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Tailored Support for Dementia: Coaching as a Solution
Are you finding it challenging to connect with your loved one who has dementia?
You’re not alone.
Many caregivers face similar struggles and wonder how to better communicate and engage with their loved ones.
In this episode, two caregivers shared their personal experiences and the unique strategies they’ve discovered to navigate the ups and downs of dementia care.
Here are some key takeaways from our conversation that might help you in your journey.
1. Embracing Repetition as a Communication Tool
One of the caregivers spoke about her sister, who often repeats herself or asks the same questions. Initially, this was frustrating. However, instead of trying to redirect or correct her sister, she learned to go along with the conversation.
This approach made her sister feel more comfortable and less anxious.
Repetition is not just a sign of memory loss; it can also be a way for those with dementia to find comfort in the familiar.
Allowing them to repeat themselves and joining in on their repetitive statements can reduce anxiety and create a peaceful environment.
2. Utilizing Emotional Connections
Another powerful strategy discussed was the importance of connecting emotionally rather than logically.
When a loved one with dementia expresses confusion or anxiety, instead of correcting them, ask open-ended questions that align with their feelings.
For example, if they say someone is coming over when no one is, you could respond, “That would be nice. Who would you like to have over?”
This shifts the focus from what is factually correct to what is emotionally supportive. It’s not about getting the details right; it’s about making them feel heard and understood.
3. Distraction Techniques for Anxiety
The podcast also highlighted the effectiveness of distraction techniques. When a loved one becomes fixated on a concern or is anxious, engaging them in a different activity can help.
One caregiver shared how singing hymns with her sister distracted her from repeatedly checking the time. They sang the same hymn multiple times, which not only calmed her sister but also brought them closer together.
Simple tasks like folding laundry or going for a walk can also serve as excellent distractions and help ease anxiety.
4. Understanding the Role of the Caregiver
The podcast emphasized that caregiving should not come at the expense of your well-being. It’s essential to find a balance and not feel guilty for taking time for yourself.
Being a caregiver is a demanding role, and maintaining your health and mental well-being is crucial for providing the best care possible. Recognizing your limits and seeking support when needed is a sign of strength, not weakness.
These insights are more than just tips; they are real-life strategies that have helped caregivers manage the complexities of dementia care.
Remember, you are not alone in this journey.
By focusing on emotional connections, utilizing repetition, applying distraction techniques, and caring for yourself, you can create a more supportive and nurturing environment for your loved one.
Ever Wonder How To Know What Is Causing Your Caregiver Stress?
Take Our FREE Caregiver Stress Assessment Today!
Read More:
Talking About Caregiver Burnout With Michelle Gordon
Check the other podcasts: https://dignicarebydesign.com/category/podcast/
Email me at: lizette@dignicarebydesign.com
Message me at Instagram: https://www.instagram.com/thinkdifferentdementia/
[0:01] What’s up, Christian Caregiver? It’s Lizette, your Dementia Coach, and today we are having a very special episode of Ask the Dementia Coach here on Christian Dementia Caregiving, where I have the unique privilege of meeting two of our listeners who were extremely brave and willing and wonderful to participate in this podcast episode where we spent a fair amount of time unpacking their own unique challenges and questions that they have related to their own dementia caregiving journey.
[0:49] If you haven’t yet signed up for one of these Ask the Dementia Coach monthly meetups, I invite you to the next one, which ironically will be my birthday, September the 19th at 6 p.m. So if you want to hang out with me on my 54th birthday, I invite you to go to the link in the show notes where you can come spend an evening with me. I keep the numbers of registrations small so that we can spend time together, quality time together, to help you answer some of your specific dementia related questions.
[1:33] Both of these ladies who participated this month were extremely brave. Neither of them asked to have their names changed, and both of them were willing to be on camera. Having said that, you do not need to be on camera, and if you would like to, we can use a pseudonym. We can change your name very easily so that you can remain fairly anonymous. So don’t let the fear of other people hearing your questions and knowing who you are, perhaps keep you from participating in this unique opportunity to be on the podcast, as well as to help other people.
[2:23] Because I know one thing for sure, and that is if you have that particular question, so does someone else. So I invite you to September’s Ask the Dementia Coach session, or the monthly meetup, which will be on September the 19th at 6 p.m. Eastern Time.
Meeting Our Brave Participants
[2:45] The link to register for that is in the show notes, but without further ado, meet our two very… First, they’re not the exact first, but they’re one of the first, they’re some of the first people who have been on this monthly meetup and asking their specific questions related to being a dementia caregiver. So enjoy this very special episode where I know you will find tremendous value in listening to other people’s journey.
[3:28] So thank you so much for being here thank you for joining me for the ask the dementia coach monthly meetup that i am doing to serve people in our community and i really appreciate you being here and being willing to ask questions and be on the podcast so i’m super proud of you guys this This is a big deal. You mentioned before we came on to, before we started recording, that you help a younger sister. No, she’s older. She’s an older. She’s older. Yeah, I’m the youngest. She’s the older. You’re the youngest sister. And where’s home, if you don’t mind? And whatever you don’t want to share, you don’t have to share. I just, I’m a friendly person. I like to know about people.
