Dementia Caregiving Advice with Bill Cohen
00:00:02 – 00:05:02
Welcome to fading memories, a podcast with advice, wisdom, and hope from caregivers who have lived the experience and survived to tell the tale. Think of us as your caregiver, best friend. Now you can join important Alzheimer’s disease research from home in minutes with picnic health. Go to picnic, health, dot com slash memories to sign up and get $25. What does picnic health? Well, picnic health collects and digitizes all of your medical records into one online account. Then, you can consent to share anonymized data from your records with medical researchers. By examining this real world data from medical records, researchers can find answers that can’t be found in clinical trials. There is important information in each person’s unique healthcare journey, so share your story. If you care for someone with Alzheimer’s, you can sign up on their behalf and manage their medical records in a picnic health account. Learn more at picnic health dot com slash memories and get $25 when you sign up. Find the link in our show notes and on our website. Finding Alzheimer’s and dementia support is almost as challenging as caregiving itself. When learning of the diagnosis, most families find themselves searching for answers and support. Many of us turn to books or the Internet, some podcasts, others turn to social media, looking for a community to support them. Imagine if you knew in advance what to plan for and what to expect. How much easier would your caregiving journey be if you’d already known someone who has experienced what you’ll be experiencing? If you don’t know where to get help or support this episode is for you. My conversation with Bill Cohen is specifically on caregivers turn dementia caregiving, support people. I believe you’ll find that Bill and I have a lot in common in our respective journeys. With me today is Bill Cohen, he is from the Cohen caregiving support consultants and he is going to not only tell the story of his mom or also going to talk about some tips and advice for those of us that might be at the earlier stages of disease and or caregivers. So thanks for joining me Bill. I have been very excited to be able to join you today. Thank you. Awesome. So you ended up caring for your mom. So why don’t we start with that story because it is I’m assuming it’s very interesting. You’ve just told me tidbits, though. And such a story that if you had told me 1617 years ago, what was going to transpire and I was going to end up sitting here talking to you today and doing what I do now, I say you’re crazy. You couldn’t make up this scenario. So I mean, we were just talking before we started this about making plans, right? So I’m working full time. Here in Portland, Oregon area, my mom was living in beloved scene Mississippi, and she’d been living there almost 30 years. So around 2004, we started notice something was off. Something was wrong. We didn’t know what. But she wasn’t taking care of the finances. She wasn’t taking care of the house. She was showing some signs of confusion mood swings as that type of thing. She was also in the caregiving role herself for my late stepfather with all kinds of conditions he was actually on and off in hospice. So we were wondering if he passed away or went into a care community, would mom, Sheila, pounce back, we never got that opportunity. What happened in August 2005, 16 years ago this past month on the Gulf Coast. Little winder, some rain or something. Yeah, Hurricane Katrina. And the storm surge was so bad on the back bay of blossom that is swept her house away. She fully expected to come back to that house and the trauma of seeing it gone. Accelerated and exacerbated her condition. So she was safe. She had evacuated, but she ended up moving out to our step family to North Carolina with my stepfather. And I started doing the cross country caregiving and visiting with her taking care of some from medical and legal things. I started attending a support group or talking to a care community here in Portland that I eventually wanted to move to. And she did end up staying for a couple of years also with her sister in Delray Beach, Florida.
00:05:02 – 00:10:09
Mudra out here in 2008. It was about 5 years about a year in assisted living and then four years in memory care. And she passed away 8 and a half years ago at age 83. So, and then with me, after that, you know, most people when they are caregivers, when they’re done, I’ve done my thing. I’m exhausted. I need to hear myself and would walk away and say, I’m finished. Well, I kept going to that support group. Make a long story short. I became the facilitator. I’m still facilitating 16 years from when I started. And doing the volunteer work, including the walk in Alzheimer’s. And I was remarking about your beautiful requirements garden behind you. I carry the purple flower from my mother. And other fundraising and advocacy at the capitol. Let us say approached retirement from my state job after 25 years. I thought it was just going to do more volunteer work. I came across this concept of care giving support consultant, which we can talk about more. But essentially what happened was I turned my personal loss my pain into my passion and my honor career. That sounds familiar and I laugh because I also still attend my support group. I did miss last night because it was my anniversary. And I’m a little bit more hit and miss these days just because it’s getting a little old to have to do it on Zoom. But I am able to give a lot of good advice because I talked to so many people like yourself that they have asked me if I would do the facilitator training. Yeah. So I’m like, oh no, I’m following his footsteps. Probably would be very good. They wanted me to do it here because we are probably more than like, it’s the plan is to move about two hours away. I have not heard back from the gal who’s in charge of the training. So I might have to nudge that. Let’s see what happens. I did tell them I will be coming back to this city regularly for my hair appointment. I can manage to coordinate those together. My daughter will still live here, so I’m not like abandoning town and never coming back. But I do see a need up there because everybody I know it’s moving up there doesn’t happen to be that young. Not old yet, but we’re all in our 50s, 60s. So it’s something for them to think about. So I don’t know where that’s going yet. And the word very a lot fewer support groups back then the one I went to that continued was the only one at that time in the evening during the week. Rather than a week as I was working I needed that. And then I started another group for a nonprofit across the river Vancouver Washington, started the first one south of the Columbia river. And that’s a weekly one, and I’ve been doing that one for about four years. And then I have a Facebook community to mention support for group for caregivers who would build Cohen and I have a monthly virtual support group. That one. And even though we’re going shifting back and forth between in person and virtual or hybrid, that one will continue to be virtual because I get people from all over the country joining me for that one. There are people in my group that have said weekly would be would be helpful. Right now, I mean, my group when we were in person, there was one time there was almost 35 of us, which was like, you know, you walk in and you’re like, I’m so glad all these people are here. And I’m so happy that all these people have to be here. It was definitely a too large. That’s a too large a group for because nobody really gets a chance to share as much as they really need. That’s true. But on virtual, it’s been about the same three or four people and some people need weekly might help. And some people I think need grief support because I’m not the only one that’s post caregiving. But, you know, when you lose somebody during the pandemic, I’m going to a funeral tomorrow in the following Saturday and yet my mom has had nothing. No. Celebration of life, no nothing. She’s not been interred with my dad. I mean, it’s just so irritating. And weekly feel. And weekly is nice because if you miss one, there’s another one the following week. Yeah, a month is a long ways away a long time. In between. But regardless, the bottom line is that a support group provides advice support knowing you’re not alone. A lot of good information. I just love how the people in all my groups will help each other out in a really good community and extended family and friends. Yeah. That’s why I wish they meet for many years. It becomes almost like their social group. And even if somebody again is in bereavement and those groups aren’t for that, but you can help others go through it like others help me as well and probably help you so you can even if you don’t become a facilitator, you can help others through their own journeys because of your own experience.
