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Are You Ready to Embark on a Courageous Caregiving Journey?

Betsy Wurzel, is a lifelong caregiver and passionate advocate for cognitive impairment and caregiving.

Betsy's journey started at age 4 when her mother's illness ignited her calling to be a caregiver. She later became an LPN, exploring various roles before marrying Matthew Sloan in 1980.

But it was Matt's memory issues and later diagnosis of Early Onset Alzheimer's that set Betsy on an advocacy mission. She fought relentlessly for Matt's proper diagnosis and end-of-life care, defying initial disbelief due to his age.

In 2018, Betsy's advocacy reached a wider audience when her videos caught the attention of Jeanne White, leading to her own show, "Chatting with Betsy." In 2019, she founded the #KickAlzheimersAss Movement Group on Facebook, ensuring no one faces caregiving alone.

In 2021, Betsy received the Caregiving Visionary Advocate Award, a testament to her unwavering commitment. Her journey continues as she remains a caregiver, driven by the promise she made to Matt.

Discover Betsy's incredible story, her advocacy for cognitive impairment, and her unwavering dedication to caregivers in this impactful episode.

How to Navigate End of Life as a Family Caregiver with Betsy Wurzel

0:03:04 Frustration with Doctors' Denial of Memory Problems
0:07:56 Stunned by Incompetence of Hospice Care System
0:09:57 Struggles with the Healthcare System
0:13:35 Dementia and Pain: Misconceptions and Personal Experience
0:17:49 The Emotional Journey of Loss and Separation
0:19:48 Lack of Compassion and Support in the Healthcare System
0:22:13 The Need for Early Intervention in Caregiving Journey
0:26:22 Celebrating Life and Joy Amidst Caregiving Challenges
0:30:35 Shifting mindset and overcoming negativity in caregiving journey
0:33:54 Grieving with hope and valuable life lessons from caregiving
0:36:19 Betsy's Show - Bringing Visibility to Dementia Caregivers
0:39:18 Challenging the Defeatist Attitude in Healthcare

Discovering the intricacies of dementia caregiving, this episode sheds light on the personal experiences and challenges faced by caregivers. This heartwarming discussion provided valuable insights for those embarking on this journey.

The Early Challenges of Diagnosis

The initial hurdle in dementia care often lies in diagnosis. This episode revealed the frustration many face when symptoms are dismissed or misinterpreted, particularly in early-onset cases. It's a reminder of the importance of persistence and advocating for accurate medical evaluations.

Navigating the Healthcare System

One of the biggest challenges highlighted is navigating the complexities of the healthcare system. From securing a diagnosis to obtaining appropriate care, the journey can be fraught with obstacles. However, the episode emphasized the importance of advocacy and perseverance in ensuring the best care for loved ones.

The Power of Advocacy in Caregiving

A key takeaway from the episode was the crucial role of advocacy in caregiving. Whether challenging healthcare professionals or seeking better care options, the discussion underscored the importance of speaking up and fighting for the rights of those with dementia.

Embracing the Emotional Rollercoaster

Caregiving for someone with dementia is as emotional as it is physical. The episode touched on the rollercoaster of emotions caregivers go through – from frustration and despair to love and deep connection. Embracing these emotions is part of the journey.

Learning and Growing Through the Experience

Despite the challenges, caregiving is also an opportunity for personal growth and learning. The episode shared insights on how caregivers develop resilience, patience, and a deeper understanding of unconditional love through their experiences.

Conclusion: A Path of Resilience and Love

This episode paints a picture of the dementia caregiving journey as one of resilience, advocacy, and deep emotional connection. It's a path that, while challenging, offers profound lessons in love, patience, and strength. For those on this journey, you're not alone – your experiences are shared, your challenges understood, and your resilience admired.

