Selected Podcast

Caregiving – The Toughest Job You’ll Ever Have

Cyndy Fanning discusses the challenges caregivers face.
Caregiving – The Toughest Job You’ll Ever Have
Featuring:
Cyndy Fanning, MSW
Cyndy Fanning, MSW, LCSW has over twenty years of experience in the healthcare field. Cyndy has experience in various settings which include skilled nursing facilities, hospice, psychiatric and acute care hospitals. In addition, she has experience with individual/family counseling, group therapy, support groups, palliative care, advance care planning, and crisis intervention. Cyndy obtained her master’s degree in Social Work from Delaware State University and is a licensed clinical social worker. Cyndy has been employed with Christiana Care since 2011 and is currently the program manager and social worker at Swank Center for Memory Care and Geriatric Consultation which is Delaware’s only outpatient program dedicated to the assessment and assistance of older adults with memory disorders and those who care for them and offering comprehensive assessment of the medical concerns associated with aging. Cyndy assists the patients and their families to provide information about resources available in the community and coordinates service delivery.
Transcription:

Melanie Cole (Host): This is Christiana Care’s Podcast Series, I am Melanie Cole and today we are talking about Care giving, The toughest job you’ll ever have. Our speakers in this podcast series represent the Swank Center for Memory Care and Geriatrics, Delaware’s first and most comprehensive outpatient program dedicated to the assessment and assistance of older adults and their caregivers coping with dementia or other neurocognitive disorders. Joining us is Cyndy Fanning. She’s the Program Manager at Swank Center for Memory Care and Geriatric Consultation at Christiana Care. Tell us a little bit about caregivers. What is it that they do? What are some of the most common tasks?

Cyndy Fanning, MSW, LCSW (Guest):  So, a lot of our caregivers they find themselves that they are taking care of their loved ones and not really probably taking care of themselves. Some of the tasks that caregivers may have, would be bathing, dressing, providing meals, tips, verbal cues for their loved ones. So, there’s lots of different tasks that they would have.

Host:  Well it certainly is an all-encompassing thing that takes up a lot of the caregiver’s time. I think one of the most common questions is that how long can they expect to do this. As someone who is caregiving for my 95 year old father, we do wonder how long do we expect to do this kind of task?

Cyndy:  So, that’s hard to really predict. A lot of times people who have a memory impairment, they had that memory impairment prior to getting the diagnosis. So, anywhere – a lot of the research out there will say anywhere from eight to twelve years would be average from time of diagnosis. But it’s really hard to predict.

Host:  Well it certainly is. So, let’s talk about the caregiver. What affects can caregiving have on your own health and wellbeing?

Cyndy:  So, a lot of caregivers again, they are so busy taking care of their loved one that they are not taking care of themselves. So, it’s really important for them to make sure that they are taking care of themselves and some of the things that they can do to make sure that they are doing that would be physical activity. So, making sure that they are doing something that’s getting their body moving. We want to make sure that they are engaging with other people, that they are getting enough sleep, eating healthy. They have to make time for themselves.

A lot of times caregivers will start experiencing caregiver fatigue or their burdened with caregiving. So, sometimes it might be headaches, they might be having physical symptoms or even trying to cope with not so healthy things like alcohol, drugs, and let’s face it, when we are not really feeling at our best; we sometimes can become short or aggravated with our loved one and we really want to avoid that happening.

Host:  It’s such an important point that you make. So, as we are trying to recognize that stress that we may feel, that comes with caregiving; give us some tips. You mentioned a few just now. I’d love it if you expanded on that about being realistic, being educated as a caregiver about the disease course that we are helping our loved one with, about knowing our resources and getting help when we need it.

Cyndy:  Some of the tips that I would definitely recommend to our caregivers is the first one as you just said, be realistic. You are not going to do this every time perfectly because none of us can. We’re human. We get upset. We speak before we think. And a lot of times, caregivers aren’t giving themselves the credit that they deserve. They tend to focus on what they are doing wrong instead of what they are doing right. So, one of the other things that I think you just mentioned is also making sure that they know what’s available in the community. So, they have to be educated about what’s out there.

The likelihood is that their loved one is going to continue to decline so, what does this look like. What is that progression going to look like? Do they have the financial resources to pay for the care in the home? Or is the care going to be provided maybe in a facility? Do they have the financial resources to pay for that or do they need to apply for state assistance? So, things of that nature are really key. Nobody can do this alone. So, you have to have help in regards to caregiving.

Host:  Well then let’s talk about the help and I want to get back to resources as well. But what about seeking help from other family if you are the only one that lives around your loved one. How do you go about asking for this help and what help can you ask other family members to do if they don’t live around you?

Cyndy:  If you have family who are out of state or they really, maybe they don’t have the time to sit with the loved one; they could always schedule appointments. They can take care of other things that might be of more assistance scheduling doctor’s appointments. If they are coming to visit, if they come frequently throughout the year; maybe they can do one vacation a year and make it a longer one and they take care of the person who might have a memory impairment.