[4:18] I’m in Canada. You’re in Canada. Wonderful. We’re in Canada. Are you familiar with Canada? A little bit. You have a French last name because I saw your last name. Anyway, it’s in New Brunswick. It’s one of the Atlantic… And are you Canadian? Because I know a lot of people who moved to Canada, so it’s not a question. Yes, I am Canadian, yeah. So tell me a little bit about your situation. How can I help you today? Well, I usually go over to my sister’s and brother-in-law’s place. They invite me over for Sunday night for supper, usually. And, well, two weekends ago this weekend, my brother-in-law had to go away for the weekend, but he did come home at night, which was good. Anyway, so I was with my sister. And…
[5:15] I found that she was very confused at times, and I found that she got anxious. Okay. And I was just, well, it’s hard to talk to her. I think last time you had a Zoom meeting, whatever, I asked you how to be able to communicate with her, and you had said something to the fact that things in the house, things around in the house, things that she can see. So that’s what because she doesn’t make conversation she tries to say something but it doesn’t come out but she wants to express okay so and it you know she finds it hard that way so so how long refresh my memory how long has she had number one does she have a diagnosis and number two if she does how long has she had dementia yes she uh i think she since 2014 no okay 2012 so a good 14 years so she’s been she’s been down this journey for a while correct yes right yes can she still dress herself yes she can yes okay does she do it well does she put everything together sequence it properly or is it kind of you give her the of clothes and you kind of have to help her and tell her how to do it, but she can still do it. No, she picks out herself.
[6:45] Okay. So she picks out her clothes herself and she gets dressed all by herself. Nobody has to help her. No, I don’t know. But she’s having a harder time with her words. Am I understanding? Yes. Yes, she is. Yes. Okay. Do you know what kind of dementia she She has Alzheimer’s. She has Alzheimer’s. Okay. Has she had a stroke before?
[7:09] No. Okay. When you say she’s having a hard time with her words, is she still speaking? And every now and then she’s just struggling to get a word out? Or what does it look like? Can you help me with that? Well, she doesn’t know how, well, and of course her brain is not properly functioning, right? And she has a hard time. time like well her main conversation like they have a nice sunny room sunny and of course the back back of the house and all the trees a lot of her comments are all the trees are still today, okay so what i hear you saying is she’s saying a lot of the same things yeah yeah she’s repeating herself a lot. Oh, yes. It has been for a while. Okay. Tell me a little bit about what’s frustrating. Are you trying to find a way to connect with her or do you feel frustrated because
Communicating with Loved Ones
[8:13] she says the same thing over and over again and you can’t get her off the track? Tell me a little bit about what’s going on? No, I’m getting used to her repeating. Okay. And I just kind of go along with what she says. Okay. And does that work?
[8:31] Pretty well, yes. Okay. After listening to you a couple of times. Okay, wonderful. That’s great. I’m so happy to hear that. So you mentioned anxiety. You mentioned that she was anxious. What does that look like? How does that show up in her? Well, my other sister that’s here visiting with me this week, we had called her on the weekend I stayed with her. We had called her on Sunday afternoon. noon and after we got done talking she was she was confused because she she thought she thought she’s gonna have company and yeah and she just said how many people or something how many people or and I said no it’s just the two of us and then her husband my brother-in-law was going to come home at 5 30 26 or something like that but then again she just she had forgotten of course she her time is you know time doesn’t mean anything no time does not mean anything after a while right no all it it kind of blurs into one big long period of time for the person so what i hear you saying helen is that um it seems to me like you’re struggling to understand how to navigate the confusion and the questions. Is that accurate? Yes, I would say so. Okay.
[10:01] So, go ahead. Okay. Sorry. Sorry, I interrupted you. That’s okay. No, it’s okay. I was going to say that Sunday afternoon, she looked, well, I had put the supper in, and she kept looking at her watch, you know, five after four, or whatever.
[10:18] Seven minutes after four, 10 after four, about every, and she just, you know, again, she was, she was, was wondering, is anybody coming? Is anybody coming here for supper? And she mentioned that again. And I said, no, there’s just the two of us. And again, I said that her husband, my brother-in-law was going to come home at 5.30 or shortly after.
Understanding Anxiety in Caregiving
[10:40] So was that conversation frustrating to you? Were you, are you looking for another way of trying to have communicated with her or how can I help you today? Well, I just wondered how I can communicate. But anyways, a thought came up to me. She likes music. And when we go to church, we had gone to church that morning. And of course, she keeps time with the music. I know she likes it. And I’ve heard before that and I’ve read or something, you know, maybe you had mentioned that the Alzheimer’s patients like music and of course, she keeps the time, right? And so we started, I said, let’s sing. Oh, that’s a wonderful strategy. So she agreed to it, and that helped pass the time. And one of the choruses that we sang, we sang a couple of hymns. And of course, she couldn’t get all the words, but that was fine. That’s okay. I can’t get all the words always. No, I can’t either, because we don’t sing the hymns anymore. We sing choruses. Anyways, I suggested another chorus, and of course, there’s two lines she couldn’t get.
