Multidimensional Loss: Losing A Mother To Alzheimer's Disease
Updated: Mar 16, 2022
By: Dr. Tomi Mitchell
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In this episode, I had the pleasure of interviewing Paul Marlow.
About our Guest
Bill is a Caregiver support group leader and Speaker, an Association volunteer, a Certified Senior Advisor (CSA)®, and the owner of Cohen Caregiving Support Consultants.
His 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 disease. For almost 10 years, Bill was her primary caregiver and advocate, not just her elder son.
Bill has completed multiple caregiving and aging courses through the Alzheimer's disease Association and the Society for Certified Senior Advisors™️, has a financial services and government background, and earned business degrees from Boston and Portland State Universities. He has lived in the Portland, Oregon area for almost 37 years with his wife of 41 years, Lori.
Dr. Tomi Mitchell 0:07
Hello everyone, this is Dr. Mitchell, your host from the Mental Health and Wellness show. Today I have the pleasure of bringing back bill again, as you know he is a caregiver support group leader and speaker. He is an Alzheimer's Association volunteer, a certified senior advisor and the owner of Cohen Caregiving Support Consultants. His 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, Bill was her primary caregiver and advocate not just her elder son. Bill has completed multiple caregiving and aging courses to the Alzheimer's Association and the Society of Certified Senior Advisors. He has a financial services and government background and earn business degrees from Boston and Portland State University's. He has lived in the Portland, Oregon area for almost 37 years with his wife of 41 years Lori. Bill, thank you so much for being here. Okay Bill, your case was interesting. You as a caregiver for your mother, right? And most caregivers are traditionally women, daughters, in laws. How was that worry?
Bill Cohen 1:23
Dr. Tomi Mitchell 1:23
Yeah, why? Exactly. That would have been very different and difficult. Can you kind of explain to the listeners why it was a challenge?
Bill Cohen 1:31
For me personally?
Dr. Tomi Mitchell 1:32
Bill Cohen 1:32
So well, I guess it, there was a question that I was going to step in and do it.
Dr. Tomi Mitchell 1:37
Bill Cohen 1:38
No, this is my mother, ah you know, regardless of faith, or degrees or not, I mean, what's on of the commandments, Honor thy mother and thy father, she brought me into this world, and I was going to take care of her. A lot of people asked me Well, do you have any siblings? Well, it's probably better than my brother wasn't about. But we fortunately did have a, to a great extent, a team effort, even though I was the point first, I was the primary caregiver. But yes, there's definitely differences ah in approaches. It's interesting we just had the Alzheimer's Association's, your country, this society, macginty conference, it was one about male caregivers, they tend not to go to support groups, get counseling, reach out for support, I can handle it, I can do it, they look at it more of a task oriented thing, rather than the nurturing side of it, which women tend to go.
Dr. Tomi Mitchell 2:27
And that's unfortunate, because being a caregiver is a huge role. Why do you think men are hassle hesitant? And how can we help them?
Unknown Speaker 2:34
Well, it goes back to the point that you spoke of that, generally, the caregiving, the nurturing, that side of things tends to fall upon women in the family, that's been a traditional role that roles as we know it, society, in general, are changing. So if there is a female involved, it tends to be the women who take on that role, become the main person. Sometimes I've heard even stories where you know, a wife or a sister or a daughter will say, Oh, yeah, and my brother, the prince will, you know, fly in? And oh, you know, well, we everything's happy, great, great to see where everything else and then fly out. And and he looks good. He's not doing the hard stuff and making mom mad. So it's sometimes I'm not saying that, that is why I'm just saying that's a great deal what happens.
Dr. Tomi Mitchell 3:22
Bill Cohen 3:22
There are different kinds of caregiving role, or caregiving, families take on different formats. And it could be anywhere from teamwork, collaborative, it can be sequential or tag team, it could be solitary, which I was all three of those at some point. But there's also the kind of family members and that can be both genders, where they're at a distance, or make they're kind of playing they use a football analogy, Monday morning quarterback, they're questioning things and getting all kinds of advice, but they don't step in and help.
Dr. Tomi Mitchell 3:51
Bill Cohen 3:52
Mm hmm, so those are some of the things I have always seen since I started attending a support group 16 years ago that I was definitely in the minority.
