Bonus! -Bill Cohen’s Alzheimer’s Journey with his Mom: Managing Care and Behaviors and Practicing Self-Care and Preventions

Bill Cohen

In Bill’s words:

My loving and talented mother, Sheila, lost her home to Hurricane Katrina. Then, she lost her health, ability to create beautiful art and, ultimately, her life due to Alzheimer's. For almost 10 years, I was her primary caregiver and advocate, not just her eldest son.

I’ve since devoted my life to helping family caregivers. I turned my personal loss into my passion and “encore career” as a volunteer, advocate, and support for caregivers and their person living with dementia.

Social media and contact information: Facebook community—Dementia Support Group for Caregivers with Bill Cohen:
https://www.facebook.com/groups/billcohensupportgroup/

Links: https://linktr.ee/CohenSupport

I can advise and support you by phone, email, text, or Zoom:
503-522-8320
bill@cohencaregivingsupport.com
https://calendly.com/bill-102
cohencaregivingsupport.com
LinkedIn: http://linkedin.com/in/williamscohen
Instagram: @cohencaregivingsupport
Clubhouse: @dementiasupport

Podcast Transcript:

Damaged Parents: [00:00:00] Welcome to the Relatively Damaged Podcast by Damaged Parents where confused. Forgetful, lost people come to learn. Maybe just, maybe we're all a little bit damaged. Someone once told me it's safe to assume. 50% of the people I meet are struggling and feel wounded in some way. I would venture to say it's closer to 100%.

Every one of us is either currently struggling or has struggled with something that made us feel less than like we aren't good enough. We aren't capable. We are relatively damaged. And that's what we're here to talk about. In my ongoing investigation of the damaged self, I want to better understand how others view their own challenges.

Maybe it's not so much about the damage, maybe it's about our perception and how we deal with it. There is a deep commitment to becoming who we are meant to be. How do you do that? How do you find balance after a damaging experience? My hero is the damaged person. The one who faces seemingly insurmountable odds to come out on the other side whole.

Those who stared directly into the face of adversity with unyielding persistence to discover their purpose. These are the people who inspire me to be more fully me. Not in spite of my trials, but because of them, let's hear from another hero.

Today's topic includes sensitive material, which may not be appropriate for children. This podcast is provided for informational purposes only and is not intended as advice. The opinions expressed here are strictly those of the person who gave them.

Today, we're going to talk with Bill Cohen. He has many roles in his life son, brother, husband, nephew, cousin furball dad and many more. We'll talk about how he supported and cared for his mother through her alzheimer's journey and the end of her life and how he found health and healing let's talk

Welcome back to Relatively Damaged today. We have Bill Cohen with Cohen, Caregiving Support Consultants. Boy, that was a tongue twister for me today.  They support caregivers for people with Alzheimer's and dementia. Bill, thank you for coming to the show. Now you've got a personal story about that too.

Bill Cohen: [00:02:18] Yeah, a little one. Yeah. I'm very excited to be here. Thank you for having me on the anticipation has been building ever since we agreed to do this.

Damaged Parents: [00:02:25] It's fun times, right? That excitement, did you feel it in your belly or was it more

Bill Cohen: [00:02:31] Uh, Yeah, maybe my feet. I don't know.

Damaged Parents: [00:02:33] maybe your feet?

Bill Cohen: [00:02:35] In other words, uh get me out of here, no I'm just kidding.

Damaged Parents: [00:02:38] I understand completely I do. I do. Which I think sometimes it's probably, I'm thinking you've learned to laugh and joke, because, well, my grandma had dementia and learning to go with the flow of what's happening in that moment was in some ways, a real struggle to learn, especially from someone you love and care about so much.

I mean, do you, would you say that part of your ability to shift and laugh about anxiousness or things like that came a little bit from that journey?

Bill Cohen: [00:03:10] Oh, absolutely. There's no question. I mean, humor's always been a big part of my life, but even soon after part of the story is that she lost her home in hurricane Katrina and Biloxi, Mississippi. And she was evacuated with other family step family in Wilmington, North Carolina. We're sitting there after the hurricane, during another storm that came up the Atlantic coast or soon after.

Yeah. I'd be hitting her with the jokes to keep her in a good mood because she was so agitated at the storm and the trauma it accelerated and exacerbated her condition. And I would say things I got of um, not the the cartoon character, but the baseball player Yogi Berra who was known for his malapropisms and nonsense statements.

Like, Hey mom, you know that you can observe a lot just by watching. Oh, I really, really are. If you come to a fork in road, take it.

Damaged Parents: [00:03:57] Right

Bill Cohen: [00:03:59] And it's interesting. One of the pluses. One of the few pluses to dementia  at least in her case, we used to do a lot of joking at home around the dinner table and stuff much to her chagrin puns and what have you, but she actually developed more of a sense of humor.

