Episode 161 – Katherine Summers: From the Heart

 

Florida native Katherine Summers stumbled into her career as a paid caregiver.  She had some time on her hands, and friends from her childhood began asking if she could check in on their aging parents.  Katherine found she liked being around the elders, and caring for them came naturally to her.  So she decided to take classes in Alzheimer’s and dementia care and work as a caregiver professionally, first through an agency and then independently.  For the past six years she’s cared exclusively for two people who live together: a cancer patient and his mother who has dementia. Katherine tells us how she acts as a buffer between her two fragile clients and what she’s learned from over a decade of caring for other peoples’ family members.  She provides tips for finding reliable in-home care, she talks about coming to terms with clients who die and tells us how she counsels family members who are confused about what’s going on with their elderly loved ones.  Whether you’re thinking about hiring a home health aide or are just curious to know how a high-quality caregiver manages her job, this interview with a seasoned pro is for you.

 

INTERVIEW TRANSCRIPT:

JANA PANARITES (HOST) – Happy Valentine’s Day, everyone! Wait– isn’t every day Valentine’s Day for folks on the receiving end of quality care? I’m talking about the love caregivers express every day through their dedication to family members and friends. Caring for someone can be rewarding, so oftentimes the love goes both ways. But this Valentine’s Day is for you caregivers. You’re the ones who keep it all together, every day of the year. So hearts and hugs from the studio in South Florida. Today we’re chatting with professional caregiver, Katherine Summers.

JANA:  Katherine, why don’t you tell us a little bit about your personal background, and evolution into the work that you’re doing now?

KATHERINE: I am a Miami resident. I’m from here.

JANA: You’re from Miami?

KATHERINE: Yes. I moved there when I was about six months old, or my family did, and I’ve lived in Florida my whole life with the exception of accepting positions out of state. I worked for a major Fortune 500-type company in Chicago for 15 years, and then in Atlanta for 30 in sales and marketing, which was a carryover from my Chicago position. And then I felt a need to somehow just come back home, be close to my family. My sister and her husband and their adult children were out in West Palm. So I moved here to be close to them and to renew roots that we had and it’s been very, very rewarding. I’ve loved living in this area.

JANA:  At the point that you moved back where your parents still alive?

KATHERINE: No, my parents passed away a long, long time ago. My Dad died when he was 63 and my mother died when she was about 34, there was an accident so… but I’ve always felt close the elderly and I was devoted to my grandmother and I found that I had a natural affinity for working in this field of home care. And I evolved into that because when I moved here, my girlfriends had parents here and they asked me if I’d check on them. Would I take them to the doctor, what I feel their cars with gas, would I take them to the movies. And of course knowing them going all the way back to my teens, I was a family member to these adult parents. And that’s how I got into it. I thought if I could help them and be comfortable around my girlfriends’ aging parents that perhaps I could do that with some other folks too who needed it.

JANA: Were you doing other work? Was this something you did on the side or…

KATHERINE: No, when I returned to Florida, I pretty much was not engaged in anything special. I did manage a gift boutique on Palm Beach for a couple of years for a family business and then they decided not to go forward with that business. They changed their goals, and that’s when my lady friends said could I please start all this checking on their parents. And I was walking down the street one day and I saw a home care agency and I just went in and I said, here’s what I do. I’m not a medical person. And they said, we’d love to have you. We do companion care. And out of that came the 12 or 15 years that I’ve been doing this.

JANA: So the place that you went into, was that in West Palm Beach also?

KATHERINE: Yes, it was in West Palm. All of my home care has been in West Palm Beach.

JANA:  So you basically went on to their roles as it were, as an available person. What did you know about home health care agencies at all up to that point?

KATHERINE:  I would say that I was not totally aware because there hadn’t been a need so far. I hadn’t become immersed into this field. The home care agency I went to was strictly companion care, so they introduced me to the field very steadily. I took classes in Alzheimer’s and dementia. I went out on accounts of like-minded individuals, people that I went to see where generally business people that had retired in Florida and they were looking for home care that would parallel their prior interests. For example, one person I worked with, we’d go over the stock market reports every morning.

JANA:  And is this someone who was elderly and had dementia or just elderly?

KATHERINE:  Had dementia or Alzheimer’s. By the end of the time that I worked with him, he didn’t even know which state he was in anymore. So over the four years, we went from stock market reports to almost infantile care.

JANA:  And was he widowed?

KATHERINE:  He was a bachelor. His family was down here checking on him from time to time, and it was just another avenue that I could be of help. But I was sent there by the agency to be the companion in that setting.

JANA:  And then how long were you with the agency before you left?

KATHERINE:  I was pretty much with them about six years, seven years?

JANA:  Oh, that’s a long time.

KATHERINE:  Yes. And they sold the franchise and retired and then I found that I was getting calls from word-of-mouth and I’ve found that I still like doing this and that’s what led me into some of the, uh, the other accounts that I’ve taken on.