SOCIAL LINKS:

Facebook page: Betsy E. Wurzel
Personal: https://www.facebook.com/profile.php?id=100005271496390&mibextid=2JQ9oc
#Kick Alzheimer's Ass Movement Group Page:
https://m.facebook.com/groups/545809349256035/?ref=share&mibextid=I6gGtw
LinkedIn Page
https://www.linkedin.com/in/betsy-wurzel-90a7b61a8
Chatting with Betsy on Spreaker:
https://www.spreaker.com/show/chatting-with-betsy

Listen to Podcast

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Transcript

Introducing Betsy Wurzel

[0:00] So today's guest is probably one of my all-time favorite guests and people that I have met in my foray onto the whole podcast platform.

Betsy Wurzel is the host of Chatting with Betsy, And I was privileged enough to be on her podcast several times.

And this time I am privileged to have Betsy join us in my podcast, Dementia Caregiving for Families, because Betsy brought her message to the world because of her husband, Matt, who was diagnosed with early-onset Alzheimer's disease in his late 50s or early 60s.

I'm not quite sure of the year that he was diagnosed.

But Betsy is one of my all-time favorite people to be around.

So without any further ado, let us welcome to Dementia Caregiving for Families, Ms. Betsy Wurzel.

Frustration with Doctors' Denial of Memory Problems

[3:04] Okay. First, I'm going to show a picture. That's okay. Of course that is.

He was a good looking man.

Thank you. Wow.

[3:15] Matt was diagnosed at the age of 56 with early onset Alzheimer's.

Getting that diagnosis was very frustrating because doctors didn't believe that his primary doctor didn't believe that he was having memory problems, which he was.

Unknown to me, Matt was having problems at work.

And when I took Matt to a neuropsychologist, that was February 2010, she had the audacity to say, when the results came in, he couldn't possibly be that bad.

Accused him of being non-compliant.

So I told Matt he better be cooperative because this test is expensive and Matt told me I was compliant Betsy I told her I couldn't remember what she just showed me now Lizette I'm not the only one I've heard this from other people that even I have interviewed why do they blame the patient that makes my blood boil I didn't know back then what you know now yeah I will tell you one of my biggest frustrations, you used the word non-compliant.

[4:35] I hate that term. I think that's a term that needs to be thrown away because non-compliant implies that the person truly understands from a very deep level exactly what the consequences of their actions are.

[4:54] So I always use this as an example. I had an occupational therapist who was as my patient.

So she had the knowledge, the same knowledge I have about things.

And when I made recommendations and she told me no, I could call her non-compliant because she really understood and knew what the consequences of that decision were.

Calling a patient who is not taking their medicine, for example, because they cannot remember, noncompliant is a flat lie.

So being told by a neuropsychologist that Matt is noncompliant because he doesn't appear to be putting his best effort forth is harmful.

Yes. Yes. She told us that Matt had a deep psychological problem he was misdiagnosed as being depressed he was on antidepressants he was on medications to help him focus that didn't help it was pretty amazing that the company doctor who i don't know if she saw him in person or not um wrote me a letter and that's primary or a cure doctor letter, she suspected dementia without seeing the test results.

[6:20] She suspected it.

So she really was the first person who identified something was going on. Yes. Yes.

Barriers to Diagnosis and Medication

[6:33] And then after that, once he got diagnosed, what kind of other barriers and problems did you run into?

I had a problem of getting him diagnosed because I took him to two different neurologists and they said, oh, he's too young.

He can't have it. He's too young.

They didn't know back in 2010 what they know now. Neither did I.

But um getting him properly diagnosed fighting to get him diagnosed getting him on medication, and then um matt i was very fortunate that matt progressed slowly and he didn't have behavioral issues really until near the end of his life and it wasn't until near the end of his life getting him on hospice um i went with the recommendation from the primary doctor it was a hospice out of our local hospital connected to a huge huge medical care system health care system which isn't the best and um i was so stunned at their incompetence tell me about that it.

Stunned by Incompetence of Hospice Care System

[7:56] Tell me about that. Tell me about their incompetence. What happened? I could write a book.

Well, you should write a book.

They thought they were dealing with a meek housewife. They had no idea who they were dealing with.

I'm petite, but I got a big mouth and not afraid to use it.