00:10:09 – 00:15:00
And I’ve learned so much from all these podcast interviews, I’m still learning things, always blows my mind is recorded one a few days ago and this girl had a suggestion like, nobody has said that. And I’m a photographer. I never thought of that. Oh, yeah, yeah. So I feel like if I’m still learning things, then my listeners are learning things and for better or worse, they’re still a lot to learn. So I’m going to try to pretend to know everything in my group story of my clients. Some of the best ideas come from the other caregivers. Absolutely. And I think that’s how you get the best ideas as being open to knowing you don’t know it all. So what is your opinion like early on in the symptoms of dementia? They’re normally they’re fairly manageable early on. So what do you suggest a care partner? How can they prepare themselves for the challenges that lies ahead? Because I have seen a lot of people, they’re like, oh, this isn’t that bad. This is manageable. And, you know, two, three, 5 years down the road. They’re sinking. They’re up to their neck in quicksand, and they don’t know how to get out. So how can we help people prevent that? And that is a dilemma. And it’s actually a two edged sort, because there’s some aspects that may be more manageable. But some people be a person is living with dementia in the early stages actually can be more difficult because they’re in denial or they’re fighting it or you haven’t maybe gotten a handle on the behaviors or medications to take care of things. Or depression, agitation, mood swings and things like that. So, and some people become more manageable as things grow along because ignorance is bliss. They get to a point where they don’t fight it. They don’t know what’s happening to them. But going back to the beginning is that in some aspects it is more manageable because if you are calm, keep them active, try to keep things as normal as possible, a lot of their favorite activities or hobbies or interests. They’re still the same person. They’re still there inside. And it just may take them a little longer. They may not do it the way you would do it. They’ll let that stuff go. Don’t try to correct them. I’m sure we have most of us have heard that. And just to think in terms of positive interactions, there’s a term from a caregiving course. Have you heard of the savvy caregiver class? I took savvy caregiver through the all Alzheimer’s association. 2019? Okay. Yeah. So my mom was at the end of her end of the stages by that point. So I always tell people if they’re early on, Lorne as much as you can. Yes. I think sometimes we would like to have ignorance as bliss because we really don’t want to know what’s the end is like because it’s not pretty. But that’s not going to serve you. So that’s always my suggestion. Yeah, it’s a very similar way. I was going to just say the term would be contented involvement to give them things to do that they would still enjoy doing. It just may take them a little longer and simplify it, set them up for success, bring it into simple steps and so they don’t get frustrated. Or mess it up completely, where they don’t want to do it anymore. But to look at not only for them with activities and not just rely upon TV, don’t want to just sit there, but keep them mentally active, socially active, physically active. Get them walking, bring them to the senior center bringing to a dull day care or respite that type of thing still see their friends. And as long and let them know what’s going on so they can interact and be patient because if they’re trying to do they have always done what’s wrong with him or they may end up not wanting to be around that type of thing. So not only do we have to educate ourselves and the Alzheimer’s association as you, I’m sure you’ll point it up as a wonderful resource as classes things online, et cetera. But also let family friends, neighbors, church, ex coworkers, know what’s going on and say, don’t try to correct me trying to say, don’t you remember? Talk slowly, patiently, expect those repeated questions. Expect us mood swings. Knowing that they’re going to come be prepared for it. You don’t necessarily have to react. You don’t even necessarily have to answer. But prepared for it and know that they’re coming. Don’t be surprised.