Dr. Tomi Mitchell 4:01
Bill Cohen 4:01
Now, I can't answer the question really why other than, again, men tend not to take that role. They don't think it's their job, their work there or there. They don't feel comfortable doing the, the cleaning, or the bathing, the feeding , ah this is. They weren't raised that way, ah unless they somehow their mom was sick, and they had a younger, younger siblings, and they took on that role, but otherwise, and raising a child isn't necessarily the same thing. Now in my case, I didn't have any kids either.
Dr. Tomi Mitchell 4:32
Bill Cohen 4:32
Have you ever heard the term dates, dual income no kids.
Dr. Tomi Mitchell 4:36
Bill Cohen 4:37
Though ah, so we didn't even have training with that. Suddenly, I have 70 something year old parent on my hands exhibiting childlike behaviors.
So it's a, it's a tough call, in a atleast in the states, I've heard figure before we've gone from about one out of five Dementia Caregivers being male. Now it's about one out of three. And my most recent clients, most of them are men, interestingly, and sometimes they're the ones who are so to speak, herding the cats, herding the families to get together for meetings and to take care of the parents care, which is good. It's a good thing.
Dr. Tomi Mitchell 5:14
Yes, No, that's awesome. Well, the next question might be kind of obvious, but I'm going to ask you anyway. So why did you become a caregiving consultant? And did you ever imagine that you become a caregiver, and then a volunteer, and then advisor for caregivers, because you took this like full circle, you'd erase everything?
Bill Cohen 5:32
Mm hmm. Again, if you told me 16, 17 years ago that I'd be doing what I'm doing now and it was said no way. Because all my work beforehand, although they were they have contribute to what I do now. My business degrees, customer service, helping people government work, financial work, all of it was totally unrelated to health care in your care, dementia care. So again, after mom passed away, my firt, my first thought to it, well, I'll keep going to the support group, and help others go through like others told me, I became the facilitator and as you said, volunteer, and the locked in Alzheimers and all these other things. And I still thought when I was going to retire, that I was just going to do more of that. But I came across this consultant right around this time, five years ago, did my research and said, I can do this. This is a natural extension. It's something I can do in my encore career, when I retire. There was some other things I was looking at. But I'm so glad he did this because those didn't feel feed my soul that didn't feed my passion. This does. And this is my encore career and everything. Even though I went as we were talking about the grieving process, everything I've done since has been in my mom's memory and her honor, including my fundraising. It's called Team Sheila after my mom, which is what we call it when we were caregiving for two.
Dr. Tomi Mitchell 6:49
Wow, that's beautiful. I love it, how it is like lights, your soul, your passion. And that's what I believe it should be for all of us. Ideally, we should be authentic and really find do things that move us. And so often those things that move us are inspired by life events. And in your case, seeing your mom Sheila goes through this very tragic illness because Alzheimer's is cruel.
Bill Cohen 7:13
It is, it was, it was gut wrenching. It was emotional. It was challenging. But in the other hand, a lot of it was gratifying.
Dr. Tomi Mitchell 7:19
Bill Cohen 7:20
It's also educational and amazing to watch as I learn things, to educate myself what to expect. Now this is happening. I wasn't totally surprised that a lot of it was expected, yeah the different stages, different behaviors, different as the disease took over her body and deteriorated her. And so that, that I think, Okay, what's next? What's next? I just took it that way. But again, it was very gratifying to you know, take care of her. And you know, another point going back to your earlier question is the nurturing side. I just wrote something about this. I don't think because of the relationship my mother and I had and the kind of person she was and the way she raised me brought out my loving my nurturing side.
And I, I sometimes referred to as my first female friends was like my female role model.
Dr. Tomi Mitchell 8:10
Oh my gosh.
Bill Cohen 8:11
As she was.
Dr. Tomi Mitchell 8:11
I'm sorry to interrupt Bill but honestly, something just came to mind to y'all all you mothers and fathers who are listening, the love and nurturing support that you give your children from birth to adult stages. We'll come back I believe it multiple fold. You might not see it when they're teenagers or when they're just being little brat. No at all.
Bill Cohen 8:32
I hate you. I hate you.
