What Does Caregiver Mean? – The Caring Generation®
The Caring Generation® – Episode 42 June 10, 2020, On this caregiver radio program, Pamela D Wilson caregiving expert answers the question What Does Caregiver Mean and talks about elder care experiences. Guest, Dr. Martha Spencer talks about treatments for urinary incontinence. Dr. Spencer is the Division Head of geriatric medicine for Providence Health Care in Vancouver, Canada, where she runs a multidisciplinary continence clinic. She is also a clinical instructor in the Faculty of Medicine’s Division of Geriatric Medicine at the University of British Columbia and enjoys an active clinical practice in internal medicine and geriatric medicine at St. Paul’s Hospital.
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What Does Caregiver Mean Radio Program Transcript
00:04 Announcer: Caregiving can sometimes feel like an impossible struggle. Caregivers may be torn between taking care of loved ones and trying to maintain balance in life. The good news is, that it doesn’t have to be that way. The Caring Generation with host, Pamela D. Wilson, is here to focus on the conversation of caring. You’re not alone, in fact, you’re in exactly the right place to share stories and learn tips and resources to help you and your loved ones. So now, please welcome the host of The Caring Generation, Pamela D. Wilson.
00:48 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation Radio Program, coming to you live from the BBM Global Network, Channel 100, and TuneIn Radio. The Caring Generation focuses on conversations about health, well-being, caring for ourselves and loved ones, all tied together with humor and laughter that are essential to being a caregiver. On this program, I answer the caregiver question, “what does caregiver mean?” by looking at elder care experiences. We’re going to cover a lot of ground from, who is a caregiver? What are the skills that caregivers need? The important traits of caregivers, and the big one—why caregivers do what they do? Which is love, duty, and responsibility. In talking about elder care experiences, I’ll also answer caregiver questions about in-home caregivers. How to talk to elderly parents or spouses about needing a paid caregiver without totally upsetting them and our guest for this program is Dr. Martha Spencer, who will talk about urinary incontinence in the elderly.
02:02 Pamela D. Wilson: Dr. Spencer is the Division Head of Geriatric Medicine for Providence Health Care in Vancouver, Canada, where she runs a multi-disciplinary continence clinic. She is also a clinical instructor in the Faculty of Medicine’s Division of Geriatric Medicine at the University of British Columbia, and she enjoys an active clinical practice in internal medicine and geriatric medicine at St. Paul’s Hospital. She is a very, very busy woman. According to research by Franken and others, urinary incontinence is a neglected condition experienced by 43%-77% of nursing home residents, and up to 55% of elderly living in the community. People think that incontinence is something that happens with age. This is not always true. Because of this belief—a faulty belief—it may take a long time for the elderly to see a doctor. Other seniors feel embarrassed and may never see a doctor, which is a shame. There are serious health risks associated with being incontinent. These risks include an increase in falls, skin problems, including wounds, hospitalizations, nursing home admissions, and higher costs of care.
03:21 Pamela D. Wilson: In countries outside of the United States, like Canada and England, there are continence nurse specialists. Much like diabetic nurse educators that we have here in the United States for persons diagnosed with diabetes. Continence nurse specialists in Canada and England work with the elderly, who experience incontinence. Incontinence is definitely a diagnosis that requires more care time devoted by caregivers, and in some cases, it’s the reason that elderly parents or a spouse move permanently to a nursing home. So let’s return to our prior question and begin by answering the question, what does caregiver mean by starting with the question, who is a caregiver? A caregiver is any person—a family member or a professional—who cares for or interacts with a family member or a patient.
04:11 Pamela D. Wilson: We’ll take the idea of who is a caregiver one step further when we talk about elder care experiences and the roles of being a caregiver. What do you think? Can a housekeeper be considered a caregiver? What about a pharmacist? A bank teller? Does answering the question, what does caregiver mean, mean that anyone who helps the elderly is in some way a caregiver? I think so. It’s very possible. Family caregivers include spouses, sons, and daughters, and these days, even grandchildren. The number of caregivers in their 20s and 30s is growing exponentially. Then we have the non-family caregivers who work in the healthcare system—doctors, nurses, certified nursing assistants, therapists, other people working in hospitals, in medical offices, labs, testing centers, in-home caregiver companions, health aides, and others.