JANA:  So what is the age range of folks that you serve? And how many accounts, or clients I guess you would say, do you have now?

KATHERINE:  I am working right now with one cancer patient. He’s in his early seventies. He lives with his dementiad, 94-year-old mother. So my skill set has been to assist him in his setting, but to primarily use my specialty in Alzheimer’s and dementia to be the kind, caring person that his mother needs.

JANA:  So you’re really serving two clients, then.

KATHERINE:  Correct. And I want to say why I call them accounts. I have to set up a little bit of a barrier between how I can become so attached. So when I’m speaking off the record or away or like this, sometimes “the account” is a little bit easier for me to refer to because it doesn’t place so much emphasis on their being as close, on a client setting, if that makes sense. It’s just hard. I also have an extensive sales and marketing background and that always was: clients’ accounts, units, things like that. So, so it slips out a little bit sometimes. My average age is in the eighties or seventies, up to I think the oldest was 95 and she passed two and a half years ago. So it’s generally a pretty advanced state of a person who is going to need my abilities. It’s still companion care. So that’s, that’s pretty much what I’ve specialized in.

JANA:  So you only have one account now. How many did you have like in the last few months?

KATHERINE:  Oh, I have been exclusive with this one account. In the years past, I’ve worked with as many as four to six in a week. So I have, by choice, and the fact that these two may need help at a moment’s notice… I have not committed to other business accounts and clients at this time. I’ve actually turned down two or three offers in the last week because I didn’t want them to conflict with who I’m helping right now. And that’s very much a part of a home care situation by someone who cares. When you take on somebody, you generally want to stay with them if it’s a fit. If you’re comfortable and they’re comfortable, you want to stay with them.

JANA:  And how long have you been with them?

KATHERINE:  I’ve been with him six years.

JANA:  Six years, with him. Okay. So obviously you’re not going to name names, but can you tell us what a typical day is like for you? You’re serving the needs of two people. And how many days a week do you see these folks?

KATHERINE:  I have been primarily with him and his mother on an as needed basis. When he takes his VA treatments for chemotherapy, that’s the type of illness he has, then I will go in the home and spend the whole day with his mother because she can’t be left alone. So for example, this week I spent two solid days because he had the chemotherapy, and then his mother was highly agitated and a little bit in an anxiety state because the son was away. I may get a grocery list request, so I will run and do that to accommodate their needs. Pretty much I’ve limited myself just to working with those two clients.

JANA:  So when he’s there, he’s caring for her, but when he can’t be there, you’re caring for her.

KATHERINE:  Correct.

JANA:  And sometimes you’re caring for him?

KATHERINE:  Yes.

JANA:  What sort of cancer does he have?

KATHERINE:  He has lymphoma, and it spread all the way through to a significant portion of his body. And he’s been taking chemotherapy for the whole entire six years. So they’re keeping it at bay. It’s a very, a interesting situation because they are very tied to each other. The mother is a widower and the son has been with her the whole time since the father passed. So we’ll have to see what this unveils and becomes down the road because they really don’t know what to do without each other at this point.

JANA:  Oh Gosh.

KATHERINE:  It’s a little tough.

JANA:  Yeah. Physically, what is her condition? You’ve said she has dementia, but…

KATHERINE:  She has dementia, but physically she’s fine. It’s amazing. And the son has an absolutely clear and focused mind, but his body is in very poor shape. So that’s how they manage. He manages the bills and the household and then she’s just there with him, gealthy but not able to really communicate very effectively.

JANA:  Are any other family members involved in their care, or in communicating with them? What’s their family dynamic like?

KATHERINE:  There isn’t anyone that’s left nearby. They do have family up to coast. They work and her family has all passed away. So any aunts or uncles or brothers, sisters are no longer living. And this goes back to caregiving situation– that very often down here in South Florida, you’ll find family members who may or may not have relatives, who may or may not even be in state. And then again, the burden on home care and home care care becomes very pronounced on folks like myself.

JANA:  What are the hardest things for you, about what you do?

KATHERINE:  I was going to say that it is assumed if you’re in this field you have a ton of patience. That comes with the job description if you will. So it must naturally be part of the fact that you can go and slow yourself down to work around people that aren’t well. But I would think the number one factor that’s worked for me has been adaptability, because when I go to the home– and this is over 10 or 15 years now doing it– the client that I left the day before could be completely different than the client I come back to the next morning or later that evening.

By that I mean you may have been giving them standard foods and juices and taking them out, and then suddenly the next day these are all problems for them. The wind, the motion of the car, getting in and out– they no longer can do that. This is especially so in dementia. So I find that I have to… it’s not me how I thought the day was going to go, it’s how is their day going and then I have to fix my agenda and be helpful to them in this new mode that they’ve grown into or progressed to.