Once she got dementia. I think the filters came down. She was less inhibited, less self-conscious about laughing. And I think it really helped her. we would laugh a lot during that time period.

Damaged Parents: [00:04:27] That's really beautiful.

Bill Cohen: [00:04:29] Yeah. To the extent that she was capable of understanding. Of course.

Damaged Parents: [00:04:32] Yeah. Yeah. That's a beautiful way to look at it in that it helped bring those walls down maybe on, I mean, was she otherwise like poised and in life and had to have a certain air about her?

Bill Cohen: [00:04:47] Oh, absolutely. I even admit that there were things that she was a snob about. No, she, dressed very well. She was usually very well coiffured jewelry, Some of it either made or designed. As well as bought not just, your typical stuff, but very artistic, the way she dressed or she carried herself.

Absolutely. She was an artist herself, a printmaker master printmaker. So that was part of it. And I mean that relaxed later on when she was living in Mississippi, rather than New England things a little more casual down there, but yeah. Nope, no question. So she did let that down a little bit.

And then definitely. But I think even still as the dementia was setting in, I think she was still to the extent that she was able to be aware of it, that she was still very conscious of how she looked like.

Damaged Parents: [00:05:35] even with the dementia, she was very aware of her presentation.

Bill Cohen: [00:05:40] Yes, exactly. Although she would wear some inappropriate things like she'd wear warmer clothes in the summer here in Oregon. And I think part of it was like, she'd wear gloves in warm weather but I don't think it was temperature. I think it was that she didn't like how her hands looked anymore.

Because they were getting wrinkled. She had had an injury where it was bent and I think she was very conscious of how her hands looked. So yeah, I think that continued and she didn't say it, but I think she had a way of covering up literally and figuratively.

Damaged Parents: [00:06:09] So they're still there with dementia and Alzheimer's, they're still very much there.

Bill Cohen: [00:06:14] There's still the person inside.

It's just a bit different. It's there's a different comprehension ability to communicate. They still like certain things still like to do certain things. It just might take a little longer or just do it differently or differently than we would do it.

Damaged Parents: [00:06:30] Now was that hard to get used to.

Bill Cohen: [00:06:32] Yeah. You don't correct them. You don't say, Hey, you should do it this way or do it the way I would do it. You got to.

let that bleep go.

Damaged Parents: [00:06:38] Okay. So it's really important if you're working with a grandparent or a parent with Alzheimer's to go with the story with their reality.

Bill Cohen: [00:06:49] Exactly, a reality is, one of the keywords. Absolutely. And sometimes it's just a matter of asking questions. If they say I want to go home. So where is home? Tell me about home. What would you do if you went there, that type of thing. And if they get talking about it, it's going to generally calm them down and you could even say things like, well, yeah, we can, uh, we can go there.

Uh, let's go uh, go for ice cream. And then we can maybe go see the house later and then by then, they've already forgotten about it,

Damaged Parents: [00:07:17] Right.

Bill Cohen: [00:07:18] You've talked about it. You've given the idea that we can go there and they're less agitated, less anxious. Cause a lot of, a lot of that has to do with it.

Damaged Parents: [00:07:27] Now when they stay in that anxious mode, in your experience? Is there like this tighter, hold on to the story that they're telling themselves? Um, Or not, that they're telling themselves, but that's coming up for them. Cause I don't know what happens inside the brain there.

Bill Cohen: [00:07:42] A lot of it, and you've probably heard of the concept of short-term versus long-term.

Damaged Parents: [00:07:46] Right.

Bill Cohen: [00:07:47] Old memories phrases or things that they did or about their childhood or when they raised their family. They're going to hold onto a lot of those things. For instance, I run a memory cafe, which is for both the caregiver and the care recipient.

So at the end, and some of the things we do are games were involves memory games memory phrases, like finish a phrase like a rolling stone, gathers no moss right?

Damaged Parents: [00:08:11] Got it.

Bill Cohen: [00:08:12] And even people with mild cognitive impairment, MCI, or early stage, will remember those things because they've been hearing it all their lives. But if you ask them what'd you have for dinner last night?

Nope. It's gone.

Damaged Parents: [00:08:25] Yeah.

Bill Cohen: [00:08:25] is why when they do the memory tests and I've even gone through it in a clinical trial. And it's hard because think about a list of 20 words and that having a repeated back. And then a few minutes later, they ask you to do that again. Or a three paragraph story. Tell me how much do you remember that?