00:15:01 – 00:20:00
I like to turn the approach to maybe use that or heard of it is improv. Yeah, I need to find an improv professional reminded me that two people to ask because I think that would be a really fun episode that I think it would be really good training because I’m always way too much in my head. Even though I’m half artist, the practical side of me just had a really hard time with that. And I really, really wish I had learned that. So that’s hopefully for season 5, but here’s my example of that. So moms favorite question was partly because I wouldn’t take it anymore movies. The last time we went, she spent half the time in the bathroom. I could ask, are there any good movies out there? Or can we go see a movie? So I would just say as any movie that popped in my head. Titanic Casablanca, whatever it didn’t matter, one how old it was. One, she’s getting an answer. Two, it did no harm. Three she didn’t know any difference for I’m keeping my sanity inside. And 5, I’m having a little laugh inside of mops express. We’re gonna have to have to take her to see these movies that weren’t in the theater. Yeah, and she’d be getting it. Oh, okay. We’ll go see that soon. Yep. We’ll go soon, mom. Yeah, maybe next week. So that’s where I always got myself tripped up because I would probably I would answer. And I would answer as truthfully as possible or I might say something like, you know, there really aren’t any good movies lately. That’s really a bummer. Anything that would maybe discourage her for wanting to go. That was where the practical side of me was like uh oh. Last time we went to the movies, it wasn’t great. Not only was the movie movie horrible, but it wasn’t one that you wanted to go sit with your parents and watch. If you guys get my drift a little too much and yeah, I didn’t want to go there with my friend. I think the other, the other aspect to answer your question too is, yes, some aspects are easier earlier on because there’s still some physical ability mental ability to do normal things. But the blunt statement is our question is, do you think it’s going to get any easier? We know that we can’t fix it. We know that there is no cure or treatment yet. We’re getting closer. I know you’ve had guests on the talked about the advances, which is wonderful. I think we’re in a exciting historic time in terms of that. But it’s going to get more difficult. It’s not, you don’t want to have to react in a crisis. You don’t want to have to, because it’s going to be emotional. You’re going to have fewer options. Plan, prepare, be proactive. And know that these things are coming, and that goes back to learn as much as you can about what to expect. I pretty much would say, oh, this is happening now. Okay, next. Okay, I’m dealing with this now. I’ll see what’s coming up next. And I’d see those behaviors. And it wasn’t as much of a surprise. I’d have a better idea of what to expect. Still hard, still gut wrenching. Still emotional. This is my mother. Yeah. And it’s not better or worse or harder easier. It’s just different. Think about a spouse a partner and how hard that is to lose the most intimate relationship. And you have gone from spouse a partner, husband and wife to caregiver. I can’t imagine going through that. It was hard enough with my mom. Yeah. Definitely. I was really blessed. My dad was a buffer. My mom had Alzheimer’s for at least 20 years. And I only really had to deal substantially in the last three or four. After he passed away, it was three from when he passed away. But and he didn’t really want the two of us daughters to help, which was frustrating because he needed it. He had his own chronic illnesses. He had zero patients, which never helped, because she’d asked the question the second time and he’d snap at her and then she’d get mad and snapping and rain. I got like cats fighting them. You can’t really tell your father. That doesn’t work. Can’t you see this is not working, ’cause that’s not really gonna help either. So it was just it was really hard. But it was set an example and show how you interact. You handle her how you handle the person living with dementia and hopefully. But again, especially other people who, like other family members or friends, when you come over, this will be the best way to interact with those. Talk about old memories. Ask them questions about home or what trips do you remember? Things like that, which just goes back to the old thing about if they’re all upset about something like I want to go home. Well, tell me about home because it may not be the last time they were living it and may have been where they raised the family.
00:20:00 – 00:25:08
It might have been where they grew up. So ask, so where’s home? Tell me about that. What would you do if you went there? Type of thing. Said, okay, well, let’s go have lunch first and then maybe we can go swing by the house. By the time lunch is over, gone. Yeah. My mom never asked that question, but there were other residents where she lived that did. And sometimes they’d beg me. I don’t know if I looked like a sympathetic soul or a Patsy, but they’d be like, can you take me home and be like, and so I so it’s kind of in a similar nature to having to deal with my mom if she asked that question was I had the answer for them and obviously I couldn’t really take them anywhere. I did my mom had friends and memory care and it for a while was actually easier to take out both Diane’s, my mom and her friend. There was three of them. Diane other Diana and other other Diane. And if you don’t think that’s confusing, well, more power to you, because it was very confusing, especially when you talk to my mom about her friends. You couldn’t refer to them by their name because it confused her. It was just it was like just a joke. But it was easier to take them out in the earlier days when my mom lived there. And these other residents that I didn’t have like a relationship with, they would be like, sometimes they grab me and say, can you take me home? I need to go home and I’m like. Panic. So I learned that home is not necessarily a physical place. It’s a feeling of security, familiarity, things that are very difficult to give to them because their brain is not giving them security and stability and nice feeling. So that’s the one thing that I like to tell people is, you know, that might be what they’re looking for. And then I always say, but then say, oh, but we should have lunch first. And then if you have lunch and there’s still asking, okay, well, we need to do blah blah blah or hopefully they ask close to dinner and then you can say, oh, well, it’s too dark. Let’s go in the morning. So a lot of that distraction stuff. And this is kind of a controversial area in terms of some people say, oh, I can never lie to them, all right? I’m not going to lie to the people. I always want to tell them the truth and some people in nursing homes or care communities, et cetera taught that, don’t lie. And some people use the term therapeutic or white lives matter. I prefer no, it’s not universal. Compassionate deception. I like that term. I’ve heard a lot of them, but I haven’t heard that one. Well, in again, is there if it’s not causing any harm? And it helps keep them calmer. And you’re not just telling the whole truth, shall we say, like, when after the hurricane, I had to take mom to the hospital to get her on some nets because she was just completely agitated. Said, oh, we’re going to go see a new doctor tomorrow. Oh, okay. I was taking her to the ER. Gone if I had told her the truth? No. Not willingly. No, not willingly, but I was going to drag my mother there, right? So she went willingly. She wasn’t thrilled about being there once we got there. And I think she ended up being like a caged animal. We were in the ER for like ten hours. Oh, no, no, no. No, she got admitted overnight and got us some medication next morning. I get off the elevator. There you are, where have you been? My savior. She was supposed to be a nice moment. Yeah, it was. Because it was the worst night of my life, but that made it worthwhile. Now, there are some there’s some silver linings. They’ve got to look hard for them. When it comes to challenging, it’s emotional, but in other ways, it’s gratifying. Well, going back to the compassionate deception, I have and I don’t know if you’ve experienced this, but a lot of the younger, I hate this term. Gotta come up with a better one. Adult child caregivers, so like you and I, they really don’t want to lie to mom, especially the female caregivers, like myself and the younger ones seem, I don’t know. I don’t know how this got beaten into their head so much more than mine because you didn’t lie to my mother. But they don’t want to they feel really bad about it. And there was a conversation online one day where they’re like, what do you do? You know, if they ask about somebody who’s deceased, so I had to go, I went and told the entire story, but my dad. So I already said my dad had no patience and sometimes my parents fought like, you know, two cats and feet was never fun. So my mom would say things like, well, she thought I was her best friend. And for those people who might be new, haven’t heard this story before. I was almost a 100% certain she didn’t remember our relationship because I had lost a hundred pounds. I did not look like the person that I remembered. So if I looked in the mirror or it photographs them with wow, you can only imagine somebody in the later stages of dementia or Alzheimer’s.