JANA:  Is she on medication?

KATHERINE:  Just mostly a very mild antidepressant. What you find with the elderly, Jana, is that very often their conditions are layered. By the time they’ve lived long enough, they have maybe obesity, diabetes, early or adult onset. They may have slipped discs, they may have and usually do have some sort of heart condition. So the medications that might normally be prescribed in a person that doesn’t have these other conditions would not apply to somebody who could have a serious side effect. And that’s what I’ve found.

For example, she can’t take the heavier Alzheimer’s prescription drugs because they might affect her heart. Consequently, she’s up at night, she’s on a high agitation schedule. She sundowns in the afternoon. She doesn’t even recognize her own son sitting there. She’ll ask, who are you? And that gets back to my care. I come over and talk to him and sit with them and I provide that buffer. I distract them both from the very tight situation they have due to their mutual illnesses.

JANA:  Do you spend the night there with them as well?

KATHERINE:  No, the only time I spent the night is when he became very ill and the VA hospital admitted him. And then again she couldn’t be left alone and I did stay over a couple of nights in a row till he could get back home from his treatment side effects. There is live-in care as you know, and I have done that in the past, but I found that you’re never really off the clock. You’ve always got one eye open while you’re sleeping, so that you really don’t have any overnight time to yourself to sleep. And that’s particularly true of the description of live-in care. You’re supposed to be there during the day and sleep through the night. Well, no, there is a responsible caregiver that’s going to fall heavily asleep while somebody in the next room is not well. 

The quality of care I wish to provide is at such a level– and I do want to say that, for me, for the type of way I relate– that I want to always be able to be giving and there, especially for the two clients I’m working with now. So overnight care is a serious commitment and so far I haven’t needed to do that. Now I will say that the mother has told me if anything happens to me, I want you to move in here and take care of my son. And the son has told me if anything happens to me, I want you to make sure you take care of my mom. So I would say this door is open. [laughs]

In agency work, I never was required to be involved with two people at once. So I don’t know how that might be handled away from what I’ve been doing with this particular family, but I do see it as something that probably I might be more involved with if one or the other is not with us in the future. Dementia individuals do not take well to strangers. This is the exact problem with this 94-year-old a mother, is that we’ve had other agencies or licensed people go by.

She didn’t really need them, but it never worked out because she can become a little belligerent due to her disease. She can become a little aggressive if she’s agitated and she doesn’t understand the words “this is only just for a few hours.” So I’m really on-call to this family and that’s why I have not generally taken on a lot of other work. I’ve offered on several calls to me to be a substitute, or if the person they’re currently using is sick, I may not be able to take a full time position. I just– a lady on Palm beach needed somebody coincidentally, but she needed two solid days and Jana, I just didn’t feel that that would be fair to somebody else I’ve been with for six years, that if I did agree to the time they might need me more in the cancer patient and the dementia family setting.

So you have to make choices if you really want to do the right thing within an impaired family member or friend or, in my case, too my sister was very sick, and I had to drop everything for three years to take care of her because of the same situation: a lack of interaction with strangers, lots of hospice, scheduling doctor’s appointments. It was very demanding. And I was able to work in the cancer family and his dementiad mother around my sister, but that was all I was able to do, was that one setting, because I was so committed to the family that I had been with. And my sister’s disease came out of nowhere, but she could not be abandoned either. So I had my hands full.

JANA:  What was her disease, if we can talk about that a little bit?

KATHERINE:  She had endometrial cancer. It’s one of the few that there’s absolutely no cure for. It’s hard to explain. You cannot even guess where it comes from. And it took about two and a half years from start to finish for it to run its course. And during that time I was with her, I moved in once for nine weeks into her home. So you have to be dedicated, you have to really love and care for the people you’re with when you’re trying to help them. And also you need to step back. If my sister– and she did need RNs and hospice care– but if I were to be in a home and I realized that greater nursing care or another form of nursing care was needed, you would need to defer to that. So you always have to be prepared for your clients or a family member to progress perhaps beyond what you’re used to being able to help them with.

JANA:  So you probably have an action plan for the folks that you’re caring for now, because you have to think about those things, right?

KATHERINE:  I do. And I really care about these two that I’m working with because they care about each other so much. So that when you walk in, even though you know the mother’s going to go over her youth and her upbringing again and the son is going to be relegated to a chair with his pain meds, you want to give them a high quality experience. And that’s again, what I like to pride myself on. I like to be in a mode where I’m truly helping and giving them comfort in these times.

JANA:  I don’t know what the prognosis would be for someone with lymphoma, but there’s a part of me that, from what you’ve said about their relationship, that feels that each of them was helping to keep the other one alive. There’s a such a symbiosis that goes on between, you know, two people like that. I wonder what you think about idea?