[11:43] Anyways, she said, can we sing it again? I said, sure. Can we sing it again? She said can we sing it again I said sure no problem so we must have sang it about 10 times and she still couldn’t get those two lines so I tried to do a little actions it’s I don’t know if you probably know it’s I just have she couldn’t get the word h-a-v-e and she couldn’t get and she couldn’t get the word s-e-e-n seen and then she couldn’t get the ears have heard she couldn’t get the h-a-v-e again and she couldn’t get the heard but anyways as I say we must have sang it about 10 times and that helped pass the time and she did she forgot about a watch well there you go so you did a really good technique called distraction okay you distracted her with something else so a couple of other things other ways of doing distraction or um getting a person kind of think of a broken record right when a person’s asking the same question or they’re They’re doing the same thing looking at their watch. It’s kind of like a broken record, right? That’s stuck.
[12:43] Kind of in a little loop. And so by engaging her in an activity like you did, the singing, or if there was a simple task that she could do with you, like maybe you go and get some towels out of the closet and mess them up, but don’t let her see you messing them up. You mess them up in another room so that it looks like laundry, and you say, hey, sis, let’s just fold the laundry together and just do something with her, something repetitive, something that she’s done for her whole life. Knife it could be as simple as taking knives and forks and sorting them into knives and forks or you know if the food was in the oven and you didn’t need to cook still you could say it’s summer right now still you know it’s still warm you could maybe say let’s go for a little bit of a walk and to just distract the person oftentimes when a person is asking questions over and over or they’re checking their watch.
[13:53] They’re anxious because she might have been wondering where her husband is, not understanding when he’s coming home, or any of those kinds of things. So trying to go behind and finding the emotion and seeing if you can connect with her emotionally and not logically, right? When we go to logic, it goes into the left side of the person’s brain and the emotions kind of go more towards the right side of a person’s brain.
[14:27] So how you connect with her emotionally is she says to you, oh, I thought we’re having somebody come over for dinner. Instead of correcting her, you can say, oh, well, that would be nice. Who would you like to have over for dinner? Just get her talking.
[14:44] Open-ended questions, it doesn’t need to be right. It doesn’t matter, right? So just like you did with the words in the chorus, it wasn’t important that the words were all right. It was that you were singing and making a connection. And so if you can get her to talk, if she says something, thing. Tell her, well, tell me more about that. Just a very simple state. It’s my favorite thing to say. Well, tell me more about that. And just get her talking. And every time she stops, you just say, well, tell me more.
[15:24] Or that’s interesting. Give me some more. And so you’re not really asking her to answer a question where she has to think through and pull something out. About whatever is in her head will just come out. And you may get some wonderful stories that you’ve never heard before from when she was a child or when you guys were children. You know, she’s older than you. So she might have stories about you when you were little that you’ve never heard before. So if you can get her talking, that can be a way to engage with her. How does that sound. Yeah, okay. We did, well, when we’re eating our meals, like they have plates up across the, up above their china cabinet. And I did mention like how beautiful they were. And we talked about that a little bit. So try to, you know, and then pictures that were on the wall, talk about that. Those are great strategy and you’re doing such a good job. And what a blessing you are to your sister. And what a blessing you were to your brother-in-law so he could go away.
[16:35] Right. And I’ve gone over a couple other times in the afternoon so he could do errands or something. Well, that is awesome. I am so glad you came and asked those questions. And thank you for sharing your story with us. It’s very courageous to, I know for a lot of people, it’s scary to come onto a podcast. So I’m very proud of you, young lady, for being willing to be here and to share your story with your sister. And I appreciate that tremendously.
Strategies for Managing Care
[17:06] Well, thank you very much. You are welcome. Are you feeling stressed as a Christian dementia caregiver? Let me help. I offer a monthly dementia care audit to one listener of this program to provide you with personalized but evidence-based strategies from a biblical perspective. We only have one session available each month. Don’t miss this opportunity to make your dementia caregiving journey easier. Schedule your own dementia care audit today.
[17:48] So let me hear from Miss Deb. Miss Deb, how are you, young lady? Trying to get my picture, my framing better here. I’m quite stressed, Lisette, I gotta admit, but I’m going to make the best of it here. Okay i know you and i have spoken before deb but you gotta forgive me it’s been a hot minute so i hear no problem well you and i and my sister spoke several months ago okay i don’t i should have looked it up how long ago but things have changed but it’s been a bit it’s been a bit yeah and i think um that point i think my sister whose name was terry okay i think we were consulting with you about the situation where my dad was living with his girlfriends, and we were trying to strategize, you know, getting them to talk about what they might like for, you know, living, healthcare arrangements, if they can’t live independently anymore. Well, things have radically changed since then. Okay.
[18:54] Whenever that was, they continued to be hesitant. They didn’t really, we never got to a point where they really helped figure it out. So then beginning of June, my dad had a procedure, medical, he had a scope that he had to have done. So my sister Terry went with him and it went fine. They didn’t find anything and they came back home and my dad fell. hotel.