00:25:08 – 00:30:03
They’re like, what the heck are you? You’re not my daughter. You look nothing like her, which was true. So I confirmed that she didn’t remember our relationship. When I showed up on my birthday, to have said this in November and the care community she lived in was having the family family harvest celebration for Thanksgiving. And I showed up and I told her that it was a special day. And they were having a party and did she remember why November 17th was special? No. Oh, it’s my birthday. Oh, really? Yeah, this woman does not remember that I am her daughter. Okay. Confirmation confirmed. That stuff with your mom doesn’t remember your birthday. Fortunately, I mean, it’s stunned a little bit, but I think because I don’t know, maybe a subconscious voice had told I knew, but that was just confirmation. So she thought I was her best friend and I would show up to take her out to watch kids, which everybody knows. That’s what we did. And she would say, have you seen my husband? No. Where’d he go? Oh, I don’t know. I haven’t seen him for a while. And I’m thinking in the back of my head, yeah, maybe like a year plus because he’s been dead, but I never, ever told her that he was gone. And that was the one place where I did pretty good with improv, but I wasn’t super creative. I always went and visited her after our rotary meeting. My dad was a rotarian. So I’d be like, oh, oh, he was at the rotary meeting and then he said he was going to go whatever. To the doctor or whatever. He’s off on a business trip. Yeah, I did say that, occasionally, one time she said, did you see him? And I said, no, do we need to go find him? She’s like, no. Okay. And so that was about the only conversation that I had that was definite Bologna. And I never felt bad about it, except for that sometimes it hurt because it’s like kind of be really nice build reminisce about my dad with my mother, but that ain’t gonna happen. So it did happen once and I don’t know about your family, but with my family, we always have those important phone calls. Conversations in the car when you’re trapped and literally we’re driving down the road and she starts talking about my dad’s. Oh, it was so sad when your father died. I was like, wow, almost crashed, ’cause it was so shocking. And it literally lasted two minutes, and then she told me how beautiful this guy was and I’m like, well, that was over. So in three years. One time. That was really straight. I’m like, I really wish you hadn’t hit me out of the blue with them. So I like to also use the take off on the my eyes load that they may not remember your exact name. They may not remember the exact relationship. How do you make them feel my mom never got upset when she saw me like, ah, who are you? Who is that recognition some affection some love? However, she was always a little confused and later years about the exact relationship because she always had one dominant male figure in her life. My grandfather, my biological father, my stepfather, and then it became me. And then she would sometimes get a little confused because again, I don’t look like little Billy anymore. And you can’t call me the link. She could. That she would sometimes have to benefit, are you staying here tonight? No, mom. I had to actually stop calling her mom because she would ask me, we’d be leaving her home. And it was always this tone of voice. Is my husband now where we’re going? Yeah. Yes, mom. Dad knows where we’re going. There was literally, I can not tell you. This is embarrassing. How many months it took before the lightning bolt finally struck my brain in the right spot. Literally walked, so her room was on the opposite side of the building from the exit. So from her room to the exit, she asked me that question three times. We get and so then there was like a little lobby of the locked doors and then the lobby and then the door to the outside. So literally between her room and my car, she asked me that question. 5 times. By the time I got to the car, I wasn’t sure if I wanted to slam her head into the trunk or mine, or both, or something. I was like, I’ve been with this woman ten minutes, I’m done, you know? Like, I can’t do this. And all of a sudden, the lightbulb finally went on like duh. I am not answering this on this question. She’s asking, does my husband know where I am going? So when I say yes, mom, dad, knows where we’re going. That is not the answer to the question. I’m a little slow sometimes, but then once I finally said, oh, yeah. Whatever. As soon as I started the answering her as her friend, she stopped asking me that question every two minutes, which was a very big blessing.