KATHERINE:  I agree with you 100% in this case. And again, it comes back to companion care. I was with the mother yesterday and she’s almost stopped eating, which is normal for the progression of her disease. The doctors have informed the son of this. But I made her a very small plate, a sandwich late in the day, and she ate a portion of it, the most minuscule part. And I said to her, if you don’t eat, you’re going to die. You have to eat to stay alive because your son loves you so much.

And then I picked up the son from the VA and he said to me, I don’t know how much more of this I can take. This was the hardest one yet in terms of the chemotherapy concoction they gave him. And I said, but if you stop, then you won’t be able to stay and take care of your mother. So the role that a caregiver who’s really involved plays is crucia,l because then they… it’s not that they’re going to change massively, they’re still very ill, but you have given them a boost to go, oh yes. Oh yes, that’s right. And that’s how I spent my afternoon was lifting them both up, I felt.

JANA:  Wow. I think that, you know for, I’m a baby boomer and I think you’re probably in that same age range, and for many of us we’ve probably had an experience at bedside or with somebody who’s dying and most of us are just clueless about what to say and what to do. I wonder if you could offer any thoughts on how to deal with someone who is dying, let alone a close relative like your sister.

KATHERINE:  I have been with two to three clients that have passed at the time of their passing, prior to this actually being in my family, with my sister. It’s not going to be easy. Because I think with people and family you care about, you keep hoping something will change, it’s not real. And yes, my sister progressively went into hospice. She was in a hospice hospital wing at the actual passing. Those resources are wonderful, as we all know. I think that my joy and my happiness came from the fact that I did as much as a person could do for all those people, both my clients and my sister. I gave up a lot of time, hobbies, other work opportunities because I knew that our time would be limited.

There was a lady I took care of in Lantana– 95– and she became pain-ridden and hospice came in to help. And hospice was very adamant that who had ever been around her– that would be me, the caregiver– stay to give comfort and some normalcy to the person’s last days. And I felt that I did that as well as I could. I’m always sad to see bright, capable, full-lived individuals pass, because it just leaves a big hole. But if you can at least feel that you did as much as you could, whether you’re a family member donating your time, whether the task of being with someone very sick falls to you because you don’t have other relatives nearby or because work schedules, family schedules don’t permit a lot of aid. I think the best you can do is be with that person for as long as you can and hold them up. Talk to them, encourage them, remind them of the fun you had and how much you love them. That’s what got me through the several that I had to actually be at the bedside for.

JANA:  When you first had to do that, were you scared? Do you remember the first time you had to do that?

KATHERINE:  I wasn’t exactly scared. I didn’t know the process. Unless someone absolutely passes alone in their own home or somewhere, and your caught off guard. But if you’re actually with them as a caregiver– and with all of this, including my sister, I had been with these friends and family for several years, so I knew what was coming. But like everyone in the room when the actual passing occurred, it was a sad event and we were taken aback. Cause you keep hoping that maybe it’s not real. And I knew that it was, my sister’s diagnosis was well known, it was documented in its field of cancer. She had some of the best doctors you could possibly want. But I kept thinking, oh no, if, if we just give her a little bit more medicine, if I stayed here longer, if more people visited her. And there’s just things that aren’t going to change in these settings.

JANA:  So what do you do to decompress, to take care of yourself?

KATHERINE:  Well I had to come to terms with the fact that these clients and my sister were actually gone, because you do devote enormous amounts of time if you’re a professional caregiver. I was with all of these accounts for several years and that’s about the run of my companion care. Up to that point, they may not need you cause they’re still independent. They’re just beginning to show the age related diseases that you might be brought in to help with and aid them.

Then at some point they progress to either needing more care or maybe going into a facility, which we have wonderful ones here in West Palm. So you really have a two-year window or three-year window for the most part. And what I try to do is think I did the best and maybe someone else will come along and I can help them too. This is my chosen field. This is what I like to do. And it’s funny because every time I think I’ve just done it all, I’ve helped my last one and they’re really in a good place, then the phone rings and I’ll hear a story. And I’ll say, I can do that. It goes back to that affinity, for that feeling for wanting to do something to help somebody transition through their end days, or their final days.

And to be an aid to the family. Still there are families very confused about why there’s been a major change in mom or dad or a sibling, and this is again where someone like myself with vast backgrounds in home care can come in and say, no, that’s normal. That’s what a parent would do with dementia. That’s how a person will respond to pain from a chemotherapy treatment. And I don’t do this alone, especially in these advanced states. There’s always some sort of side help that you’re getting from the state or hospice. But working together, I think we really can make a difference in the aging process with people that are ill.

JANA:  Did you say that the gentleman who has cancer and the older woman who has dementia are the only family members left in that family? For instance, does she have any other children, and if so are they nearby?