Navigating Family Dynamics
[19:22] So my sister could not pick him up. My dad is 6’4″, and my sister is my height, only 5’4″. And so she called the EMTs. They came, picked him up. Okay, within an hour, she said, Dad, stay put. Well, of course, he didn’t. And he got up, and from the other room, she hears this big crash, and he fell on top of his walker and then onto the floor. So she called the ambulance this time and they brought him to the hospital checked him over nothing he didn’t break anything just some bruises and you know he had been a fall risk for a while you know he had been finally he gave in to using his uh little rollator walker that i gave him he started at first he rejected he’s like i’m never gonna need that and then he started loving it right so anyway um they kept him in the a regular hospital for that week. Then by that Friday, they transferred him to a nursing home slash rehab facility. And, you know, he started doing PT and OT. Now, as far as his cognition, he was doing, I don’t know how to really quantify it, but he was doing okay, you know. But then they started, I think they put him on a few more medications.
[20:40] Trazodone was a disaster. sister that gave him hallucinations we said please take him off that and don’t give it to him again they made a boo-boo and did again and he had more hallucinations and thought the hospital staff was torturing him but we’ve been good now for a couple months so in the rehab facility he’s he’s a very my dad’s very charming very social so he’s making a lot of friends he’s friendly however two major Number one, his girlfriend said he cannot move back to her house. So he had been living there for eight years. They’re both the same age, 89. And she’s saying, no, I’m concerned that I already couldn’t take care of him enough. I can’t let him come back here. She was not, you remember, I don’t know if you do remember, we were talking about whether they could get some live-in help. She’s continued to refuse that. No live-in help. No one’s going to live at her house. She owns the place. I recall that.
[21:44] Yeah. And so, and she mentioned, she said, oh, you know, your dad is starting to slip and I’m afraid he’s going to get violent. That was the other thing.
The Challenges of Change
[21:54] So, and she’s a petite woman too. And what we didn’t know until later on was that she was already working with her son to, she was already on several waiting lists for assisted living.
[22:06] And she was not going to pay my dad’s way because my dad does not have a lot of money. She does. And I remember that. Yep. And he had been living there rent free. He would contribute to certain projects. So, and I think her kids were contributing their opinions about the situation. Sure. So then the other major thing is that dad has started to really nosedive with his, I’m going to call it dementia.
[22:31] We have a medical report from last week at which point they said he has only, I don’t have a copy of it here, something like 10% cognitive ability and he can no longer make his own decisions. So my sister is the healthcare proxy and now they have of activated that. Okay. Okay. But meanwhile, I’m feeling so badly for my dad because he’s, he is thinking that he’s moving back to Nancy’s. I understand. And we, and I just heard what you said too, and I’m sorry, I’m forgetting the other woman’s name, Helen. Helen. Yes. Right now, you know, distracting and, and asking questions and let them be on their track. Um this is part of the strategy i think that i want to try to understand better so um we had a meeting at the nursing home last week so he’s been in there since june 7th so what’s that july august it’s been about 10 weeks i think 11 coming up on his 100 days under medicare.
[23:41] Oh is that what it is so um if he was still under the skilled nursing part your dad has medicare correct yes do you know if he do you know if he has traditional medicare he has what’s called well care okay so i don’t remember just medicare replacement policy that well care is uh it’s still medicare and they follow medicare’s rules but it’s not traditional Medicare. When did you say he went into the facility? June 21st? No, he went into the nursing home June 7th. So about a month ago, they said he was ready to be released. They said that he had reached his plateau and they, I think they were saying insurance was no longer going to cover him to get the PT and OT. Give me one second. Sure.
[24:36] So he’s been in the facility for 77 days. No, that’s wrong. Something’s wrong. I can’t do math. 77 days. So the way Medicare works is a person is allotted in the United States up to 100 days in a skilled nursing facility under their Medicare Part A benefits. The caveat of that is what they were saying, that he has met his maximum potential, right? So what they’re telling you is this is the new normal. We’re not saying when we, and I’m putting my therapist hat on, not my coach hat, but when the therapists say they’ve met their maximum potential, that’s usually indicating that they’re getting close to where we think their new baseline is, or they’re not making big noticeable changes that insurance will cover. However, people often continue to slowly increase and improve, but it takes such a long period of time that there’s nothing that we can measure. And so insurance doesn’t cover. Well, and what happened, Lisa, was about a month ago, they were ready to release him. Mm-hmm.
[25:55] And because he doesn’t have a place to go, although he keeps saying that he does, then they’re keeping him there. You know, they’re letting him stay there. And then last week we had a meeting. That was the point at which we got the document that said he’s at 10%, whatever you call it, basically capacity.
