The Unacknowledged Life of a Caregiver

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Hello everyone. Welcome to a new episode of the Truth, Lies Alzheimer's Show. I am Lisa Skinner, your host, and I want to talk about a very difficult and sensitive topic today. And this really is going to be for anyone and all of you who are in a caregiving role. I know many of you are going to be able to relate to the feelings that the following caregivers are expressing. And these are true feelings of, uh, what other caregivers are experiencing out there that I found found online, and I'm going to share them with you. Um, so for those of you who are in that situation and these feelings resonate with you, please know that you are absolutely not alone. And then after I read these to you, I'm going to offer some tips and resources of maybe how you can remedy some of the feelings that you might be having throughout your, your role as a caregiver, especially if the person you're caring for happens to be living with Alzheimer's disease or a related dementia, which is probably one of the hardest jobs that any of us could ever undertake. So let me share with you the first one. From this anonymous participant. She says, hello everyone. I've been caring for my mom for the last 3 years. I'm 33 years old and I'm the youngest of 4 siblings. I feel like I am doing this all by myself. I get some help, but little to none. My mom gets the lowest amount of Social Security she can get, and I pay for all the remainder of her needs financially. I am burnt out. Exhausted isn't the word. I work swing shifts mainly at home, so I'm grateful, but I am so tired. Sometimes I feel like they all think I'm overreacting. 'Because I usually snap because my cries for help always fall on deaf ears.' Anybody else out there feeling that way? This woman says, 'Everyone is coming and going all around me, doing exactly what they want to do. I do feel so grounded inside this house, unable to come and go at will.' Sadly, nobody cares. When I do get out, it's to run errands for my mom or pick up my grandson from the school bus, and I am so limited as to how long I can even be away. And no one ever calls me or invites me to do anything with them. No one even calls to say hello. I'm beginning to feel nonexistent except when someone needs something from me. So sorry to dump this all on you, but others just don't understand or care. That's the way she's feeling about it. And then somebody responded to her comment and said, I feel the exact same way. I had a friend tell me to call when I needed them, but I have yet to hear back from her. It's been a week. It feels like hell to ask for help or to get people to meet with me. And I'm just feeling so alone and frustrated. And then somebody responded to her saying, you could have written that for me or about me, and you are not alone. We got this. And everyone who's in your— this situation truly understands. Another person says, I've totally given up on people. I just stay focused on taking care of my husband and trying to survive this. I used to be a little envious of others having normal lives, quote unquote, but now I don't even care. I'm too busy with our day-to-day existence. People can't relate and they don't even want to. This person says, well, you're not alone. It is a very hard, lonely, frustrating, disheartening, aggravating life we have. And then another person expresses the way she feels about being in her caregiver role. I feel like a prisoner in my own home. I can only go to the store or run errands after I get my mom to bed. This other person says, I've started this journey recently and I already feel trapped. I pray God gives both of us what we need to be what we need to do this. Response to her was hugs. For all of you out there who are in the caregiver role, I don't feel like I have a life anymore. I've been my mother's caregiver for 3 years. For the past 7 months, I've been sleeping in her room with her. I no longer sleep with my husband 'Because my mom is up all night if I'm not in the room, in the bed with her.' And somebody responded to her post, 'Yeah, I'm in the same boat. Nobody calls to check on me or texts me. I really don't have any friends anymore. Thank goodness for my outside of my caregiver role job.' And then somebody says, well, you sound trapped. That's not good. Find a way to be with friends or you will burn out and be no good for anybody, including yourself. That's just my two cents. Everybody needs to be able to find some kind of release. Losing yourself is not healthy. 'Even nurses work in shifts.' 'It is difficult,' says another responder. 'I took an hour and a half today to run to the bookstore and to go to the library, but I felt so guilty.' Is that resonating with any of you out there? It sure resonates with me when I was in a caregiver role for my mother-in-law. Yes. This woman says, you all have just described my life accurately. This woman says, I totally understand. I was in that position too. My husband just passed on this in December. I had feelings just like yours. It totally took a toll on my health. It's so hard to find help. It's a 24/7 job. I miss him, but I know he's at peace now. This lady says her friends have all walked away. I think that a lot of people out there especially those of you who are listening to this broadcast, feel that you've just been abandoned, and I don't blame you. This lady says, I know exactly how you feel. No one ever tells family caretakers what it's really like. My brothers, who are no-shows, never even ask me if I'm okay. They dread the 5-minute phone calls that they have with our mom, and then they just hang up and that's it. They go about their own lives and don't even show any concern for, for the responsibility that I've undertaken. This lady says, yes, I feel the same way. Friends and family have stopped calling. They're just so uncomfortable. They don't realize how a phone call can help lift you up or break up your day even a little. A visit can make such a difference in all of