05:09 Pamela D. Wilson: The difference is that family caregivers are generally unpaid—no money. The non-family caregivers that I call professional caregivers are paid through the healthcare system, or they’re paid privately. Non-family caregivers extend to people working in the Aging Services Division of federal and local governments here in the United States—people like adult protective service workers and people working in the housing care industry. The housing industry includes apartment buildings for the elderly, assisted living, nursing homes, and memory care communities. Then we have the niche elder care professions that I fall into, care managers, court-appointed guardians, and professional fiduciaries who serve as a medical and financial power of attorney, personal representatives of the estate, and trustees, plus caregiving educators and speakers. As you can see, answering the question of what does a caregiver mean is a very broad answer.
06:08 Pamela D. Wilson: Looking at the broad range of elder care experiences, you might wonder, what skills are required? I’ll start by sharing skills related to activities of daily living, which most family caregivers these days perform. Then we’ll add medical care tasks that may be initially provided by professional caregivers that are being transferred to family caregivers. Because the home is becoming the new hospital. Family caregivers are performing medical care tasks originally provided in hospitals and nursing homes by skilled staff, by nurses. If you’ve been with me listening to this radio show over the past year, you might have listened to The Caring Generation radio show or my podcast, called Warning Signs: Activities of Daily Living. On this caregiver radio program, I talk in detail about all of the activities that the family caregivers perform. This show features an interview with Dr. Nicolaas Deutz about the importance of nutrition in helping elderly parents stay at home, which they very much want to do.
07:11 Pamela D. Wilson: Examples of activities of daily living that caregivers help with include the elder care experiences of helping with bathing, dressing, incontinence, which we’ll be talking about in a few minutes with Dr. Martha Spencer, feeding, meal preparation, help with mobility, walking, transfers, transportation, medication reminding, scheduling and attending doctor appointments, grocery shopping, errands, skincare, trimming fingernails and toenails. Honestly, is there anything that caregivers don’t do? This list of activities that family caregivers perform is truly never-ending. You know that if you’ve been a caregiver for some time. Some of these activities are also performed by in-home caregivers so that family caregivers can have a break or time away from feeling like they have to do everything. Being a family caregiver can turn into a 24/7 job. Many spousal caregivers never get any time off or even a break.
08:13 Pamela D. Wilson: We will continue our conversation about what does a caregiver mean and elder care experiences and how these relate to activities performed by professional caregivers in the second half of this show. Up next, we have Dr. Martha Spencer, a geriatrician, and clinical instructor from the University of British Columbia on the subject of managing urinary incontinence in older adults. Helpful information for caregivers is in my book, The Caregiving Trap: Solutions for Life’s Unexpected Changes. Information about my book, speaking engagements, and educational programs are on my website, www.PamelaDWilson.com. This is Pamela D. Wilson on The Caring Generation, live on the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me. We’ll be right back.
11:18 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation radio show for caregivers, live from the BBM Global Network, Channel 100, and TuneIn Radio. With us is Dr. Martha Spencer, Division Head of Geriatric Medicine for Providence Healthcare in Vancouver, Canada, and a clinical instructor in the Faculty of Medicine’s Division of Geriatric Medicine at the University of British Columbia. Dr. Spencer, welcome, and thank you for joining us.
11:47 Dr. Martha Spencer: Thank you, it’s a pleasure.
11:49 Pamela D. Wilson: So, a question for you. Why is urinary incontinence in the elderly so under-reported?
11:56 Dr. Martha Spencer: Well, to answer this question, I’m going to speak to what I learned are the three S’s, and this was taught to me by a very wise nurse continence advisor that I worked with a while ago. So the first S is that it’s a sensitive topic. So, many older adults really don’t see urinary incontinence as a medical condition and therefore, they may be embarrassed or perhaps unwilling to share this problem with a healthcare provider. The second S is it’s a secret. So, if you don’t ask—if the healthcare provider doesn’t ask—they often won’t tell. And so it’s very, very important that we’re really case-finding for patients with incontinence so that we find out that this is a problem for them, and that we let them know that there are treatment options available.
12:40 Dr. Martha Spencer: And the last S is that it’s a symptom. And it’s really up to us, as healthcare providers to find the diagnosis. We know that there are many different types of urinary incontinence, and it’s really important that we diagnose the correct type to actually know how to treat it. And as we’ll be discussing later, there are a lot of secondary causes of incontinence. Such as medical problems and medications that are important for us as healthcare providers to identify. So, I think it’s so important, again, for us as healthcare providers—and even for the general population—to reinforce the fact that urinary incontinence is not a normal part of aging. To empower people to come forward with the symptom that can be so detrimental to quality of life.
