Tom’s mother had Parkinson’s and Alzheimer’s. He shares his journey to finding the dementia care services needed for a loved one with dementia. This is Tom’s story.
Tom Geiser is a happily married 48 year old father of two that lives in St. Louis. When his mother was diagnosed with Parkinson’s and Alzheimer’s, he became her caregiver. This experience, difficult as it is, left him with a different perspective on life and a desire to support other caregivers find the dementia care they need.
After his mother’s passing, he created a podcast where he shares his insights and solid advice for family caregivers who might be facing this difficult situation now or in the future.
Read, and share.
When was your Mother Diagnosed with Parkinson’s?
My mom was diagnosed with Parkinson’s in 2013. Maybe earlier.
When she got diagnosed with Parkinson’s, she was still herself. Then the Parkinson’s brought on Alzheimer’s disease. We noticed somewhat of a decline and we were hesitant between seeing somebody about it or thinking it was just a phase.
A couple of times she was a little out of it and the doctor would say she had a urinary tract infection (UTI). The doctor would prescribe her antibiotics and then she would be sort of okay. Honestly, I don’t think her doctor was all that great.
It was only a year or two after she was formally diagnosed with Parkinson’s, that she showed signs of memory loss and bad hearing, typical of a person with dementia.
She got hearing aids but she didn’t always wear them. She didn’t like them, they were too loud. And that’s when we suspected things were not well. She was usually very happy go lucky, friendly, nice and she got very irritable.
So, we had her see a gerontologist at St. Louis University Hospital. He diagnosed her with dementia although it could have also been the Parkinson’s cognitive decline phase. That’s when we realized her behavior matched her diagnosis.
My dad was her caregiver at that time but it was getting tougher for him to provide her with the level of care she a person with Alzheimer’s needs.
He wasn’t very healthy. He was overweight. He had a bad heart. And changing her clothes or helping her go to the bathroom was a 15, 20 minute ordeal. And it was taking a toll on her as well.
Her demise was relatively quick. She probably had the symptoms for a long time and we either turned a blind eye to it or blamed it on a UTI or we assumed she was getting forgetful or that it was her Parkinson’s disease.
Finding the Dementia Care they Need: The Nursing Home Decision and the Medicaid Man
The decision of looking into assisted living facilities came one day when my dad woke up early and all the lights in the home were on, the oven was on and open.
My dad knew this was getting serious as she could hurt herself and him. We didn’t want any of that to happen and most of our family members were not able to perform the necessary caregiving duties.
When we decided to put her into nursing home care there was the issue of finances. My dad was not independently wealthy, both me and one of my sisters had growing families. My other sister had a job that wasn’t great paying.
We had to make sure she could receive Medicaid because the costs of care would have bankrupted my dad. He would have been out on the street. We would have taken him in. But he has pride. He still has his faculties.
And we wanted him to feel good.
I asked my friend who’s a financial planner and knew estate lawyers. He introduced me to one of his friends, a lawyer, who said, “you should talk to this guy, he calls himself the Medicaid man”
That’s how we found the “Medicaid man”. I think he worked for the IRS. And he specifically helped out families in our situation.
And we met with him.
I would recommend to anyone going through this to google it, to ask around. There are people who can help you get everything in order so the money you worked hard to save isn’t flying out the door. And you end up one of these horrific stories of being homeless because of the special care expenses. It helps with the emotional toll as well.
Never wait until the last minute for care planning because that adds a lot of extra stress on everybody. And you should start researching financial aid and long term care facilities early on.
The Statistics of Finding a Suitable Nursing Home once you Qualify for Medicaid
My dad qualifies for Medicaid after a six month process. And not every facility takes Medicaid, so that limits your choices. If you’re independently wealthy, the sky’s the limit.
But, let’s say that’s not the case and that 50% of the places don’t take Medicaid. Then you’re limited to 50% that do. Even within those facilities, they only have so many Medicaid beds. So you can wipe out another 50%.
In the end, if you are lucky, you’re talking to 25% of the medical care facilities in your area.
Luckily we were in St. Louis, Missouri. It’s a large city, which is good. But if you’re in a smaller town, you may have less choices. If you’re in a really small town, you may have no other choices.
