Caregiving Support Tips as You Care for an Aging Parent or Spouse – Webinar Transcript

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Paige Fairbanks-Gunn Koelsch 00:04Good morning, everyone. Welcome to our monthly webinar on support tips for you as you care for an older parent or spouse. We are going to be addressing quick tips that you will get back your quality of life, how to come to terms with resentment, and guilt tips for managing the emotions and stressors down the road as your loved one ages.

Now, I would like to remind everybody, we do have a drawing at the end of the webinar. So please stay until the very end. These webinars are monthly caregiving webinars. The next one is with a panel of senior living residents, they are going to be answering your questions. And that is going to be set for May 23.

I’m Paige Fairbanks Gan and I work for Koelsch senior communities. We have communities independent living, assisted living, and also memory care communities throughout eight different states. I work in the Arizona region. And we have seven communities in Arizona.

Pam and I work together closely with several families. I’ve worked with over 4000 families have been working with families since 1997. Pam and I have worked closely together for really the last four going over four years.

Pam is the founder of Alzheimer’s Family Consulting, and she’s also the author of the highly rated, it’s Not That Simple: Helping Families Navigate the Alzheimer’s Journey. Pam has a lot of wonderful, useful information. And she has walked the walk.

Pam Ostrowski 01:40I have absolutely and thanks for that intro Paige. I appreciate it. And just a reminder to you guys, there’s a chat. So if you can just put in the chat where you’re from because we broadcast this webinar to all over the country,

Then, if you have a question about caregiving, or you want to share your story, and that way we can make sure that you get your questions answered, as well as, as we move along in the webinars, you are probably going to find out that you have even more questions.

With that, I’m going to ask Paige the first caregiver question. Just so you know, these are actual caregiver questions. These are from family members. The first question is, my spouse is struggling with health issues, as am I, I want to support him, but I need support as well.

This is something that we see frequently is two spouses, both of them having some sort of health issues. I don’t want to be a burden to him by talking about my health. How do I get support, so I’m stronger to support him. So Paige, what are your suggestions on helping this individual who sounds like their health is failing? How do they kind of get back on track? What’s your caregiving support tip, Paige?

Building My Own Strength

Paige Fairbanks-Gunn Koelsch 03:20My suggestions would definitely be reach out, do you have a supportive family? First of all, reaching out to family is crucial. So if you do have a big family unit, reach out to your family, and other outside resources seeking help reach out and have homecare a lot of people don’t realize that homecare is is definitely attainable, you can reach out and have home care. It can get extremely expensive if you have a 24 hours a day. But some people don’t necessarily need it 24/7.

Home care options are huge. We were talking earlier this week, and I had a family that was struggling. And she literally was just over the top stressed out and I said, what is it that you need? And she said, I just need a housekeeper and I need a CPA. I’m dealing with taxes so I provided her my tax guy and gave her the number to my housekeeper that I’ve had for eight years. And that helped her tremendously. So depending on your circumstances, reach out and ask for help.

Pam Ostrowski 04:24Absolutely. And I just put in the chat. There are federal programs now that have been approved recently to help those who need in home care. And, yes, some financial assistance and not everybody needs financial assistance, but it is available for those who use that as a block.

So I had a client who he said, Well, you know, it’s going to cost too much. I think his number was $35 an hour. And I had suggested three times a week and four hours each day to help his wife to help out through her tasks, as well as allow him some freedom. And he said, Oh, that’s a lot of money. And I said, so can you put a price on your peace of mind?

It comes down to getting help when you need it, and making sure that, you know, you’re, you’re in the right frame of mind. Clearly, when you’re both not feeling well, it’s important to take a look at what’s what you have energy for.

First of all, the key elements of all good health, meaning, no matter what’s your, what your issue is, it’s important for you to get plenty of sleep, seven to nine hours, no eye rolls there, you guys. It’s like, oh, I only sleep six hours. Well, you know, let’s make sure that you make that quality sleep at the very least.

Next is exercise, getting the blood stimulate getting your circulation system stimulated, getting the blood flowing, so that you have oxygen to your brain. Because, by the way, the less oxygen that goes to your brain, that’s what causes memory loss and, and potentially, dementia. So exercise is really important.And you don’t have to go to the gym four times a week, you can go for a nice long walk, you can walk in nature, because that they there are studies that prove that just taking a breath, and exhaling completely while you’re out amongst the pine trees, or, you know, the flowers right now, of course, that’s allergy season. But that’s really an important way to change your environment.

The more that we stay enclosed in our homes, and COVID taught us this, but those of us in brain science already knew about it.