I kept calling hospice because Matt was agitated and the medication wasn't working.

They kept telling me to get more of the same. It wasn't working.

And I said, it's not working. So those nasty social worker came to my house, accused me of not giving the medication right, talked down to me.

And she said, no one calls up hospice as much as you. you. So I want to know why you're calling.

And I put her in her place real quick. I said, let me tell you something.

You do not talk to me that way. She needs to tone it down.

Okay. I said, I worked as a licensed practical nurse. I know how to give medication.

Don't talk to me like I'm stupid because I'm not stupid.

I'm telling you that medicine's not not working. I'm telling you, Matt's dying. You don't.

[9:20] And that he's agitated. And to give more of this saying, when I'm telling you it's not working, it doesn't make any sense.

And I said, and I am a husband's advocate. I will cool you up as much as I want until there is a solution to his problem that I keep complaining about.

Right. Absolutely. And that is exactly what you need to do. You are his voice. You were his voice.

He didn't have a voice at that time. And that's what family caregivers need to understand.

They need to advocate for themselves as well as the person that they're helping.

Struggles with the Healthcare System

[9:57] What else did you learn from your situation dealing with the health care system?

Did you know that caring for a person with dementia doesn't have to be this hard?

If you are struggling and you would like to join our next free workshop, the topic of the workshop is three tips how to avoid challenging dementia behaviors without stress anxiety or burnout I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop on, If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

[11:01] It's severely broken and people, unfortunately, I feel is that it's been my experience.

You know, a hospice is supposed to be supportive, right?

Giving emotional support. That's what was in his plan, emotional, spiritual support.

Received zero support. A lot of aggravation, but zero support.

If I had to do it all over again and tell your viewers, please get someone, if you could afford to hire them, to help you navigate the hospice process and to view hospices.

Don't wait until the last minute like I was.

Start navigating. um hire geriatric consultant nurse consultant well whoever you could find even a death doula um get someone to help you you have to pay out of pocket for that if i would have i should have done that yes that still would have died but maybe that could have intervened for me Right.

And it would not have been so difficult for you to constantly be fighting this system. Yeah.

Challenging the Hospice Nurse's Assessment

[12:22] What happened was, well, I told the hospice nurse that came, she said to me, Matt talks? I said, yes, Matt talks.

She said, well, he can't be on hospice in three months if he's still talking.

And that's another thing that has to change.

Change. So I said, you need to tell me that he could be hallucinating 24-7 care, but because you hear him talk for a few minutes, he can't be in hospice?

I said, that's ridiculous.

I said, but don't worry, he won't be here in three months because he's dying.

She said, no, he's not dying.

He's walking and talking. I said, I'm telling you, get your head out of that textbook.

Textbook not everyone textbook picture he's dying and two weeks later matt was gone oh my word, so his so it went pretty quickly there at the end yes and another thing was that i told the social worker matt complained of a headache my husband never complained and he said to me as plain as day he had a headache she had the nerve to tell me he couldn't possibly have a headache.

Dementia and Pain: Misconceptions and Personal Experience

[13:35] Why do people think that those with dementia can't have pain?

If they had it before they had dementia, they will have pain when they have dementia.

I don't get it. Absolutely. I recall many, many years ago after I had my babies, for probably six or seven years, I couldn't sit.

It. Like sitting, it hurt me to sit like my coccyx had gotten broken or out of place with the labor and delivery.

And I remember distinctly telling my husband one day, if I have dementia and I'm crying and I'm sitting in a chair, it's because my butt hurts because I couldn't sit. I couldn't sit on anything.

I couldn't sit on a chair like this. I couldn't sit in church.

I actually carried a gel cushion with me because it hurts so badly.

I had some massages and so on, and it took care of that.

But I know without a shadow of a doubt that if that were me, I would be hurting because I was hurting for six years in that particular spot. So you're 100% correct.

People with dementia do experience, if they had aches and pains before, they still have them.

They're just not able to to tell us that they're having those experiences.

[14:56] Yes, exactly. And then Matt fell one night.