Or tell me the story as much as you can recall, and then they would ask you again,

Damaged Parents: [00:08:49] Oh,

Bill Cohen: [00:08:50] for somebody with full cognitive ability, because again, short-term memory, it's not ingrained yet. But for somebody who has any kind of impairment, that's really, really hard. It will be evident about they may present themselves well. Oh,

I'm doing fine. Everything's great. Oh,

yeah. So-and-so is the president or what have you, but you know, you start asking questions like that and it becomes apparent about there any decline that they're experiencing.

Damaged Parents: [00:09:12] So doctors would have to probably be pretty savvy in how they even present to see if they're checking. Especially if someone thinks they are fine. Cause I'm thinking most people go into the doctor's as they age coming into dementia. And Alzheimer's maybe aren't even aware that they're struggling.

And I mean, how often have you heard of that happening? Where the doctor figures it out and it's not the family

Bill Cohen: [00:09:37] Oh, yeah,  No question. And they are supposed to, as part of the Medicare exam, the wellness check is to ask certain questions of them, either in writing or verbally about are you struggling with this, are you doing that? You're doing that. And even if they can cover well and answer certain questions correctly.

If the physician as well trained, they should be able to detect that. And that's why it's important to go somebody who has more than like one course in geriatrics, which is what most family or primary care physicians have. They have very low geriatric or nutrition training. You want to get to a specialist like a geriatric psychologist, geriatrician, a neurologist, somebody like that.

Damaged Parents: [00:10:18] So would it make sense as someone ages to make sure that they're working with someone in like, my experience has been like internal medicine really specializes in the elderly group. even though they do family stuff, But would it, especially if you're on your own, would it be a good idea for those people to make sure they're in with a doctor that clearly understands what to look for as, we age.

Bill Cohen: [00:10:39] Absolutely. And that's what we did. And that is part of the story going back around 2004. So we were starting to see some signs of concern and I did bring her to a physician near her home. I believe she had some kind of geriatric training, et cetera. And they'd put her on one of the medications, , a lot of people for the names like Namenda and Aricept, which are not a cure.

They're not a treatment, but they help slow the progression of the symptoms. They can provide some temporary benefits, but there are no cure for that type of thing, but at least she had that kind of training. And then after she lost her home and the hurricane and we were in North Carolina got her into see a geriatric psychiatrist to get her on some medication because she was so agitated.

So frantic, cause of the trauma losing her home We got her on the right medication. And this person definitely have the training for it. And it was very helpful. In fact, some states have mandatory reporting as far as driving. Like

Damaged Parents: [00:11:39] Right.

Bill Cohen: [00:11:39] where I live in Oregon, North Carolina did not. So what we did was because she had shown some so her driving skills weren't bad. The last time I drove with her, but she chose some disorientation. So I called the office before the appointment and said we don't think my mother should be driving anymore.

Damaged Parents: [00:11:56] Right.

Bill Cohen: [00:11:57] And so within a few seconds, the physician said Mrs. Springer her remarried name said, I don't think you should be driving anymore. Now. Who do you think my mom got angry at or upset at?  Correct. Not me. She said that doctor ruined my life.

She took my license away. You know what? She still had in her purse, her license. She only thinks she heard was I can't drive anymore. And she was mad at the physician. , I don't think she wanted to be mad at me.

Damaged Parents: [00:12:26] Yeah.

Bill Cohen: [00:12:28] Yeah.

Damaged Parents: [00:12:28] I mean, it's, hard enough having to give up. Like, I would think losing that independence as you get older. Anyway, and it's almost like you have to fight for it. Like it's just in us inherently inside of every human I'm going to fight to keep everything I can.

Bill Cohen: [00:12:45] Yeah. You're losing control. You're losing your life. As you know it, your ability, your freedoms, to go where are you? When you want that type of thing. And so it is one of the most difficult issues to deal with, and it comes up all the time with clients in my support groups, et cetera. Yeah, I mean, fortunately her license did expire, got her an ID card, that type of thing.

She would bring up the subject. And I said, here, mom, here's the driver manual. If you want to study and you can take the test, I'll take you. She would look at it a little bit and she would put it down. There was no way.

Damaged Parents: [00:13:17] So she kind of knew

Bill Cohen: [00:13:19] Yeah. Bless her heart, and she would bring it up occasionally, but fortunately we also took the car, her vehicle out of sight, out of mind.

Gave it to another family member. And so that did help as well. She didn't see it as much. Occasionally she would. Once I moved out here to Portland, she'd be driving around, I didn't want to drive again. Look at these crazy drivers. Look at all the traffic look, all that congestion especially compared to Mississippi and oh yeah, you're probably right.

It wouldn't be difficult.

Damaged Parents: [00:13:45] Oh, wow. Now was it, was she aware that she had dementia?

