Hope for living, loving, and caring with no regrets!

Self-care is Self-preservation

Episode 108

Rayna Neises, ACC, host, reflects on the topics covered during last week’s interview (107) with Nancy Poland. Rayna shares some additional learnings from Nancy’s second book, Remarkable Caregiving, where she interviewed six family caregivers and told their stories. In addition, Rayna provides supporting data that family caregivers are not alone.

  • Caregivers can get their strength from and learn from the person for whom they are caring.
  • When you are only focused on the things to do, you miss the relationship.
  • If you do not have or do not know your “Why”, it is time to figure it out.
  • Some statistics provided in 2020:
      • Approximately 53 million Americans were providing unpaid care for relatives or friends.
      • The average age of caregivers was 49.3 years old, showing that it is not only spouses caring for one another later in life.
      • Over half, 61% of caregivers, are employed in addition to caregiving.
      • The average age of those being cared for is 68.9 years old.
      • A large percentage, 89% of the care recipients, are related to their caregivers by blood or marriage.
      • Family caregivers offer an average of 23.7 hours per week and even more if the person they care for lives with them.
  • Let Rayna know what you need from her and in future podcasts. She wants to offer hope and would love to hear from you. Visit aseasonofcaring.com/podcast and click on the microphone to leave her a voicemail.


*Transcript is an actual recount of the live conversation


[00:00:00] Rayna Neises: I was hoping for a formula common traits or consistent personality types that turned these everyday people into remarkable human beings.” Nancy Poland in her interviews with six families who were caregivers shares that it wasn’t one formula, but rather it was love that motivated all these families.

[00:00:22] Hi, this is Rayna Neises with A Seasonal Caring Podcast where there’s hope for living loving and caring with no regrets. And today we’re going to visit more about Nancy Poland’s book as well as some interesting facts about caregivers, I hope you’ll find yourself in some of this information and you’ll find it encouraging. 

[00:00:42] So, as I mentioned earlier, Nancy R. Poland was our guest on podcast 1 0 7. Nancy is the author of two books. She cared for her dad who suffered from Lewy Body Dementia so her first book covered their story called Dancing with Lewy. Her second book though, I just finished reading. And it is called Remarkable Caregiving. And it’s where she took the opportunity to interview six different families who were caregivers in different roles. So more caring for aging parents. Some were caring for children with disabilities. Others were actually friends who found themselves in a caregiver role as well as some non-traditional caregiving roles. So very interesting information. And I do encourage you to pick up her book. I think knowing we are not alone in this journey has a deep impact on our ability to be resilient and to really do our best as caregivers. So that’s my goal today for you to know you’re not on this journey alone. 

[00:01:43] In Remarkable Caregiving, Nancy interviewed six different families about their caregiving experience. I’m just going to highlight a few of them that really stood out to me. For example, Carol and Landon cared for their disabled son and offered just a lot of insight in to how they raised him to be very independent, even though he had these disabilities. And I love the fact that at the end of their interview, Nancy asked them a question, where did you get your strength during your caregiving experience? And Carol said from Buddy, their son. He offered us hope and resilience all the way through. And I think that is so amazing. To realize that we really can gain from the person that we’re caring for, that, which we need to continue caring. 

[00:02:29] Also, she shared the story of Cynthia and Cynthia was a long distance caregiver for both of her parents. And I really appreciated something as story, because I know so many of you find yourselves in situations where you’re not living with the person you’re caring for. And so it can be difficult sometimes to put on that caregiver hat, but I really love Cynthia’s story of how she really explained what it was like to be a long distance caregiver. And she also did an amazing job of just sharing how challenging it was to be so far away from her parents that she was trying to care for. She learned so much and much of what she had no idea she needed to know. So I think that’s such a true statement for all of us as caregivers.

[00:03:13] The one that really landed for me was Sandra. Sandra cared for her dad who had Parkinson’s disease. She eventually moved him into the home with her and her husband. And that brought a lot of changes to her life. 

[00:03:26] I just really appreciated as she was sharing her story. That she went from the point in which her dad was independent all the way to the end, where she brought in hospice and shared her experience and just really gave an open honest account of what it was like to find herself in that caregiving role. 

[00:03:46] And at the very end, Nancy ask her, would you do it again? And she said, totally, her dad enriched their lives in so many ways and made it better. So she wouldn’t trade her caregiving experience for anything. I think on our good days, we would all say that, our bad days, we might not feel quite that way, but we know feelings will come and go. Right?

[00:04:07] As caregivers, we have to remember our why . As a coach, I’m oftentimes asking people, why are you doing this? Why is this important to you? We can forget that in the thick of every day. In fact, I found a quote from Teepa Snow that said it’s about relationships, not about getting things done.

[00:04:28] And when we forget the relationship we have with the person that we’re caring for, we often begin to develop those negative feelings, those resentments, those feelings of being taken advantage of when we don’t focus on the relationship, but rather on all the things that there are to do. So just keep that in mind as well.