It was a Friday night. Josh went out, Josh is my son.

And he fell. I called the hospice that Matt fell. I said, you're going to come out and assess him. Then they come out. They want to come out.

Neither did they call the next day for follow-up.

I called them up. I said, Matt fell. he's agitated so she told me to you know give him the medicine i gave him the medicine that saturday night sunday morning well son that saturday night he talked the whole night, fell out of bed i called the hospice i said i gave the medication didn't help i have chest pain i need help matt needs help or and he fell are you going to come out and assess him, the nurse had the nerve to say to me she didn't know wrong answer I told her wrong answer I said I'll tell you what I know I'm going to call you every minute you know what you're doing and in between calling you I said I'm going to call the regional director and I'm going to get my I'm going to complain get my husband off of this hospice and I'll call in medicare to report worth your incompetence.

And how did she respond to that? How did the hospice respond to your advocating for him?

[16:24] And she said, oh, don't do that, Mrs. Sloan. Sloan is my married name.

She goes, I'll call up my nurse manager. I said, okay. She called me back.

My nurse manager said that Matt could come up to the hospice unit in the hospital.

Do you want that? And I said, yes, that's what I'm asking for.

So she said yeah i hope the ambulance will be there i said i can't transport him otherwise i would have i waited until 5 p.m for that ambulance service to come and the hospice actually called me the the hospice unit in the hospital called and she said is matt here yet i said do you see him am there do you see him there i said no he's not there he's still at home i'm waiting, they didn't even know if he was there or not there's only five patients on that floor right well and they're the nurses they're the doctors they should know yeah whether somebody you know if the ems was bringing him and transporting him there's a procedure to hand him off they should know whether or not he's there, so that right there so then he finally went up there and I told Josh I said Josh daddy's not coming home, I'm so sorry um.

The Emotional Journey of Loss and Separation

[17:49] And I know this is a hard time of year, and I'm sorry to have asked you.

No, no, no, it's okay. I get emotional.

You know what? It's perfectly okay to get emotional. We're emotional creatures.

It's part of, you know, death is separation, and it's not easy.

I know you're a few years past that, but it's still always going to be there.

Yes, yes, that's true. It's okay.

I said to josh that he's going to his heavenly home i commented at home.

[18:27] And they thought a hostage because they're so incompetent and stupid they thought he was just up there for medication adjustment that's how competent they were and after two days they said to me oh betsy now we see what you're talking about you think like why would you think i would would make it up.

And I had called up the director of that hospice and told her I was not happy.

She wanted to meet with me.

And I met with Carmela and I told her, I'm not happy.

This is unacceptable how Matt was treated and me.

And she said, well, apparently someone dropped the ball. Because I said there was no follow-up.

And I said, listen, my husband's not a bull. He's a human human being, number one.

Number two, you would not accept this treatment.

Nobody on this floor would accept this treatment. Do not expect me to accept this treatment.

I said, you have no idea who I am and who you're dealing with.

[19:32] And I, I was just, It just was shocking, the lack of compassion, of caring for this facility, hospice nurses.

Lack of Compassion and Support in the Healthcare System

[19:48] And Lizette, I had people coming in to see who the big mouth was, to see how Matt was doing.

They really wanted to see who was causing the waves.

[20:00] That's funny. So was it only the hospice and the diagnosing or was it the whole journey with the health care system that put up barrier after barrier for you and Matt?

It was really getting the doctors to believe us, first of all, that Matt was having a memory problem because his primary care blew me off until he got the letter from the doctor.

Then he called me up. He said, Betsy, I won't use his language.

You know what's going on and i said i told you he was having memory problems i told you you didn't believe me and i went through a doctor the neuropsychologist two neurologists and all of them were like this cannot possibly be right he's too young and i had i had a intuition intuition, then that would get this young.

I myself did not know you could get dementia at any age.

I really did not know at that time, like I know now.

[21:11] And I'm kind of envious of caregivers now, Lizette, because there's so much information available, so many podcasts, so many people like like yourself, so many groups that I'm going to sound New Jersey harsh here, but I will tell your audience, there's no excuse not to be educated now, not any excuse at all.

