This is the Whole Care Network. Music Helping you tell your story, one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music Are you struggling with pulling your family together to create a working support system for someone living with dementia? In this episode, Sue and I are talking to Dr. Barry Jacobs, who is both a clinical psychologist and a family therapist about how to transform your family into an effective caregiving team. We're sharing four tips. Music Welcome. We are Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music For those of you who are following our Navigating Dementia Caregiving Roadmap, this podcast will be helpful, particularly with step eight. Step eight's title is Start Planning for the Next Stage of Care. And it's especially important when building your personal support network of family and friends. Barry, thank you so much for joining us today to talk about how to transform your family into an effective caregiving team. Today, we're focused on the dynamics between those surrounding our loved one, who is living with dementia. Barry, when we read the book, the AARP Caregiver Answer Book, it was co-authored by you and your wife, also a psychologist, Julia Mayer. We realized you are someone we want to make sure we're bringing the messages forward with to have on our show. So listeners create the best possible environment to pull their families together. So Barry, welcome. Thank you so much, Sue. It's really my pleasure to be here. And I really appreciate your mentioning some of my professional experience and my co-authoring a book with my wonderful wife. But I also want to mention our personal caregiving experiences because I think that they're, if anything, more important than our professional experiences. So early in life, when I was a teenager, my dad had brain cancer for a year before he died. And then later on, when I was in my 50s, my mother took care of my mother, who had vascular dementia, and my stepfather, who had Alzheimer's disease for about seven years before their deaths. But it was those personal experiences that really informed what I do as a professional every single day and really have given me a much deeper understanding of what dementia caregivers go through. So part of what we're talking about today is, as I said, pulling families together to help them work effectively. And unfortunately, that's not always so easy because as many of you know, family members don't always agree on just about anything. They may not agree on what's for dinner or what to watch on TV. But then when it comes to something as serious and really important, it's how to care for an older adult who's developing dementia. There's often disagreement and many challenges in helping pull folks together so that they're working as a coordinated team moving in the same direction. Well, it's such a shame when family members can't agree because it creates a tremendous amount of additional work and frustration and emotion. And all of this leads us up to tip one, which is to create consensus. Absolutely. So let's define consensus at first because consensus doesn't mean everybody has the identical view of what's going on with the older adult or what should be done. But it basically means that people are, what I say is they're on the same page or they're in the same ballpark. They have a kind of general impression that's comparable, that's similar. And with that, that type of looser consensus, they can work together and begin moving forward in what is an ongoing process as this disease progresses. So one of the most biggest challenges with creating consensus among family members early on in an older adult's journey with dementia is that there's a lot of uncertainty about the diagnosis. It's very difficult sometimes to discern what is normal age-related changes to cognition and what are something, a more pronounced change, something that we would call dementia. And there is often disagreements among family members as to what's going on with an older adult because they have very different perceptions of that older adult. Sometimes they've had very different experiences with that older adult. And consequently, they can't agree on something as basic as let's bring dad to the doctor and make sure he gets the evaluation that would help clarify for us what's going on. So this is especially true when the person who's living with the dad, say, or lives next door or across the street who sees him every day and has a lot of experience, an ongoing experience with some of the slips that dad's having. He doesn't remember things as well. He doesn't organize things as well. Things that used to come easier for him. He can't do as well now. And that versus the person who may be living at some distance, the brother who lives an hour away, who may call dad once a week for 10 minutes during that 10-minute period of time, dad can hold himself together pretty well and not really reveal that he's having some cognitive issues. And so you have, say, the daughter who may be living close to dad who says, let's have dad evaluated and the brother who lives some distance who says dad doesn't need an evaluation. By the way, sis, you're always an alarmist and you're making a big deal out of nothing. As a matter of fact, you should just leave dad alone. And then consequently, without a common perception, a common consensus about what's going on with dad or even the need for an evaluation, just right from the get go of this conflict between that daughter and that brother. And so one of the ways that I recommend that families build this consensus is by sharing as much information as possible. The daughter should not spend a whole lot of time trying to convince her brother that dad is in fact in need of an evaluation for dementia. But daughter should share every bit of information that she can. Any office visit summary, medical office visit summary, any MRI report, any blood test to help brother begin to just