13:24 Pamela D. Wilson: What medical conditions and functional factors contribute to urinary incontinence?
13:30 Dr. Martha Spencer: So there are a number of medical factors that contribute. There are a number, firstly, of vascular conditions. So things like peripheral vascular disease, venous insufficiency, and congestive heart failure, which are very common in the older adult population. We also know that patients with diabetes have five times higher rates of overactive bladder than the general population. I think an important thing to note is that there are many central causes or conditions that affect the brain that are associated with incontinence. Such as stroke, Parkinson’s disease, and dementia. And we know that all patients with progressive dementia, such as Alzheimer’s disease, will eventually develop urinary incontinence. Because our brain—although we sometimes don’t think about it—plays a very large role in bladder control. And dementia will eventually affect the parts of our brain that control the bladder, leading to loss of bladder control. So it’s very important that we prepare caregivers for this reality and give them the resources to better, to help them manage better.
14:34 Dr. Martha Spencer: In terms of other medical problems, it’s actually well established that sleep-disordered breathing, also known as sleep apnea, is associated with urinary incontinence and importantly, diagnosing the condition and treating it with CPAP can actually make a very big difference in reducing incontinence or sometimes even curing it completely. And the same goes for obesity. So for those who are overweight, we know that losing even 10% of one’s body weight can result in up to a 50% reduction in incontinence episodes. When we think about functional causes of incontinence, these are causes of incontinence that exists outside of the bladder. So, this includes disorders of the brain, as I already alluded to, as well as problems with mobility that impair people from making it to the washroom in time, especially if they have urinary urgency. We can also consider problems with dexterity, such as osteoarthritis of the hands which can affect one’s ability to undress for toileting. And I always tell my patients with incontinence that pants with elastic waistbands really are their best friend.
15:40 Pamela D. Wilson: Wow. I’m amazed by the conditions that contribute. So how can a geriatrician play a role in helping the elderly manage urinary incontinence?
15:51 Dr. Martha Spencer: So we know that urinary incontinence is often managed by surgeons, either a urologist, urogynecologist, or gynecologist, depending on where you live, and they really do a great job of managing this condition. For older frailer patients, however, who might have a number of medical comorbidities and medications that can contribute, it is really important to consider a more medical approach to incontinence. Furthermore, many of the older adults I see may not want surgery or be good surgical candidates for types of incontinence that may require surgery. And so, considering all conservative and medical approaches is especially important for improving quality of life for these patients. It should also be noted though, that for one of the most common conditions that causes incontinence, known as overactive bladder, medical approaches are actually first and second-line treatments, and very, very few of these will ever need a procedure or surgery. So medical doctors should really feel empowered that treating overactive bladder—again one of the most common causes of incontinence—is something that they can do, and they can help their patients with.
17:00 Pamela D. Wilson: And so, we’re going to head out to a break, but is it usually a geriatrician that would refer somebody to a urologist, or is it vice versa? How does that work? Or how might that work?
17:12 Dr. Martha Spencer: We actually, [chuckle] ys that’s a great question. So, generally, I’m one of two geriatricians in Canada right now who kind of run a continence clinic and so, most continence clinics are run by surgeons. I know that here, myself and the surgeons refer back and forth patients. I may have patients who are interested in surgery and they there, they then may have patients who are frail who may benefit from a more medical view. So I think it really is a two-way street actually.
17:39 Pamela D. Wilson: Okay. So we are going to head out to a break. Listeners, we will continue our conversation with Dr. Martha Spencer from the University of British Columbia after this break. You can check out all of the best podcasts for caregivers on my website from these shows at www.PamelaDWilson.com. If you have folks that you know that wanted to listen tonight, this program will be available in about a week in podcast form on my website. You can go there, you can click on the Media tab and then The Caring Generation radio show and the drop-down will be there, you’ll be able to find the show. I’m Pamela D. Wilson, your host for The Caring Generation. You are with us live on the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me, we’ll be right back after this break.
