CarePartners: Individualized Care with Annie Jacobsen
Annie Jacobsen talks about family caregivers. Once you have a family member in medical care, the family member’s role is to help the medical team understand the person they’re caring…
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*The following is the output of transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors.
The following podcast is provided by care partners, living and answers for elders radio, and welcome everyone back to answers for elders. Than I am here with Annie Jacobson, who’s been on the show before, who’s a wonderful patient advocate, I guess, for primarily about dementia, but you work with families every day, Annie, and helping caregivers, and so thank you so much for being on the show today. Thank you for having me back. You were such an amazing partner of care partners and I know that care partners speak so highly of you and I loved having you on this show before. But this is really a special show just for family caregivers and you know, it’s probably what I’ve always said. It’s the hardest job that I ever did, but it’s was also my greatest privilege and having that journey and my life is something that I will never, never be the same afterwards, and I think we all are, and you know. But yet, obviously, Annie, you’re working with families. They don’t know what their boundaries are, they don’t know if you have a loved one. We’re in that stage now, this third stage of now you have a family in care, whether it’s skill nursing, whether it’s assisted living, whether it’s the hospital, whether it’s Rehab, whatever that is. It’s like what is a family members role? A family members rule is to keep showing up for their family, to help the community, the entity, whatever it may be like. You say hospital, anything. Know who this person is. Know that they’ve never seen the light a day before ten am. Please don’t get them up at six am for breakfast. Yeah, exactly. Let them know that this person does well with a little bit of levity or that this person is a very serious demeanor, and help them understand. Bringing some music and some headphones. You again, it depends on what the environment is, but there’s many ways. You bring up such a valuable point and it goes right back to you know. So often, you know, especially if your loved one has Alzheimer’s or dementia, there’s such an energy about I don’t know what to do. I so I tend to stay away. Yeah, and that’s the wrong thing to do. Sometimes it’s okay to just be there and not know and just to be there, just to be there and and you know, you don’t have to do anything. It’s your presence that’s most important, and I think that’s really the case with so many families out there that, you know, the statistics are overwhelming that they say sixty percent of, you know, those in is in a long term care situation are without regular visitors, which just breaks my heart. Yeah, that we treat our older adults as a society like this. And if there’s one thing that I’m passionate about, is starting to change that paradigm and I’m hoping that we’re making it lives a little bit of an impact on that. And so, for you, if a family has somebody in long term type care, you know what are the different types of care and you know how? How’s the best way to approach it? Look at looking for the care you want them to go to. Yeah, or just, for example, obviously the you know, how do I talk about this? You you talk about that there’s different types of care. Yes, right, and I guess that’s my question. How do we best understand where we fit in coercionals those parts? Yeah, there’s there’s immediate urgent care, something like a hospitalization, right, or if they are in a skilled nursing for a specific situation, even in those that are more maybe medically or situationally focused. There are ways to have that be more comfortable for the person, to reduce delirium. Maybe they don’t have dementia but they’re completely thrown off course because something unexpected happened there on new medications in a new place. So helping them have comfort and helping that whatever that care team is, whether it’s a hospital or nursing they’re able to understand who that person is a little bit more have a couple things of comfort. Maybe they’ve got a favorite brand blanket you can bring for the bed. In the long term care environments, where it is more planned, that’s where you really have that increased opportunity. Most communities, I don’t know one that doesn’t, gives out something that’s they’re called and about me or my story, something like that. I was shocked when I worked in a memory care community that maybe a third of the people had them filled out by their families. Come on, families, it’s it’s you’re exhausted. You’re typically coming into this in a place where you’re really tired. But one of the biggest gifts you can give to your loved one and their well being in that community, which will also give you more ease because it doesn’t particularly feel good moving somebody into care. But one of the ways you can best be there is let people know who they were, who they are, let them know what their interests are. These, my stories, are incredibly value. You know. It’s so valuable to because in that talking about let them know is to remind them we have as a family member, we have a right to schedule a care conference when your family, you know, loved one, is there, to talk to the department heads of different areas and and have that kind of a dialog with the care, you know, the Care Facility that they live in is so valuable. And it also, I will never forget, a simple thing like they had no idea that my mother liked to have a glass of milk with her meal. And my mom never spoke up, and so she goes, I hate this place, I hate the food, and she was going on and on and on and on, and so we went through and I said, well, she normally it was just came up in conversation and my mom likes milk. She does. Wonderful Information. Wonderful. Now, when mom went to sit down, every single time after that they gave her a glass of melt. You