Dr. Tomi Mitchell 8:33
I hate you. But honestly, like Bill isn't a wonderful example where that love that nurturing came out. And he wasn't like the traditional like, he's a guy we all raised in a generation where guys are really more macho than anything else. Guys don't have feelings. Guys don't cry. But there are these men do men have feelings. So parents remember there is some people. People joke about, you know, the adult children will pick their seniors home for their kids. It doesn't have to be that way. You know.
Bill Cohen 9:04
That's partly why they say that thing don't ever put me get blah, blah place because they're afraid when their kids are going to put them.
Dr. Tomi Mitchell 9:11
I know are you hear that. Yeah you hear it so often. And you know what everything that's happened in the world this past two years, you, you hear it even more because there's a.
Bill Cohen 9:20
Unfortunately most people I have dealt with want to do the right thing. They want to find the right fit, they want to put their loved one in the right kind of environment where they're going to get air the activities.
Dr. Tomi Mitchell 9:31
Bill Cohen 9:31
Loving and nurturing.
Dr. Tomi Mitchell 9:32
And that is so important. Like to reach out and you know, be proactive, because let's face it, aging is a gift if we get to, you know, grow old and you know, have more great more salt and pepper and you know, change. It's a blessing. But ideally, we hope that we go through that process with our health and if we don't have health have family, right? Because Bill you will like a blanket of protection over your mom.
Bill Cohen 9:58
Mmm mm, right.
Dr. Tomi Mitchell 9:59
Bill Cohen 9:59
And I know in a large part of your program is about health and wellness.
And even though and I could talk about this, my risk factors are different than my mom, I don't have her risk factors because of the things she was exposed to. And she did. I am very proactive about my health, and most of my family has lived has been living into their late 80s, if not 90ish, and they didn't take care of themselves, they ate horrible foods. And well, probably some extent, some things like fats and what have you, they didn't have as much awareness. But of course, they didn't eat as much processed foods.
Dr. Tomi Mitchell 10:34
Bill Cohen 10:34
So yeah, two sides of that coin. So I fully expect by being proactive to live into well into my 90s. If not 100, I want to be one of those super agers. Supercentenarians, right?
Dr. Tomi Mitchell 10:46
Yeah, definitely, I can see doing that just from what I'm a little bit I know about you. Number one, you're actively using your brain. So many people when they hit a magical age of 65, or whatever, they think, Oh, I'm retired, I'm going to go to my rocking chair. I'm sorry, that's one of the fastest ways to the grave, is to just pause not to, you know, share your value to the world. And then you mentioned the proactive wellness piece, hypertension or high blood pressure is one of the biggest risk factors for dementia. We want our blood pressure's ideally in our you know, 20s 30s 40s 50s the top number to be in ideally low teens or 120s. You know what, no 140s 150s, because that really impacts our brain. And unfortunately, in today's modern society, despite we can take people to the moon, wherever we haven't cured dementia, or Alzheimer's, there is no cure.
Bill Cohen 11:37
Dr. Tomi Mitchell 11:38
And for me, over the past decade of you know, practicing when a patient has the diagnosis of Alzheimer's, it's actually usually the family that comes and talks to me one of the first questions they ask are one of the supports, and inside my heart kind of sinks because really aren't that many, but you feel.
Bill Cohen 11:54
Dr. Tomi Mitchell 11:55
Right? So maybe Bill could you shed some light in the resources that you're aware of in the North American continent and outside if you're privy to that information.
Bill Cohen 12:04
Uhmm mmm, So and that is unfortunately, a sad state of most of the of our healthcare systems. And I think the states is even worse than your system, that people unfortunately, most of our primary care physicians have little or no geriatric or nutrition training that's sorely lacking. And even if they do, or they get to a geriatric physician, or a neurologist, they may not get any answers about here's where you can go, here's who you can talk to this is how you can get support. And how are you doing? Not just the the person with dementia or the mild cognitive impairment, the how are you doing? What do you need, and very little is offered. And this is what I hear all the time and my clients and in my sort of support groups, and it's really sad. So the first place I usually direct people, that is where I went was in the States, the Alzheimer's Association, and then Canada with the Alzheimer's Society. There are support groups, there's education, all kinds of things. I believe the Alzheimer society has something similar, the Alzheimer's Association, and I know you have listeners here, too. They have an 800 helpline, 24 hours, always staff somebody will answer and will provide support answers or direct you to where to go, which is really nice thing to have. I could provide that to you. And you can put it in the show notes, but go on in the States, ALZ.ORG and it's plastered all over the website. So and again, that was the first thing I did. And I highly recommend people, I went to the support group, it was a good experience. Again, if I had a bad experience, I probably wouldn't be sitting here I probably would have walked away after mom passed away. I would say I'm done. I did my thing. But it was a good experience. And it has continued to be that way. Because they're doing a lot of good work, not just on the local level national level blood research, fundraising. They're the largest non profit fundraiser for Alzheimer's research. And that's all kinds of dementia even though it's what's in their well known name. So that's the first part but also right around your areas. There are area aging agencies, government, a lot of support, subsidies, various programs, again, support groups, education, things like that. So check your local agencies, check your local nonprofits, many charitable and religious organizations have support groups or they may have things I'm pretty sure that Meals on Wheels is up there too, isn't it?