KATHERINE:  Her son, the one with cancer is her sole close, living family member. He has a daughter in Melbourne or Port Saint Lucie, northern Florida, and she’s highly engaged in her work. She may stop by at a Christmas or a birthday or sometime just to visit, but they don’t provide any meaningful help other than being a family member and trying to care as much as they can. The son, the living son with cancer, also has two grandsons that are enrolled at the University of Florida, and their home when they’re not there is in Chicago. So there are family members, but they are not able to devote any substantial amount of time to these relatives of theirs.

JANA:  They’ve chosen not to devote any time. I can say it if you’re not not going to.

KATHERINE:  [laughs] I would have to say that yes, that is a side issue is– why, so often when a family member has raised you, clothed you, seen to your needs emotionally as they have aged up, that somehow a little bit more often an adult child can’t necessarily be more involved with their care. And uh, it’s left to competent strangers and the system to do the job that maybe a family member should be more involved with. So I agree with you as to the choice matter. I just don’t see why you can’t find a couple more hours a month to visit with someone who may not be around that long and who did play a role in your life.

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JANA:  So six years ago when you took on these these accounts, who was it that told you about their need?

KATHERINE:  Actually, one of the gentlemen that I was helping, who has since passed. I work through word-of-mouth and he knew that I did this kind of home care, companion care, and at that time they were not as ill. So I was recommended by a gentleman who I also had helped extensively and who was one of the clients that did pass around the time that my sister passed also. So it was word of mouth referral. I prefer it that way because you have more of an opportunity to rely on being personally recommended. And I liked that. The friends that know me know what I do and how I do it and they feel comfortable referring me to other friends of theirs that may have the need that I provide.

JANA:  So I asked you earlier what you do for yourself to relax and you answered that by– not surprisingly because you’re caregiver and so you’re used to thinking about everyone else’s needs before your own– it seems like he just sort of defaulted to how helping others makes you feel good.

KATHERINE:  I would have to say that frankly, one of the reasons I didn’t perhaps answer that straight-on is because I don’t know what I really did. I read all the time. I enjoy the outdoor life in West Palm Beach. I find myself going out to so many of the activities that the county provides. So what I would do probably to decompress is maybe see 10 movies in a row, scan the websites for upcoming activities so that I could clear my mind. And it’s quite a drain, I know you’ve talked to many people Jana, and it’s quite a drain to do home care, solely enraptured with the needs of a certain family or person for hours on end. So you begin to try to find those outlets like you just asked me about.

My background is in liberal arts, I’m an arts major, so this city with all of its paintings and outdoor festivals provide a great outlet. And that’s probably the way that I get around some of the sadness and loss that’s gone on with the people that I’ve helped. I played tennis for years, played league tennis and won. But again, the three years that I devoted to my sister was not enough for me to be able to recover and go back to playing because I lost three years of that type of exercise and bending and flexibility. So that makes me a little sad, because I can’t get that back. That’s a sport that you have to be actively engaged in. And I’ve joined a circle of friends, there’s a group of us that meet on Sunday afternoons just to get together. And I’m a big fan of the theater. I have had seats. I’m going to an opera festival soon. So that’s what I do. My hobbies after someone is no longer with me is to try to honor them by honoring myself.

JANA:  Was anyone else involved in your sister’s care besides you, in your family?

KATHERINE: No.

JANA:  Do you have any other siblings?

KATHERINE:  Yes. [laughs]

JANA:  People can’t see this right now, but Katherine’s getting really tight-lipped.

KATHERINE:  It was a situation where… not everyone, even in a family, can deal with a very ill relative. So I can’t fault other family members for not coming forward. Regrettably, it seems to be a trend in South Florida, in any case, that a lot of the folks that I’ve helped or that need help, their family is out of state. I found myself at one time relaying reports on a mother’s care to a lady in New York. She would come down two or three times a year and visit with her mom, but the rest of the time it was all coordinated care. And, that was sort of the beginning when I realized that these elderly clients had, in some cases, through the system, patients of a facility, had family, but they just weren’t around.

You’d think when someone is very elderly and you’re just seeing yourself and a nursing staff or hospice, you’d think that’s it. But then you come to find out that no, there actually are living family members elsewhere. And it’s not a bad thing. They’re conflicted out, they’re working. They’re still young. They’re not able to necessarily devote time to an aging parent and they make up for this sometimes by giving them the best care that they can. Making sure that they’re well taken care of. And for that I applaud them. I really do. So maybe by their non-onsite presence they make sure that their mother or their father is receiving the best care in the places that they’re at.

JANA: So how many people do the kind of thing that you do? I mostly know about home care through agencies and maybe through referrals of caregivers that my mom has had that have come to us through personal referrals. Now that I think about it, we’re not using any agencies, but I wonder if you could talk a little bit about the prevalence of personal companions, the number of people doing the kind of work that you’re doing independently. It just seems like it’s such a mixed bag of agencies and independent people doing work, you know, off book, but providing really great care. So many people go through dozens and dozens of caregivers through agencies that are ill equipped, culturally incompetent… it’s just so random.