Staying inside your home, isolated, is the worst thing you could do for your brain. One because you’re typically sedentary inside your home. And too, because you’re isolating your brain from stimulation, visual, any sensory type of stimulation.

So unless you’re making bread or chocolate chip cookies, in which case your nose is very busy.

The other thing that you need to do to help is hydration. A lot of people feel like they’re having issues with memory, oh, my brain is foggy. It’s like, well, how much water do you have today, and you can have coffee or tea. Both of those count, there’s not enough caffeine and either of those to affect the hydration level that you can get from it if you would prefer that as a beverage.

But it’s really important for you to stay hydrated. And as we age, we drink less and less, I mean, water fluids, not necessarily other things. So we want to make sure that we stay hydrated. So eating well, you know, 80% of the time, if you’re eating salads, and you know clean foods, and then those 20% When you have ice cream or a couple of cocktails, those won’t affect you. But that’s the foundation of of having a good mindset and good health. So oh, okay, sure.

So the downside, living alone and in isolation, you are basically not getting stimulus for any of your senses, you are not engaging socially. So social skills in general, whether that’s telling your bank teller to have a good day, it’s forcing you to interact with other people by leaving the house. So when in and by the way, this doesn’t count as interacting with other people. Zoom doesn’t have phone calls actually don’t really either. So if you think about how the brain works, you’re under a lot of pressure. Or more pressure than you are on the phone on the phone, you can kind of fake it. I would call my mom and say How are you doing? Oh, I’m doing great. How are you? And I’d fall for it and tell her and then it’d be like, Oh, what do you guys do on for lunch? Oh, we’re going to the same place? Oh, you know, so I’d be like, Oh, you’re going to Golden Corral. And are IHOP? And what are you going to have? Oh, the same old thing.

She was that usually people with dementia have about a dozen phrases go to phrases. And they’re very generic responses. And because when we, when we engage with others, we get used to that we just don’t pay attention to it as being signs of of cognitive impairment.

But the challenge is when you’re out physically with somebody else, or you’re interacting with other people, that is stimulating your brain and even just walking outside and seeing so visual stimulation, even if you’re not a social person, just sitting in a stimulating environment like you know what we talked about? out and one of our other webinars about, you know, going to independent living, there’s a ton of people, they’re all going out to the cocktail bar and they’re eating dinner. And that even if you don’t engage, you’re still being stimulated. So that’s why isolation basically shuts down the brain. And that’s a lot of what happened during the pandemic is that people were were under stimulated, and the older that the individual is, the more that affected their brain health. So hopefully, Lizabeth that that helped you out.

But the other thing that we need to think about, in regaining strength to be supportive of other people, is decompression. So it’s very easy as a caregiver to spiral out of control, anticipating things that will probably never happen. So think about that. That’s called worry, by the way. And so we worry about, well, what if this happens, or what if that happens, and I used to call my parents the what if parents, because they, my dad could come up with all these random scenarios. Now, when he was in World War Two, as an artillery officer, that was what you did, right? You analyze, you know, if we use this artillery here, then we’re going to hit there and map all that out.

But life isn’t an artillery range. And so anticipating things that won’t happen, is not beneficial to your mental health.

A friend of mine coined the phrase, stay where your feet are, stay where your feet are, which is Don’t look back, oh, my gosh, terrible things happened in the past, more terrible things are going to happen in the future. Because right in that moment, you’re wasting it. Because you’re either thinking backwards or forwards. And what that does, from a, from a body perspective, is it creates anxiety, if your heart starts beating faster, right, so we’re going to wear out our hearts faster. We clench inside, right, so it becomes harder to breathe, which means less oxygen, less oxygen to the brain, less oxygen, the body parts, your feet get cold, your fingers might get cold.

So the more we worry, the worse it is for us, the more we try to anticipate the future, the worse it is for us. So I’m not saying you know, don’t do any planning. But don’t do any anticipatory worrying. And there’s a difference between the two.

But you don’t need to have a bunch of of what if scenarios, it’s like, well, you know, we’ll deal with it. When it happens, we’re prepared. So make sure you’re financially prepared, know who your doctors are, those types of things are preparation. Other than that, assume that you’re in good hands, and that you’re going to figure it out when it happens. Because nine times out of 10, it doesn’t happen.

What you’re anticipating is part of the problem. Also, one of the things and we’ll talk about this in a little bit, is that caregivers tend to be like this and spouses and, and probably in this case, two spouses are like this. They’re just, they’re codependent for lack of a better phrase, they don’t, they don’t have anyone but each other, or that person, the other person is their core person. And there’s nothing wrong with that. Except when it’s 24/7.