20:39 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host, you’re listening to The Caring Generation, the favorite caregiving radio program for caregivers and aging adults, coming to you live from the BBM Global Network, Channel 100, and TuneIn Radio. We’re back to continue our conversation with Dr. Martha Spencer. So Dr. Spencer, explain the role of a nurse continence advisor because we do not have these here in the United States, and we need them.
21:04 Dr. Martha Spencer: I absolutely agree with you, Pamela. I’m shocked to hear that this division doesn’t exist in the United States. So nurse continence advisors are really invaluable in the care of older adults with incontinence. They are nurses who have specialized training in managing both urinary and fecal incontinence, and they have a special certification in that area, and I’m very fortunate to work alongside a nurse continence advisor in my continence clinic, and we both often see the same patients to help them with different aspects of their care. So she often helps educate patients on lifestyle interventions for managing continence such as fluid intake, proper toileting position, and product use as well as behavioral intervention, such as bladder retraining or trying to stretch out the time between your voids for those with urinary frequency and pelvic floor muscle exercises like Kegels.
21:53 Dr. Martha Spencer: She also does catheter and pessary insertion for those who need such intervention and additionally and importantly provides support for caregivers who are helping the older adult manage their incontinence and give them individualized coping strategies for that.
22:08 Pamela D. Wilson: So I know that medications can play a role in causing incontinence, which medications for the elderly are most likely to cause these types of issues?
22:17 Dr. Martha Spencer: Yes, I think there are probably more medications than we think of and ones that we use all the time. So firstly, there’s a number of common blood pressure medications that can contribute to urinary incontinence in select people. For example, ACE inhibitors like Ramipril, for example, can cause cough, so for those with stress incontinence or leaking with coughing, sneezing or lifting heavy objects, the cough can worsen their stress incontinence. Other blood pressure medicines, like calcium channel blockers, can cause the bladder to contract less. Sometimes leading to impaired bladder emptying and what we call overflow incontinence, and that’s when the bladder can’t hold any more urine. So it starts to overflow and cause leakage. And we know that calcium channel blockers can also cause leg edema, which can lead to nocturia or the act of having to get up multiple times at night to void. Lastly, diuretic medication—so what we call water pills—are used for blood pressure and congestive heart failure, and will make one produce more urine and therefore increase urinary frequency.
23:22 Dr. Martha Spencer: I think another important class of medications to consider are sedating medications, so things like Benzodiazepine, anti-psychotic medication, the Z drugs, which will make one very tired and therefore not wake up to the natural desire to void at night time, and this can lead to enuresis or bed-wetting, and also can increase the risk of falls when we do need to get up to urinate at night time. And the last class of medications I’ll mention are cholinesterase inhibitors like Aricept, and they are used for some patients with dementia. These can lead to increased bladder activity and urinary urgency or the need to rush to the washroom to get there in time. And as I mentioned earlier, those with dementia already have increased risk of incontinence. So it’s something important to consider if we are going to be starting that medication.
24:11 Pamela D. Wilson: Well, and on the subject of dementia, I have had elderly clients of mine that were prescribed Oxybutynin which seemed to cause more problems like falls, what’s the connection there?
24:22 Dr. Martha Spencer: Yes, a great question. So Oxybutynin is an anticholinergic medication, which is one of the two big classes of medication that we use to treat overactive bladder and that’s what overactive bladder being one of the most common causes of urinary incontinence. So Oxybutynin is one of the oldest anticholinergic medications for the bladder, and unfortunately, it’s not very bladder-specific. Meaning that it hits a lot of other receptors in the body and therefore can have effects on other organ systems. For example, it often causes very severe dry eyes and dry mouth, more than the other bladder anticholinergics. It can cause constipation and importantly, cognitive side effects such as delirium or acute confusion and dizziness, and so, therefore, the combination of effects on the central nervous system and the decreased vision due to eye dryness put people at increased risk of falls with Oxybutynin. So really, overall, there is good evidence to show that Oxybutynin should not be used in older adults. Especially because we now have better medication options, like newer anticholinergic drugs that are more specific for the bladder and a beta-3 agonist drug as well, which doesn’t have those same side effects.
25:35 Pamela D. Wilson: So let’s say my mom is incontinent and I want to bring her to you and your continence clinics, how do you diagnose this and what are the most common treatments for urinary incontinence in the elderly?