Bill Cohen: [00:13:50] So that's a good question. She knew that something was wrong. And I think most people do just like we were thinking, we saw that she wasn't taking care of the finances. She wasn't taking care of the house. She was shocked. Anxiety and confusion. Some mood swings outbursts. She was in the caregiving role for my late stepfather, who had all kinds of conditions.

So that was wearing her up, stressing her out, trying to keep him alive and I don't think she was quite aware of it yet, but I think later on and I should've mentioned that we thought that if my stepfather passed away or went to a care community, would she bounced back, would she be okay? Was it just age?

Was it stress? Was it no, we didn't get a chance because of the hurricane.

So, and then she, Okay.

I'm going, as I mentioned, it got a lot worse right afterwards, but as time went along, I think she sensed something she did ask for help. She wasn't fighting me, like letting me become power of attorney and health and the health representative and the physician's order for life sustaining treatment become the executor of her state, trustee of her income cap trust to keep her when she got on Medicaid.

There was total trust there and knowing that she couldn't handle those things as well, what tends to happen is the early stages are more difficult because they're aware because they know that something, and as you were alluding to, they're fighting for that independence for that control of their own lives.

But as things move along, most of the time they become a little more manageable. They'd settled down because you know, so many words. Ignorance is bliss. They don't know what has happened or where they are. As I said to myself, often or to people, once she moved from a very beautiful assisted living across the street to a memory care unit, which was an older, skilled nursing facility.

It's all been renovated since, but, and that wasn't the important, the care was wonderful. It just looked like one of those old nursing homes. I said that if she could see where she is now I think she would be aghast. She probably would have said put the pillow over my head. I think she would have been horrified at how she was perceived, how she was coming across, how she was acting and thinking and not remembering things.

But you know, , she didn't realize how nice she had it over in the assistant living.

Damaged Parents: [00:16:07] Well, and it sounds like she might've been more upset about if she could have  been outside of herself, looking in right. Seeing what was happening.

Bill Cohen: [00:16:16] Yeah.

Damaged Parents: [00:16:16] But what I'm hearing from you is that there's just this love for a parent, regardless of whether they remember or not. Did she get to a point where she didn't remember who you were ever?

Bill Cohen: [00:16:29] That's a really good question. And first of all, we did have a really good relationship. Kind of goes speaks to your podcast and your whole subject matter. I had a very good kind of  relationship with my father until he passed away much earlier in 96. Unfortunately they weren't really a very good marriage.

They broke up when I was in college, they divorced and then mom remarried and my father did as well, but mom and I had a really good relationship and. It was just a matter of how should I put this? Okay.

She always had dominant male figures in her life,

Damaged Parents: [00:17:03] Okay.

Bill Cohen: [00:17:04] my grandfather then my biological father, then my stepfather, then it became me.

I became the main male person in her life, but she got confused and she would be wondering, exactly who I am or what our relationship was. One of the little stories I'd like to mention is she'd pat the bed and said, oh, are you staying here tonight? No, mom.

Damaged Parents: [00:17:25] That's beautiful.

Bill Cohen: [00:17:29] But it goes back to, and I like to do a, variation of what Maya Angelo says. It's not so important that they remember your name. It's not so important that they remember the exact relationship. How do you make them feel

Damaged Parents: [00:17:43] Okay.

Bill Cohen: [00:17:43] When I talk to caregivers and their families. Don't worry about if they, remember Johnny from Jimmy or father versus a brother think about it.

My mom was looking at me and seems an older person, and she remembered me as Bill or way back Billy

Damaged Parents: [00:17:59] Right.

Bill Cohen: [00:18:00] only good friends can call me that

Damaged Parents: [00:18:01] I'm not there yet. I know that

You're

Bill Cohen: [00:18:04] getting there.

Damaged Parents: [00:18:05] We'll get there. No. 

Bill Cohen: [00:18:08] So, there

Yeah, she was seeing me as somebody, more, an older person. That was probably more like, even though I didn't look at my dad at all,

But I look more like probably like her brothers

Damaged Parents: [00:18:16] Right, but  you were older when this was happening. Therefore she couldn't make that distinction between, oh, this is my son that grew up versus this is this man that's, who's sitting here

Bill Cohen: [00:18:29] Yeah. Although very often, even when she was losing her cognitive abilities, it would be like some recognition and saying, oh, when I'd walk in, ah, there's my son proud and. happy to see me. It was never, ahh who are you?

Damaged Parents: [00:18:45] Yeah, the scare.

Bill Cohen: [00:18:47] It was always some set, recognition, whether it was visually or verbally.

Damaged Parents: [00:18:52] And so how do you reconcile it? I mean, with the people in your support groups, I'm thinking your experience is not the same as everyone else's and there are some people who have parents or grandparents that don't even recognize them. And they do do  the scream that, what do you recommend or what do people do in those situations?