00:30:04 – 00:35:05
And I was very mad at myself for not realizing her. Or maybe I was I’ll give him a call, make sure he knows. And if that’s what was bothering it, that’s what was upsetting her that he may not know. What she was worried about was that he wouldn’t know where she was going. And he’d be angry because she wasn’t where he thought she should be. That was the situation because that’s why it was always that kind of snarky tone of voice. So it was like, but there was one other thing I was going to say, oh, about the feeling giving them the sense of feeling. So as long as the weather was reasonable, and even sometimes when it wasn’t great, we’d go to the library, but we always went someplace where we could watch kids. Thankfully, most of the time it was the park and most of the time since women Northern California. That wasn’t terribly difficult. But I had been this was 2019, so this was literally two years ago. My husband and I had flown home from Colorado. Anybody flown through Denver nose. Never get through there on time. We didn’t leave on time. So we got home at like 1 o’clock in the morning. Now, I am a complete daytime person. Sun up, I’m awake. Sundown, I am asleep. I’m solar charged. This is my husband’s joke. So I thought I’m a little tired. So I’m just going to take my wedding album. My mom, because my dad was a photographer. It was his assistant that did our wedding. Totally familiar with it. Well, there’s totally forgot all the people that were in the book. I just brought it to share with her. This is for fun. Not to go down memory link because I didn’t work with her. I show up and she goes, oh, hi. Where are we going today? And I was like, oh, crud. Dang it. But one day I don’t take her out. She I’m like, now how? I’ve been doing this for two years over two years. How does she remember that we go someplace all the time? She has no clue who I am. I just don’t understand. We had a very nice visit. She loved looking through the wedding album. Some of the care staff of people that were more in charge of her than others enjoyed looking at it because I got married 1989. Pink wedding dress lots of proof and ruffles very 80s. So, you know, people enjoyed it and she enjoyed their so it was actually really nice visit, but it all came back to when she saw me. She knew I was the fun person. I’m like, I like that. I’ll take it. I’ll be the fun friend. No? She may not remember my name or our relationship, but I’ll take fun for any day of the week. So it does matter. A lot of people, I’ve actually go to the regional park in 2018. We’d walk in the regional park. She’d try to avoid shadows. That was always fun. And I took her friend once. It took both Diane’s to the regional park and people are like, and you brought them back? Yes, I brought them back. There are rangers there. They didn’t see my car. Like, I had to bring them back to the care home. But, you know, just I just gave her as much quality of life as I could, and I hope in term of I also taught people that it was a little challenging, but once we got to the part or to the pool, it was it wasn’t so bad. Because I could answer emails on my phone or scroll through Instagram or just put my head back and listen to the kids screaming and laughing and the birds chirping on my face was just was just a moment of calm, was it kind of necessary after getting her in and out of the car and making sure she knew where her husband knew her husband and what she was. Right. It was crazy. So since I was the fun friend, kind of leads me into this other question. How can a friend or a family member support a loved one who has been diagnosed with Alzheimer’s? Like, my mom had a friend and I really never understood this. My mom was in the service organization. This guy would pick my mom up. They’d go to the meeting. And then this guy would take my mom and do errands. And sometimes they wouldn’t get back to late afternoon like bordering on early evening. And I have no idea how she put with my mother for that many hours because you go into a target or even a grocery store and they’re so many people and so much stuff. And it’s crazy. Like if you stop and look at it, it’s a lot. And if your brain can’t process fast enough, I can only imagine what some of those places feel like to people who are cognitively challenged. Like somebody who’s autistic or somebody who’s anxiety or somebody who’s got Alzheimer’s. So what would you suggest for Friends on how they can help support people like us and our loved one? Well, let’s go back to first family is that a lot of family feel well, I can’t do the caring, and I can’t do this. I can’t do that. There are a lot of ways the family can’t support and do things. And my family definitely did that. They certainly had their opinions and but my name was on the power of attorney and et cetera so I will say they always had mom’s best interest.
00:35:06 – 00:40:01
But like I had cousin who helped with her computer stuff my another relative may help with the medical bills or the finances or to do research. Somebody else could do ordering. There’s a lot of different things that they can do. It doesn’t have to be the hands on. It might be and it’s going to go now blending over into friends or neighbors or what have you. Give them a break for a couple of hours. Let them go get a massage. Let them go get their hair done. Go have coffee with a friend. That is gold to a caregiver. And I think I was mentioning about the savvy caregiving classes. We actually have people envision. If you have two hours with no obligations of caregiving, four hours, a full day, a long weekend. What would you do? I’ve had some say, I can’t envision that because I can’t see myself taking it or getting it. But the idea of the exercise is that you start thinking about I want to do those things. I want to go to a spa for a day and you will find a way to make that time available. And it might be asking, if not demanding, like, say, a relative, a cousin, somebody I need a break. I’m going to get sick if I don’t. Can you please watch so and so for the rest of it for one day or a few hours. This is very important that I would be really appreciative. The other thing I think it doesn’t have to ask. And other times it has to be the others thinking people never know exactly what to do. Eat anything, let me know. I’ll go so far. And you don’t know what to do. Sometimes you just have to do it. Bring them a meal. So they like to cook that night. Just drop by and say, get out of here. Go do whatever you want. I’ll be I’ll watch bob for two hours. That’s how the thing. I like to use this one example. It’s a lighter version of what we’re talking about. The last couple of weeks, she is on hospice. I’m taking turns with my aunt. And she leaves. It’s the first thing in the morning. And I put it out on Facebook. Could somebody please bring me a mocha? Different friends showed up from two different coffee stands. Nice. Two different ones. Yeah. Sometimes all you had to do was ask because you’re going through. And if they don’t they should. Well, you have to educate them, but here’s my here’s what I tell people to do. Make a list of everything. This is like a little bit of a long-term assignment. Make a list of everything you have to do every day. So you do that for a week. Now you know every day, these are the things I do. Then add in the stuff that you do weekly, monthly, and maybe the random stuff like my mom didn’t have to go to the doctor real regularly. So those were generally complete scheduled disruptors, but they were random. Now you have a list of like all the stuff you have to do has nothing to not necessarily. It doesn’t, it’s not all about the caregiving. Now make a list of everybody, you know, and write down what they’re good at. You know, like my husband used to be in banking. He is now a real estate broker. That man does contracts. He can stand on hold forever. He can speak bank speak, insurance person speak. I am on hold for two minutes and my blood pressure is and then somebody asks me a name question, I don’t understand. And now I’m just super irritated. Like, can not handle those phone calls? They do not know why. But I’m just not good at them. And even though he was not legally able to talk to the banks, the insurance company, he would call deal with all the minutia, all the cold and then they’d be like, oh, we’re not supposed to be talking to you. Then he put me, he’d put the phone on speaker phone, and then the two of us would talk to these people. And they always have cows, had to jump through the hoops, but yes, I know it’s on speakerphone. Yes, I know my husband is sitting in the room. Yes, it’s okay. Stop asking me this question. But I mean, I understood all that. I understood that was for my protection, so it was mildly annoying. But then, you know, like if somebody comes up and says, oh my gosh, I’m really sorry. Your mom’s got Alzheimer’s. Is there anything I can do to help? Yes. You can do X for you, call the insurance company for me. I just can’t deal with that. And if it’s in their Wheelhouse, and they’re not helping your mom bathe or do something kind of icky that they probably don’t want to do, then you know now you’ve taken that stress off of you because trust me, I tried really hard to learn how to just deal with. It never worked. Still don’t like it.