[00:04:48] As you’re in this journey, that it really is worth it because of your why. I don’t know exactly what your, why is, but I think just like Nancy found in interviewing these six families, it really has to do with love and how we’re living out that love for the person that we’re caring for. So remember when you have those hard days to think about what the alternatives are..

[00:05:16] If you don’t have a why that is keeping you connected to your loved one, then maybe it is time to do something different elder abuse is real. And it happens when people are burnt out and they’re not caring for themselves. I spend a lot of time on the podcast talking about self-care. And that is because it is so crucial.

[00:05:40] If we don’t take time to take care of ourselves, we eventually get worn out to a point that we aren’t worth caring being a caregiver because we don’t have the reserves to do that. So. I think holding onto your why helps to develop your resilience. It helps you to stay motivated even when things are hard, but you have to continue to care for yourself in order to make it through the entire journey with the person that you’re caring for.

[00:06:05] So I hope that you take an opportunity to just pick up this book to hear other caregivers experiences. I just think it helps us to realize we’re not the only ones we also can learn from those that are farther down the path. And all of these caregivers have lost their loved one already. And so they have wisdom to share with you. I encourage you to pick up again, Remarkable Caregiving by Nancy, R. Poland. 

[00:06:28] Now let’s just talk about caregivers. I found some really interesting research about caregivers. I find it fascinating to learn what the whole United States looks like and caregiving and the roles that they’re playing so i’m going to share some of those interesting facts with you today. 

[00:06:45] I

[00:06:45] Is it possibly you aren’t, as unusual as you think you are. Caregiving is a lonely journey. It really can be. And the statistics I have, or a couple of years old now, but definitely we all know 2020 was a year. And so that’s when this information came out was in 22, 20, 20 50 3 million Americans are providing unpaid care for relatives or friends.

[00:07:11] 42 million of the caregivers are looking after people who are age 50 or older. So caregiving situations, they definitely vary widely, but there are a few trends and. They’re definitely worth kind of considering just so you see where you fall, 53 million caregivers. You’re not alone out there. There are so many of you that are doing this important, important work. 61% are female. 39% are male. I think that number is rising, that the males are finding themselves in those caregiving roles.

[00:07:50] The average age of the caregiver is 49.4 and ethnically 61% are non-Hispanic or white 17% are latin X or Hispanic, 14% are non-Hispanic African-American or black 5% are Asian, Pacific Islanders, and 3% are racially ethically including multicultural.

[00:08:15] So I find that really interesting that the number is so high of non-Hispanic whites, but I also know that this information has been taken off a report from the National Alliance for Caregiving and AARP Public Policy Institute so as with all surveys, You report the data from the people who answered the survey.

[00:08:39] I’m not sure that those numbers are truly representative of people who are caregiving, but they are representative of those who are self identifying as caregivers and were surveyed. So also the marital status, 54% are married. A 21% are single, never been married, 8% divorced, 7% living with a partner and 4% widowed.

[00:09:05] Caregivers employment status 61% are employed. 39% are not employed. Wow. 61%. I think that one surprises me a little bit. I’d be curious to know out of our listeners, how many of you are employed and probably the difference between full-time employment and part-time, I can see where your employment becomes more and more difficult just depending on the situation of your caregiving. I found that a very interesting statistic.

[00:09:33] And then the number of care recipients, 76% are caring for one adults. 24% are caring for two or more adults. Why are these statistics interesting? Hmm, great question. I would say that.

[00:09:51] I think it’s interesting to realize again, you’re not the only one. We find so many times that maybe our neighbors not in the same boat, we are, maybe our friends are not there yet, or have been there and are out of this caregiving but realizing that there are so many others who are in the season, they just aren’t in your immediate life. I think can be really helpful. 

[00:10:14] Also realizing if you’re a man and you’re in a caregiving role, you are not alone. You are not alone and you need the support and understanding of how important your job is just as much as everyone else. So if you know a man who is caring for his wife or someone else, encourage them to listen to the podcast, to find the support that they need, whatever that looks like.

[00:10:40] I know in most of my support groups that I lead. There are very few men that are apart and it’s not because they don’t need the support. I just don’t know if they know that it’s available or more than likely they don’t identify as a caregiver so they aren’t finding the support because they don’t realize they need it.

[00:11:01] I also think this information is interesting to realize the average age of a caregiver. Many times people think of someone caring for someone caring for a spouse whose health is failing or a sibling. But, we have a lower age than that and we are finding that the younger generations are actually stepping into caregiving roles as family caregivers at a higher rate than many others. So just keep in mind that caregivers are both young and old and right in between.

[00:11:33] You might not be finding someone again in your immediate pair group, peer group that is in this season of life. There are a lot of them out there. I also find the fact that most caregivers are employed. Something that most people don’t realize, either my interaction with support groups and people who are caring is they’re struggling with carrying a job and the caregiving roles.