Some of the resources, if somebody finds that they are alone and they have family members out of state or they don’t have friends who can provide some of that assistance; then really seeking out the senior centers, adult day centers, assisted living if the person needs to move to a community and knowing what other private duty agencies are available.

Host:  When you spoke of hiring a professional, for some of the time or assisted living facilities; what is it we are supposed to be looking for if we are going to hire someone to be a caregiver or if we’re going to be looking at assisted living?

Cyndy:  If you’re thinking of transitioning your loved one to a facility, whether it’s an assisted living, whether it’s a nursing home; the most important thing you can do is tour the facilities. Go and take a look at what they have to offer. Activities throughout the day geared toward patients who have a memory disorder, very important. You want to make sure that they are able to accommodate your loved one. What do they have to offer that’s going to help them adjust to the facility? Staffing. So when you are taking a walk around and looking at the people who live there; what’s the staff doing at that time? Are they engaging with the residents who live there? Are they making sure that they are – the patients there are well-groomed, taken care of.

If you are going to hire somebody to come into the home; then really sitting down with that person, letting them know what your loved one likes and what their dislikes are and let’s face it; not everybody is going to gel well together. So, trying to find that right person, it’s okay if maybe you have a caregiver who comes into the home and they don’t really seem to be hitting it off with your loved one; it’s okay to ask for somebody else. Our loved ones are no different than we are. Sometimes you meet somebody, and you just don’t get along well. They might remind you of somebody. They might rub you the wrong way. So, it’s okay to make specific requests as to who may work well with your loved one.

Host:  Well that’s a really good point that you make. What if you like the caregiver but maybe your loved one is easily agitated or aggressive or doesn’t like little details about the caregiver. How they look, or how they speak or any of these things can come into play when you are looking for these kinds of caregivers. What do you do then if there’s a little aggression or easily agitated? What do we do?

Cyndy:  So, we want to see what’s happening in the environment. Usually agitation that aggression that we see, that’s all communication. So, something typically is happening in the environment to upset the patient. So, we want to see what is happening. Is it how we are engaging with the patient? What’s the environment like? Is there too many people coming in? How’s the lighting? Are they tired? Is it now evening time and it’s been a long day and there’s just a lot of activity in the home? It’s really hard to pinpoint what do you do in that specific moment because we want to know what’s happening.

And our loved ones really can’t tell us whey they are feeling that way. So, we have to look in the environment and see if they are reacting to something else.

Host:  How do we know when it’s time for them to not be able to live at home safely even with a caregiver? When do we know that it’s gotten to that point?

Cyndy:  So, that’s going to be an individual family answer. It really is what I may feel for my loved one is time to transition somewhere else, somebody else may not feel it’s time. There’s a lot of red flags that we would say are safety concerns. Certainly if your loved one is trying to cook, and they are leaving the stove on or if they are leaving the house frequently. If they are combative. A lot of times they are feeling threatened and they may react by hitting someone. So, all of these things can indicate that it’s time for a different level of care. A lot of people, they want to keep their loved ones in the home as long as possible, but sometimes that’s just not feasible. Sometimes it does require a move to another level of care like an assisted living or nursing home.

Again, that doesn’t – that’s not a bad thing. When you move into a facility, it’s very structured which our patients who have memory impairments do really well at. Everything is very routine and structured. You have breakfast at this time. You are getting bathed at this time. Lunch, dinner, activities. They have multiple caregivers. So, if maybe somebody doesn’t work well with your loved one, then they have other caregivers that they can switch out and I think that’s really helpful to know. That sometimes people feel like you’re failing or you’re not doing a good job if your loved one has to go to a nursing facility and that’s just not the case.

Again, no one caregiver can do this 24/7, that’s why in facilities they have multiple shifts and multiple people to do this.

Host:  So, if family members are disagreeing about how to care for a relative; when it gets to that point, where you are saying I cant do this anymore, it’s just too much for me, we have to find a place for our loved one; then what do you recommend? Have you seen this before that where family members don’t always completely agree on the caregiving needs?

Cyndy:  It’s an unfortunate reality. Usually there is one caregiver who is primarily doing everything. So, even though there may be other siblings, typically, the care falls on one specific person. Now, in some cases, it can be convenient because that one person should have the ability to make all the decisions as to where your loved one goes. However, there are times where other people do not agree in regard to the caregiving and they may feel that the person should stay at home, that the other caregiver should be doing more but they are not willing to actually pitch in or do something to assist the caregiver.

So, again, we would always encourage the primary caregiver to know what their boundaries are and what their limits are. What can they do? If they feel that they’re burdened, and this care is too great for them to manage at home; then they should be empowered to make that decision that their loved one has to be placed. And certainly, reiterate that to other family members who disagree and could always give that option, if you disagree with how I’m feeling and that I’m burdened and ready to place mom or dad or whoever their loved on is that they are caring for; then maybe you could take over the responsibilities of being a primary caregiver and so an so can move in with you.