our days. Even if they don't do anything to help, it would still make a difference to us just to be acknowledged. I feel the same way. "My world has gotten very small. I get out for about 15 minutes for a walk with my dog, and then I feel like I'm totally under house arrest." I absolutely know that feeling. Everyone else's life goes on, and here we are alone except for our loved one that we take care of. Nobody has a clue what we go through day after day. Time to yourself is almost non-existent. People say they care, but it doesn't help. I want to just take a pause for a second as I finish reading these, that as you all know, I've been helping families through their struggles with having a loved one living with Alzheimer's and related dementia, and also caregivers for 30 years now. And every single one of these expressions that I am sharing with you today, I can tell you I have heard over and over and over again This is an ongoing critical situation for caregivers. So let me share a few more with you. And then I did some research on some of the resources that are available, and maybe that'll be helpful to get a little bit of relief so you don't end up burning yourself out and, you know, putting so much stress on yourselves that you end up having medical problems as a result. This woman says, "It feels like a prison oftentimes. I haven't had a trip in almost 10 years. I've pretty much given up on those for the rest of my life." I totally relate. It feels as if I've been abandoned by everyone except my son. He's helpful and is always willing to come by to help or talk if I feel like I'm losing it. Thank gosh for the son, right? This woman says, you're not alone. Everything everybody is stating sounds exactly like my life. I can totally relate to all of you. I lost my husband in November, and I was the only person to try to do everything, and I have 14 siblings. I got nothing. And from health people, I got nothing. And here I am still with nothing. I'm just trying to survive. So again, for all of you who are hopefully listening to the information that I'm sharing with you in today's broadcast, I think the most important thing to realize is yes, it's okay to be feeling the way that you're feeling, but You're— please don't feel that you are the only one out there who is feeling the same way. There are thousands and thousands of people that are sharing exactly what these other people are feeling. So what can you do about it? That's the important point here. Is there anything that can maybe give you some relief? Caregiving with someone with Alzheimer's disease or dementia, as you know, can be extremely, extremely challenging. And it's not uncommon for caregivers to experience feelings of what these all, all these people were expressing: hopelessness, isolation, being trapped in their environment. It's so important for caregivers to take care of themselves and seek support when they are feeling overwhelmed. But how do you do that? Well, here are some resources that can be helpful for you caregivers in these situations. You can join a support group. Joining a support group for caregivers of individuals with Alzheimer's disease or dementia can provide a sense of community for you and understanding. And so you'll know that there's lots of other people, just like the ones that I shared with you today, that are feeling the exact same way. At least you can bounce those, those feelings off of each other. These groups allow caregivers to share their experiences, their challenges, their emotions with other people feeling the same way. They are— there's counseling and therapy resources out there. Speaking with a professional counselor or therapist can help caregivers work through their feelings of hopelessness and stress. Therapy can provide strategies for coping with the challenges of caregiving and help caregivers manage their emotions in a healthy way. I think you just need to learn how to do that, what that looks like. And what it looks like for you personally. There's respite care available out there for caregivers who need a break from caring for their person. Taking breaks from caregiving is essential for preventing burnout. Respite care services offer temporary relief for caregivers by providing assistance with caregiving responsibilities and allowing caregivers to take the much-needed time for themselves and to be able to recharge. Everybody needs to be able to do that. There are Alzheimer's and dementia organizations. Organizations such as the Alzheimer's Association or the Alzheimer's Foundation of America offer resources, support, educational materials for caregivers. These organizations often have helplines, online forums, educational workshops, and other services to support all of you out there, specifically to support all of you caregivers out there. There are educational resources available. Now, learning about Alzheimer's disease and dementia can actually help caregivers and ensure that their loved ones receive the care that they need. Their self-care has to be a huge, huge priority for all of you. Caregivers are encouraged to prioritize self-care activities such as exercise, relaxation techniques, work on hobbies, and spending time with your friends and family. Taking care of your own physical and emotional well-being is critical for you to be able to effectively support your loved ones and/or the people that you're caring for. And you're probably thinking, as I'm saying that, it's like, well, yeah, that's easier said than done. I know it is. I know it is. I know what you're going through. But maybe if you take some baby steps and try one or two of these resources that I'm sharing with you, it could actually put you on a new trajectory of positivity and relieve you of some of the ways that you are feeling in your current situation, because that can't be good for anybody. It's difficult. Um, I mean, caregiving can be physically and emotionally demanding. I don't think I need to, uh, reinforce that point to any of you. You already know, you live it every day, and