[26:13] And that the health care, my sister’s already power of attorney. That also happens since we spoke. Durable power of attorney. And that was already in effect we already thank god we got some paperwork done on that shortly after he was in the nursing home i think it was maybe still in the hospital but i think nursing home so then um you know we are again we’re in massachusetts i don’t know if you remember that so we’ve been advised to apply for mass health which is medicaid correct and with that if he moves to a place where he can have services brought in, where he will have access to like having food cooked for him in a home environment where there’s maybe an HCA or something. I mean, like an ALF, an assisted living, a Medicaid facility, something like that, then, you know, we’re signing up for that. So the part that’s become really stressful, and I know this is being recorded and I have to parse your words. It’s okay. Yeah. I have to be gracious in how I talk about it in case my sister sees this recording, which she probably won’t because that’s part of the problem. She won’t come to these things. I kind of forced her into doing it the last time. So she’s in charge of dad’s money and his decisions, at least.
[27:41] I mean, yes, now, now medical and everything.
[27:44] And she freely admits she doesn’t really love my dad. She hasn’t be a love for him. I do. And I, and I do want to help him. I do want to see the best for him. I visit much more often, although.
[28:00] So Terry and I, we go through ebbs and flows of working together well, and then she slams me for something. And what’s happening is I’m homeless.
Finding Your Own Stability
[28:10] That happened since we spoke to you. I faced a no-fault eviction back on April 4th, had to be out. And I’ve been, like, I’m sitting here in my car because I just registered for this campsite. I’m going to be camping out tonight.
[28:26] I was couch surfing. I’ve house sat, but I’m homeless. And Terry sees no responsibility or obligation to help me whatsoever, which is very hard. It’s very hard. Can I ask a couple questions, not to interrupt you? No, go ahead. So you have a short-term and a long-term problem, both you personally and dad, right? The short-term problem is when his insurance, when his Part A benefits stop paying because he’s met his maximum potential, your choices are he has to go somewhere else or he becomes private pay in the nursing home until his Medicaid kicks in. Yeah, so my sister’s the one paying the bills, right? And she had spoken to them to realize that they allowed her to pay the Medicaid, the MassHealth.
[29:30] Uh fee that the rate of i think 1200 a month maybe 1500 as if he’s already approved because we’re we’re this close to getting him approved what we had to do right they required us to talk about his death benefits and to set that money aside before we had to include that in the application and terry i think she submitted that at this point so and we’re pretty sure he’s going to be approved and then that rape. So just today, anyway, you want to ask more questions? So we know for temporarily, we don’t have to worry about them kicking dad to the curb. I think you’re right about that. They’re not talking about it anyway. Okay. So there is a plan in place for your dad. Do you know if the plan is going to be for him to continue to stay at the skilled nursing facility or are they going to be looking for like an assisted living level of care. So I don’t know if this is true in all states. You’re what, in South Carolina?
[30:32] We have what’s called area agencies on aging. Is that true in all states? Okay. So dad has been in, he was living in Westford, Mass. Now he’s in the facility in Chelmsford, Mass, which is Eastern. My sister is in Western Mass, which is where I am right now, which may change within 24 hours because I have a friend I’m waiting to hear from in Southern Maine staying there. So, but they have an area aging agency on aging near where my dad is. And then we just realized through meeting with her that she can network. They share a computer database with the agency out here. So what’s happening is we were working with her and her agency that she’s helping find the housing. She knows that what’s really tricky is that dad continues to, I’ll tell you the story from today in a minute, which.
[31:30] To me, it indicated a new chapter in the dementia, a new level of hermit. So we’ve been like, well, should we let dad live near Nancy because she’s going to an assisted living that’s still in that area? Or do we make sure we get him closer to us, at least Terry, so that we can help take care of him? Or are we going to meet with dad’s resentment that we pulled him away from his girlfriend? And honestly, I know I can say this knowing my dad will never see this video. He’s slipping so rapidly that I don’t know how soon he’s not going to recognize us. He’s already starting to call me by my mother’s name. And she passed eight years ago. um because i think based on what you have told me about nancy is that she sees this as an opportunity for a break and i do think that her kids who are i guess in their 60s they may be really pushing for that they and meanwhile i we tried to talk with them and they’re just very um The reality of the matter is they were not married. He has no legal rights with her.
[32:51] Her children are going to protect her. And I’ll be the bearer of bad news. I think that boat has sailed.
[33:02] I think at this point that you’re absolutely right. And I just feel really badly for my dad because he’s a combination of.
[33:13] Expressing how confused he knows that he is about a lot of things and he’s heartbroken right you know and i and i understand that and i feel for him related to that but now i want to talk to you from the caregiver side i’m the daughter of somebody who is going through the side because they were not married and he has no legal rights and she is not going to provide him with the level of comfort that he has become accustomed to in living with her, the decisions that you and Terry need to make have to be from what’s best for the two of you in order to take care of your dad. What’s interesting, she is not going to be a part of this solution. She is not the healthcare provider, a proxy. She’s not the durable power of attorney or anything. So there’s in essence, since a clean break. Even though she’s not deceased, you can almost see it as if she has passed away.
A New Chapter in Caregiving
[34:14] And this is not an option for him anymore moving forward. The piece that we still need to deal with and the reason we have to do our best to be gracious to her and her kids. We did clarify from my dad’s attorney. Remember we have that lawsuit he had with my other sister?