No one none of us are meant to hang out together. 24/7 365. So it’s a matter of understanding your support role, what does support me, it doesn’t mean taking over this person’s life, it doesn’t mean giving up your well-being and your life for them. That’s not the definition of support. And it’s not the definition of caregiving.So we’re going to talk a bit about the definition of caregiving in a little bit, but really, what you need is to find your friends who make you laugh. Don’t talk about your loved one. There’s a lot of commiseration out there and that can be depressing.

I’m not necessarily a fan of caregiving support groups. I think support groups have their role. But I have found personally that they tend to make me more depressed than not because I hear everybody else’s stories and I’m like, Well, I guess you could look at it as my situation is not as bad as theirs. But then the other thing is look at all of these people that are so sad and you know, they don’t have that element of positivity.

So to me if you have a support group, you would bring in someone who would make people laugh, make the caregivers laugh, make that give them some creative outlet, something you know, tips on you know how to you know how to do breathing that will quickly resolve the sense of anxiety or anxiousness in general. And so those are the things that we need to practice. And so we’ll definitely be talking more about quick tips that you can you can implement. Paige, one of the things that you and I talked about when we were preparing for this was boundary setting. Can you talk a bit about that?

Paige Fairbanks-Gunn Koelsch 15:16Well, boundary setting is huge. You know, I think I think people are worrying way too much. And I know it’s easier said, you know, don’t worry, it’s easy to tell people don’t worry when you’re overwhelmed with too much on your plate. But I think boundary setting is huge. And you can only control what’s within your control. So boundary setting, self prioritizing, trying to to have outlets and set boundaries with with your loved one. And also, again, reaching out to family members to help help them help you by taking a little bit of the load off. boundary setting is huge.

Pam Ostrowski 15:57In talking about boundary setting, because one of the things that I’ve noticed, both with working with my clients, caregiver clients, and even back in the day, when I was living this situation for 15 years, I noticed that we use terms such as, you need self care. Well, that’s such an overused phrase. It’s like, what the heck does that mean? When you signed up for this webinar, I mentioned, when somebody says, Don’t worry, you’re not alone. That’s not very helpful. I mean, I appreciate the sentiment, but it doesn’t help me immediately.

And so I’m going to give you a little tool or a way to think about this, again, a lot of today is going to be about mindset, and resulting behaviors and choices. So caregiving, whether it’s for a spouse, or an aging parent, is not about you taking over someone else’s life and doing everything. Because guess what, you’re not the best at doing everything.

We need to look at where do I what tasks, what things fit into my life, that I do really well. And then find other people other resources, whether it’s in home care, or a family member or a friend, and enlist their help to say, Hey, can you drive mom to the, to the doctor’s office every Tuesday, whatever the schedule might be. And so let them do what they do best.

On my website, AlzheimersFamilyConsulting.com, I have a worksheet, which is basically, you know, listing people’s names, what they do best. And then there’s a calendar that you can you can connect to, as well. So you know, use your favorite apps, but use that as the premise, right is to, to divvy up if you per lack of a better phrase, responsibilities and tasks. Because, you know, Frances Frei, who is a professor at Harvard Business School, it has many books out, I actually saw her speak live. And she talks about leadership and strategic management and those types of things for companies. But she and her loved one got COVID. And she realized how the concept of exhausted mediocrity, which is her premise behind that most of her work. it’s, you can do a bunch of things at a mediocre level, or you can do what you do best, and let others do what they do best. Does that make sense?

Because we, as caregivers, try to take over people’s lives, it becomes very difficult to handle it all and have your own life. So we sacrifice our lives, because we’re caregivers. And that’s not the intent. So we need to figure out what we do best.

As an example, my dad was very upset about being in assisted living. And he refused to really recognize that mom needed more help, and she wasn’t going to get it from him. And so he would call me and he’d be angry. And it was just really difficult for me to cope with it. I was running a business. I knew what he was saying was his perspective and not reality. And so I get really angry with him. So I call my brother and say, you know, please call Dad, he needs to talk to somebody, and I’m not the person. I, in that moment, didn’t realize what I was doing. But I was acknowledging I’m not good at this.

Listening to Dad complain about things that don’t really exist and in conditions that don’t exist. I don’t have patience for that. So but my brother would sit and talk to him or listen to him for an hour. So it’s, it’s, it was definitely a lifesaver for me, because I Did I got to the point where I hung up on him, I would hang up on my dad when he’s in the middle sentence. I’m like, I’ve had enough. You said this yesterday, I’m not going to have this conversation again. And I hung up on him. And that’s when I called my brother and said, I did a bad thing.