And if you can't find the time to educate yourself, to make this journey easier for you and your loved one, then shame on on you yeah well no I I totally agree and I mean that's part of my mission is to like I know that you know you you actually came through this really well on you know because I've spoken with you about this before and it doesn't as hard as it was you were not the the caregiver that was falling apart like you were still keeping it together but you kept it together.

The Need for Early Intervention in Caregiving Journey

[22:13] Because you had a definitive purpose that you wanted to accomplish with him.

Where my passion and my mission comes in is, you know, you have the caregivers who wait too long.

And they don't do anything because they just kind of adjust and they adjust and they adjust.

And then one day it's just a tipping point.

And it's, you know, they never recover.

And even after their loved one passes away, they're the ones that are resentful and have lost their own health and have lost their own relationships because they were not proactive.

And so my mission is to try to catch people earlier on in the journey so that they don't get to that point where they fall apart by giving them the support and the education and everything that they need earlier on.

The biggest problem, though, is that people don't realize that they need help at the beginning.

[23:21] Like, immediately when you get a diagnosis of dementia, that is when you have to start planning for it.

You can't wait a year or two or three, even if the person's not necessarily at that moment in time showing the signs and the symptoms and you think it's not that bad.

If you wait, you've lost the opportunity to put structure in place for yourself and your loved one that you're helping to make it actually easier for both of you.

So that's my mission. That's my mission is to get to people earlier on so that they don't get to that overwhelmed point.

Appreciation for Support and Education in Caregiving

[24:07] Lizette, I love what you're doing. And I just want to tell your listeners, I wished there was Lizette, you know, 13 years ago.

I wish there was someone like you who had a group, who you have free workshops.

Workshops and if anyone's listening you better jump on Lizette's workshops you bet you really need to you need to get into her group and you really need to educate yourself it makes such a big difference because my mother-in-law had Alzheimer's in 2000 there wasn't any information there wasn't any support I did not handle her hallucinations correctly when Matt hallucinated I was ready to do makes such a big difference yeah it does make such a tremendous big difference now what was your biggest takeaway now that you're on the other side of this you know when we're living through something a good analogy is you know the it's an open wound and it's hard but but now you have the scars.

[25:19] The wounds healed and the scars are there.

What is your biggest takeaway for people now from what you've learned that either you want to encourage people with or that you would have done differently or any big takeaway for people who are in a position where or they're either just finding out somebody they love has dementia, or if they're in the midst of it and they don't feel like they're coping, what would you advise people? What's your biggest takeaway?

I think people need to do definitely self-care.

Go for therapy, go for counseling. I went for counseling mid-journey with Matt.

[26:05] Because I was on the verge of a nervous breakdown with working and everything.

You do not have to be strong 24-7. That's baloney.

[26:15] You need to take care of yourself. And I have a saying, self-care is not being selfish.

Celebrating Life and Joy Amidst Caregiving Challenges

[26:22] It's literally a matter of your life and death.

If you want to enjoy life after caregiving, you need to take care of yourself during caregiving and it's a mindset you're going to get through this do not let this disease rob you of joy of living celebrate every holiday every occasion even if your loved one doesn't remember matt didn't remember i celebrated video your loved one take pictures of your celebrations and enjoy the moment don't worry about what am i i gonna do when they're like this or this way or that way and ask for help um like way before you think you need it yes uh start checking out hospices um check out you know if placement, that didn't need to be placed but if you know you're looking for placement you should really be looking and although of course the financial power of attorney and medical, and Lizette I have to I'm a believer and I have to give God the glory absolutely all day every day if it wasn't for my faith I wouldn't have gotten through because.

Battling Fibromyalgia and Migraines

[27:39] I have fibromyalgia. I suffer from migraines there. And I worked.

And I don't know how I made it through some days. By the grace of God, by the God's strength and grace, I made it through.

And I am basically healthy.

I have some minor issues. But thank God I'm sitting here today and I'm healthy. Right.

