AS:026 Who Cares for the Caregivers?

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So welcome listeners. Thanks in so much for tuning in to this episode of the Accessibility Solutions podcast. I am so very thrilled this week to have Deborah Greenhut with me. And Deborah has a talk title called Who Cares for the caregivers. She is an award winning author of The Hoarder's Wife. Doctor Deborah Greenhut speaks on a difficult subject in Family Mental Health. Deborah speaks from personal experience and research to improve caregivers quality of life. Deborah will bring her care and commitment to a passionate keynote or retreat to serve your group. As a frequent family caregiver, Deborah is a sought after interview guest in a highly regarded facilitator of writing and goal setting workshops. And I personally am so glad to have Deborah as my guest on the Accessibility Solutions podcast because as my listeners, I am a person with a disability and I could not live the life that I live without the support of my caregivers, either my pay caregivers or my family caregivers. And so I'm gonna, you know, kind of turn over to Deborah to talk about the importance of those caregivers having their support system behind them and making sure that the caregivers are looked after so do such important role that they play in the lives of persons with disabilities and being a caregiver, so welcome to the show Deborah. And please just give us your insight into the importance of caring for the caregivers.

Thank you, Linda. I have, as you mentioned, been a caregiver, a family caregiver several times in my life and I should also mention that I'm living with a chronic disease which blossomed during one of my first caregiving episodes. I have diabetes type 2, and yet very often my family has called on me to be the caregiver. Now, for many of us, it's a labor of love. But unfortunately often, for quite a high percentage of the elderly caregivers, this will become an early ending to their lives. It was a pretty serious concern. And while we love our family, we also need to love ourselves. So that's one of the fundamental principles that I like to advocate for. There are about 55 million caregivers in the United States right now, family caregivers and we represent the largest healthcare company in the US. And most of us are not paid, though you may have heard about the drain on finances of family caregivers at times particularly if family won't help the caregiver or if the caregiver can't find available resources from the social safety net. Often the caregivers' finances are ruined because they must contribute to the support of the person you're caring for. So my deepest concern is that we try to realign this in some way and it will probably take a collaboration of government and people to figure out what are the solutions. I do know that some caregivers will be paid now and I think that's a wonderful improvement in the situation. But very often it's not just the money and I know I started there, but it's not simply the money that suffers for caregivers or the financial condition, but rather their own pursuit of happiness and their well-being also can suffer with what becomes for some of us at 24: 7, 365 drain. And having looked at the faces of family members who say, oh no, I can't help you, I have to say this is where a lot of the problem comes in. Though I'm delighted to hear that you have a very supportive family around you. That's tremendously helpful. And I'm hoping to hear more of that in the future. But right now I hear from people everyday who are doing it alone and know that they are beginning to deteriorate in terms of health and finances, lack of personal time and social isolation. So I'll give you one really shocking statistic that, I'm seventy one right now. And I read that people in their 70s who do caregiving are 70% more likely to die before the people they care for. Because that's the point when often burden of care really heats up as people become older. And yet so much of this is disproportionately falling on female family members, either the wife or the elder daughter typically. So that's the thing I think we have to be concerned about. So I'm a little worried and that's why I'm here. I'm very grateful to you to give me this moment to speak about it. I'd like to know what it is specifically. I could tell you that would help you, help your audience know more.

Well, totally, I think it just resonated with me that caregivers are the largest healthcare providers in the country. And, I mean, we're in Canada, but it's no different in Canada, the United States.

And you're right, we, the government, funds home care, which is, you know, there's a critical shortage of paid caregivers and so much of the care and support that a person with a disability or a senior requires ends up falling to the family. To be able to do that, as I was explaining, just prior to the start of our interview. In my case, I've had MS for 25 years. I'm now in a power wheelchair, but when I was first diagnosed with MS, I mean, that one needed a caregiver, but it's been very much over the last 25 years, a family disease. My daughter was 10 months old and my son was 5 when I was diagnosed so they grew up in an environment over the last 25 years,

