Coping with Alzheimer's Disease and Dementia: Challenges for Family & Caregivers

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. Welcome back to another brand new episode of The Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and family members definitely struggle with having a family member and/or caring for a family member living with Alzheimer's disease and related dementia. So I thought a good thing to talk about today would be what they actually struggle with the most when dealing with dementia. So one of the very difficult aspects of Going through this journey with a loved one is the emotional distress that it brings on. Watching a loved one's mental faculties decline can definitely be emotionally distressing for family members. What family members may experience are feelings of grief, helplessness, frustration, and sadness as they witness the changes, the ongoing and progressive changes in their loved ones. There are inevitably communication difficulties because dementia can affect a person's ability to communicate effectively, leading to misunderstandings, confusion, and frustration for both the individual with dementia and their family members. This also includes caregivers in the mix as well. We see a lot of behavioral changes with dementia. People with dementia may exhibit, and often do, changes in behavior. We see aggression, we see agitation, we see wandering, and we see paranoia. Family members can struggle to manage these behaviors and to ensure the safety and well-being of their loved one. I mean, that's a lot to deal with. One of the challenges that is difficult and awkward for family members is the role reversal that they may find themselves in with family members living with dementia. They may find themselves in the position of becoming caregivers for their loved one with dementia, which can lead to a significant shift in roles and responsibilities within the family. I have seen this frequently over the years with husbands and wives and also adult children with feeling that, okay, this is my mom, this is my dad. And now I'm taking care of them. So it can be not only frustrating, but very awkward. There are, of course, the financial and legal issues. Managing the financial and legal affairs of a person with dementia can be complex and overwhelming for the family members. They may need to navigate issues such as arranging for long-term care. Making decisions about property and assets, and ensuring that their loved one's wishes are respected. And then there's taking time for yourself as a family member and/or a caregiver, because we know that family members and caregivers often neglect their own well-being while caring for a loved one with dementia. But it's so important for y'all to prioritize self-care and seek support from other family members, from friends, or support groups to prevent burnout and maintain your own health and well-being. And especially so you don't feel like the burden is completely on you. And then, of course, There's navigating our healthcare system. Just understanding the healthcare system, coordinating care, advocating for your loved one with dementia can be so challenging for family members. You may need to communicate with healthcare providers and make difficult decisions about treatment options and ensure that your loved one is receiving the appropriate care and support. So what are some of the other challenges that family members tell me that they run right into the brick wall over? Some of the feedback is the social isolation that comes with caring for a loved one with Alzheimer's disease, because it can be extremely time-consuming. Consuming, and as a lot of you probably have already discovered, emotionally draining, which can obviously lead to social isolation. And for any family caregiver or caregiver in general, they may find it difficult to maintain relationships with friends and participate in social activities. And that can surely impact the mental health and well-being of those folks. There's the guilt and self-blame that comes with the role. Family members may experience feelings of guilt and self-blame, questioning whether they're doing enough to help their loved one with dementia. They may also feel guilty about experiencing negative emotions such as frustration or resentment toward the person with dementia. And one of the things that I've seen pretty consistently over the years is family members feel compelled to want to fix their loved one and do everything that they can, whether it's, you know, intentionally or consciously, for them to be okay, for them to be better, for them to be back the way they were before they developed the disease. There's a lot of decision-making, and that can feel very overwhelming, especially in choosing a care facility. Again, that guilt tends to play a huge role because a lot of us feel— and I've been in this position myself— that we're letting our parents down or we're going against their wishes, even though we realize it just might be the best environment for them. It's, it's especially with living with dementia. So making end-of-life decisions is a difficult thing. Managing financial matters. These Decisions can take emotional tolls on everybody and may lead to conflict among family members. Boy, have I seen that. Uh, you can feel a loss of your own identity. You may struggle, um, with that as you prioritize the needs of your loved one with dementia. You may feel overwhelmed by the caregiving responsibilities and lose sight of your own goals. Your own interests, your own aspirations. You may, as a result, suffer from physical health issues because of the toll that this role is taking on you, um, leading to issues such as fatigue and sleep disturbances and chronic health conditions. It's so important for caregivers and family members to prioritize their own health and well-being to prevent caregiver burnout. And then there is uncertainty about the future. We've talked about this before. This is a long course to go through with a person living with Alzheimer's disease or related dementia. The average is 4 to 8 years. My grandmother lived with her dementia for 20 years after we noticed the symptoms when they became obvious. And I've even heard of people living with it