Bill Cohen: [00:19:15] Don't take it personally. That's one thing, any caregiver is doing the best they can. They hopefully have them in a good atmosphere, either at home or in a care community with good care and they're safe and they're relatively happy there. So it's, you know, you take care of as many of those factors as possible to keep them, Uh, there's a phrase in a caregiving class that I've been trained for, we call it contented involvement so that you give them simple activities and a good environment.

So they stay calm. They're not as agitated. There's a phrase when you talk about you, how do you handle it? And especially when they're getting upset about various things we say in, in a fund, like the Alzheimer's association, you've seen one case of Alzheimer's. You'll see, just one case. If you see one case of dementia, you see one even aging, there are common threads, but every case is different.

So you have to take each individual. Uh, Sometimes it does take with the right, physician and the right medications, not to overstate them. That's lazy. That's unethical it's irresponsible, but enough to say calm them down the moods or help them sleep better at night, or to maintain their appetite.

Because again, there's no cure, but we can use some medications to, not alter the behaviors, but to hopefully even them out,

. In fact that really quickly, what's probably going to happen. You probably heard about new medications being approved and things like that. I'm not going to get into that, but what we're seeing and hearing is that it's probably not going to be one magic pill or silver bullet.

It's going to be a combination of medications and behaviors and environments.

Damaged Parents: [00:20:56] Okay. Yeah, that makes

Bill Cohen: [00:20:59] in fact, my mom is really the poster child for that really quickly. I think about you and your listeners might find this of interest because people ask me, why do you think your mother got Alzheimer's

Damaged Parents: [00:21:07] Oh, that's a great question too.

Bill Cohen: [00:21:10] It is, and I'm glad I asked

Damaged Parents: [00:21:13] Me too.

Bill Cohen: [00:21:13] that we usually hear about genetics. Genetics, nobody else in the family has Alzheimer's. A little bit of cognitive decline with a couple of my older aunts and uncles. She didn't start becoming symptomatic until her early seventies, which is pretty young. That's not what I'm talking about. Eighties, nineties.

Damaged Parents: [00:21:35] Right,

Bill Cohen: [00:21:35] She was living in Biloxi, Mississippi toxins, pollution, chemicals. I mean, the food is very tasty, but yeah, it was a lot of crap in there. She used to smoke, barely exercised would walk the dog past the corner. She wouldn't get in a pool there's kids in there. She was isolated socially. She was a few miles off the gulf coast.

With just my stepfather. As I said, she was in the caregiving role for him and getting worn out herself and stressed. And she was a  master printmaker, and she was etching into metal plates and putting it into an acid bath. So like I said, she's the poster child. There is increasing evidence that it's also environment and your behavioral lifestyle choices.

Damaged Parents: [00:22:16] Right. It sounds like a bit of what you eat too.

Bill Cohen: [00:22:19] well, there's an old phrase. You are what you eat. Absolutely. Yeah.

Nutrition, watching your gut health. I like to even say, I'm making a motion here that your listeners can't hear I'm hitting my stomach, gut health, heart health, brain health. It's all connected.

Damaged Parents: [00:22:34] Yeah. And I think that they found there's a brain in all of those areas

Bill Cohen: [00:22:38] Exactly. Yup. And vice versa. Sometimes the stomach is called the second brain,

Damaged Parents: [00:22:44] Oh, I hadn't heard the stomach. I

Bill Cohen: [00:22:46] exactly right. Exactly. And one example is sugar added sugar is really a problem. Alzheimer's is called by some people that type three diabetes. So along with the added sugars and those sweet carbonated Cola's and other drinks the processed foods, junk food, too much alcohol bad carbs, bad fats, rather than I mean a good example.

I'm not saying it's right for everybody, but a good example would be something closer to the Mediterranean diet.

Damaged Parents: [00:23:12] Have a good of a healthy diet that that would help with brain health and things

Bill Cohen: [00:23:16] Right. Exactly. Yep. Good, good fats like avocado and nuts and salmon, et cetera. Good carbs. Brown pastas and rice et cetera stay away from those white flour, sugar that just turns to sugar in your body. Yeah. And in a lot of it comes down to inflammation.

Damaged Parents: [00:23:34] Yeah. So I think what I'm hearing then is that inflammation happens in the brain, which can trigger some of those extra plaques being left behind. Because I think my understanding is there's some plaque in the brain that happens. Right.

Bill Cohen: [00:23:47] Yup. Yup,

Damaged Parents: [00:23:48] Fascinating.