25:46 Dr. Martha Spencer: Great question. So most of the, the way that we diagnose urinary incontinence—the type of urinary incontinence—for the most part, is based on history. We know that people who have overactive bladder, it is associated with urinary urgency or the need to rush to get there in time. Those with stress incontinence—they leak when they cough or sneeze or lift heavy objects—and those with overflow incontinence, we usually find with the use of a bladder ultrasound. We also obviously screen for functional causes of incontinence that I mentioned earlier. And I think with older adults—particularly when we’re thinking about treatment—it’s very important to begin with non-pharmacological treatments like lifestyle and behavioral measures. Most of which I’ve already talked about. So lifestyle measures. Making sure that people are drinking six to eight cups of total fluid per day. Losing weight if they’re overweight. Using appropriate continence products and educating caregivers.
26:44 Dr. Martha Spencer: And the behavioral interventions include bladder retraining—so increasing the time between voids to help with urinary frequency and pelvic floor muscle exercises. And both of these interventions actually have very good evidence for use in older adults and are at least as effective, if not more effective than medication therapy. And we talked already about how important a nurse continence advisor is, but a pelvic floor physiotherapist—when available—to help instruct and give physical feedback to pelvic floor muscle exercises, is very important. And lastly, I’ll just say that, before I start medication interventions, I always try six to eight weeks of these non-pharmacological measures. Because some people will feel better and their quality of life will have improved enough that they might not want to even consider the medication. And for those who want additional benefits, we then have a conversation about either anticholinergic or beta-3 agonist medications for overactive bladder or perhaps surgical intervention for stress incontinence, if that’s the case.
27:47 Pamela D. Wilson: Oh, Dr. Spencer, you are a wealth of information. I so appreciate you joining us. The podcast of this show will be up in about a week. Listeners, up next, we are going to continue to talk more on the subject of, what does caregiver mean and elder care experiences. You can find helpful information for caregivers on my website at www.PamelaDWilson.com, including my caregiving blog, my library, videos, all the podcasts of this radio show, and other information. I’m Pamela D. Wilson, your host. You’re listening to The Caring Generation, live on the BBM Global Network, channel 100, and TuneIn radio. Stay with me. We’ll be right back after this break.
30:42 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation radio program for caregivers and aging adults, coming to you live from the BBM Global Network, Channel 100, and TuneIn radio. The Caring Generation focuses on the conversation of caring, giving us permission to talk about aging, the challenges of caregiving, health, incontinence tonight, and everything in between. Let’s continue by answering the question, what does caregiver mean, and elder care experiences as they relate to professional caregivers in the healthcare system. Doctors, nurses, and persons working in hospitals, assisted living communities, care agencies, professional fiduciaries. The skills of these professionals—in many cases—are supported by professional credentials and some level of advanced education and training. Depending on the care setting, some have very specialized experience. Like performing open-heart surgery or repairing hip fractures. Some have other experience, like discharging your elderly parents from hospitals or managing day-to-day care.
31:48 Pamela D. Wilson: You may hear these specialties referred to by healthcare professionals as silos. If you think of a grain silo as a tower that holds grain, you can more easily relate this idea to a healthcare silo. The answer to what does caregiver mean is that in healthcare, a silo can be a hospital system or doctor’s offices or care communities. As you might imagine, the experience and skills that relate to each of these types of care—it’s very different. The challenge for family caregivers in working with the healthcare system, or silos, is that many family caregivers believe that a person from one system understands all of the complexities from another system. This is so not true. Elder care experiences are very different. A faulty belief is that one system should know the inner workings of another system, and that can cause frustration for family caregivers. When you think about the answer to what does caregiver mean, beyond the idea of caring, the answer is very different for family caregivers and professional caregivers. Family caregivers have greater exposure to elder care experiences because, family caregivers, you have to learn and do it all.
33:06 Pamela D. Wilson: This is why all caregivers, family caregivers or professionals, benefit from caregiver education and training. The challenge to what does caregiver mean is that caregivers have to be aware that caregiving education and training exists and have a desire to learn. Let’s talk about caregiver burnout and how this results in high levels of stress and caregivers being less open-minded to increasing knowledge about elder care experiences. Think about how you feel when you’re exhausted. If you’re like me, all you want to do is crawl into bed and sleep and get some rest. Other days might be somewhere in the middle. Caregivers who are exhausted or burned out can be distracted at work or at home. For example, being less productive in crossing those items off that to-do list that never seems to get shorter, only longer. We don’t want the answer to, what does caregiver mean, to be exhausted and burned out.