00:40:01 – 00:45:00
You know, and you could say, or somebody might say, my son’s got to do some community service hours for graduation. Great. I don’t know that this would work most places, but find out if helping me with the yard if that would, you know, if we go and get that signed off, it would be a little bit of work, but there’s always something somebody can help you with bringing you the mocha. But if you have an answer to, is there anything I can do to help other than, oh, no, I’m okay right now, thanks. Right. No. Don’t answer that. Have a list. And then your brain is primed for when they ask that, or you could be like, I am so confused about setting up this online banking or whatever. It’s been so long since I did that. I can’t remember if it was a challenge for me. I’m going to ask the grandkid or whomever. If they can help with that. It takes away a stress. And then it gives you more time also to deal with your loved one. And you’re not trying to find somebody else to do those things. That’s what I suggest. And again, if it’s getting too much probably given need to look at bringing some aids, obviously it’s been a challenge during COVID. But once things open up again, how it suggests don’t try to do it all yourself. You need to bring in help. And take some of the load off here because if you don’t, you’re going to get burned out. You’re going to get sick, or worse. I’m sure you’ve shared the statistics about how often caregivers prejudices other person living a dementia and it’s tragic and unavoidable. Well, that’s also not a fun crisis to live through and I can attest to that because that’s exactly what happened. We showed up at my parents house. I was just past my 50th birthday. We showed up to put up Christmas decorations, spend the afternoon together. My husband walks in the door first. My dad goes, oh hi, how’s it going? How’s the credit union business treaty? My husband was like, holy crap. I have not been in the credit union business in 13 years. What is going on? Now have I known what was going on and had he talked to me a little bit more openly? I wouldn’t just call hospice. Because then we spent the next 32 days of him in the hospital with the kidney doctor telling everybody. Well, once we get because he was diabetic and the donated kidney was failing. Once we get the toxins cleaned out of the system, his memory should return. I do not know at what point she knew that that was baloney because it never happened. The best he got, and they do not know what the hospital jacked him up with. Right before they released him, he knew that he had a gap in his memory. He knew that he thought it was 1998, but it was actually 2016, 2017, almost at the end of the year. And he was very anxious to fill that gap. And then after three days, he didn’t even remember he had a gap. So in those 32 days, my sister and I who are not close, do not agree on anything. Do not see eye to eye, nothing. Had to bounce my mom between my house and her house. My mom’s youngest sister, my mom’s the oldest of four. My mom’s youngest sister took care of their grandmother who had vascular dementia. So she would come and spend two to four days with her sister before she needed to get the heck out of there. So if that’s not between my house, her house and my sister’s house and the dog. At Christmas time. You want to talk about ugly? It was ugly. And it’s just like, I’m still mad at my dad for that. It’s been like, you know, oh, we’re getting close to four years. So we’re really close to four years for when this actually all went down. Yeah. Because that conversation would have been so much easier to have. He’d been saying things like, well, I’m getting close to the end. Well, okay. We all might be. We just don’t know exactly when the end is. I knew he wasn’t doing super well. I did not know that he knew he was needing to be back on dialysis, and he didn’t want to go back on dialysis. And I was fine with that because that’s really not a way to live, just a way to maintain life. So we needed to have some of those end of life conversations because it was ugly. And that’s the problem is often families don’t have the discussion. They don’t talk about planning, preparing being proactive, getting the legal things, getting the advance directive in order because if you’re having to react in a crisis, it just gets too emotional and expensive. It’s just going to have so much more stress on you and the family. And it’s better to know your wishes, their wishes in advance, let alone their own. I love to give the example of soon after she lost a home in the hurricane in North Carolina. We did her advance directives. And this was still very much in the news that case in Florida with Terri schiavo who was in a persistent vegetative state state and all the politicians and the families of bottling and it was ridiculous. But I just asked mom, a very simple question. Mom, do you want to end up like Terry Shiva? She still had enough cognitive ability to say absolutely not.