it can take a toll on your health and well-being. Some studies have suggested that caregivers may have higher rates of stress-related illnesses, more depression, and other health issues compared to non-caregivers. I think that's absolutely true, and I've been hearing that for decades. It's essential for caregivers to prioritize taking care of themselves. To seek out support and to take breaks to prevent burnout and to maintain your own health. You're no good to anybody, especially yourselves, if you don't make this your priority. If you are a caregiver and you're feeling overwhelmed, which I'm sure you often are, Or you are already experiencing health issues related to caregiving stress. It's so important, and I can't emphasize this to you enough, to reach out for help. Utilize these support services, the respite care that's available out there, the counselors that can can help, possibly help you figure out how to relieve some of these feelings and other resources that are out there to ensure that you are taking care of yourself while also caring for your loved one. So how do you even find respite care? I made a list for you. There are local Aging and Disability Resource Centers. The acronym for those is AD A-R-C-S. They can connect caregivers to respite care services in their area, in your area. These centers offer information and assistance on a variety of services for older adults and individuals with disabilities, including respite care. There are home care agencies out there. Contact your local home care agency and talk to them about, um, the respite care services that they offer. They can provide trained caregivers to assist with caregiving responsibilities on a temporary basis, allowing caregivers to take a much-needed break. There are also healthcare providers. Talk to your loved one's healthcare provider or social worker about respite care options that they may be able to refer you to. They can possibly provide you with recommendations and referrals to the services in your area. There are local nonprofit organizations. Organizations such as the Alzheimer's Association, local senior centers, or other nonprofit organizations may offer respite care programs or can provide information on respite care services that they're aware of in your community. There are also online respite care directories. These directories can help you find respite care services in your area. Websites like the ARCH, A-R-C-H, National Respite Network and Resource Center, or the National Respite Locator can help you locate respite care providers near you. Maybe there's some friends or family that you can reach out to, or neighbors who may be able to provide some, some quick relief for you just so you can go out and take a walk. Even short breaks can make a significant difference for you in your caregiving world. And then for veterans out there, there are programs, um, that are specifically created for veterans who may be eligible for respite care services through the Department of Veterans Affairs. So contact your local VA, um, or local veterans service organization to get more detailed information. And again, I know that this is much easier said than done in the real world, but what are some of the ways that you personally can start taking better care of yourself? Taking care of yourself is crucial. There's no ifs, ands, or buts about that. Taking care of individuals with Alzheimer's disease and related dementia is a burnout looking, looking for a place to happen. And it's critical for you in order to effectively do your jobs. You need to really prioritize maintaining your overall well-being. So here are a few strategies for you to consider, maybe to help you take better care of yourself. Again, by seeking support, by reaching out to family members and friends for emotional support and guidance. Even if they're not available to help you physically. Maybe they're living too far away, but if they could be a sounding board for you, that would, that would really be helpful. Um, I've talked about this already, prioritizing your self-care. So what does that mean? What would that look like to you? It would look like you making time for activities that promote physical, emotional, and mental well-being, such as getting some exercise in, relaxation techniques, finding, uh, some doable hobbies that you enjoy, and spending time with your loved ones, taking breaks and self-engaging in self-care activities so you can recharge and reduce some of that stress that you are holding on to. You've gotta set boundaries for yourself. Establish clear boundaries around your caregiving responsibilities to prevent feeling overwhelmed or overburdened. Learn to say no to additional commitments or tasks that may interfere with self-care or personal well-being. It's okay. To draw your line in the sand. We've already talked about utilizing respite care services. Staying organized can be helpful, and you can do this by maintaining a schedule or a care plan to help manage your caregiving tasks, the appointments, the medications you administer, and some of your other responsibilities. Being organized can reduce stress and help you feel more in control of your caregiving duties. Practice stress reduction techniques, and you can do this by incorporating stress reduction techniques such as deep breathing. You can do that anytime, anywhere. Maybe learn how to meditate, do yoga, or mindfulness into daily routines. These techniques can be so— can make such a difference to your world. And then take breaks. Regularly scheduled breaks are respite time for yourself to rest, relax, and engage in activities that bring you joy. Taking time away from caregiving responsibilities is essential for recharging and maintaining your own health. Attend to your own health. Well, how do you do that? By making sure you prioritize your physical health by eating well, exercising regularly, getting enough sleep— so important— and attending your own medical appointments. Caregivers need to take care of their own health. Period. Remember, taking