A lot of what I’m sharing with you is things that I wish I knew. And I honestly, when I think about it, it breaks my heart, because I wish I had known what I’m telling you. Because I feel I feel sad. When I look back at how my dad and I interacted, just because he was struggling so hard with my mom being sick, his health declining, and things weren’t going the way he wanted to. Now bear in mind, he was a lieutenant colonel, so he wanted to be in charge. And we’ll talk more about that a little bit.

Paige Fairbanks-Gunn Koelsch 20:51And we have a question from Michael, I just want to address if that’s okay. Michael asks, what’s best way to select both non-medical and medical in-home care. Well, two quick things, you know, is is your loved one seeking the difference between the two non-medical is going to be helping out with, if you need help with light housekeeping duties, meal prep, laundry, standby, assist for showers, you know, getting in and out of bed, those types of things that is considered non-medical, which I call private duty.

You use Medical Home Health when there’s a skilled need. And what that means is, maybe your loved one has a wound and they need wound dressing a nurse to come in and actually dress the wound. And or maybe there’s some IV infusions going on, that is a skilled need. And or also a skilled need is with medical home health is physical therapy, occupational therapy, and speech therapy.

So the skilled need with a nurse is the medical and the private in home care is more assistance with your activities of daily living. And the difference also, between the two is your medical home care is, is going to be short term, usually a couple of weeks, maybe two up to several weeks, depending on maybe if you need so much therapy, and that is usually covered by your Medicare and your secondary insurance, whereas non medical is a private pay situation. Michael, thank you for that question. Pam, any caregiving support tips on that?

Pam Ostrowski 22:38No, but we do have some other questions. So Jennifer, while Paige is answering a question, I will grab that link to but it should be under caregiver tools under the Tools section on Alzheimer’s family consulting.com. If you find it on there, if not, let me know. And also I can email it to this entire group.

We’re going to get to the guilt and resistance and another question. So we’ll get your question answered. And Laura, spot on, you don’t have to visit every day and that’s where we’ll talk about that and guilt and resentment.

That’s one of the things that most people feel guilty about. I’m a long distance caregiver. I’m worried I talk with my mom every night, but you know, and so then there’s the people who can Canvas it, and they feel even guiltier because, well, I’m right here. I really should. So we’re going to talk about that guilt. And I agree with you about Copper Creek, my mom was at Rock Creek and the support there was amazing.

Paige Fairbanks-Gunn Koelsch 23:47That makes my heart smile. Thank you.

Pam Ostrowski 23:51Honestly, you know, the Koelsch communities have been had been so supportive, like they just didn’t embrace like, my mom loved the people at Rock Creek. I mean, she just would hold their hands and hug them and smile and laugh. She was happy. And I realized, you know what I can let go of the grip was so we’re going to talk about codependence and when you’re a caregiver, and somebody else actually does step in, and it helps, and it wasn’t you providing that care.

Feeling Resentful

Paige Fairbanks-Gunn Koelsch 24:53

Caregiving Support Tip number two. So I’m caring for my spouse who is sick. I’m feeling resentful. I’m having to care for her. But then I feel guilty for thinking that way. It’s a downward spiral. And I’m not sure how much more I can take any suggestions.

Pam Ostrowski 25:10Okay, so feel free to pop in the chat if this applies to you. So, this was one that, honestly, the focus is on resentment and guilt. And let me break those both down. Because, much, like I said earlier about, you know, do select the tasks that you do best and let others do what they do best, as opposed to you taking over. And I noticed, I think it was Lizbeth that said, well, my loved one only wants me to do it. That’s called manipulation.

You have to have a candid conversation with them to say, I can’t do it all. And, that’s a really hard thing. For many of us, who are fixers, and problem solvers, to say, I can’t do it, I can’t do it all.

And so first of all, that’s the first conversation you need to have with your loved one is to say, I can’t do it all. So I’m bringing in so and so and so and so and they’re going to help give you a better quality of life. I’m not leaving, I’m still going to do what I do best and still be supporting you. But I can’t be your only support.

Let them ruminate on that. Don’t expect a positive response immediately. But you know, have and have that conversation fairly regularly, until they accept the fact that, you know, you can’t do it all. And part of the problem is, as caregivers with that codependent relationship and the guilt and the resentment that goes hand in hand, we, we keep showing up, you know, we keep going and doing all the things that this person thinks we should do. And so when we talk about what does what does what causes resentment in the first place, it’s expectations. Right?