calculate some of the same things that she's calculating in her determination about what dad may need. And daughter should say to son, why don't you spend some more time with dad? Ten minutes is not really enough time to get, ten minute phone calls, not enough time to really get a good impression of where he is now. Could you spend a few hours here than watching a football game or doing something else or going somewhere with him this weekend or maybe like to have him come and spend a weekend with you. And when that brother has an extended period of time with dad, he's not so able to just deny that dad has some cognitive slippage which may require an evaluation for dementia. So consensus is built over time with more of first hand experience of dad and more sharing of information. It is hard when everybody doesn't agree or when one person doesn't want to see that there's something wrong because it puts the other person in a really defensive position and that makes it hard. It makes it almost impossible. A daughter in the position who's kind of like crying out for help and everyone is saying, you're a zool in your mind, that person feels very, very abandoned and often very angry. Especially when she is really convinced that something's going on which is very troubling and something needs to be done. So I think what I really took out of that that was so important too is at the beginning you said consensus isn't everybody 100% agrees. So what we're trying to do here is at least get people on the same page that something does need to happen and then we can get to a point where hopefully everybody can agree. But that leads us into tip two because once we have some kind of consensus, tip two is to define an ongoing format for decision making because this podcast episode is about family dynamics and this is how we're going to try to pull together as a family. Absolutely. And it's really essential that families talk together as a group that it's not whispering down the lane. One person is saying something to another person who says something to a third person. And that requires that there be an initial meeting where family members who have some concerns about dad are talking about what may be going on. And if something in fact is going on, if that in fact is diagnosable, if professional things that even if they have mild cognitive impairment, which is not a diagnosed dementia, as often as you know, kind of pro-dromal syndrome is what is called as something that happens preliminarily to diagnose the dementia. This family would have been meeting to kind of talk about like, okay, what is happening? What does dad need and what can we do to help dad as now and as he goes forward if this in fact is a progressive condition. And so when family members meet as a group and share ideas and share information, one of the most important things they do at that point is to set up an ongoing family meeting that would continue this conversation, continue this planning process. What I recommend to families is then meet quarterly, hopefully in person, but not in person because many families now are dispersed around the country then on some sort of video platform where family members meet and give themselves a good hour or two to really hash out what's happening, sharing information and really beginning to think through how as a group can we best help dad. And dad may early on, particularly if dad has already been given the diagnosis, dad may want to attend these meetings because certainly he's got a lot of stake in what these conversations are. And dad may say, you know, this is how I'm hoping to live for as long as possible in my home. How do we make that possible? And then the family as a group would be working towards making that happen. And part of those conversations is talking about what's working, talking about what may not be working on family members, and also talking about how things are changing, how dad's needs or as his condition progresses, his needs are increasing. And it really, really good it comes down to is, is as this group conversation goes on, there needs to also be some kind of indication from each person in the group conversation about what they are willing to do, what they're available to do, what they're able to do. And that is also something that will be part of the quarterly meeting, checking in with each person to see where they are in their own lives, how their life circumstances may or may not be impacting their ability and their availability to help dad and to take that into account in making the caregiving plan. When these caregiving plans go well, then then this planning process, I should say goes well, but it really enhances and strengthens family member relationships. So for instance, with that daughter and son that I mentioned earlier who were at odds, because they did not have consensus about whether dad needed to have a relationship with dad needed a dimension of evaluation or not. That brother now comes around and says, you know what dad didn't do the evaluation says, and I think you were right, and now let's see what we can do to work together to help dad. And then as they meet quarterly, they continue to really take into account their, you know, each of their needs and they become respectful of their perspectives. And so the relationship between that brother and sister will be strengthened. And that may be maybe true for all the sibling relationships if you're dealing with a sibling group, that when these meetings go well, it really does make those relationships stronger. And those that strength through those relationships is enhanced long after dad dies. So, you know, so this is not just a planning process for dad, this is a planning process for the family as a whole. And here we're trying to work through family dynamics. I will say, my father lived with Parkinson's for 25 years and my sister and I were always friends and we did family birthdays together and holidays together