00:45:01 – 00:50:04
She knew exactly what I was talking about. We got that in writing. That was my direction. Now that was my guidance and it was actually a gift because I knew exactly what you wanted. I didn’t have to worry about making any gut wrenching decisions towards the end. So thank you, mom for doing that for me. Oh, thankfully, my mom is a respect. She got very combative at the end, which I like to tell people the story that when she moved in to the memory care, the caregiver was like, oh, your mom is so easy to so far, and I’ve always tell them that you didn’t grow up with her. Because obviously it’s different. And so for two ish little over two years, she was easy. And she was very much a helper to caregiver because she walked and talked to always it was so funny. All the people in wheelchairs and on walkers, she leaned out her door ago. If you need anything, just let me know. I’m here to help. Oh, jeez it was so hard not to laugh at that. Like, honey, you have no clue what you’re talking about. And it was just, but it was kind of funny to sort of see like the old her, but it was also kind of a little hard because like, yeah, you couldn’t help that woman if you wanted to. But that’s how she was, and then she really had almost a flip of the switch. She just got really combative and her MO was if you kiss her off, she clogged people. She drew blood on caregivers, which I just found devastatingly embarrassing because that was not who she was. But she was fighting the character well, that’s not what they said. They said, after her shower, which took two people to do, she reached for her clothes and slipped and landed on her kneecap and broke the leg underneath the kneecap. I know for a fact because this was my mother that she went. Then jerked away from one of them, reached for her clothes, lost her balance and fell. I know she’s the reason she fell. No fault of the care home at all. They put up with way more nonsense. So I got to miss some of the really ugly end stages, the problem for me was that was right at the beginning of COVID. I didn’t get to see her for the last two weeks of her life. I didn’t see her the day before she passed away. So I was very blessed. Because the executive director, I don’t know if it was his decision. I mean, they basically closed the building to all guests, but they knew she was dying, so they said, please come. And ten of us showed up in the hallway right after she passed away. The poor executive director was having a complete coronary was like, well, people need to leave. The last week or two when mom was on hospice and her community was a normal virus. Which happens on a basis that was just one community. Yeah. My aunt and I were the only people besides staff and residents that were lied in because they knew mom was really close. And that was a gift on how to get a little sick from it. But it wasn’t too bad because I had good immune system, but to be able to spend those last couple weeks. I can not imagine either not seeing your loved one that by the time you would see them they would remember you, the dementia would advance or that they would pass away. And I heard about stories like that. And it is just really, really sad and tragic. I wish we could have found a better way to handle all that. I hope care homes are analyzing how to make that better. I guess I just read recently that being in the hospital during the highest part of COVID did not up your up your chances of getting COVID, which makes no sense to me, but I’m not a medical person or will I ever be so I found that article very interesting and some of it was ventilation and the staff is wearing masks and gloves and all that. So I’m like, okay, I think there was better ways to handle it, but it happened so fast and one thing with as you said, you know, about the norovirus. My mom’s community had a huge blue outbreak in the winter of 2018. To where the point where there was red signs on the door that said, big blue outbreak, you know, and church your own risk. Preferably don’t come in, but you can still, it got so bad that the assisted living community that was actually they were attached to. They had to close the dining room and serve everybody meals in their apartments, which is what they did during COVID. So I’m hoping the people that get paid the big bucks because we know the caregivers don’t. Or analyzing what the heck. Lessons learned, right? Yeah. Best practices. Well, you know, unfortunately, it’s like, okay, well, we can see why all those things weren’t so great. You know, let’s take the good and now let’s you know it’s not going to be perfect and hopefully it doesn’t happen again, but maybe they can apply similar strategies to like a flu. And keep it from closing the diner because my mom’s community had great food.
00:50:05 – 00:55:05
And that had to be a real hassle have served everybody in their tiny little apartments and not be able to do. You know, just that isolation. No social activity, right? Sure. Yeah, I don’t know if they shut down activities or not. I know they shut down the dining room because there was because they always brought food over to memory care, and that’s how I found out about it, but yeah, it was two weeks that I couldn’t go see her. I did not go anywhere because I’m like, I’m going to stay home, so stay safe, not going to grow store some husband. It’s fine. Another place to go anyway. So I will just sit here and look at the walls of doctor people on Zoom. And after a week I was starting to really answer because that was my fear is that she would forget I was her fun friend. And after ten days, I was I was about to get on the phone with the executive director who he has moved to a different community, but we had a very good relationship. And I was about to tell him coming in. Do you want me to come through the window? ’cause I will, when we put a bag over my head ’cause it will, but I’m coming in. And I don’t know why I hesitated. So that was day ten, so by day 14, is when they called and said, mom’s not doing so great. We think she’d do better of a visit from you, which and now have learned this code for holy crap skin that comes here. And so I did I saw her Monday, march 30th, she passed away on March 31st. They did call the I had talked to the hospice nurse that morning, and then I did a recording for the podcast. And then I was having lunch and they called and they said, please come now. And so I called my daughter, my sister, my husband called my uncle who brought the youngest sister and the four of us got their first, my sister was just minutes behind, and then my aunt and uncle who are like 30 minutes away, but we all missed the end. Which I’m okay with, I’ve read a lot of things about what to do right after somebody passes away, like don’t panic, don’t rush to call people just sit. Like, well, I didn’t have that benefit. I didn’t have that with either parent. I don’t know that I’d want it, but I don’t know, we’ll see. I can’t tell my husband all out living. And I was the opposite. I was there that night. Interestingly, the person who was my first facilitator