Because you feel resentment, and I’ll use my own personal experiences. I resented visiting my parents. Did I feel guilty about that? Absolutely. I would sit in my house and think, I really should go see Mom and Dad. I’ll see dad first. And then I’ll see mom, and then we’ll you know, and then I’ll come back home. And it’s the easiest thing was to just go and not feel the guilt. But I would feel like it just wasn’t something that I wanted to do. And so the person I was in a relationship with at the time, said, Well, what if you just skip a week? You know, would they notice?

And I said, then I feel like I’m abandoning them. And he said, Well, that’s on you. Because it’s okay to feel the feels. As they say, these days. It’s okay to feel sad, resentful, guilty, grieving. You know, frustrated, angry, we’re human. It’s okay. You shouldn’t feel badly about feeling badly for a few minutes, or, you know, not a day or two, but a few minutes.

So, when you look at resentment, we look at the expectation somebody else has about us. It’s our view of what they expect. I told my dad, you know, so I feel badly that I didn’t visit last week. And he said, why? And I said, Well, I feel like, you know, I’m the only one out here for you guys. So I should visit. And he’s like, we’re fine. We don’t need you to visit every, every week. And I was like, What do you mean? I said, That’s not very nice. And he said, Well, you know, you have your life. And we understand that. So, you know, do what you need to do. And come see us when you can. And I was like okay, he gave me permission. I was looking for permission.

But the point is, my expectations were wrong. I was dead wrong. So the first tip is have a conversation with your loved one, about their expectations of care for you. So and the reason why I bring that up is that I’m just looking to see who said it so I get it right. I think it was Lizbeth. Ah, yeah, the one the loved one only wants you the care givers help so and to stay at home. And that works out really well for them. But it’s not very helpful to the rest of the planet, all the caregivers and people who care. And there’s lots of ways and we have talked about this in the past, and I’m sure we’ll talk about it, again, of getting that person to see that their needs, if they actually do feel that way.

Verify with them by saying, look, I can’t do it all. We’re not going to get help. That’s the first step. And then the next step is, we could get help more easily if we were in a senior community, and then go check out communities to find out because usually, with this age group, we’re looking at people who believe that nursing homes where their parents stayed, is where you’re trying to place them. And that is so not the truth.

I think it was our last webinar where we walked through all of the different environments that kills communities as an example, but other communities to what they do with individuals. And that’s why you need to meet and look and dine at these different environments in order for this person to open their eyes to what this looks like. And I’ve had many, many clients who have told me, Oh, she just wants to stay home or he just wants to stay home. And it’s like, well, there might come a point where you’re just going to have to take them and say, this is respite, you know, your house is being painted, or, you know, we’re renovating the bathroom, and you can’t live there at the same time, are we found mold, whatever those stories need to be to trigger an attempt to try out a community.

Because it’s that they latch on to negativity, the older we get, the more negative we tend to be. So that’s ultimately where we get caught up. And we believe them when they say, well, nobody can take care of you like I can, that is so not true. And I’d call them on it. It’s like, that’s not true. I’m only good at these two things. I was really good at those two things.

But because they’re older, you know, we cave, and we let them manipulate us. And so you have to stand in who you are, because this can consume you and make you very sick. So if you’re an older individual, you already have afflictions, older, meaning 50 and over and you already have health issues, they’re going to get worse. And the last thing your loved one wants is for you to get sick because of them. So that’s resentment, and then guilt.

So those are expectations, you need to confirm that the expectations are correct. And then enlist family, friends or professionals so that you get your peace of mind. Because if you lose your peace of mind, you’re going to become like me and I would get angry at my dad. And that then you have more resentment and more guilt with guilt.

Pam Ostrowski 33:41

What causes guilt? Guilt is triggered by us feeling that we didn’t do something we were supposed to do. I was supposed to go visit mom every week or every, you know, twice a week. If it didn’t happen, I felt badly. Why?

Because I set the expectation for myself that the definition of a good caregiver was for me to visit her at least twice a week. And that really, that was just me making stuff up. So we do need to think about who’s creating that sense of guilt. It’s because we’re not doing what we think we were supposed to do. And so what’s the measuring stick? Um, what you’re supposed to do. Now, that’s a rhetorical question, because we could stay here all day trying to talk about that, but who gets to decide what you are supposed to do?

When we were kids, it was our parents, you know, put put socks on that’s called out you know, and I don’t want you to get catch a call. That’s what you’re supposed to do. And we’re raised with what you’re supposed to do, because we have a framework from our parents. But we’re not children anymore. And so we need to go back to that.

Who gets to decide when I’m supposed to do? So ask yourself that question and write down answers. It’s always good to have notes. But it’s there. These are thought provoking questions like, you know, make sure that you check in with expectations. And then again, what’s your measuring stick for what you’re supposed to do? So those are, this is my very long-winded resentment and guilt. Like I said, we could talk about this all day.