care of yourself is not in any way, shape, or form being selfish. It is essential for your well-being and your ability to provide quality care to your loved one with Alzheimer's disease or dementia. Prioritizing self-care will allow you to stay healthy, to stay resilient, and be better equipped to handle the unforgiving demands of caregiving. Here are some more tips and considerations for caregivers of individuals with Alzheimer's disease and related dementia that might help you. Take better care of yourself. And one of the suggestions is to practice mindfulness. Mindfulness techniques are, again, and may include deep breathing exercises, meditation, yoga. These, all of these things can help you manage your stress and also to help you stay present in the moment, and also to promote your own emotional well-being. They can enhance practices for resilience and for coping strategies. Stay connected. This is also really important, and a lot of those people that were sharing their feelings, um, that I shared with you today, there was a constant, um, recurrence of this same theme that they feel very disconnected with everybody in the world, basically. So how do you stay connected? By maintaining relationships with friends, family members, and these support networks that we talked about. To help prevent these feelings of isolation and loneliness. Reach out for help when needed and stay connected with others who can provide emotional support and understanding. Celebrate small victories. Acknowledge and celebrate small achievements and moments of joy in your caregiving journey. Find moments of positivity and gratitude that can help you counterbalance the challenges that you face every day in your caregiving role. Stay informed about the resources that are available out there. Know what support services are out there. And, you know, Don't hesitate for a second to reach out to them. That's what they're there for. And another one that I really like is practice self-compassion. Be kind to yourself. Recognize that caregiving is a challenging role, and it's important to treat yourself with the same level of care and compassion that you're providing for your loved one or the person you're caring for. Don't feel guilty about that. Not at all. And so many caregivers have told me that they do, but you deserve the very, very best. You are in one of the hardest roles that anybody could ever undertake. Remember that caring for yourself is not a luxury. It's a necessity. I cannot emphasize that enough. By prioritizing your own well-being and self-care, you will be better equipped to provide quality care to your loved one with Alzheimer's disease and dementia. I know I've said that several times throughout this episode, but you know what they say, People need to hear things at least 10 times before it sinks in. So hopefully, I don't know if I need to say it 6 more times, but you really, really need to prioritize self-care. Don't hesitate to seek help. Don't hesitate to seek support and these resources that are made available out there to ensure that you are taking care of yourself while caring for your loved one. So finally, let's talk a little bit about why is caregiving for a person living with Alzheimer's disease and related dementia so extraordinarily difficult and stressful? Why does it seem to be so much more difficult than caring for somebody that maybe has a health-related disease like you know, diabetes or maybe cancer. And here are the challenges that you face that other diseases don't present. It's the progressive nature of this disease. Alzheimer's disease and other forms of dementia are progressive conditions that worsen over time. As the disease advances, individuals may experience cognitive decline, memory loss, behavioral changes, and difficulties with daily tasks of living. So the caregivers often have to adapt to these changing needs of their loved ones or the people they're caring for, which can be emotionally taxing and physically demanding. I don't think there's any question about that. You're dealing with behavioral and psychological symptoms that other diseases don't present. People with dementia, as we know, may exhibit challenging behaviors such as agitation, aggression, wandering, having hallucinations, and of course sundowning, which is increased confusion and agitation in the late afternoon and evening. Sometimes it can happen at any time, but it's known— it's more commonly known to happen in the late afternoon and evening. And managing these behaviors can be difficult for all of the caregivers out there and may require Patience, understanding, and specialized strategies. And sometimes you don't know where to find another ounce of patience in your body. I totally relate to that. There are, of course, the communication challenges that we see in people living with Alzheimer's disease and dementia. And as we know, as the dementia progresses, individuals may have difficulty communicating their needs, their thoughts, and their feelings to you. This can lead to immense frustration and misunderstandings for both of you with dementia and the caregivers. You may need to develop new communication techniques to effectively interact with your cares. The caregiver role strain just in and of itself. Caregivers of individuals with Alzheimer's disease or dementia often take on multiple roles, including providing personal care, managing medications, coordinating their medical appointments, handling their finances, and ensuring that they're always safe. Balancing these responsibilities alongside other commitments can easily lead to caregiver burnout and stress. Then, of course, there's the social isolation aspect of caregiving. Caregiving for someone with dementia can be isolating. As many, many caregivers have limited time for their own social activities, their own hobbies, and for their own self-care. Feelings of loneliness and the lack of a support system absolutely can contribute to your stress and emotional strain. And then there's feelings of grief and loss. I hear