Bill Cohen: [00:23:49] Eating the way that the in Alzheimer's anyway yet. So plaques and tangles and the brain is unfortunately shrinking and first takes away memory and executive function ability to handle normal daily tasks. And they used to talk about activities of daily living ADL's and later on, it becomes a things start shutting down.

Unfortunately, it's it's a very progressive and uh, deteriorating disease.

Damaged Parents: [00:24:14] Yeah. And it sounds like maybe if I'm thinking about people in my life or people that I might care for, right. That what I would start looking for, or just want to be aware of, maybe not looking for, cause what I look for. I find I'm really good at that, but I might notice they're not taking care of their activities of daily living, maybe they stopped showering. I'm thinking I'm guessing. I don't know. Like, am I on the right track there?

Bill Cohen: [00:24:42] Absolutely. Absolutely. Yeah.

And it can be just, you know, there's a lot of piles of papers around that, that aren't taking care of unread magazines. How about the car? Going back to that issue, a brand new car and there's dents and scrapes in it. Things like that, or you go driving with them and you could even ask them to are people honking at you and you don't know why.

Damaged Parents: [00:25:02] Thank you. I'm sorry. I'm laughing. You're making me remember. There's a really funny Tiktok with a gal. She's like a grandma age. I don't ask me, but she's jokingly saying she goes out into traffic and recruits her friends to, block traffic behind them. I mean, it's a fantastic Tiktok and she holds her hand up.

Yeah. She's like people are flipping her off and she waves, and she calls it a wave. They're waving at me.

Bill Cohen: [00:25:28] Exactly. Yeah. why are all these people just, doing these hand gestures and honking and yeah.

Damaged Parents: [00:25:35] So that's a bit really what she's talking about or what she was joking about it does really happen. It could be a sign that there is a bigger problem. So we need to be aware of that, especially as drivers on the road. So if we recognize that would, I mean, obviously if it's causing a significant problem, would it be helpful to say, to call a wellness check on somebody like that?

Bill Cohen: [00:25:58] Exactly. And that's why it goes back to that thing. When it's talked about with the doctor, with my mom. Theoretically or one way of putting it is throw the doctor under the bus, make them the bad guy, let them do the reporting to motor vehicles or to tell them don't put it on yourself because there's going to be that family dynamics.

There's going to be those emotions there and let a professional tell them just like, if they're, you're having issues with say, getting to do legal documents. Cause that's very important. One of the first things is to get the durable power of attorney and the other legal things is go to a preferably an elder law attorney and say, this is why you need to do that because you don't want somebody else making those decisions for you.

Wouldn't you rather make them yourself and then your daughter or your son or whoever you designate can. Put those into action only when you can't only when you can't.

Damaged Parents: [00:26:51] Right.

Bill Cohen: [00:26:52] Right. So, And again, same thing going back to the um, driving issue. One more time Is that it's not just about property damage.

It's not just about other people's, bodies or their lives. What about liability? You could lose everything if you get sued because somebody shouldn't be

Damaged Parents: [00:27:11] Right. Yeah. That makes a lot of sense.

Bill Cohen: [00:27:13] You can't stop in time or they swerve out of their lane or what have you. And sometimes this is not just a vision. It can be hearing. It can be you know to look over your shoulder.

Having that flexibility react in time. There's a lot of other factors. Again, the people that know me well, I used to work for motor vehicles in Oregon. I did a completely different area, had to do with commercial driver's licensing, but I was working with and in a carpool with the people who ran the program in our state regarding quitting driving.

Damaged Parents: [00:27:45] Wow. Gosh, I guess there would have to be a program. I never really thought of that, And yeah you know, there's not really a class that says, this is what happens as you get older. And these are some things you need to think about. There's just not out there. And if it is, I've got certain how many people would go to it .

Bill Cohen: [00:28:02] That's one of those things that, I know I need to, but I don't want to deal with I'll do it someday.

Damaged Parents: [00:28:07] Yeah. It's not time for me yet, but I'll tell you having these conversations is, really enlightening me. But the next thing I wanted to ask you about is I'm thinking for the supporter, right? The caregiver that there is. A significant amount of self care that needs to take place. And that I would think it's really easy.

And speaking, my older sister was who took care of my grandma. She was the main person, but I would think from watching that, that. At least for, from my experience of her, she would forget to take care of herself, but she was really good at taking care of grandma. How do people, or how do you recommend people find that balance?

And it sounds, I mean, because you have support in so many areas, it just, how.

Bill Cohen: [00:28:56] Yeah. One of the things I like to say is that I needed somebody like me back then when I started this journey with my mom, first, one of the things I did was to start attending a support group And that one I, after mom passed away, I became the facilitator and I'm still attending in some fashion. 16 years later,

Damaged Parents: [00:29:16] And it's still hopeful. 16 years later, I'm thinking.