[00:11:58] We often can be confused that they are representative of all caregivers, but I think they’re the caregivers who are struggling the most and are needing the support in a different way. But those who are working and juggling both caring for their own household, their career, and their loved one, find themselves with less time and possibly seeking less support.

[00:12:22] And that is what I’m trying to speak to in my coaching because I do feel like coaching one-on-one can be extremely helpful for those people who find themselves employed because they don’t have a lot of time to find their own resources to recreate the wheel, as we say. So looking for different kinds of support, depending on where you find yourself, if you’re a long distance caregiver, you are still a caregiver. And finding that support that you need in the season that you’re in, I think is really important. So understanding again, just the average caregiver, these statistics, I think can be really helpful. This report went on to share the demographics of the care recipient. 61% of the people who were needing care were actually female as well. I found that really interesting that this numbers were the same. Majority of the people who need the care are female. 39% are male. The average age. 46% of the care recipients are 75 or older. And so we do find that the older population, which we know is growing. Are the ones that are needing more care and caregivers are providing more care for them.

[00:13:40] The average age of a, of a person receiving care was actually 68.9 and the care recipient relationship, 89% of the care recipients are really are related to their caregivers by blood or marriage. So majority of. 89% are those that are stepping in because they’re married or they’re a child or an aunt or whatever.

[00:14:05] Those family ties are very tight. Care recipients, relationships to their caregiver, 42% they were caring for their parent. 12% was a spouse or partner. 8% was apparent in law. 8% was a grandparent or grandparent in law and 7% was a sibling or sibling in law. So those relationships are really important. And we do find that we’re stepping in as family members. 

[00:14:29] As far as a living situation, 26% of care recipients live alone. So much of the support is coming in ways to support them to stay in their own home. And remember, those are coming from helping them with their activities of daily living and that those activities are being required to have others to support them in order to be able to stay at home.

[00:14:53] The main reasons in this survey for recipients needing care, 16% classified, it is just old age, 12% was mobility issues. 11% was Alzheimer’s or dementia, 6% cancer, 6% surgery or wound care, 5% mental illness by percent stroke, 4% diabetes, 4% from feeble or falling and 3% blindness or vision loss.

[00:15:22] So definitely as the age, these are all typical ailments that our older population is dealing with. And so these family members are coming in to support. Does this sound like? I’m not sure. Again, if you find comfort in understanding that you are one of many, but I think it can be really helpful. One last fact, I went in to bring out from the research, which is what a family caregivers do.

[00:15:47] And they’re saying that an average of 23.7 hours of care each week is what the average family caregiver is offering to the person they’re caring for those numbers go up substantially for those who care for recipients that live with them. Making caregiving equivalent to a full-time job, almost 37 hours a week.

[00:16:06] And family caregivers help seniors with a variety of tasks that really fall within different areas. So as we mentioned those instrumental activities really have to do with activities of daily living. Those are the activities that help them to live independently in the community. And so those activities of daily living can definitely be providing transportation assistance with grocery shopping, helping with housework meal preparation.

[00:16:34] Really, those are kind of the things that begin 99% of family caregivers provide that type of help. And then it continues to progress as they find themselves needing additional help in other areas with toileting, showering, hygiene, those types of things. As we think about family caregivers, you and others, like you, I would love to be able to open up a conversation where I could hear what you need to learn more about. As I considered Nancy’s book with the interviews of the six family caregivers, the people that I’m able to support in support groups and those that I coach, I love to learn more about what you need and this podcast is about your needs.

[00:17:18] I really do want to offer you the hope that you need to live a good life to love, all of those in your life well, and to care to the best of your ability. And I think all of those things are important and I want to be able to offer that support to you. I would love to hear from you.

[00:17:35] So I set up a way for you to offer your suggestions via voicemail, it’s really simple. Just visit my website www.aseasonofcaring.com/podcast , and you’ll find, “leave a message,” just click the mic and you can talk right there.

[00:17:51] So to wrap it up for today, don’t forget to check out Nancy R Poland’s book “Remarkable Caregiving” and to leave me a message about what type of content you would like to hear on A Season of Caring Podcast by visiting www.aseasonofcaring.com/podcast. Click on the little microphone and leave me a voicemail. I look forward to hearing from you.

[00:18:12] Thanks again for joining me. And just a reminder, A Seasonal Caring Podcast is created for the encouragement of family caregivers. If you have financial, legal or medical questions, be sure to consult your local professionals and take heart in your season of caring.

*Transcript is an actual recount of the live conversation

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Meet Your Host

Rayna Neises, ACC

An ICF Certified Coach, Author of No Regrets:  Hope for Your Caregiving Season, Podcaster, & Speaker, offering encouragement, support, and resources to those who are in a Season of Caring for Aging Parents.

Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected.

Rayna Neises

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