this quite often, especially from family members. It's like you lose a person twice— once when they don't recognize you anymore, they've lost, um, themselves, and then upon their physical passing. So a lot of you are going to experience the grief process twice throughout this disease process. Witnessing the decline of a loved one with Alzheimer's disease or dementia can truly be emotionally painful for loved ones and for caregivers. The loss of the person they once knew, coupled with the challenges, the demanding challenges that go along with the caregiving role, can Obviously trigger feelings of grief, sadness, and helplessness. This is a given. You can't help it. But if you can find various ways of coping, then that can help. And then, you know, this is coming up again, the lack of help and support. Many of you don't have access to adequate support services or respite care. And of course, it's— that's a no-brainer that it can lead to exhaustion and burnout. Without regular breaks and support, you may struggle to maintain your own health and well-being. I don't think we need to keep harping on that because it is absolutely true. There's a financial strain put upon some of the caregivers. Caring for someone with Alzheimer's disease or dementia, as we know, can be extremely and sometimes prohibitively expensive for families, especially if the person requires specialized care and medications and/or home modifications. Caregivers may face financial strain due to increased expenses and the potential loss of income if they need to reduce their work hours or leave the job altogether to provide full-time care. Then the obvious physical demands of the caregiving role. Providing care for someone with dementia can physically be demanding, especially as the disease continues to progress. Tasks such as helping with personal hygiene, assisting with mobility, and managing the behaviors that can show up unannounced at any given time can prove to be physically exhausting for you. Even, especially if the person with dementia has mobility issues and also exhibits challenging behaviors. You have decision-making challenges. You may face difficult decisions regarding the care and treatment of your loved one with dementia. For example, medical interventions, end-of-life care, Long-term care options. Making decisions on behalf of someone with dementia can and is emotionally distressing and may lead to feelings of guilt or uncertainty. Are you doing the right thing? Are you making the right decision? That's a huge burden to put on somebody. So the best thing to do is find out ahead of time what— when the person is still of sound mind, what their wishes at the end of their life are. And then, of course, we have the good old stigma and misunderstanding about living with Alzheimer's disease and dementia. And believe it or not, well, you must already know, there is still stigma and misunderstanding surrounding Alzheimer's disease and dementia. No question about it. That can definitely impact you as caregivers and your loved ones and the person, the people that you're caring for. It may cause you to feel isolated or judged by others who do not understand the challenging demands of caring for someone with dementia and those too, can lead to feelings of frustration and loneliness. And then there's the long-term impact on you caregivers. The chronic stress of caregiving for someone with Alzheimer's or dementia day in and day out can definitely have long-term effects on the physical and mental health of all of you. You may be at higher risk for conditions such as depression, anxiety, sleep disturbances, and also the chronic health problems due to the ongoing stress and the demands of caregiving. You may lose your personal identity. There are complex healthcare needs in individuals with Alzheimer's disease. A lot of you feel guilt and self-blame, especially if you struggle to meet the needs of your loved one or the person you're caring for, or if they feel overwhelmed by— if you feel overwhelmed by your caregiving responsibilities. You may then start to second-guess yourself, to question your decisions, your actions, your abilities, leading to more emotional distress and self-doubt. There's also unpredictability and uncertainty. As we know, dementia is a progressive and unpredictable condition, and the symptoms and behaviors of individuals with dementia can change rapidly and also, as we know, unexpectedly. This unpredictability can make caregiving challenging and stressful, and you may need to be constantly adapting to new challenges and situations. And finally, there is the aspect of cultural and familial expectations. And some of us live with that just within our own cultural experiences of the expectations and demands that are expected of us just through our cultural practices. These are all bitter pills to swallow, I know, but They are real and they're— they exist and they're probably already a part of many of your lives. So I'm hoping that at least some of you will take what I've shared with you today very seriously and look into some resources that may be available to you that you weren't aware of or maybe were afraid to reach out to. Can make all the difference to your life and the quality that you can turn that into just by reaching out and, and connecting your— plugging yourself back into, um, something other than your current existence. So that's our show for today. I hope this has been helpful for you. I know you have just the toughest, toughest challenges ahead of you. And my heart goes out to every single one of you. And I hope you find solace in your caregiving role and that some of these things that I've shared with you today will help you get through this journey a little more easily. Okay, thanks for being here today. I'll be back next week with another new episode of the Truth Lies in Alzheimer's Show. I'm Lisa Skinner, your host, and I look forward to you joining me again next week. Have a great week. Bye-bye for now.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.