Bill Cohen: [00:29:19] it's helpful. And I'm helping others as well. Yeah, it's always confidential. Provided good advice information. You know, You're not alone. You know that you're going to get good support and we take all relationships, all kinds of dementia, all ages, et cetera. At least in my group, some are more specialized, but going back more seriously to your question.

Most people in senior care and especially dementia care are focused on one area of the journey, whether it's home care or housing, or what have you. And they're focused mostly on the care recipient, the person living with dementia,

Damaged Parents: [00:29:54] Right.

Bill Cohen: [00:29:55] Who's taking care of the caregiver? Because as you say too often, they're not taking care of themselves because they're so focused on taking care of their loved one.

And sometimes it's just a matter of being in denial. It can be that. Nobody else can do it as well as them or admit that They can't handle it or they've got control issues. I actually had one client who said to me. Yep. All the above. Yep. it.

Damaged Parents: [00:30:22] They came to you and they, just admitted to all of that.

Bill Cohen: [00:30:25] Yep. All of those. Yep. Like down the list check, check. check

Damaged Parents: [00:30:28] So did they come to you with the idea of, this is very hard and I know I need help.

Bill Cohen: [00:30:33] once one of my collaborators, one of my colleagues referred him to me and says, you need to talk to Bill Cohen because you're not able to handle it. Coincidentally, his wife was a gerontologist and she got Alzheimer's  . Yeah. Can you imagine, so she knew what was happening to her?

Yeah, unfortunately, but going back to the self care is that it's not just a matter of admitting it and bring it in help and getting support is taking the time and asking people to give you a break or to give you a rest or to put your loved one in a place, or bring them to a care home, like an adult daycare, or bring them to a place for a week or two.

For a temporary stay so you can get a break. Most caregivers will say, you know what I did for two days sleep

Damaged Parents: [00:31:19] Hmm.

Bill Cohen: [00:31:20] all I did, I could have done that in a hotel right next to home, but I went to the woods or  whatever works so the real key comes down to, it goes back to the caregiving class.

We have an exercise where you ask, okay, if you had two hours or a full day or a full weekend with no caregiving responsibilities. What would you do with that time?

Damaged Parents: [00:31:42] Mm.

Bill Cohen: [00:31:43] First? They were going to say, I can't, I don't know how to check that time. The idea is though this, get them to envision if they could, this is what I do.

I really want that. I'm going to find a way to get that time and ask for, ask a family member. Can you, you need to give me a break. I need a weekend or a week, or you get some neighbors nearby to check in on whatever or you hire 24/7 care for them for life. You need to take that break.

Damaged Parents: [00:32:09] So it sounds like if someone is around someone supporting another person and that person's not taking a break, it would be a good idea to just ask the question, just so that that idea can start simmering and

yeah. Then, and then it, then hopefully it will grow.

Bill Cohen: [00:32:27] Mm. Exactly. Cause I remember one person that was in that class after like a couple of hours, maybe even a day I can't conceive of a couple of days or a week. It's just beyond my comprehension well, we made her think about it and find a way, and I like to tell them people that, yes, it was harder during the pandemic, but there's still some things you could do and now can do again, whether it's go for a massage now that they're open again, you can take a bath with essential oils.

It's the music and candles, you know, just little things like that. Or just go for a walk or get together for coffee with friends.

Damaged Parents: [00:33:04] Yeah. And it sounds like a lot of what I'm hearing is like what they tell parents on the airplane, put your mask on first and because the role has shifted to the child taking care of the parent in most cases, what I'm thinking is, is at this point in time, put the mask on first as the child so that you can care for the parent.

Right? So it's it's learning to flip that a little bit.

Bill Cohen: [00:33:27] Yeah.

Damaged Parents: [00:33:28] That's hard.

Bill Cohen: [00:33:29] So that's what I try to do. I start with people. And they already know by the time we're talking that I've been in their journey, you know, for 10 years of my mom, that I asked a lot of questions do a lot of listening, find out what are your stressors? What are your burdens? What would help you sleep better at night, knowing that you don't have to worry about this as much or anymore, that type of thing.

And then once we do that, we determined, I may get to work with you on a monthly basis. Or, on an hourly basis. I usually recommend monthly because it is a, usually a long-term complicated situation. Sometimes long distance. I help people all over the country, not just the Pacific Northwest. cause I don't know somebody in a certain area.

I know where to find the resources. I knew who to talk to and say, who do you know that can help this family and go for it.

Damaged Parents: [00:34:16] Yeah.

Bill Cohen: [00:34:16] I'm the guide. I'm the collaborator on the coach, the, whatever, the concierge that helps put together that team.

So,

Damaged Parents: [00:34:24] it's a connector.