34:05 Pamela D. Wilson: We’ve all been exhausted. But we may not realize this as a caregiver, that when we’re burned out, we’re less effective, more distracted, and the quality of our work or care for our elderly parents, it’s not very good if we’re being honest. Add to days of burnout or exhaustion when we as the caregiver might not be feeling well. Maybe we’re operating at 50% of normal. We may be at work or be present, but not—we’re not really all there. If this exhaustion and not feeling well affects our work, how do you think it affects the work of healthcare professionals who also experience a very high level of burnout. Do you think burned-out healthcare professionals are providing the best care for your elderly parents? Probably not. And if not, what do you think about you being a less than effective caregiver for an elderly parent? Are poor elder care experiences for you okay, but not for healthcare system workers? This is an idea that leads us to what does caregiver mean for traits and elder care experiences that make a good caregiver?
35:14 Pamela D. Wilson: Caregivers benefit from having unlimited patience. A lot of compassion and extreme empathy. These traits though have pluses and minuses for eldercare experiences. As caregivers, we want to be kind. We also want to help elderly parents do as much as they can for themselves. But this is an area where being too helpful takes away the opportunities of elders to remain independent and self-sufficient. Other good qualities and traits of caregivers are dependability. This is especially important for family caregivers and paid in-home caregivers in all areas of life. If we say that we are going to complete a task or follow-through, we should. It’s a matter of keeping our word. Honesty, trustworthiness, and good character are other caregiver traits that deliver positive elder care experiences for parents. What does caregiver mean? It means having positive traits and doing the best we can to help elderly parents. This takes us to the why, which is the most important. Most caregivers are in this role because we care and we want to make a positive difference.
36:23 Pamela D. Wilson: Family caregivers: children, husbands, wives, love a spouse, love an elderly parent. Professional caregivers also have a love for the elderly. Our personal experiences in families and other elder care experiences make us good caregivers. Some family members and professional caregivers though shouldn’t be caregivers because they don’t love the daily tasks that it takes to be caring and they don’t have patience. What does caregiver mean? It means love. Love for the elderly and wanting to make that positive difference. Professional caregivers work long hours and some work in very crazy and unusual situations. For them, the reward of a smile or a thank you from a patient or a client is what keeps them coming back to work day after day. Let’s talk about caregiving roles for the question of what does caregiver mean? The idea of roles crosses over between family and professional caregivers. A significant number of professional caregivers who work all day in healthcare offices and other types of work, go home at night and spend time on the weekends caring for family members. These professionals are called in research double-duty or triple-duty caregivers.
37:39 Pamela D. Wilson: Working family caregivers do the same. We work all day. Go home to care for young children, elderly parents, maybe a spouse. This is exactly why being a caregiver can feel exhausting. Because the roles and responsibilities and elder care experiences cross into all areas of our life. After this break, we are going to continue to talk about caregiving roles and responsibilities in hiring in-home caregivers, which is a difficult subject. Many times when caregivers bring up the subject of help to a spouse or to elderly parents, a lot of hesitation happens. Parents will refuse. A spouse will refuse because they really don’t understand the effect that caregiving is having on a husband or a wife on adult children. And so we’re going to talk about how to have these conversations with elderly parents so that the information is presented well and may actually be received better so that instead of a no, you get a yes.
38:37 Pamela D. Wilson: This is Pamela D. Wilson caregiving expert, author, and speaker on the Caring Generation live from the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me, we’ll be right back after this break.
41:08 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. This is the Caring Generation coming to you live from the BBM Global Network, Channel 100, and TuneIn radio. We’re back to talk about caregiving roles and responsibilities, and what does caregiver mean. How many family members prefer to say that they are a son, daughter, husband, or wife, instead of being called by the term caregiver. This difference in terminology and wording is the reason that many caregivers don’t seek help or support. While many caregivers readily accept elder care responsibilities—burnout and exhaustion happen as the tasks and time grow as elderly parents need more care. Earlier in the program, we talked about activities of daily living and tasks, to answer the question, what does a caregiver mean? At times, a husband or a wife will tell me that they feel more like a caregiver instead of that spouse.