But Paige, what about you? How do you, you know, you just went through your dad’s situation in his passing, and, and there were some bumps there, too. Do you have any examples or caregiving support tips of how you dealt with either resentment or guilt?

Paige Fairbanks-Gunn Koelsch 35:40

Yeah, the guilt. Yes, my dad passed away at the end of 2022. And I’m in the business, I’ve been doing this for 25 years. And it’s, it’s so different. I mean, it just, we teach, we talk to families and counsel them. And when it happens to yourself, it’s like, oh, my gosh, there were things that I could have done better. But I also think that it’s, it’s an opportunity to, to set flexible boundaries again, because like you said, I told mom, I was mom and dad was going to see them every week. Just overloading yourself. But I think it’s an opportunity.

Examples with my dad would be, I felt like I was taking over and not validating his feelings, he didn’t have any dementia towards the end. And I was trying to get him to, you know, communicate with me. But I also felt like I was really trying to take over, that was my biggest mistake, and not really trying to validate his feelings. So I think that was rough and a learning experience. But I think it’s an opportunity to set flexible boundaries for yourself, don’t say you’re going to come every day, or every day at Wednesday, or, you know, set flexible boundaries. But I also think it’s a great opportunity to seek help, it’s a great opportunity to say, Okay, I need some help.

Let’s consider, you know, your feelings of resentment and guilt are if they’re persistent, consider seeking counseling. So you can really dive and explore and dive deep into those feelings. So you can get seek some help. So somebody can help you with some coping strategies, you know, those types of things and also opportunity that, hey, if you’re caring for your loved one, you feel overwhelmed. And you’re feeling resentment.

You know, depending on your situation, you know, look at a possible living experience, you know, I mean, is it maybe time to make a move. We have a beautiful, independent living community and beautiful assisted living communities where that can help take the burden off of those caregiving roles. And you can actually be with your loved one as a spouse, or your child.

Pam Ostrowski 37:54

You brought up something, then we’ll move on to the next question. But the when I talk with my clients, when after their loved one has passed, I always do a follow up call, see how everybody’s doing. And I tried to stay in touch and the most recent person whose parents passed, she said, I feel so relieved. I just feel like a weight has been lifted. And I was thinking, and we didn’t go down this path, but part of in my head, I was saying,

Why did you allow it to get to that? Why did you? Why did it have to be such a weight? Why wasn’t it, it was such a delight to be with my person for as long as I had. And it wasn’t that she didn’t feel that way. But her first reaction was, I feel like a weight has been lifted.

Because as many times as you will watch a webinar, that’s what I call sunshine and rainbows and lots of hope and things, you also have to admit, caregiving is a burden. It is hard, and it’s emotionally and mentally and physically difficult. It’s challenging. And anybody who tells you any differently has probably never been a caregiver.

Because you’re thinking about that person. 24/7, just like you mentioned about your dad. And so what we’re trying to do in webinars like this is help you ask questions of yourself as to Where’s that coming from? Like the question about, you know, what’s, what’s the measuring stick for what you’re supposed to do? Because that’s what triggers guilt. And you know, that those kinds of questions are things that we just want to plant the seed, and then see where that takes you have the conversation about expectations, and then be candid about what you’re best at so that you’re not providing exhausted mediocrity or mediocre care.

You can’t do it all. I promise you. There’s no one here, including Paige and me, that can do it all. And that’s one of those questions we could talk forever on.

Needing a Break from Caregiving

Moving on to Caregiving Support Tip number three.  All right, so this individual said, I’m really struggling with this caregiver role. It’s not in my DNA, and I really don’t want to do it.

I love this, Thank you to the person who wrote this, because thank you for being candid and honest, because, you know, none of us really expect to be in a caregiver role. I know my dad didn’t, I didn’t, we weren’t prepared for it. And so the question goes on to say, how do I make sure my loved one is cared for properly, but it doesn’t involve me providing that care myself. So Paige, what are your thoughts on this situation where the caregiver doesn’t want to be a caregiver, and may even want to walk away? What are your caregiving support tips for this one?

Paige Fairbanks-Gunn Koelsch 40:49

That one’s a toughie. But it happens all the time. And believe me, everyone feels this. So it’s very, very normal to feel this way.

Well, first of all, delegating responsibilities is huge. But the biggest kicker here is and I’m a huge supporter of this. Respite Care. A lot of people don’t realize what respite care is. Respite Care is 30 days or less. You bring them into a community, whether it be an independent living setting for meals, and elegant dining and spawn and activities or assisted living, if they’re needing you know, if there’s more heavy care side of things, and or dementia care and a memory care community.