Bill Cohen: [00:34:25] yeah, I'd love to connect.

Damaged Parents: [00:34:27] I love that. Okay. We are at that time in the podcast where I asked for three things, three tips or tools, whatever pops into your mind, it can be for the person struggling with Alzheimer's. It could be for the persons supporting the person with Alzheimer's, but it's something that you would recommend to the listeners if, they even know of people in these types of situations.

Bill Cohen: [00:34:48] Right. I will repeat, at least one of them. One is if you are in that situation, get support, including  look for a support group in your area or find one because again, it would be very helpful with information and knowing that you're not alone, there's other people that are going through what you do, and if it's not the right fit, try another one.

A lot of people end up in my groups because another group didn't work out very well. Second would be is become informed, become educated, go to a site. You got to start with the Alzheimer's association, which does cover all kinds of dementia. And that is simply A L Z.org  ALZ.org.

Damaged Parents: [00:35:27] That's way easy.

Bill Cohen: [00:35:29] Yeah, absolutely. And I would say the third is the area that we were just talking about is Yeah.

Take care of yourself because unfortunately I'm going to give a very blunt statistics about two thirds of dementia caregivers, predecease, their loved one. Because they get sick. They're not, they're getting burned out. They're not taking care of their health,

Damaged Parents: [00:35:48] Oh, so the caregiver dies before the one with Alzheimer's.

Bill Cohen: [00:35:53] Correct. So if you're not getting support and you're not taking care of your own health, et cetera, you're not asking for help from family, friends, neighbors, your charitable, your religious affiliation called ex-coworkers, whatever. You're doing everybody a disservice because you're not helping your loved one or yourself.

Damaged Parents: [00:36:10] That's a tough one to swallow and so true.

Bill Cohen: [00:36:13] Yeah.

Yeah.

Damaged Parents: [00:36:14] True.

Bill Cohen: [00:36:14] And I think and I'm going to add one more,

Damaged Parents: [00:36:16] Yeah.

Bill Cohen: [00:36:18] 3b. Have the conversation, talk to your family. Watch out for hidden agendas. Yes. You may not agree on every little minutiae of the care or the decision-making, but you want to at least have overall everybody on the same agenda on this same page, have that discussion.

If you need somebody like me or some other mediator, I encourage you to have those discussions. And try your best to do what's in the best interest of the person with dementia. Cause they can't take care of themselves. They can't make the wrong decisions and you know, that's what they would want. And I know it's difficult.

Again, going back to your area that sometimes there were some strain relationships, there was some dysfunction and it's hard enough to do those discussions and the care when you have a difficult relationship with family member. But do your best to put those things aside and do what's in their best interest because in the long-term you'll all get along better and you'll know you'll be, you're doing the right thing.

And the last thing is you're doing your best, especially the primary caregiver. Like I was, I did have a lot of support from my family. Fortunately, that was the main guy. Just remember you're doing the best you can. Nobody's had training of this. Nobody's had training in this.

And child rearing, there's some aspects that are similar, but it's still very different.

And in my case, we're dinks dual income, no kids. So I suddenly have a child, a seven year old childlike person, parents on my hands. That was a big, big change for us.

I would like to mention one thing. Speaking of the getting support and support groups, is that on Facebook? I have my Dementia Support Group For Caregivers with Bill Cohen. It's a community, several hundred people most states and provinces and on six countries. And they support each other, help each other, engage with each other.

It's really, I mean, I do too, but I don't have to do it all.

Damaged Parents: [00:38:19] Yeah, I bet it's really beautiful to watch those communications happen

too. Yeah, now we can find you at CohenCaregivingSupport.com. You're on LinkedIn, Instagram. Clubhouse you're under Dementia Support.

Bill Cohen: [00:38:34] Correct.

Damaged Parents: [00:38:34] and you're just everywhere.

Bill Cohen: [00:38:37] I'm trying. Get the message out

Damaged Parents: [00:38:38] So the phone number you could reach them at is (503) 522-8320. Again, that's (503) 522-8320.

I'm so grateful. We got to have you on the show. It sounds like have these conversations earlier than later, even when they're difficult, they're important and just love your family. I just love your message. And I'm so grateful for you.

Bill Cohen: [00:39:02] Thank you. 

 Damaged Parents: [00:39:03] Thank you for listening to this week's episode of relatively damaged by damaged parents. We've really enjoyed talking to Bill about how he learned to balance self care while caring for his mother. We especially liked when he spoke with an abundance of love for his mom. And chuckled inside when he pointed out how we don't have to be responsible for everything.

Sometimes it helps to give that job to the clinician. To unite with other damaged people, connect with us on Facebook. Look for damaged parents. We'll be here next week still relatively damaged see you then