and such but lived our separate lives. But those 25 years of coming together to support my parents through my dad's caregiving journey had have transitioned us from being friends and sisters to best friends. And it's amazing how much we realize we were alike and we we have so many things in common and our decision making is so similar. But that caregiving where we're talking every day or every other day towards those last five years or so really did strengthen our relationship to just a point I never could have imagined. Yes, that is absolutely wonderful to hear and that that's exactly what I aim for in working with with family groups that that people hear one another in a different way they come to appreciate one another maybe as adults working together on a specific goal. Maybe in a way they never have as adults, because, as I mentioned, siblings are sometimes dispersed around the country and they may not have a whole lot of contact with one another other than to get together for holidays or have occasional phone calls. But working together on caring for a parent this this this extremely important project that they all feel strongly about through that that that collaboration they really can improve their relationship just as you and your sister have. The other side is unfortunately is that if these meetings don't go well if families don't develop consensus that they don't really learn how to make decisions together. It can create some pretty nasty schisms in families. I mentioned my dad had brain cancer when I was a teenager and in my own family there was a terrible schism that occurred between my mother and my father's mother and my grandmother. That about what kind of treatment my dad should receive and they couldn't agree while he was alive and then afterwards they'd simply stop talking to one another. And I they didn't they really that went on for about 20 years until my grandmother died. That was it really made the pain of his loss much much harder because the family was was was basically cleaved in two after that. When my husband was diagnosed. His adult sons and he and I began having meetings to discuss the diagnosis to do some planning while he was able to still participate. And we were able to learn his wishes we were able to do the financial planning and have everybody in sync with what was going to happen because they didn't live in the same state even that my husband and I did. And we continue to have those meetings even when he was no longer able to actively participate when we would have them I would hold the phone up so he could at least hear it and to whatever degree he could understand. He understood but we were all very much in alignment and the word consensus is so great. Because they had a lens into to their relationship with him that I didn't have because he was their father and there were things that are important to them that I didn't have a lens into and didn't know. And we were able to discuss things and it made it a lot easier is our journey went along and not having to agree on everything and yet to have consensus on it made it much easier for us to keep that relationship going. This leads us into tip three which is building a family caregiving plan. Yeah, so once you have these quarterly meetings, what's taking place of these meetings is conversation about the parents needs. They're what everyone is able to do available to do. And then you're beginning to put together the nuts and bolts of the plan and the nuts and bolts consist of who is going to do what and when they're going to do it. Everybody is listening to what each person is committing to and will hold that person accountable for within the next three months before the next meeting. And you can keep notes on such a meeting or you can use some sort of AI app to keep those notes for you. But those notes become almost a kind of non legal contractor just a basic agreement about who's committing to doing what and when. And when this goes well, the family caregiving plan becomes kind of a working and living document that's going to guide this family group for the next three months until it's going to get revised at the next family caregiving meeting. So that the plan is constantly in revision, you know, up being updated as the parents condition progresses and as other family circumstances change. And, you know, the plan needs to need to reflect the current reality and also take into account what may be coming down the road. And, and, you know, we've we've hinted to this already but tip four I think is really critical as we sum up how to manage through the family dynamics and that is how to plan to deal with conflict because throughout all this, there's a lot of potential for conflict. And unfortunately, there is a lot of conflict and a lot of families. It's not and when I say conflict. I'm not referring to disagreement that disagreement is is kind of part and parcel of families, families, people have their strong feelings. They often have strong feelings about what a parent needs. But conflict is where the disagreements turn disrespectful where forces are raised where accusations are made and feelings are hurt. And so disagreement is fine conflict is not because that's what weakens families long after family caregiving is over. What I what I advise family families in dealing with with disagreement is they have to be respectful of the decisions each individual is making where conflict often occurs is when one family member feels like another family member should be doing more or should be doing something different. And we have to be respectful of every individual makes their decision about what they're going to commit to on the basis of their availability that, you know, essentially how much time they have and whether they get time off at work, their ability. Can they physically do some of the tasks that are being asked or can they do, you know, handle the insurance forms that are being handed to them and