I will tell you, I had a family member that that did respite care, and she came in she brought her husband in for a week. And she said, Oh my gosh, Paige, and I tried to explain to her, I said a week is not going to be enough. You can’t do a week, you got to do at least two weeks, and I suggest 30. I suggest 30 days, but she did one week.

Well, what she did is she let everybody know that she was going to be having her husband with us for a week. And so what did she get? She got a million phone calls, text messages. She was air traffic controlling everyone reaching out to her and she got she didn’t get any respite at all. She says, Oh my gosh, I was more overwhelmed with people out from the outside reaching in and I couldn’t even rest. And I said, Well, I didn’t want to say I told you so. But you need to come in and do 30 days. So she did.

I told her what you need to do this limit your phone calls, don’t even maybe tell your one person that can feel all the other phone calls and that you do not want to be bothered. She slept for one week, she did her second go ranch did 30 days, she told her brother to field all the calls and told everybody not to bother her, please don’t bother me. And that’s okay, your friends and your loved ones are going to understand that. She said I slept for one week.

The second week, I was able to get my house together and get my taxes done. And the third week, I was actually able to go shopping and go to go to lunch with a friend of mine. Amazing and she said that was the best. And she said and I wasn’t on a treadmill, I didn’t have a schedule. So you know that those types of experiences are huge and because caregivers, they can pass away before the their loved one.

So if you don’t get the respite care that you need to recharge your battery, it can be it can be really bad. I’ve seen caregivers and Pam, you’ve seen caregivers that pass away before their loved one. So you know, limiting the phone calls with family having you know when you’re doing if you do respite have other family members check in and don’t go see your loved one. I hate to say it, but this is your time to unplug. You can contact them.

Some family members reach out but just get your respite care. And then there’s also depending on your circumstance, there’s also hospice services, if depending on if someone you know is in a situation where they have a terminal disease, if hospice is involved, hospice can can do respite care as well. There are respite services for families for hospice. So that’s also an option too. If you’re 65 and older, that’s a Medicare benefit.

Pam Ostrowski 44:10

The other thing about hospice is all you need is a severe decline, you don’t actually have to have a terminal disease or anything like that. So it’s a matter of, you know, knowing that you have a situation where this person has declined and they’ll come in and do an assessment and say,

If this person needs assistance more than what they’re getting at home, they’ll come into the home. So hospice can come into a community or a home, wherever to provide that support. One thing that we skipped on that kind of plays into this as well, because Michael had asked a question about its reverse guilt, which is when the person who you’re caring for feels like they are a burden.

Pam Ostrowski 45:06

Reverse guilt is the burden part of the challenge. So the person that you’re taking care of isn’t oblivious to the amount of work you’re doing. parents tend to put guilt trips on their kids more, and that that tends to be the more manipulative relationship, but not always.

And so there’s also this sense of, I know that this is hard on you, and I don’t want you to do it. So what that goes back to is the conversation about expectations. Let’s talk about, where are the boundaries?

What do you want me to do to help, take you to the toilet, do you want me to get in the shower with you and shower with you, you know, what and where are those boundaries. It turns out, nine times out of 10, if not higher, the person being cared for doesn’t want you to be their caregiver, that physical caregiving that’s required, always works better with a professional

I’ve yet to see someone do worse with a professional than they would with a loved one, because you’re changing the relationship. And it’s no longer a spousal relationship, it’s no longer a parental relationship. It’s you’re taking care of me. And therefore, you are a caregiver only. And that can result in a lot of different behaviors as well, right? Because it’s like, don’t touch me, this isn’t what we do. You don’t help me take a shower. And that creates anger. And you think, Oh, this is the dementia or this is the, you know, this is the cancer or the stroke talking,

No, you’re the wrong person for the job. That’s how it comes out is anger, frustration, it destroys the relationship, when the person who’s being cared for is feeling like a burden. You have to have better conversations with your loved one about their expectations, your expectations, because it’s not about sometimes it’s not about capability

For instances, with spouses, my dad would have done anything for my mother. She didn’t want him to. And she told him so. And God love her, and, he’s like, but I can help you with this. And she’s like, No, I don’t want you to.

They had that conversation too late in their journey, in my opinion, but now’s the time, guys, whether you’re talking to your spouse, or your parent or, to your adult child about this, set the expectations, I do not want you to do XY and Z for me, those all those conversations have come to play in order for this to be you know, so that’s kind of my thought reverse guilt.