Speaking up against injustice and advocating for change

[28:05] But you have to take care of yourself. Yes. And you have to be an advocate.

If you're seeing injustice, you must speak up. Don't be afraid to cause a tsunami.

[28:16] You know, don't think like my mom, you know, back from her error.

Don't make ways. Be a good girl, Betsy. Keep quiet.

No, you can't keep quiet.

You have to point out people's mistakes and injustices being done.

And don't be afraid to speak up. And you can change hospices.

It was just too late in the game for Matt for me to change. Right.

I will tell you the most important thing. You said two things that's the most important for me.

Did you know that caring for a person with dementia doesn't have to be this hard?

If you are struggling and you would like to join our next free workshop, The topic of the workshop is Three Tips How to Avoid Challenging Dementia Behaviors Without Stress, Anxiety, or Burnout.

I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop.

If you'd like to register, message me the word.

[29:38] Workshop on Instagram or check out the link in the show notes below.

The first one was your faith.

[29:48] I have noticed a tremendous difference in how people come through this when they do come through it from a faith-based perspective and your own mindset.

Because I know for myself, when I was starting to deal with some issues with my dad, whenever it was a woe is me and doom and gloom, and I let myself go downhill, it was overwhelming and terrible and I couldn't function.

But the moment I stopped and said, no, we can do this.

And I started to think about all of the strengths that we have and the good things that we still have and focused upward, my life and my caregiving journey was entirely different.

Shifting mindset and overcoming negativity in caregiving journey

[30:35] And it all stemmed out of how I was thinking about it, which is, and I know I've spoken with you about this before, but which is one of the reasons I'm very afraid of these huge, big Facebook groups, like with 50, 60,000 people in where where people feel so anonymous and so quote-unquote safe that they just go, blah, and they just pour out this verbal vomit that just isn't helpful to the people who are reading it because there is such a stigma related to thinking processes.

[31:17] And when that's the common view, no wonder people are struggling because that's all they're hearing online is the doom and gloom and woe is me it can be easier you can make moments of joy you can come through this with your health intact you can there is so much that you can do and we actually as the caregiver can control that and so i i just think i think that's the most important thing for me you know all of the the other stuff is important Yes, the financials and all of those things are important, but unless you come from that other mindset first.

[32:02] It's almost impossible to come through this journey in a healthy way.

Yes. And then, you know, it's acceptance.

You have to accept what is not what you planned. Nothing is written in stone.

And also, it's believable is that like, even after caregiving, I didn't think I would feel guilty, but I did. So I let that go.

[32:27] But I know I'm going going to see matt again yes you will and i know he's having a great time in heaven and he wouldn't want to come down here on earth and he's and i had that hope i'm going to see him again he's feasting at that banquet table every day not just on thanksgiving right and you can um integrate your grieving with your living i honor matt all the time thanksgiving we gave a salute i honor his birthday i show you know uh pictures why not absolutely you can keep talking about your loved one i will be dead or not be able to talk when i start talking about matt matt is my catalyst for what i do he was my inspiration he's why i went in my car he's why i'm doing what i'm doing in today and it's because of that for sure and what a legacy he has left through you and i know josh helps you a lot with what you do and what what a testimony to to your your wonderful marriage that you were such a a good advocate for him and able to help him through this process and yes it is it is hard to lose somebody you love i i totally understand that but we can still still grieve with hope, especially when you're a believer.

Grieving with hope and valuable life lessons from caregiving

[33:54] And also, Liz, that children, even adults, they can learn life valuable lessons.

Caregiving. Matt and Josh had such a deep connection.

[34:06] Matt knew Joshua's name right up until he couldn't talk anymore.

Sometimes he would get us confused.

Matt called me Boobie instead of Betsy. That's close enough.

And I learned a deeper love connection with Matt.

And it's hard to put into words but i just knew like you have a connection with your husband and you know and i was interviewed a caregiver who cared for her husband and she had a deep love connection we i understood we understood each other because when your loved one can no longer do for you you do for them out of love josh did for his dad out of love knowing his dad could could not do anything for him anymore.