[34:33] That’s resolved by the way that’s done so again i want to be careful what i say here but he’s going to be getting a portion of money from that right but until until that happens yeah medicaid is his best protection right his his best way of of having a roof over his head The questions that you need to consider, this is homework for you to keep in the back of your mind, depending on how much that settlement is, it can throw him out of qualifying for Medicaid. I know. And so my sister is very, very aware of that as she’s filled out the paperwork. And at the point she did submit the paperwork, she said he did not have other assets because he didn’t. Right. And the money has technically not been dispersed. But what you could consider is talking to an attorney and seeing if it can be put into a trust. It is. That’s what we’re doing. That’s what we’re doing. So you can continue to protect that asset for his benefit? She is saying that it’s too late. That ship has sailed. The fact that the money was within his control means that they’re going to count it as part of that five-year look back? Probably.
[35:56] We’re just buying our time. So the other part of this is, and the part that I’m here tonight, well, there’s a lot of reasons I’m here tonight. I’m happy you’re here. Thank you. Thank you. It’s been very, very daunting, very stressful. And I am here as a Christian, knowing that God’s in charge, and I’m just trying to figure out what the plan is and what lessons I’m supposed to be learning. Um is is there any possibility to solve the problem of your housing needs as well as your dad’s housing needs that for you to talk to your sister about setting him up in a small apartment where the two of where you can provide care for him or is his level of care to the point that it’s not safe or feasible for you. That’s what I was going to bring up because, and this is where I need to try to be gracious while I’m here being recorded because my sister, let’s just say she’s the golden child. I understand I’m the scapegoat. And that’s been a dynamic for a while, you know, parents with narcissistic personalities. So I.
[37:13] Dad’s the lesser narcissist, but what’s happened is Terry has been dangling the carrot over the last few months, even sending me property listings saying, let’s buy a property when dad gets his money and you guys can live there and we’ll get some CNAs in and other people to help. Yay like you said it would solve both of our housing problems at the same time then she’s pulled the rug out from underneath all that and has been very disrespectful of me in the way she’s viewing me and my um let’s just say status in the situation there’s a lot of resentment there’s a lot of sibling rivalry and it’s very difficult because if it weren’t for dad and his need for help at this point, I’d be walking away. I understand. My own sanity. I understand. Yeah. And so she’s taunting me, in my opinion, taking me on just baiting me to say or do something that’s going to get me taken out of the equation. And that has a will that, you know, we’re putting this trust together. I mean, pretty much, you know, there are provisions, but she’s not making it easy at all. And it’s, so I’ve been wanting to move to Maine.
[38:32] She’s in Western Mass. And if dad goes closer to her, it’s more difficult for me. So now I have to think, all right, while dad’s alive, and I’m the one that really enjoys his company and wants to nurture and support him. She wants no part of that.
[38:49] She’s just the money person. She works for a bank and that’s kind of her mindset. Do I need to change my plan? And what if dad lives another 10 years? So what I would counsel you, what I would coach you is my whole premise, my whole view of dementia caregiving is it is not at the expense of you.
[39:12] And deciding how to define that is the tricky part. Well, but the reality and, you know, have you ever heard the expression, fools rush in where angels fear to tread? I’ve heard it. Explain in this context how that applies. So sometimes I say things that other people might not say. I’m pretty direct and pretty blunt, but it comes from a caring perspective. It doesn’t come from a, I’m setting out to hurt or harm people’s feelings. But as in the years that I’ve been doing this, I have recognized one thing, and that is I cannot help people if I’m not willing and able to tell them the truth that they don’t want to hear. Okay? So the reality of your situation is that you are not the decision maker. Your sister is the decision maker. She drives this train, whether you like where she’s driving it and if she drives it off a cliff, unless you go to court and try to take over, you know, power of attorney and all those kinds of things and fight her, which I wouldn’t recommend, your options are limited related to making the decisions.
[40:35] And the crux of what I’m seeing right now is that, is that, And she’s said, well, are you going to bring dad to his medical appointment Friday, which is tomorrow? And I said, well, you know, I’m still fighting for, I’m trying to find another place to live. Right.
[40:52] And, you know, it’s like, she’s holding me to this high standard of continuing to go like the little engine that could. And you know she’s got a job she’s got two homes she’s got a husband she’s got kids everything’s all set and pushing me and to the brink and so I question her challenge her criticize her it’s right there for me to be cut out of any of the financial part so it’s yes she’s the decision But she wants me to be part of the decision making. I have continued to be, but it’s under a lot of duress and a lot of emotional abuse. Use but you you brought up a valid point if your dad lives another 10 years yeah what does your life and your health and your future looks like if you are not able to move forward yeah we know a few things your dad is going to be taken care of because he now has medicaid and he’s on the verge of it yep right they will they will either keep him in the nursing home if his level of care is not to the point that he can go to an assisted living.