42:05 Pamela D. Wilson: This statement happens when marital or parental roles start to change. Adult children will start taking on more of a parental role with aging parents. A caregiving spouse may feel like a healthcare coordinator or an advocate. These changing elder care experiences are why hiring paid caregivers can become a very important support for the caregiver and the person who needs care. Marital or child relationships and elder care experiences change in scope when the family caregiver makes a choice to become that nurse, housekeeper, cook, a gardener, a driver, a scheduler of appointments, the arranger of medications, the laundry person, an advocate, the person who pays the bills, and the person who works so that the bills can be paid.
42:57 Pamela D. Wilson: Elder care experiences are all-encompassing. For this reason, asking for help—which research confirms that women caregivers hesitate to do—is even more important. Research confirms that male caregivers are more open to the idea of hiring care assistance because they realize the importance of being able to focus and keep a job, so that they can help elderly parents and in some cases pay for care.
43:23 Pamela D. Wilson: What does caregiver mean? For many women, that question, what does caregiver mean, results in women giving up careers and jobs to become a full-time caregiver without thinking about the long-term effects. Women caregivers can suffer financially later in life because they don’t have enough retirement savings, and they can’t afford to pay for care because of time out of the workplace. For women—and this is my soapbox—what does caregiver mean should not mean that women give up being self-sufficient providers for themselves. What does caregiver mean includes investigating and learning about other options for care. What does caregiver mean? It can mean hiring help to come into the home. Help could be an in-home caregiver. It could be a housekeeper, a care manager, somebody to do the yard work. What does caregiver mean? It means being okay with the idea of needing help and taking the step to hire help.
44:22 Pamela D. Wilson: So the question, where do you find in-home caregivers? The majority of in-home caregivers work for what’s called non-medical care agencies. You can do a Google search for non-medical home-care agency and then type in the city where you live. So, for example, for me here, it would be “non-medical home-care agency, Denver, Colorado.” And then, all of a sudden, you’ll see a list of agencies that will pop up. In thinking about hiring a non-medical home-care agency, you want to think about your needs and ask what does caregiver mean to you. Elder care experiences vary. Make a list of what does caregiver mean to you, so that you have a task list to talk about with the care agency. The more specific you can be, the easier it will be to find the perfect caregiver. Think of working with a care agency and hiring a caregiver like you would if you were hiring an employee at work.
45:18 Pamela D. Wilson: On my website, I have an article about questions to ask care agencies and caregivers when you are looking to hire them. I’ll put a link in the transcript for this program so that you have this information. You can use it when interviewing care agencies. But keep in mind that what does caregiver mean places you, the family caregiver, in the position of being an expert about the person who needs care—mom, dad, a spouse. Elder care experiences include training non-medical home-care agency caregivers that you hire. You never want to assume that a caregiver has been trained by the care agency. This does not always happen. Your job, when you hire, is to talk to the caregivers about the work that you want completed. You can explain how you prefer a task to be completed. Add some special tips about how to interact and get along with your spouse or elderly parent, because sometimes it can be a little rough, especially on the first day.
46:14 Pamela D. Wilson: If you’re an elderly adult hiring for yourself, you become the hiring manager, choosing the person and directing the caregiver as to how you want tasks completed. The idea behind what does caregiver mean is the idea of giving the caregiver a break from all of the work to avoid caregiver burnout and exhaustion. Because then, as a result, you have more energy to devote to the care of a loved one when you have some time off. Let’s talk about the money part of what does caregiver mean? As a family caregiver, you are considered to be unpaid. There are some programs that can reimburse. Medicaid—it’s a low-income program. You can contact your state Medicaid office and ask about Cash and Counseling, ask about Consumer Directed Care, ask about the Personal Care Service Waiver program, sometimes it’s called HCBS. Each program has specific requirements. For non-medical in-home care agencies, the cost for what does caregiver mean could be anywhere from $12 to $30 an hour, depending on the type of assistance, frequency, and the state where you live. The best situation for non-medical in-home care agencies and families is the idea of setting a regular schedule.