know, a little carton of milk. I never heard another complaint. She led the place. Now, yeah, it’s that crazy, such a simple thing. But you know, had I not had that CARE conference, had I not had the ability to do that? And you know, and and yet I found so often that those care conferences are so valuable in helping to facilitate the happiness of your loved one. And I think that’s the important piece, that you, as family members, are such a link to helping them find joy of where they are. And with those care conferences, there are a lot of administrators or the head nurse to get barked at at those things. They get the wrath of everybody’s exhaustion entireness. If you can go in with some passion, some gratitude, absolutely so curiosity and build that environment with a person, absolutely everything’s going to be there in that line of work because they cared dearly for these people and they’re often running on empty. So if you show up and care about them, they’re got a better collaborate with you for the care of your person. And you know, just understand that you guys are team. Yes, it’s not about you against the facility. Wherever your parent lives, if it’s assisted living or whatever. Look at that relationship as a team. Absolutely. So we’re talking again to Annie Jacobson and Annie, you are a family dementia care coach and tell me a little bit about how you work with families. Well, ideally I work with as many of the family members that are interacting with the person with dementia as possible, with the person with any form of dementia there as well, and look at what’s working well, what isn’t, what’s one thing that’s challenging each day, and then we take little adjustments, such as the way we’re approaching the person, using more mirroring queues and less language right, those type of things. And then, from looking at one interaction and how we can change meal time, how we can change breakfast, that family then sees how they can extrapolate that out to other activities and ways of engaging. Absolutely. And you know when in my book book I talked about the difference between being a quote unquote caregiver to an advocate. Yes, to me advocate is much more of a positive slant on being that day to day caregiver and an advocate also, you know, coming back to setting those boundaries up front, which we’ve talked about earlier in this show with Sean. It’s like making sure that you are honoring your own boundaries and I think that is the key of understanding that number one when you’re making choices for your parent, if you’re put in that position, that you’re having to make those life changing choices. I was in that situation. It’s their life, not yours. It may not be the way you want it to be, but it’s having those conversations up front to say, you know what, mom or Dad, don’t you know they want it this way right, and honor those choices. It’s that. It’s the respect fact that personhood. Who is that person, and they still deserve that. Any opportunity, they can have any place, they can still be seen as having choice for it my individuals demensia keeps the brain firing for anybody. It’s a sense of dignity and comfort and being seen right. It matters right, absolutely matters absolutely. And I think the other thing, like what we talked about again, when it gets harder, that’s the time when you need to do more work on you rather than focusing on them. You know, when mom or dad are in twenty four hour care or in assisted living. Your daytoday, things aren’t needed as much. But what I would say as a set boundaries, set healthy boundaries. Yeah, I learned and I was very glad that I had some coaching. When my mom went and assisted living. I used to go every day because, all my Gosh, you know, what’s mom going to do? And it’s like they one of the director of nurse and took me aside and she goes, your mother will never integrate her here. Well, if you’re here all the time, you’re keeping one foot outside for her and that doesn’t allow her to be here entire yeah, and so I learned. Initially she told me I want you to come once a week and I had that just flipped me out. It’s hot, I said, and I said really, she goes absolutely. But then I learned. Okay, then I would started coming more often, but we set a day. I come on Tuesday’s, Friday afternoons and one day every day, other weekend and that was the that was my routine. And Mom would try to push me. Oh, I need such and such is the store, you know. Would you bring me some half and half or something like that? Mom will do that. On Tuesday when I count. That’s great and that’s the thing. I think that we need to understand that it’s okay for family caregivers to set boundaries and say these are the days I come. Aren’t tell me. I mean, what are your thoughts on that? Well, I definitely think setting some sort of a schedule is great. Having worked in a memory care community, and again, I know this is an exclusively memory care but the team that worked there was able to say, Oh, you’ll see her on Tuesday. Remember, she’s coming, and we always have shows. Comes during big go or she always comes during dinner Fridays, right, and so the cohesiveness of that message people got to know that it was the consistent time that they would come. Right. That’s so wonderful. Annie, this has been such a great I wish we could talk for twenty hours on this topic because it’s it’s definitely a passion of mine that we are there for our loved ones. How do we reach you? Best to probably go to my website, which is Jacobson Jacobsen DCC for Dementia Care Coachingcom, and you’ll find on my information there we’re very excited to have you and we want to thank again care partners or sponsoring today’s show today. They’re always here for our family caregivers and I love the team that they work with. They’re great partners. They are thanks again. Thank you. The preceding podcast, which provided by care partners living and answers for elders radio. To contact care partners living, go to care partners livingcom
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Originally published March 23, 2019