So again, if other people are strongly disagreeing; then maybe putting it back on them, how would you like to see this happen? You can take over the caregiving. I’m at my limits at this point.

Host:  Well I would imagine that happens in a lot of families and then again, that leads to my next point, what about the guilt? Even when you’re the caregiver and I know this, because I felt this; what is your best advice about that guilt that we may feel that we’re not even really doing enough when maybe we really are?

Cyndy:  That’s why it’s important that they have to be comfortable with whatever decision they are making at that time. If they are being forced, some family members will say you have to do this now, you have to place mom or dad, or you have to place your loved one in a facility because you can’t do it and they then place the person there sometimes is a lot of guilt because they really weren’t ready to make that move. So, again, the biggest point that I make with all of my families, you have to be accepting of where you are at. If you feel that this is too much for you to manage and you are ready to move them; then this is the time. If they are not ready to move their loved one; then that’s where a lot of that guilt comes in. They have to be accepting of where they are at.

When you place somebody, there is a lot of guilt and let’s face it, nobody’s perfect. We’re not perfect. The reality is, the facility is most likely not going to be able to give some of that one on one care that you are as a caregiver. So, being realistic about what they are going to receive in a facility versus what they are receiving at home. But again, I always come back to this, if the caregiver is not taking care of themselves; there’s no way that they are able to take care of their loved one.

Host:  Well that’s like that statement on airplanes, put your own mask on before you put the mask of your loved ones on. Because you can’t really care for anybody else unless you care for yourself. So, reiterate for us, some signs when it’s too much, when we should say okay we have to look for help or respite care or an assisted living, nursing home situation, memory care, whatever it is; give us some of those signs and what you really want us to know about caregiving, the toll it can take on the whole entire family and the best ways to really care for our loved ones while caring for ourselves.

Cyndy:  A lot of our caregivers they start being very short tempered with their loved ones, they may be – if somebody ask repetitive questions, their loved one might come back with them and say I just told you that. So, really that irritability, sleeplessness, they are not sleeping at night because they are constantly listening for their loved one to get up. They are not taking care of themselves. They are not going to their doctor’s appointments or they stop socializing with friends because they have to stay in the home to take care of their loved one. Headaches, stomach upset.

So, a lot of those physical signs we start to see. when we are meeting with caregivers, usually the tone in their voice. They start to resent caring for their loved one. So, a lot of these are red flags saying you know what, this caregiver isn’t taking care of themselves and they need more help. This might be too great for them to manage. Listening to what they really are saying and their tone, their body language. Sometimes we’ll get somebody in here and we are meeting with the caregiver and they are so cheerful throughout the entire assessment because they are exhausted. They are not sleeping. They are not doing things for themselves.

They are managing not only their life, but they are managing their loved one’s life as well. So, when we think about it, our own everyday day to day life, can be overwhelming and busy. But then when you are managing somebody else’s, it’s obviously twice as difficult and you are navigating the system. There are a lot of times you don’t know who to turn to, to ask for help. There are support groups out there. There are different places. There’s 24/7 hotlines but again, you have to take a break. You have to take care of yourself.

Host:  As we wrap up, please tell us about the Swank Center for Memory Care and Geriatric Consultation at Christiana Care Health Services. Tell us about your team and what you offer there.

Cyndy:  So, the Swank Center for Memory Care and Geriatric Consultation is Delaware’s only comprehensive program for patients with memory disorders and we provide assistance to their families. We also have assistance, consultations for patients who have concerns related to aging. What’s great about our program is we have geriatricians, we have a geriatric psychiatrist, neurologist, nurse practitioner, social workers, physician assistants. We really are a comprehensive center. And again, you are coming here, you can get a diagnosis and sometimes people already have an existing diagnosis, they just might need to get more recommendations and resources as to what they are doing.

The social workers are phenomenal because they are going to connect you with those resources and also stay in contact with you. So, at any time during the disease progression, you could always call the social workers to find out what are the next steps. What do I need to be doing right now? So, it is very helpful. It’s a great team and knowledgeable team and with expert care.

Host:  Thank you so much Cyndy for joining us today and sharing your incredible expertise for caregivers. It’s one of the most thankless jobs, but it’s also something that’s so important. And that wraps up this episode of Christiaana Care’s Podcast Series For an appointment at the Swank Center for Memory Care and Geriatrics, Delaware’s first and most comprehensive outpatient program dedicated to the assessment and assistance of older adults and their caregivers coping with dementia or other neurocognitive disorders. Please Call 302-320-2620 to schedule an evaluation And to learn more about programs and services please visit Christiana Care. Org to get connected with one of our providers. Please remember to subscribe, rate and review this podcast and all the other Christiana Care podcasts.