KATHERINE:  Can I say yes? I will start off that response by saying the really good caregivers are taken. And that’s why I have cut back seriously over the last five years or four years because really I feel my time as much more needed and used more wisely in the care plan that I’ve devised for this family. And I have called friends and their book solid. The really competent, caring, not solely of course generally have bookings. They generally are engaged. As for the professional agencies, I would agree with you that it’s all over the plate. And the reason for that is, I think, twofold: more and more of the agencies are requiring, because they’re reimbursed, I believe through Medicare plans or private insurance, that you need to have an LPN or a CNA or in some cases an RN.

This is independent of how Medicare might provide some follow up service from an illness. They themselves send people out. When you throw open the door to just titles, you’re going to get an array of respondents. And not everyone really, really understands how difficult it is to care solely for an individual who can’t care for themselves. And that can be from changing their bed regularly, changing their sheets and linens to picking up after the dog or their pet. So the fact that someone has gone to a school and they’re out here now, and learned to be or received their licensing, doesn’t necessarily mean that they and their personality will be effective in the home. And so I agree that I’ve seen down here, especially, drive-by nursing.

JANA:  Drive-by nursing.

KATHERINE:  Where– and by that I mean someone that dashes in– I’ve seen this so much… dashes in, is sent by an agency, does what’s maybe minimally required or been discussed, and then doesn’t actually invest themselves in the home situation. And that’s been what I’ve heard is the number one complaint when I’ve interviewed or talked to people about coming onboard in their situation, is they have, in fact, interviewed or talked to agencies that, coupled with the demands of the agencies too: there’s usually a minimum time that they want their person in the home, there certainly is a minimum fee, and there still has to be that connection between the person they send and the family that’s needing that care.

JANA:  Mm-hmm. Of course, we can’t talk about this without making clear that the rate of pay for an agency-assigned caregiver is on average about $10 or $11 an hour in the United States. Not the money is a motivator for everything that you do, but I have to think that some of these caregivers who come from agencies or just not incentivized to take it to the max, you know and do the best that they can, because they really not getting paid that well.

KATHERINE:  The reasoning for that is because the agency will tell you, the caregiver, that, well we do the advertising, we do the screening, we give you what training there might be and we also find the accounts for you and do the scheduling. Where the disparity comes up is then when they do go in the home, they find that they are mopping the floors, running the laundry, changing bed linens, maybe dressing the individual, creating meals and perhaps even sometime in that hour providing some companionship and entertainment to the person. That’s a lot to ask somebody to do for $10 or $11 an hour today. So I believe that there is a movement on, because of the burgeoning growth of both caregivers and the elderly that are impaired and need the help, to somehow find some middle ground and financially change that structure so they are incentivized.

You are getting the A-players that really want to be there with your loved one. And I’d like to see that come about only because it would raise the standard of care by the folks that go into the home, but it would also bring attention to the fact that the elderly are people and they deserve the very best that they can have in their later years, and you don’t get that from just somebody that signed up to go in for a few hours here or there. And I know most of the agencies are highly reluctant to raise rates because it’s competitive, and about 20 to 25 but anything higher than that really makes the family member think how much do they really need somebody if they’re going to get up into higher prices per hour?

JANA:  You set your own rates, obviously

KATHERINE:  I do because I try to base it on what’s actually going to be required of me in that time period. And then you can also address it in terms of if you have huge blocks of time committed to an account. Then you can bring your hourly fee arrangement down because you know you’re going to be with that family. If you’re going to be someone who’s on-call or needs to do something in at the drop of a hat, maybe not as well-planned, you might get a little bit more an hour for that. So it’s a little all over the plate. With the agencies, I think there’s just a flat fee and everybody deals with it. But again, the independent caregivers are able to look at the person, the home, the location, customize it to what the family would like done for their family member.

JANA:  For someone who doesn’t want to go through an agency and wants someone like you, how do you suggest they go about it? You know, a son or a daughter who’s got a parent that needs help and wants somebody like you.

KATHERINE:  I would say ask your friends that have home care. And ask them who’s worked lovingly, kindly, who’s shown up, who’s maybe done a little bit more that they’re happy with, and then go from there. Talk to that person when they might be free, if they’re taking on new clients. I know some caregivers have been found through contacts at hospitals. There are some side medical personnel that would love to come into people’s homes and help. Not necessarily an agency, but I know some, at least one or two that were in the hospital and getting ready to go home, and it was put to them that should they need some more help maybe they could contact or be of help to them later in their home. I’m not sure that that came about, but it’s very hard. We’re not a group. We’re not organized. We’re not a union.