47:25 Pamela D. Wilson: So for example, Monday, Wednesday, Friday, from 1:00 to 4:00—you’re more likely to get the same caregiver. The benefit to you is a regular person who becomes familiar with everything that you want done, your preferences, and a person that your parent knows. If you can’t commit to that regular schedule, having the same person may be unlikely. The downside is that you as a caregiver will have to train and retrain every time a new person shows up. Which is not ideal. We’ll talk about how to talk to elderly parents and spouses about the idea of hiring a non-medical in-home caregiver after this break. Next week, our subject is self-care for the caregiver. Our guest is going to be Dr. Christopher Crnich, who will talk about antibiotic use in older adults. Helpful information for caregivers is in my caregiving program, Taking Care of Elderly Parents: Stay At Home And Beyond. If your company doesn’t offer elder care programs, it’s time to start asking. I’m Pamela D. Wilson, caregiving expert, author, and speaker. This is The Caring Generation, live from the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me. We’ll be right back after this break.
51:52 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert, I’m your host. This is The Caring Generation radio program for caregivers and aging adults, live on the BBM Global Network Channel 100 and TuneIn Radio. We’re back to answer the question to follow up what does caregiver mean and relate this to elder care experiences. Where we talk to elderly parents or spouses about the idea of bringing in outside care, which sometimes gets shut down. If you have attempted to have this conversation and it didn’t work out, let me share a few ideas. One of the first objections for what does caregiver mean is that this statement to an elderly parent means nobody else but you. Which is unrealistic and fair. So if we take that objection off the table, being the primary and only caregiver is really a recipe for burnout and illness.
52:38 Pamela D. Wilson: Objection two for what does caregiver mean is that as a trap, you as a caregiver have likely fallen into this because you keep doing everything. You might say, “Oh, it’s okay, I can do it, I don’t need any help,” or your elderly parent says, “Oh, honey, I don’t need any help.” It’s an exercise in everybody trying to maintain their self-esteem and not want to admit that they need help and needing help is a good thing. It’s just that our elderly parents sometimes don’t want to pay for that help because you, my caregiving child, are free. So if you think about the statements, “I don’t need any help. I don’t want any help.” The reality is—and you know this—your parent needs help. But the person who really needs help is you. So what you say to mom or dad is, “Mom and dad, I understand you don’t need or want any help, I’m the person who needs help. Which is why I’m bringing up the subject of hiring a caregiver.” When you bring it up, though be prepared. Have brochures, information, costs from several agencies. Be ready to move forward in the event that your elderly parent disagrees, most likely the first time they won’t agree.
53:38 Pamela D. Wilson: Another objection, “I don’t want strangers in the house.” My response to this one is, “I need the help, and as soon as we meet the caregiver, you know what? He or she won’t be a stranger anymore.” The other idea is to talk about in-home care before a lot of care is needed. If you just start with maybe three hours or four hours one day a week, you can then add hours or days as you need them. Having that established relationship with the care agency makes it so much easier to add another day here and another day here. And a lot of parents are still going to object. But you can say, “Mom or dad, I want to be prepared about this. I want to have a backup plan in case something unexpected happens like the coronavirus.”
54:20 Pamela D. Wilson: If you need more help—you can name a health condition. Their high blood pressure, their diabetes, and instead of rushing around in a crisis like most caregivers do, you’ll have a plan in place. What does caregiver mean? It means everything. It means having the skills to do whatever it takes. Including asking for, hiring help, and managing health. What does caregiver mean includes having the right traits and the why, which is a lot of love. Add to this managing all the different roles that might have you feeling like that cook or housekeeper instead of that husband, wife, daughter, or son. What does caregiver mean? It means making sure that you get the help before you burn out. Even if your loved one initially refuses. You’ll be glad that you did.
55:01 Pamela D. Wilson: If you have ideas for future radio programs, visit my website, www.PamelaDWilson.com. Go to the contact page. You can send me an email. You can follow me on Facebook, my page is PamelaDWilson.page or you can join my caregiving group, it’s called the Caregiving Trap. Share the Caring Generation with your family, friends, and everybody that you know. One in four people you know are caregivers. Thank you all for being family and professional caregivers and for being with us this evening. Remember, join your family, your friends, co-workers to listen to the podcast after the show and to try to join us every Wednesday on The Caring Generation radio program for caregivers and aging adults live here from the BBM Global Network Channel 100 and TuneIn Radio. I’m Pamela D. Wilson, caregiving expert, advocate, and speaker. God bless you all. Caregivers, thank you for everything that you do. Sleep well tonight, and have a fabulous day tomorrow, and a great week until we are together again.
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Looking For Answers to Common Caregiving Questions? More articles and tips are in my Caring for Aging Parents Blog.