pretty normal human activities to take part in. Friends and family, and they’re not there because over time you get back into your schedule become your loved one schedule.
And in between their schedule, , you’re exhausted. Your shoulder hurts, your feet are swollen or. You have brain fog, which is very hard to explain, but it’s where you can’t concentrate. And everything’s just a little off, and you have to try to manage those symptoms. So no, you get a random invite to dinner. Really? Sorry. I can’t, in my case, dad has a very strict schedule with his meals and he a few nights a week goes out with friends to meetings and I have to be here at a certain time to make sure he’s ready. And to constantly reassure him and keep him calm that yes, your friend is coming. You’re going to this place and that’s a good hour. And that’s what it is.
Diane Carbo: I think that caregivers don’t realize that when they promise to take care of somebody at home and they make that commitment, they don’t realize that commitment could be as long as 20 to 30 years from today.
Yeah, that’s a huge commitment.
Alycia Martel: It is. It is a massive commitment, there’s certain illnesses you’re gonna encounter. Where, it’s terminal. When I was married, I took care of my mother-in-law, who was stage four brain cancer. And we had hospice and home at our house. And, there wasn’t any coming to that.
And that was still five months. And that was a beautiful experience. And that’s shaped where I’m going today. And I would absolutely do that again in a heartbeat if I had to. And that was a very brief experience. I’ve been with dad for seven years now and his progression is so slow, which is a blessed thing.
I could be here another 10 years. You know what I’ll take. Because of that means he’s happy and healthy, then that’s what I’ve .Committed to do. I do boundaries in place. As to when he is going to need more care than I am prepared to give him. Which I’ve also learned in the past. I may not have that I didn’t do that.
Diane Carbo: Boundaries and limits are really important. As you move along your caregiving journey. Knowing what your expectations are your abilities are. And what you’re willing to do maintains over time. And that’s something that I take that most caregivers don’t realize is they make promises that I’ll keep you, , till you die in the home. And they don’t realize that there may be, especially with a person with dementia, the decline may be very slow. Where they’re doing it for 20 or 30. Or they have somebody who is a healthy senior that is living to be a hundred,. But they still need somebody to monitor them all the time. And people don’t understand that there’s social things that happen. That they become socially isolated, the caregiver is because of the care that is required on them.
The demands, the time. How are you feeling about, our social structures are moving as well to online. While we need that interaction. Do you feel that we’re not connecting, especially this past. The pandemic? We’re not connecting as well, like with phone calls and visits, people will just want to text. Or they just want video messaging online. How do you feel about that? Does that meet your needs in any way as a caregiver?
Alycia Martel: I’m torn on that one. See, I think that the internet. Literally saved me from the isolation ,part in the beginning. Because I joined that wonderful Facebook group for caregivers of dementia patients. And I believe actually that’s where I met you. And I made some really great friends. We were able to chat in the middle of the night. And I still talk to them to this day. And you really can form some great friendships with people that you meet online .No matter where they are in the world. And I think that is a great form, especially with video calling. I do think that is, that helps a lot. That helps a lot, me and there’s one woman we run in on the off chance that I do get out. We have virtual cocktail together. I also think that texting and seeing words on a computer screen is one of the best ways to miscommunicate. Yeah, there’s also a very impersonal side to it and it can end up in a lot of conflict. Because you can’t see the other person’s face and read their body language. You can’t hear the tone in their voice and hear the inflection. Your brain puts it there itself .And our brains don’t always agree with us. It’s a two-fold thing. So I say yes or no.
Diane Carbo: Yeah, it is. It’s like it, technology can be a double-edged sword. Because as far the people that we’re caring for. I think that , because they’re not into the technology as much. They withdraw to an extent and maybe we lose some things from them because they’re not provided with a meaningful opportunity. To the degree that they can allow them to continue to experience joy, purpose and engagement in life. I think that’s one thing that has happened especially this year, more than ever. We have dealt with a situation where the social norms or the social structures of moving online, I have not accommodated the pace and the way we take care of people. So we just need to create more opportunities where caregivers and their loved ones can be included in some way or somehow.