JANA:   Well, the reality is is that, I mean, you can have a conversation with anyone just about anywhere and chances are, I would say at least one in five at a minimum has had the experience of needing care for their parent. You just have to talk with people, because the reality is is that because we are aging so rapidly– and especially here in South Florida, when the senior population is pretty high in Florida, generally not just south Florida– but the chances are if you just ask your friends and neighbors, hey, I don’t want to use an agency, do you know somebody? And the other resource that we found was the churches.

I’m not a church going person, but one of our caregivers was a very active church member and she kind of scoped out one or two people in the church that she went to, that thought maybe would be good and no promises and there were referrals. But you know, even caregivers, know other caregivers. And you just have to be really nimble and proactive, because the reality is that it’s a challenge that many of us don’t want to face. And yet if we want our loved ones to be cared for properly, we have to engage in some way. We have to involve ourselves in the process of getting good care for them. That’s all I’m going to say about that. So I wanted to ask you how you felt that you had changed over the years of doing this work?

KATHERINE:  I think the main thing for me was the realization that I really enjoyed the elderly. I started in on this 10, 12 years ago, sort of just to be of help and maybe make a little bit of money. This is when I joined an agency. And I would like to draw this distinction. Companion care in the home is one thing. If a family is looking for someone to help in their home with a parent and that person, the parent, needs serious medical care through medications, shots, physical therapy, then yes, you should seek some of that, at least through agency-qualified personnel. I enjoyed my role strictly as companion care, and I had one account that love to read the Bible, and I happen to find that an interesting way to spend my day too at times. So I would join him once or twice a week in the afternoons and we would read the Bible together. And I liked that.

The gentleman I referred to earlier that was a high-end businessman from New Hampshire and had a chain of stores, we used to do the stock market in the mornings. I like that. I found that I grew through the hobbies and the past talents of the folks that I helped. I had a friend who played golf. I didn’t, but I was out on the course quite a bit and I can’t tell you how many times I’ve been in people’s homes and that’s what the impaired person wanted to talk about, was their golf game. So I changed to adapt to being with people who brought things to my life. So I’ve changed a lot. I’ve learned though that if you commit to an account and you’ve worked with the family and you’ve set up a schedule, you need to be absolutely committed and dedicated to that so that you don’t let both your name down or the family down. And that calls for making sure that the family member you’re going to help is within the scope of what you can do. So you have to match yourself to the work you’re going to do. And if you match yourself to the work you’re going to do, you’re going to enjoy it. You’re going to have fun with. You’re going to like go in there. And that’s where I found I changed. I found that I really could discern what I could bring to the table to help the elderly ill.

JANA:  Do you perform activities of daily living, like bathing and that sort of thing? Do you do that too? Or just strictly companionship, because how do you define companionship?

KATHERINE:  It’s always set on what the needs of the home might be. And yes, I do bathing, and yes I do some light housekeeping. Companion care is, the description is nonmedical in home care, so you are going in to aid that family member or the family and the person that’s ill, but you’re not licensed to do certain things like shots or medications that might be difficult. Now if your family members say, yes, we want you to help grandmother with this or that, the bathing reminder of her meds, then your companion care steps into that setting. But if you absolutely have someone that’s got a colostomy bag that needs to be changed out, you might need to have a CNA or an LPN for that.

If you have someone that has got wound management issues, you certainly want to be sure that someone is coming into the home to do that, and it probably isn’t going to be a caregiver who’s sole responsibility is companion care. How I define companion care is just that: a companion. Being with them if they want to go out to get their hair done, being with them if they want it washed at home. Watering the plants, making sure their favorite television show is on. Making sure that if once a week they have to have a certain activity occur like bridge or cards, that you can do that with them and that you enjoy doing that with them. So you’re providing and enhancing their later years till they perhaps move on or transition to more serious home care needs.

JANA:  Have you given medication to any of your accounts?

KATHERINE:  I had a cancer client whose daughter was an RN and she wanted him to have the liquid morphine that was approved through the hospice program, so– and anyone in the home could have done that anyway. But I’ve done a little bit with the permission and guidance of the family. t’s not something I go in and present myself doing. As far as actual medications like pills, you would have them there and you would probably remind the person that it’s time to take them, but there are certain things that the companion world legally does not permit you to do. So you look on it as, let me do what I’m supposed to be doing, and at the same time let me make sure that everything gets done that’s supposed to get done. And if there’s a problem, you just pick up the phone and call the family. If you feel that there was something you, you’re not enabled to do, you want to keep those lines of communication open and get your guidance from the family always.

JANA:  Have you ever had a disagreement with a family member about what’s appropriate and what course of action should be taken?

KATHERINE:  The only situation I can think of about that, Jana, is the gentleman that I used to do the stock market reports with, had a sister who lived in the same community. And she moved here specifically to be the liaison with her brother as he advanced in his diagnosed Alzheimer’s. And he, after four years or five years progressed to a point that it was probably going to mean a more capable facility, which they knew. This ran in their family and other family members had the same disease. But I’ll never forget when she said to me, and this was after several years. We routinely went to church on Sunday, and she whispered to me and she said, look, this time when we come out of church, I know that my brother is winding down in his disease. I want him to pick the restaurant where we go. Well, this wasn’t going to happen in a million years.