longer. So even if it's just the 4-year or the 8-year, that's still a very, very, very long time to live with them with this day in and day out and all the challenges that you're faced on a day-to-day basis. Family members and caregivers without a doubt may feel anxious and uncertain about the future as they witness the progression of their loved one's dementia. They may worry about how they will continue to provide care, to make important decisions, and cope with the challenges that lie ahead. And then finding support. You may find it very difficult to access support and resources that you'll need to care for your loved one with dementia. This could be due to financial constraints, lack of awareness about available services, or difficulty navigating your healthcare system. So having a support network is really important. To, um, to have in your back pocket so you're not feeling like you're doing this alone and you can get a break once in a while. So what are some of the options out there, resources that are available to you for avoiding these challenges that, uh, will come up? Because trust me, it takes a village. So one of the other obstacles is in balancing caregiving with some of your other responsibilities. You might find it challenging to balance your caregiving responsibilities with other obligations that are part of your life, such as work, parenting, household chores. You may find yourself needing to juggle so many balls in the air with multiple roles and responsibilities, leading to feelings of overwhelm and stress that can turn into terrible resentment and guilt. You may experience feelings of resentment or guilt towards your loved one, your other family members who you don't feel are helping you out.. And it just festers. Resentment may arise from the significant demands placed on the caregiver and the impact of their own life and well-being. Coping with the grief and the loss that accompany losing your loved one. It's like you have to go, you have to experience losing them twice with this disease. Once as they progress through the stages of the disease where they no longer recognize you, they may have regressed back to a past time in their life. So you've lost the person that you once knew, and then eventually when they pass, that could be devastating. So what are some resources that are available to everybody who is in this situation? Well, you could reach out to a local organization such as the Alzheimer's Association, senior centers, community health services. Inquire about support services available for caregivers of individuals with dementia. They are out there. These organizations often provide information, resources, support groups, and educational programs for you. Talk to your healthcare team involved in the care of a person with dementia, and this includes your doctors, nurses, social workers, and therapists. They can offer you guidance on available support services, caregiver resources, medical interventions that may help improve the quality of life for both the caregiver and the person with dementia. Consider joining a support group for caregivers of individuals with dementia. Support groups can provide tremendous emotional support, uh, practical advice, and a sense of community with others who are going through similar experiences. These groups, you can find them in person, and they also are online. They're on Facebook. And please look into respite care for your family member as temporary relief, uh, for the caregiver. Respite care services can give caregivers a much-needed break from their caregiving responsibilities, give them a chance to recharge, allowing them to reset while ensuring that their loved one is in safe and supportive hands. There are caregiving training programs, and you might want to think about participating in one that offers education on dementia, communication strategies, stress management techniques, and sophisticated caregiving skills. These programs can definitely help caregivers develop the knowledge and skills needed to provide effective care for their loved one with dementia. It's really learning a new language. There are professional caregiving services out there, such as home care agencies, residential care facilities. These can all provide assistance with daily tasks, personal care, and medical needs. Professional caregivers can offer support and relief for family members who may be feeling overwhelmed by their caregiving responsibilities. And again, please prioritize your own self-care. Make your self-care a priority and take time for yourself. I know that you're probably thinking as I'm saying this, well, that's easier said than done. But engaging in activities that bring you joy and relaxation and seeking support from friends and family members are essential for maintaining your own health and well-being as a caregiver. So I hope this has been very, very helpful for for any of you who are in this role today and going along in this journey with your loved one. If you're caregiving for somebody that lives with dementia, or if you end up in this role, these are all really, really important things to be prepared for, to plan for, and to know about. So that sums up our episode for today. I hope this has provided you with some really helpful and eye-opening information, and, uh, that some of you have already been able to resonate with everything that I have, um, mentioned today. So thanks again for being here. I appreciate you taking the time out of your busy schedules to listen to me. And next week, of course, we'll bring you another new episode of the Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and have a great week. And I am off to do a TED Talk. Yes, I'm heading out for Canada today, as a matter of fact. I will be doing my very first TED Talk on Saturday. So stay tuned. We will keep you up to date on when that will be available for you to download on YouTube. So I'm really excited. I will be giving a talk about living with Alzheimer's and dementia. I think all of you would find it really interesting. And so I'm looking forward to being able to share that with you. So have a great week. And I'll talk to you next week. Thanks for being here. Bye-bye.

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.