[42:06] If he goes to an assisted living and he doesn’t succeed there, then they will consider a memory care or another nursing home. So we know that your father, it’s not optimal. It’s not ideal. It’s not what you would have.
[42:23] Probably chosen to do but it is the reality right so we know he is taken care of now we have to look at deb and deb needs to take care of deb and if that means moving to maine maine and western mass are not that far apart you’re not on the other side of the country two it might be two and a half to three hours right you’re you’re still within a drivable distance you may not be able to be boots on the ground, but you can continue to support your sister.
[42:57] You can tell her, you know, I support you wholeheartedly in your decisions and not like, I’ll use my sister and I as an example, we have a good relationship. So it’s not the same dynamic. You remember that I know your sister in person. Yes, I do. Well, she was just here in Greenville from New Hampshire, her, right? So she came down here for the weekend. And the benefit that my sister gives me is she does not, the way she supports me is she supports whatever decision I make. So the way you can support your sister is supporting whether you agree with her decision or not, supporting her decision,
Prioritizing Self-Care
[43:40] because we have to be gracious and say she is doing the best that she can. She is making the best decisions that she knows how to make in this unusual and difficult situation.
[43:55] He appointed her or somebody appointed her as that decision maker. So now Deb needs to take care of Deb because winter’s coming. You need to find a place to live. You cannot live in your car in Massachusetts in the dead of winter. So you need to strongly consider, as hard as this is, letting it go. Yeah.
[44:22] And focusing on you, because if you can get your feet under you, if you can get your solid base again, then you have a basis with which to come back. Exactly. And continue to then step in and help. You can only help someone from a full glass, not an empty glass. This and so you might just point out uh a point in fact terry has had me come to her house to couch surf i mean sleep in a bedroom for like a week at a time twice now and promptly kicked me out when she felt we had some kind of a little disagreement that didn’t sit well with her i was booted right out right out and it just happened last week right so it’s it’s beyond just sort of the decider you know the decision maker but it is it starts to be a little abusive so i hear you and i’m writing it down that what i want you to consider deb and this is the hard part this is the really hard part yeah you cannot change what somebody else chooses to do you cannot change what your sister decides or doesn’t decide to do only change how you respond to what your sister does Yeah, and it’s not always a good response, I might admit to.
[45:46] What you could really consider working on is almost not rising to her bait.
[45:54] Because I had a conversation with a friend of mine. She’s in my community. She’s in my coaching community earlier this week, actually yesterday. And she has a similar situation. Her mom lives with her and her brothers are not involved. And there’s some dynamics, some sibling dynamics. And what I told her was, as a Christian, we are required and mandated to be willing to forgive somebody should they ask us. But that doesn’t mean that we forgive them until they ask us, right? God requires us to ask for forgiveness before he forgives us. Forgiveness isn’t just, oh, I forgive her in my head and she’s forgiven, right? If your sister were to come to you and say, Deb, I’m so sorry, I did wrong, right? And that is not going to happen, Lisette. I’m just saying, if that were to happen, your foster needs to be willing to forgive.
[46:58] But until that happens, you don’t need to forgive. And the reason I bring that up is because if you get to a point where you are willing to forgive somebody in a situation like that, your anger, your animosity, all of that, all of a sudden magically goes away. And so just remember that in this conversation. I will pray for you. You have a tough situation.
[47:27] I coach you. I advise you to focus on you and get your feet under you. You cannot serve and help your dad. and, unless you’re in a position where you feel safe, where you have a roof over your head, where you can continue to move forward. And that doesn’t mean that you’re not involved. That doesn’t mean that you don’t care. It just means that providentially right now in your life and in your situation, this is the way it is. And so get your feet under you, put support around you, and then we regroup again in the future and we see if there are things that we can do differently to then go and support your dad your dad is being taken care of yeah he’s done still recognize me he still does look forward to seeing me good um and then you go and you be as involved as you were able to be yeah it cannot cannot feel guilty for not doing more i have put you in this particular situation for whatever his reason is. Yeah, exactly.
[48:39] And he knows that you’re not able to take care of your father. Your father is being taken care of. His physical bodily needs, he’s not sleeping under a bridge. He’s got food in his belly. He’s got a roof over his head. He is okay. Now we need to take care of you. And I might add that he’s not, I can tell you what happened today, if there’s still time, because it does get into what strategy you suggest in the communication with that. But before today, I would say that he did not.
[49:14] Every once in a while, he’d say, I need to get out of this prison. But it was fleetingly. And otherwise, he seems pretty content there. And he is friendly. He takes walks or, you know, he strolls in the wheelchair and goes down the hall and says hi to everybody. And everyone seems to like him quite a bit. And I’ve been friendly with the nurses because guess what? They’re African. And you know, I have a rapport with the Africans.