Dr. Tomi Mitchell 12:24
Yeah, we have out here in Canada.
Bill Cohen 14:33
Right, right. So the senior centers look at progress put for yourself and that for a temporary state. If you find your once things open up even more, whether it's Meals on Wheels and senior centers, but also adult tasters, adult take care. These are marvelous places with activities and meals and socialization. These are things that are very important. They're very, they're sadly, very few of them, but we have one here and there are a few around our country and I think I've heard some in Canada, where it's both child care and adult care. And they combine them during the day, which is great, especially if the person with dementia, the elder loves kids and to have that activity and that that smiling and I remember when my mom and her care community, they didn't have a, that kind of service. But they brought kids in all the time from the local, a local Academy, and should all look at the little children, the beautiful she loved every second of them.
Dr. Tomi Mitchell 15:27
Yeah, that's a beautiful program. My kids are in a daycare, which has a similar model. Well, again, pre COVID, the seniors and the daycare kids would mingle together because they're in the same building. And honestly, it melts my heart, especially my eldest one because she knows when someone is older with, you know, gray hair, she calls him grandpa, because that's what she calls her grandpa. So and it was just the sweetest thing, just seeing the seniors with these little tykes just reading together doing activities together, it melt my heart. And honestly, I think in Toronto, there's a really big center that has this model. But it needs to be spread more like it needs to be the norm. Because our older generation, our younger generation have so much to share. Most seniors regardless of their educational background, can read, a they can read those books and usually large print to start off with. Right so they can read to the child, right? Or when they bring their animals together and just seeing the mix, it melts my heart and this was kind of out of topic, but I definitely believe in this. And that's one of the reasons I picked the daycare my kids attend was because of that intergenerational blending.
Bill Cohen 16:36
Mm hmm. Do they bring in either a real animals like llamas? Do they, did you use any of the pet robotic pets?
Dr. Tomi Mitchell 16:44
They've got they've had farm animals come and obviously the seniors pets so they have like little dogs and the kids like to play with them. But yeah, they they've had meals together with a Christmas or Valentine's like they do concerts where the little kids do concepts for the seniors? I don't know. It's just it melts my heart
Bill Cohen 17:04
And if they can bring a music therapist as well.
Dr. Tomi Mitchell 17:06
Yes, exactly. Yes.
Bill Cohen 17:08
I collaborate with some of those as well.
Dr. Tomi Mitchell 17:10
Yeah, it's so beautiful. It really like.
Bill Cohen 17:12
Like a good, can I tell you a quick story.
Dr. Tomi Mitchell 17:13
Bill Cohen 17:14
An idea of how I can help people. I love this story because it's a great one of collaboration, how somebody really benefited. So again, I'm in Portland, Oregon. This gentleman was in his early to mid 80s. And early to mid stage Alzheimer's. He's in a care home or residential facilities small and his daughter's in Chicago. And she by collaborating with the caregivers in the home, a music therapist, a pet therapist, and myself, he didn't have anybody who's like him. He needed somebody to talk to, he needed companionship. He was also very anxious. He was trying to go back to his place of work and trying to escape. He wanted to go back there, he needed something to do. He didn't know anybody to talk to. He wanted a job. And so I spent time with him, I go on walks with him. I made up business cards, just like mine with his picture on it. His name is titled. And I would have him do invoices and supply, purchase orders, things like that and give him money in an envelope that the daughter gav