besides my aunt leaving for the day and me being there, they had moved me over for the first time away from her bed to her former roommates, bed, who she was moved across the hall because they knew it was getting towards the end. And she suggested have your brother call. Just hold the phone up to her, let them talk. I told him, you’d better call tonight. She probably won’t be around much longer and don’t worry about if she responds just talk. He calls her around 10 o’clock, whatever. I go live in the bed about 1 o’clock in the morning. The heavy raspy breathing stopped. It’s quiet. And I didn’t get upset. I didn’t go, oh my God, mom’s gone. It was like, it’s over. Sheila go. She’s no longer suffering. And yes, I just let the staff know. I just sat there, let it sink in, let them do their work, started composing an email to family and friends, et cetera, to let them know what had happened. And we actually part of the story was we had plans months ago to go to Costa Rica. We were there two days later. I have a favorite phrase that, for once in her life, almost on time. I love it. It’s always late. Always. But this time, she gave us just enough time. And it was the exact thing that we needed to recover, recuperate, grieve, you know, I’d still was other people and I was going out and doing activities, but I did a lot of relaxing and just being by myself too. Yeah. We need that time. And that was what was right for me. That’s how it may be right for everybody. And then when it came back, we did the graveside service. And then a couple months later, we did the memorial service. And that’s what worked out for well for our family. May not be best for going back to it before my dad died. I went to Jamaica for my 50th birthday. I don’t know what the heck presented me. My husband and I are cyclists, I decided I was doing the Jamaican reggae ride, which is a three day bike ride across the Jamaican island. Far my 50th birthday about four months after flying off my bike slamming into the pavement breaking my collarbone and having surgery to fix it. So why I thought that’d be fun for my 50th. I don’t know, it was. We came home, a friend of ours called and said, I’m making plans for spring training, and I swear I think that was the day before my dad, all of this blew up. So my dad passed away, march 2nd, we put my mom and memory care on the 16th. There’s a whole other story, and we went to spring training while the his funeral was the 18th, and we went spring training the following week.
00:55:06 – 01:00:00
And trust me that really, really is a good solution to just get out, do something for yourself, do something different, because I lost my mom, March 31st, 2020. We have not had a service. She is not in turn with my dad. I have talked to the military cemetery. He is F actually my husband did and just hearing what he was saying. It was like, yeah, I will not be talking to them. I need to call the funeral home. But at this point, it’s like, it’s been so long. It’s like, I’m sure people think I’m just a horrible person. I mean, for a while, okay, we had COVID, but now what’s the issue, right? So I really, really, really wish we could have gone away afterwards because, you know, it was like we came home and was like, okay, well, mom’s gone. We don’t have to worry about that, but we haven’t really had to worry about her for two weeks because we haven’t been able to see her. And then you just kind of move on. You’re just like, it’s just doing the same stuff. And so it’s been a lot more of a challenge than I thought. Oh, I thought I’d be ready for her to go. And it was a blessing. The timing was good. Because it’d still be a challenge to take her to the park to watch kids. But it’s losing somebody during the pandemic is a whole other issue. Which is why I’m writing a book about it. I have to keep telling people that so hold myself accountable. So we have been talking and I’ve asked you like two of my questions. I’m sure it’s some ways we probably covered most of the things we wanted to talk about. I think we did. So where can people find you? I’ll make sure all of your links are in the show notes, but give yourself a shout out because continuing on as caregiver to the caregiver, which is what I call myself is. It’s worth shouting out. All right. And as you can tell, just about everything I’m doing is in my mom’s honor and memory. And I think you’re doing the same thing. So two places, one would be my website. Caregiving support dot com. And my Facebook community, which is in most of those states, your provinces and 6 continents. I haven’t found anybody or any penguins in Antarctica yet, but that is the dementia support group for caregivers with Bill Cohen. Okay, well make sure those are linked in the show notes. And you said you are flying where tomorrow? I am going to Chicago for a couple of baseball games since you brought up spring training. Yeah. Was that spring trading with the Giants? Yes, it was. Huge baseball fan, but spring training is a special experience that I suggest if you like baseball, you will like spring training. I just don’t suggest three games in two days. A little too much for me. The hardcore baseball fans loved it. My husband was okay with that. I was like, can I go somewhere else? You guys watch this game. I lived in Sarasota, Florida for a while. So yes, I experienced spring training a bit and even went over the beach, saw the Yankees Dodgers game. But this weekend is a bucket list from last year, and finally get to Wrigley Field. I’m going to see the Giants of the cubs, but also I’m going to see my Red Sox against the White Sox. So and I’ve never been to Chicago so I’m really looking forward to it. Hopefully this is second week of September. It’s like a week of September. When we’re talking, so hopefully the weather is nice and Chicago. Pretty nice still here in California. I hope it’s as hot as it’s been in Oregon. And I will tell my husband to watch that game so he can connect with you in a baseball kind of sounds great. Thank you so much. Yes, it’s been a pleasure and an honor. Shortly after my conversation with Bill, I also signed up to take the training to become a support group facilitator. That will start right after we move at the very beginning of 2022. Coming up next week and the last week of December is my conversation with the author of the busy caregivers guide to advanced Alzheimer’s. She had such good information. We had to split it up into two separate conversations. So stay tuned for that. Easily access all of your loved ones medical record and help support our show by going to picnic health dot com slash memories that’s picnic, PIC, and IC, health, TH dot com slash memories. We thank you for supporting the show. When I learned that despite eating as healthy as possible, we can still have undernourished brains, I was frustrated. I also live in a farming community, so I’m aware that our food isn’t grown as well as we need. Learning about neuro reserves relevant and how its formulated to fix this problem convinced me to give them a try.
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