their willingness that they had a relationship with that parent that they're now willing to do the things that are being asked. Of them for that parent, or they willing to do some tasks which may be difficult for them like helping a parent get dressed in the morning or feeding that parent. And so if each family member is is respectful of every other family members determination of their availability, ability and willingness that even if they don't agree on what who should do what when there is still going to be some some respectful conversation and negotiation without it leading into conflict. And when when it when the conversation becomes really heated and derisive, and things could fall apart very easily. That's when I recommend that families who are going to be meeting for these family caregiver team meetings, get a facilitator and that could be a trusted friend, it could be a religious leader that they all they all know and sometimes it's me sometimes me as a psychologist will work with families around these things. I feel like I'm when I do this I feel like I'm a referee and I'm there to ensure that people not just speak respectfully to one another, but also hear each other really listen to one another and hear each other and not simply react. Mostly what I do in these in these meetings is I slow the conversation down so that people can can better take in with what each is saying, once they're able to do that they're better able to negotiate some of their differences of opinion, and not have a need to to end bitter in conflict. Barry I think that's so very helpful and instead of people being locked into their own corner and stuck on what they they want a facilitator can help them again get to that point of consensus which is so important that we've been talking about. Thank you so very very very much Barry for coming here for sharing so generously of these tips each one of them are valuable and as you're sharing them I'm walking through my experiences and experiences I've heard from others and I appreciate that in closing what final comments have you got for our audience. I would just say again, you know to me family caregiving is not simply about caring for the person who's receiving care but is about caring for everyone in the family through this whole process. When family members are good to one another when they're kind when they're respectful family relationships are strengthened and they're strengthened for years after that their the parent dies, but when people of lapse into conflict when they take when they point fingers at one another. It leads to schisms which also last for years and so I think the stakes are high here and I'm hoping that you know I've shared some ideas for how families can can strengthen their relationships and not weaken them. Everything we've been talking about today is in the book that I mentioned you mentioned earlier the AARP caregiver answer book. It's a book that my wife and I co wrote is 150 questions and answers about all aspects of family caregiving including running meetings and dealing with siblings and dealing with sibling conflict for that matter. The books available at all book outlets Amazon bonds and noble your local bookstore hopefully is also available on the website and on the website of the publisher go for press. And it's also if you're interested in reaching out to me perhaps just just sharing your perspective or or asking question or perhaps inquiring about my my services as a psychologist. You can always reach me through my website. www dot caregiver answer book dot com. And that is a great book I can vouch for it. We have we've been through it so many times and it is it's really well done and very practical which you know a lot of books are not that way. So Sue and I live in the world of practical tips and canon conversations and that book fits perfectly into our mantra. So thank you for me as well Barry for for your time today and for helping us discuss tips to help manage family dynamics during dementia caregiving. It's it this can be one of the hardest things to figure out. So hopefully this podcast will help. We shared four tips. Today the first one was to create consensus consensus remember doesn't have to be everyone agrees just everyone on the same page at least. Number two define an ongoing format for making decisions for decision making. So monthly meetings quarterly meetings something that keeps people sets their expectations and keeps some sort of rhythm going to decision making. The third tip was to build a family caregiving plan who's going to do what when and the fourth one was to plan to deal with conflict. Don't don't let disagreements turn into conflict. That's where it can follow apart for more than just the caregiving experience for potentially for years and years and years. We don't want to see that happen to you. Now if you have tips that will help people deal with family dynamics please put those on our Facebook page or our Instagram page. The links are in the show notes. If you like this podcast please subscribe to it or follow it. We'd love for you to also pass it on to other people. Thank you so much for listening. We really appreciate that as well. Now as Sue mentioned this podcast falls into step eight of the navigating dementia caregiving roadmap that can be found on our website which is the caregivers journey dot org under the guides page. It's the first guide. So check that out if you haven't already and every podcast as you know we also create a blog. So all of this is written as well as spoken here in this podcast so you don't have to take notes through a podcast. You can go out to our website onto the blog page find the pod the blog that matches this podcast number and you'll see all the notes for this particular podcast. We all know family dynamics can be a challenge. Today we discussed tips to help make this part of your journey a little bit easier. We're all on this journey together. Yes we are.