Let’s talk about ways to beat social isolation. I loved that you have the friend that you have the virtual cocktails with. That is awesome. That’s awesome. I like that you have the support group because you’re finding friends and that’s important as well. , , are you willing to Ask for help when you need it? I think that’s really important. you were talking about having difficulty finding a psychiatrist or getting into a therapist. Many caregivers don’t reach out like that, but that’s a really important thing that we need to consider.
Alycia Martel: Do you mean to ask for help in, in that sense, look for professional help or ask for help. Yeah, I know.
Diane Carbo: Anyway, get help from other people. Right now, I think a lot of people need mental help. ,
Alycia Martel: Everybody does. I’ve always believed that one, everybody took a year and went to therapy. The world would change,. But that’s my philosophy. I there’s a lot going on with commercials for, online therapist. I think that is brilliant. And I think that’s gonna help a lot of people because I know there’s rural areas that don’t have a lot of professional mental health facilities around. It’s very hard to ask for help. As a caregiver. In the beginning, people are very quick to offer help, to or to respond to requests for help. Sure. I’ll take it to the doctor or sure of let’s go grocery shopping, that’s fine. And then that becomes a bit of a burden. Because they don’t want to take that much time. To make a commitment to that. Because we all have our family, everybody has their families, their careers, their own friends. . And it can also be very painful to watch someone they love being sick. Especially something in the dementia family. That is quite painful to watch and very confusing. Because not a lot of people have experience or education on it.
So when cousin Sally is being called, cousin Timmy. It’s very confusing. So they remove themselves. And finally, you just stop asking altogether. Because you get to the point of why bother. I’m just going to do this myself. I’m going to figure out a way. Is it always healthy? No, that’s not always the healthy way to do it.
You really need to be able to ask for help. If you can’t ask for help, there are ways of doing it that doesn’t always have you shouldering the burden? In my case, I don’t drive. I have a TBI and a eye injury from the accident. So I have a lot of things delivered. I have my groceries delivered. I have my household needs delivered. I have my crafting needs delivered. I have everything delivered. Do I have to pay the upcharges and the delivery fees? Yes. There are ways to get what you need. If you [00:16:00] really have nobody to ask.
I also have no friends that are local. I do have friends. And now I have, I was able to make one son because one day I was desperate and I reached out online on Facebook. I put out an all call. I offer gas money and homemade cookies to get me to a doctor’s appointment. And there’s one girl I met one time messaged me and took me up.
So we’ve been joined at the hip for the last two years. So I do have to say that , you never know what will happen if you do ask. But you always do have to take the chance now. So there are healthy options to getting what you need done, instead of just running yourself ragged by going do it all by yourself.
Diane Carbo: I agree. Caregiving is done by individuals that offer a lot of love and affection. And I think that with caregiving comes a lot of loss as well. Because , as we talked, we can meet your friends, disappear, your family members disappear, or don’t want to be involved. So it gets to be a very lonely business. And it’s easier for caregivers to isolate themselves then, too. Get out and look for the help that they need. And it could be things because the person that caring for like your dad, they have a behavior that keeps you venturing out in public. Because it causes more apprehension than pleasure. Or, caregivers get tired of explaining or they get angry or afraid and they feel like it’s just easier to stay home. I think they start to avoid people. And it just can really show how important self care is. I will tell you, [00:18:00] having run caregiver groups over the last 10 years. Every year I lose two or three caregivers to death or a sudden illness.
Because they didn’t take care of themselves. They died before, or they became so ill that they were no longer able to care for the person that they were so adamant about helping to stay at home. Caregivers need to understand and know that they need to reach out and get the help that they need . And so many of them don’t have the financial ability to do that. You’ve been doing this for seven years, I’m sure that you have financial limitations that keep you from doing more. I love that you were able to offer cookies. That, that had to be hard because to get somebody. But out of that you’ve developed a friendship that is helping you continue to feel better about yourself. And I like that.