And it's a beautiful, deep love connection.

Absolutely. Unconditional love. Yes. That I got to experience.

100% if the roles had been reversed, he would have done the same for you.

[35:11] I don't know. I think he would have thrown me in the hole. That's not true.

True um but it's um you know people i want to tell people you can not only survive during caregiving you can thrive i did you can you can survive and thrive it's a mindset there really is it is mindset let this disease defeat you there's life after caregiving so go live it life was meant for living the older i get is that i so appreciate life so much more you know the bible says we make it to 70 it's a gift anything after 70 is a blessing thing yeah i'll be six six next week happy birthday every day is a gift every moment and i'm really prioritizing my time now more than ever for sure for sure so betsy how can people listen to you on your program.

Betsy's Show - Bringing Visibility to Dementia Caregivers

[36:19] My show is Chatting with Betsy. I'm on Spreaker, Spotify, YouTube, Amazon Music, to name a few, just to name a few.

Awesome. And we will put all of Betsy's information in the show notes.

It is a wonderful program. I know she has a lot of good people that she interviews on her program.

So thank you for doing that. And thank you for bringing attention to people who are family caregivers of particularly mostly people living with dementia.

And I really appreciate the visibility that you're bringing to this particular subject because it has been it's been in the dark corners way too long.

You know, people ask me a lot of frequently people say, but dementia is new. I'm like, no, it's not.

It's it's not new. It's been around for like the first records that I could find of people that had symptoms that we now would recognize as dementia were in the Egyptian times.

So it's not new. It's just been swept under the rug.

And the longer we keep sweeping it under the rug and having a stigma related to talking about it and seeking help earlier and more frequently and being the squeaky wheel.

[37:37] I want people to understand not remembering is not normal, like short-term memory deficits, not forgetful, but that is not normal part of aging.

And too many doctors still tell you, oh, that's just a normal part of aging. We have to change.

[37:57] If I can't get to all the doctors, then I have to get to the people who are going to the doctors.

So we can change how people go to the doctor and be able to educate them that they say to the doctor this is not normal you need to find out what's wrong and keep being the squeaky wheel yes um i will also add my brother my older brother bradley, had memory problems before he died and the neurologist did not want to believe that he had dementia but what what frustrates me is now twice you've said the neurologist those are the people who are supposed to be the brain specialist and they are not even recognizing it and then you have this expectation that a family practice doctor or gp or if you know the first line of defense is going to pick it up that's not some reasonable expectation it's mind-boggling when the matt's primary care doctor started having the clock that you do a little for matt i saw i wish you would have had this you know eight years ago at that time he rolled his eyes and he said oh oh, Betsy, there's nothing I could have done for Matt anyway.

Challenging the Defeatist Attitude in Healthcare

[39:18] Well, that's a very defeatist attitude for a doctor to have.

So that's it, Lizette. I mean, the attitude, you just want to get them off their high horse.

[39:33] I was interviewed in the newspaper, and the doctor happened to read it.

And he said, I know your frustration, Betsy, because there's nothing I could have done from it. I said, you could have listened to us. You could have believed us.

Right. And that's the thing.

And I told that to a social worker.

When a caregiver tells you their loved one's dying, agitated, is in pain, you need to believe them.

Because we're not taking this crap anymore. You're not believing us.

[40:05] And I used to say this when I first got in my car to do videos.

I'll tell your audience. audience folks it's time to get out of the dementia closet we need to shine a light yes on loved ones this disease show your journeys talk about it don't be afraid about what people think don't worry about what people think who cares we need to personalize this disease with names and faces yes i've been saying that for years yes and i 100 agree and we're both going to keep Keep telling people and educating them and making sure that they know where to go for help.

And they can listen to you. They can listen to me.

There are other reputable podcasts out there, but they can contact you, you know, and listen to you on speaking with Betsy.

And then they can reach me through, you know, all of my information later on in the show notes and then come to my free workshop because it's once a month.

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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