they're now, you know, 26 and 31, where, you know, Mom has always had a disability. And the disability progression for somebody with MS, is not so much that you wake up one morning and you're in a wheelchair. So we've had that whole as a family adapting to, you know, first of all, we needed to, you know, adapt to watch them in the house. Then we had to put a stair lift in the house. Then, you know, I'm gonna say probably, about 17 years ago, I needed to have paid caregivers come in to help me get dressed in the morning. And at that point, I still worked full time. You know, so my family all along, you know, we're talking about young children, you know, teenagers, that kind of thing have always been, you know, in that situation where in our house, It's been very much a caregiving environment and I really resonated with what you said about a lot of caregivers potentially passing away before the person that they care for. And so my husband who's been, you know, my primary caregiver, he's five years older than me and we do know that women live longer than men. So it could very well be a situation, you know, hopefully, not in the near future, but it certainly could be a situation for me that I would lose, you know, not only my husband but my primary caregiver, while I'm still alive. I mean, I have a chronic disease that I will have to live with and deal with for the rest of my life, but I couldn't do anything on a daily basis without the assistance of caregivers, whether that be my husband, or paid caregivers that I have. And so, what I think society does not realize, or as you said, what governments don't realize, is the need for that unpaid, basically it's an unpaid healthcare service, to be recognized for what it is. You know, in Canada, it's exactly the same. I can hire somebody that I don't know to come in and be a caregiver and get paid and yet my husband or my daughter or my son who have technically been in that role for, you know, the past mostly, 15 to 20 years since my disability progressed, have been doing that in an unpaid role for all that time. And, yeah, I agree there's something wrong with it. You're right. Whether it's, you know, for example I can't put myself to bed at night. That means that if my husband does go fishing once a year, you know, we have to bring in a paid caregiver that can help put me to bed at night. And yet that's one week a year, so the other, you know, 358 days a year, you know, he has to do it, and, and he doesn't get paid for it. So, yeah, there's something wrong with that picture. I wanna turn back to the work that you do in terms of, like, who cares for the caregiver. And let's discuss a little bit about the, I call it caregiver burn because certainly, especially if you're caring for a spouse that has, you know, dementia or something like that and say you've been married for 50 years. You know, you're changing that whole dynamic of your relationship and it'll be very exhausting. I know, I watched that with my parents. My mom has significant health challenges. My dad, you know, in his late 60s became the primary caregiver for my mom.

You know, that's often about when it happens, actually, resonates with that. My parents were a doctor and a nurse, and toward the end of their lives, they were caring for one another. My mother died at my age, and my father died a few months later at age eighty. So, I became my father's caregiver. I had been trying to help my mother, who was a very fierce, proud person who was gonna do this by herself. Cause she was a nurse, was suffering from emphysema and a variety of other airway types of diseases, and she carried around two oxygen tanks all the time and a walker. And yet she didn't wanna give up any of the role of being my father's wife, my mother, and all of those things she wanted to do. So, I think she exhausted herself because my father had some. He was bipolar, depressive, in addition to having had numerous heart attacks. So between the two of them, they both needed caregivers. And unfortunately, they were too proud to accept that kind of help. And after my mother died suddenly on Thanksgiving morning one day, my father just called me, and I moved in with him. And just the staggering amount of work my mother was doing because they didn't close his office for various reasons, even though he had her medicine. I took on all of the hats that she was wearing and uncritically, this, we have to fix this. And I suddenly very much like my mother in terms of trying to do it all. And I will tell you, I couldn't stop. It was, I don't know, how it was able to do it, but it is that stress factor that really creates the problem and the conditions people who are caregivers tend to suffer from, or heart disease or hypertension or diabetes. That was at the moment when I was becoming clinically detectable as a diabetic and after my father passed away just a couple of months after he had a massive heart attack. And I went to the doctor a few months later and I said, I'm still tired. I'm still exhausted. I don't know, I just don't have any energy. So I had the test and there I found out that I was diabetic myself. And the spiral there is just now so predictable. We can see it happening when people don't have a team of caregivers. So you and your husband have done the right thing by having help, besides trying to do all this by yourself. And I think many caregivers are like, my parents were too proud to ask for help or perhaps can't afford it because it is very expensive to hire a paid caregiver. And we, that's my concern. So my role, I think in all of this is to help caregivers assess their current well being and look at the things they're not able to do. That would take away the stress, and that may mean hiring someone else, or it may mean carving out some time with some family assistance. Do those kinds of quality of life goals that make your life meaningful and worth living, so guess we could call that the pursuit of happiness.