He barely knew which state he was in. So we stood around in the parking lot for about 15 or 20 minutes while the sister tried to encourage her brother in every sense of the word, from what type of food he liked to was it someplace nearby? And I just stood there very quietly saying, how could you have missed this that your brother has moved on to the point of making these kinds of even simple decisions. And there again, that’s that adaptability. You have to be able to step away. You have to be able to step back. You have to let family dynamics occur when appropriate as a caregiver. And finally, and I do mean finally, the sister looked at me and said, you might as well pick the place. And I went– we ended up at one of the more familiar spots that we’d been going to. So I wanted to say, when you say have I had a disagreement, I had the disagreement inside myself. It wasn’t a verbal disagreement because you do not want to ever, if you can avoid it, get on the bad side of a family, because they will support you too. They know that you have a hard job being with their family member, or they would be there. So they want you to work it out.

JANA:  And that’s a really good point. Because I think it’s easy to forget that caregivers are people too, and you need them. And that is an adaptation, something that we have to adapt to. I couldn’t help thinking when you were talking about that little scenario that perhaps the sister was in denial about her brother’s condition, and that’s why she was so forceful. Or maybe one of the reasons why she was forceful.

KATHERINE:  I think the family in general– we haven’t really talked about that– finds themselves suddenly with a parent that was high-performing and highly independent, being struck with either these mental, neurological age-related, perhaps, diseases or some other physical impairment… I mean even a stroke, maybe a heart attack, and they now have had heart surgery, that has taken a family member that they knew to be dynamic and engaged and maybe playing golf every day and visiting their friends, into a nonfunctioning state. And I feel a lot of sympathy for the family. I really do, because I’ve seen it up close for years now that, oh, maybe if they get more rest or if we take some of the stress off of the home, we’ll hire a maid to do the cleaning, for example, we’ll order food in, that the parents somehow will prevail a little bit better. And in the case of neurological problems, they don’t. Alzheimer’s is Alzheimer’s. And we don’t have a cure for it yet. Age-related dementia, which is all over the plate, we don’t have a cure for yet. The other illnesses may or may not get worse, they may get better. But I’ve watched the family struggle with what they need to be doing and how they view this change from when the parent was completely on their own and able to function, to now relying on an adult member.

JANA:  Do you find yourself counseling them, too, in some cases?

KATHERINE:  Yes I do. I do. In fact, with the current family I’m helping, the cancer patient, he will say, Mom– boy, she just talked yesterday all day long and she wants to visit her sister next door. And he’ll say to me, well, the sister’s long passed, and there was a whole new family living next door. And I’ll say to him, well that’s normal for her disease, and for us to say, nope, they moved out, or they’ve passed on, only reminds the remaining family members that these are changes that have occurred that won’t undo themselves, and do give them a little bit more of a foundation to approach it that it can’t be solved. That mom is going to remember that her sister at one time lived next door.

JANA:  Well, I have one last question for you. One thing I wanted to ask you is how you see yourself in 10 years or so. Are you making plans based on your own experience with others?

KATHERINE:  [laughs] That’s a very good question to end on because I can’t tell you how of my personal friends and neighbors and acquaintances hear my stories, and almost everyone now has someone who’s been impacted by dementia or Alzheimer’s or some other debilitating illness. And we all agree that we would love to live long, happy, fruitful, healthy lives. And we value that because we know how it can change and the aging process can bring these other diseases on to you. What I’m planning for 10 years is I hope, through healthful eating, engagements with activities that I want to be engaged in, that my lifespan is as healthy as it can be.

Because one thing about this field is you do see, starting in probably the early seventies up to around the middle nineties, anything can occur. So if you have something you want to pursue or some trips you want to take or some savings you wish to accrue, I would say get on with it. Because there’s no guarantee that you will not face what your friends and family members have faced. And to address that, I do have a lady friend I took care of, her mother, out of nowhere developed age-related dementia. And all my lady friend who I’ve known since age 19 can talk about is what if it happens to me? There’s none of this in our family. What if it happens to me? I hope that the research and the development that we fund through our donations and our lobbyists like the American Heart Association, the Alzheimer’s organizations, work as hard as they can to find ways that people can live longer but better quality lives. And that includes me. That definitely includes me.

JANA:  That sounds like a great place to end. Well, Katherin Summeers, thank you so much for coming in to talk with me. This has been a real treat, and I appreciate all your wisdom and all the work that you’re doing.

KATHERINE:  Thank you Jana. And thank you for this time for us together. I feel that it’s a field and an aging group that needs as many qualified and knowledgeable and available resources as possible.