Alycia Martel: Thank you. Yes. The financial limitations are absolutely horrendous and there’s just no other way to say it. I was unable to take a job for a very long time . Sounds horrible. But I started a relationship and a couple of years into the relationship, I ended a job doing some driving part-time. And it was good. He was out of work at the time. So he was home and it was a split shift. I would go in the morning, I’d be home for lunchtime. I’d check on dad. And he was with dad the rest of the day. And he was able to get the kids, after school and start dinner and I’d be home for dinner and it works out great. But that’s when I had a car accident because I was driving. And not my fault, but anyway, that worked out well.
So things did very well at it at the time. But since then I’m disabled. I can’t work. And the financial strings are just back again, and there are options to that as well, but that’s another, but [00:20:00] that’s for another day. It’s very difficult to support yourself or, meet your own basic needs times. That just adds a whole another level of stress. I’m not surprised that you’ve lost caregivers to severe illness or, sometimes to death. There’ve been studies, it’s like a quote them, but there’s been studies that say caregivers of dementia, patient will end up developing dementia early on. There are statistics that talk about caregivers, becoming ill while they’re caregiving. Yeah. It’s scary.
Diane Carbo: It is. And that’s why it’s so important that caregivers reach out and practice self care every single day. The study show that with support leads to less stress, less depression, better health,. And that’s really important when you’re providing care for somebody else, And on that note, Alycia and I’m so glad you’re with me. And I can’t wait till we speak next week on our next podcast., I’d like to tell my caregivers. Remember you are the most important part of the caregiving equation. Without you. It all falls apart. So practice self every day. Because you are worth it. Thanks, Alicia. And next week I’m looking forward to talking with you again.
Alycia Martel: Thank you, Diane. I am too.
Diane Carbo: I’ll talk to you soon. Bye.
More on Coping with the Isolation and Loneliness of Caregiving
Did you know that between 40 and 70% of family caregivers experience symptoms of clinical depression? These feelings of sadness and despair are often triggered by the isolation and loneliness that comes with the caregiving experience. It can be a challenging and dark time for those caregivers who feel alone in their duties.
Why Caregivers Feel Isolated and Alone
For caregivers like Alycia, the withdrawal from their previous habits and lifestyle can lead to feelings of isolation and loneliness. As friends continue with their daily routines, caregivers are left feeling abandoned in their caregiving responsibilities. Without support from others in similar situations, caregivers may feel like no one truly understands what they're going through. This can result in a withdrawal from social activities and relationships they once enjoyed. Some caregivers may even face literal isolation, unable to leave their care recipient's side for long periods. The lack of social interaction and stimulation from individuals other than their care recipient can be a major factor in feeling lonely, especially when the care recipient has cognitive impairment.
The Impact of Isolation on Caregivers
Feeling alone as a caregiver not only takes an emotional toll but can also have unexpected physical side effects. Many caregivers report weight gain due to emotional eating and increased blood pressure caused by stress. These health issues can lead to complications like diabetes, stroke, or even premature death. Even the slightest feeling of isolation can have a significant impact on a caregiver's overall well-being, making it difficult to focus on other aspects of life outside of caregiving.
Strategies for Overcoming Isolation
One of the best ways to combat isolation and loneliness is to prioritize self-care. Despite the limited time caregivers have, there are ways to reconnect with people and activities that bring a sense of connection and contentment.
Respite Care: Take advantage of respite care to focus on your own needs without worrying about your care recipient's safety. Home care agencies or local programs like your Area Agency on Aging can provide respite services. Friends and family may also be able to assist you in caregiving duties from time to time.
Find Support: While it may seem like nobody understands what you're going through, there are others in similar situations who can offer support. Look for local support groups or online forums to connect with caregivers who share your experiences.
Maintain Your Sense of Self: Use whatever time you have for yourself to engage in activities that bring you joy and rejuvenation. Whether it's yoga, nature walks, or enjoying a movie night with your family, staying involved in your own interests can help you feel connected to yourself and your loved ones, even if they don't fully understand your caregiving journey.
Feeling alone is a common struggle for caregivers, but there's no need to feel ashamed or afraid to seek support. You deserve companionship and understanding during this challenging time.
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