Yeah, I totally agree. I mean, I can tell you, my mom was a nurse, my dad was a mechanic, but my dad ended up being primary caregiver to my mom. And my mom, was saying very proudly, was a nurse, was actually a geriatric nurse, so she had worked in, you know, retirement in long term care homes so she was certainly aware of, you know, the toll that those kinds of things would take on a caregiver. But I don't think either of them ever thought, you know, we need to hire somebody. And in the end, my mom, she was on dialysis and the clinic that she had to go to every other day for four hours was 30 minutes away. And my mom never drove, so basically from the time that my dad retired, he spent 30 minutes away, 4 hours, you know, 5 hours every other day, just taking my mom to dialysis. I mean, you know, this is you forget any rest, but time or time to do anything of your own, which is, it was just so very, for me, it was so very unfortunate for my parents because they both worked so hard, their whole lives, and never really enjoyed their retirement because of my mom's health issues. And, you know, my dad understandably was lost after my mom passed, but my mom wasn't even gone a year, and my dad was diagnosed with terminal cancer, and lasted a month after his diagnosis. So, you know, here I'm the oldest daughter, and at that point was dealing with my own disability progression. But, you know, just from a family perspective. I mean, we did, we were very supportive but, you know, it just goes to show that, you know, that concept of, you know, you work so hard all your life so that hopefully you can enjoy, you know, you're, what my mom used to say, whoever called it the golden years, what they were talking about, because all of the things that come with the golden years, the health challenges, the needing to be a caregiver, the, you know, all of that kind of stuff just consumed their lives. After my mom was diagnosed with kidney disease. And, you know, it was just very much that became their full time job. I mean, you know, if it wasn't that they were dealing with the fact that my mom had to go every other day for treatments. You know there were the doctor's appointments and there was all of that kind of stuff that went along with that. All I can say is that in the end, I'm just, you know, that's a terrible thing to say, but I honestly don't know how either one of them would have dealt with my dad being diagnosed with cancer while my mom was still alive because in that case, it would have been both of them dealing with such a significant health issue. And, you know, I could just see my mom just trying to pitch in and be, you know, they've been trying to be caregivers for each other. And, you know, that just wouldn't have been realistic and so the other thing that I think it's really important is to understand that the relationship that a caregiver has with the person that they're caring for is so very important and what happens when the healthcare system lets us down. We'll say, I actually had a neighbor who was caring for her elderly husband and was paying a paid caregiver to come in, but the agency would continually send someone different. So every time a different caregiver showed up, she had to basically try to train them to do what they were supposed to do, and the reason that they were coming in was to give her a break, to give her some rest. But, that didn't happen. So what ended up happening is that she basically decided that it wasn't worth it. It wasn't worth it to have this paid caregiver coming in with no consistency. It's so important for someone that's receiving care to have that consistent care, and, you know, the person that's coming in and what time they're coming, so that caregiver can get that much needed break that they need. And so that's another, I know I'm sure it's the same in the US. There's a shortage of paid caregivers who should get very little under any kind of government program. And then you know, the expectation that the family will just somehow pick up the slack. Yeah, it's just such a burden on everybody. And, you know, as you said, we, you know, you end up with the stress of all of that changing the dynamic in a relationship and whether it's a daughter as she said, looking after your parents even that changes the dynamic in a relationship, right? These are your parents, but now you're looking after them after they raised you. Anyway, I just, you know I think we could talk for hours. This is a topic that's just so very near and dear to my heart and the work that I do and, and the life that I live as a person with a disability. So, before we wrap up Deborah, just any kind of last thoughts, on caring for the caregiver. I think your messages are so vital for people to understand.

I thank you. I think that movement toward, aging at, in place at home is wonderful philosophical inspiration. However, I'm really concerned that this is a way of saving money and not ultimately going to benefit either on that diet in terms of caregiver or care recipient. So we really need to think this through and try to create a reward instead of a punishment structure to take care of this huge social concern. We can't ignore it anymore, especially with the baby generation. So I sincerely hope that programs like yours and other discussions that we can have are going to advance the topic so that we can make some good choices about how to improve the quality of life for everybody, not just caregivers.

Oh yeah, and I, that whole concept of aging in place which is where people want to be, they don't want to have to go to long term care or retirement home or that kind of thing. But again, the government needs to recognize that it requires the appropriate funding for those supports and services to be there for people. So that could be a whole discussion for another day. But I wanna thank you again so much for joining us, Deborah. If you've listened to the podcast and something that Deborah and I have discussed today resonates with you, or it's a topic that you'd like to share with somebody, please leave us a review, share the podcast with the people that you feel might be interested. This is a topic that I believe touches so many people out there in our population. Deborah's contact information will be in the show notes and, until next time, thank you again for listening to the Accessibility Solutions podcast, and until next time, cheers!

Thank you.

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