But as far as the codependency to me, it’s difficult for this person who either loves you or doesn’t, because sometimes family dynamics can get nasty, meaning that they’re complicated, and complex and awkward. And so we end up in situations where you’re the only child, and so who else is going to care for Mom or Dad. There’s going to be you. And that’s not true.

You just have to find the right resources, because you shouldn’t be the only person my opinion, you should never be just one person caring for another person. Because that is unreasonable to for you, your life and your ability to function is the it, it’s too big of an impact. You’re trying to do too much, you’re trying to be a superhero, you’re trying to do what you’re supposed to do. And it’s too much, it’s not fair.

And so, if this person is in a situation where they may not have the best relationship with this individual, but they’re still caring for them, find other resources. Respite is a great idea. You go on vacation. I went to Italy for three weeks. And it was it was actually that first trip was 10 days, and you know, time zones and stuff and I was busy. Keep yourself busy.

Don’t go just stay home and think, I’m just going to sit at home, do errands and mow my lawn and you know, catch up on things. Now, that is not respite. That is called living your life without your loved one.

Then you start missing them and then you start calling them and now you created this perverse situation where you’re dependent on being a caregiver and you’re dependent on making sure that they’re okay when you know that where they’re safe. The community would call if there was a problem or a need for guidance. So the phone call thing to me is like, no, that’s you being dependent on being a caregiver, which is a whole other topic. So okay, so that’s it for question number three.

Handling Anger

Paige Fairbanks-Gunn Koelsch 50:20

Alright, well, going to Caregiving Support Tip number four. Both my parents are in assisted living, my mom has dementia, and Dad is resisting changes that she is experiencing. He gets angry, but not for the reason you think he gets angry? Because she can’t take care of him anymore? How do I talk with him to help him?

Pam Ostrowski 50:43Because we have very little time left, I’m going to try to answer this with an example. My dad was a fixer, he retired Lieutenant Colonel always in control, everything, everything went their way, their plan was that they would pass away in their sleep, without being sick at all, it would just happen, and boom, that was it for them. That’s not what happened.

And so his anger is not where you think it’s coming from, in this situation. Anger is a result of frustration, sadness, grieving, and a sense of loss of control. So my dad was almost this exact situation. And, and I did a terrible job. I didn’t talk to him about how he felt about mom’s situation, because I was grieving. And so we were both get angry at the same time about the same thing. But we wouldn’t disarm ourselves, take off that armor and say, so what do you think about all of this, you know, and be empathetic, and listen.

And so I have a lot of things that I feel guilty about. Now, I regret the behaviors, which is why I do what I do is to prevent you guys are doing the same thing. So having that conversation to ask, you know, well, so it seems like you’re really angry, can we can we talk about what’s going on? And my dad actually, he acted out and was yelling, and I came in and said, Dad, why are you yelling at caregivers? And he’s like, you just don’t understand. And I said, What don’t I understand? And he’s like, you won’t get it? And I said, Well, I mean, give me a try.

And he said, This is not the way it was supposed to be. And I can’t tell you how many spouses say that this was not the way it was supposed to be. And that gives me chills every time. He’s like, she was supposed to be here for me. And I was supposed to be here for her and she doesn’t engage with me. She knew who he was. But she just stopped engaging. So that’s why he was angry. Yeah. It wasn’t me. It wasn’t the community. It was none of those things. He was sad and his heart was broken. That’s why he was angry. So what about you Paige, what are your caregiving support tips on this one, and then we’ll do the raffle.

Paige Fairbanks-Gunn Koelsch 53:11

I think, you know, this is huge. It’s huge. The caregiving support tips are about expressing empathy and encouraging understanding, validating their feelings. That’s what it’s about, because they’re not angry at the community. They’re not angry at the family member, they’re angry at the situation.

But I will tell you, you can live a good life in this circumstance. If it’s dementia, you can live a good life, but it is not the same. But you just have to pivot your mindset and get the tools, the resourceful tools to help you throughout the day. And focus on the good memories and the positive moments that you can still have.

Pam Ostrowski 53:48

Absolutely, and the fact that those with dementia are evolving, and you have to manage that evolution, so you’re getting to know a new person. They don’t like peas anymore. They like carrots. They used to hate carrots. But, now if they want to have a chocolate chip cookie for lunch, who cares? Have a chocolate chip cookie for lunch.

For those with dementia, the rules of adulting are out the door for them.

I’m really glad that we had a chance share our caregiving support tips, how to address guilt and resentment, what we’re supposed to do, we’ve had a chance to talk about all of the caregiving quick tips and conversations that we haven’t had but we need to have. So hopefully you guys have found this helpful.