[49:38] You’re South African, right? Yes, ma’am. And these are Black, mostly East Africans, but I have a rapport with them. So I am also, by showing up and being friendly with the staff,
Effective Communication Techniques
[49:50] especially the nursing staff, I feel they’re probably going to do a better job with my dad. For sure. They’re going to care more. I mean, they already care. So there’s that. Is there time to ask you more strategy on communicating with dad? So the best strategy with your dad, I would do the same thing that I told Helen with her sister, is go for the emotion behind whatever it is he’s saying. If he says, I need to get out of prison, well, dad, tell me more about prison. Yeah. Or tell me more about it, right? Yeah. So just meet him where he is. You know, probably the biggest advice I could give you is be cautious not to get riled up by your sister before you go see your dad. Oh, yeah, yeah, yeah. Because he will sense that emotion first.
[50:46] From you, if you’re frustrated or angry or tired or annoyed or worried, whatever that negative thing that is, we’re fretting because we don’t have a place to live. All of those things are valid, right? I’m not saying they’re not valid emotions. But if you can tamp them down when you go see him and really just, I call it fake it till I feel it, just be upbeat and friendly and kind of wind yourself up a little bit. Like go talk to the nurses that that you like from africa and just really banter with them and just get just get into that positive headspace before you go that’s what i do yeah yeah you have a cheerful a little bit of twihili with them you have a cheerful disposition so thank you well i admit lizette that when my dad before he slipped even more within this last week i I admit, I gripe to him about my sister. He knows the dynamic. He knows it’s going way back.
[52:02] But I’m realizing that he’s not capable of having, he’s not able to process the information anymore. He can’t be that barrier between the two of you anymore. So I realize I need to go elsewhere for that. And now here’s the other logistic problem that’s happening. And I don’t know if there’s any solution except to live closer to where he is. So his hearing is getting really, really bad. And so as of yesterday, apparently he got it in his head that he was, his job was done there at the nursing home. He says, my job is done here. He told my sister this, and he told me this in separate phone calls and that.
[52:45] He’s got his bags packed and he’s ready to go back to Nancy’s because she has a job to do and she can’t do it herself and he needs to help. So this started yesterday and today he’s called me like 10 times saying, I’m ready. My bags are packed. Deb, can you come pick me up to bring me to Nancy’s? I’ll be there as soon as I can. What’s that? I’ll be there as soon as I can. Is that what I say? You didn’t lie because you will be there as soon as you can. As soon as you can is going to be three weeks from today, right? The problem is with dad’s cognition. All right, remember, he was Army intelligence and he was an engineer. If there’s anything dad remembers at this point, it’s the timeline. And if I say I’m going to be there after lunch. But you’re not saying I’m going to be there after lunch. No. Yeah. You’re saying I will be there as soon as I can. And he calls you back 10 minutes from then. And he says, well, when are you coming? Dad, I will be there as soon as I can. I love you. I will see you as soon as I can. So here’s what’s happening with the phone calls is hearing is really bad. I have EMF sensitivity. I don’t know if I mentioned that. I shouldn’t even be on the cell phone any more than I have to.
[54:08] I’m shouting so he can hear me. He’s not hearing me. He gets frustrated. I want him to hear me say, Dad, I’m going to call the nurse. I’m going to find out.
[54:20] What’s happening and if they’re going to let you be released. And he’s not hearing me now. So here I am physically two hours away and I feel badly and I’m calling the nurses. I called the supervisor today and I said, could you clarify for my dad that in fact, you guys just told us you’re moving him tomorrow to the other wing. And he’s getting that confused with moving back to Nancy’s. So what I would caution you is to talk to your dad about being released or moving or anything. Okay. Don’t go there at all. Don’t go there at all because in his mind, he’s moving back to Nancy’s. So the confusion about it’s time to go to Nancy probably has to do with, he heard them talk about him being moved from there to another room. His desire is he wants to go to Nancy’s. So he’s putting the two pieces together. Reasoning with him about that is not going to change his mind. So I would not talk to him at all about that at all. Okay. So just, I’m going to be there. I’m actually going to see him tomorrow. And then when you leave, dad, I’ll see you as soon as I can.
[55:39] Don’t give him a time. Don’t tell him when it’s going to be. Just tell him, dad, I will see you as soon as I can. Well, when’s that going to be, Deb? Dad, I will see you as soon as I can. I love you. I will see you as soon as I can. And then sometimes you just have to walk out the door.
Closing Thoughts and Future Sessions
[55:59] Okay? Well, ladies, thank you so very, very much for being here. This was a wonderful conversation. I am so proud of both of you for being willing to be on the Ask the Dementia Coach session. These sessions, they are always going to be free and you can come whenever you want to. They’re once a month. Once a month. Okay. So they’re once a month and you can sign up for them. Obviously, my stuff’s not ready for the next one. But if you want to come to the next one, just shoot me a message or email me and I’ll let you know what the date is. I can tell you what the date is because it’s going to be in September, which is my birthday month. It is going to be on my birthday, the 19th of September. Wow. Cool. All right. Welcome. Thank you so much, ladies. I will be praying for you. Deb, let me know what I can do to help. Okay? Thank you. Thank you. Hello. Thank you for joining us. I’m very excited to have meet both. Well, I’ve met Deb before and Deb next time. It’s not been so long. I will remember the story. Okay. Thank you. Bye.