My dad really wanted my mom to be relatively close to him. He didn’t want an hour drive. You’re now looking at 12.5% that might have a Medicaid bed that are within 45 minutes of your house.
Then you have to visit the specific facilities, because at least in Missouri, there’s no guide. There’s nothing that ranks them. No certification. It’s the Wild West. Anybody could pass all these rules and say they’re a facility, but there are no certificates.
You can Google reviews. but oftentimes you’re going to get a lot of complainers no matter what. It does help. But sometimes reviews are one sided or they have an ax to grind or a relative that works there.
So sometimes they are helpful, sometimes they’re not.
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Have you Taken the MindCrowd Memory and Attention Test?
Yes, and I think the test is phenomenal. I love the test because oftentimes you take a test online and it’s almost like you could be multitasking.
You may think you have 15 minutes and you’ll take it and by that second round I realize I’ve got to really pay attention to this. Otherwise, it’s never going to work out. So it is a phenomenal test.
I think I got a better than average score but I didn’t care much about that.
I have a pretty good memory. I was one of those guys in college that could cram up the night before, remember it for the next six hours and take the test and aced it. I remember phone numbers of friends from grade school. Weird things like that.
When I was a kid and go to birthday parties, they would have this game where they would have a tray with 25 things on it. And then they’d hide the tray and you had to name all the things on the tray. And it was like a quiz to win a prize at a birthday party. And I would always win, I would concentrate and win.
So, I was taking the memory test and I realize these words don’t go together. How am I going to get better at this task? I really had to concentrate and I got the feeling like I had dementia. I know the MindCrowd test cannot tell you if you have dementia.
And I’m taking the MindCrowd memory test and I compared it to where I was when young and where I needed to be to do better. It was like realizing where cognition can break up. I got this sort of eerie feeling about it.
What if I was in a room, like a dementia patient would be, with family members and all of a sudden I didn’t understand what people were talking about. Or I didn’t know what words went together.
You also have to understand I’m very competitive. And after the first round, when I bombed and I only got two right, I knew I had to do better.
It’s not an easy test and people should not be taking the MindCrowd test without paying attention. You have to concentrate.
I would encourage everyone to participate. Scientists can learn and people can learn. They can compare their scores with the previous year and they could get the same score, or even better.
Most dementia studies concentrate on people who already have dementia. The MindCrowd research does the opposite because if you are able to take the test, you do not have dementia. And all we can learn about dementia is a step forward towards its cure and prevention.
Alzheimer’s is not even a mental health issue. It’s a disease. The brain has lost 70 percent of the neurons.
But we can’t even talk about it. We say they are senile or they’re frail or they’re getting confused and we pretend that tomorrow they’re going to be better. And tomorrow they may be more lucid, but that doesn’t mean they’re better. They might just have a better day.
What is the Hardest Part of the Decision to Put a Family Member in a Home?
That’s a fantastic question, because it’s a mix of things. To this day, I’m not happy with the decision I made with my family five or six years ago about my mom. I’m still uncomfortable with it and for a number of reasons.
First, I never was comfortable with it. I always felt like I should be taking care of them.
And my wife would say, “I understand that. But you also have two kids and you have me and we have a house and you can’t be everything to everybody all the time. You can go over and visit her or you can help your dad, but you can’t be her caregiver”.
Second, I’m not a caregiver. I don’t know everything. I don’t know what to look for. You want somebody with expertise.
I hated the fact that I had to put my mom in a facility. I had this little feeling of failure. Like I failed her as her son, like I allowed this to happen. People I never met were going to take care of my mom.
And the reason why to this day it burns me is that I don’t think that the care was an A rating. I’m kind of harsh when it comes to care of loved ones. So I’m probably not the best person to say this, but she did fall twice.
I knew they couldn’t strap her into a wheelchair. But I didn’t feel the care was that great. It wasn’t always the cleanest facility.
But, would it have changed much? I don’t know. Would my mom be alive today? I don’t think so. Maybe she would have held on, maybe she wouldn’t have fallen and broken her arm twice.
Beyond that, I don’t know if she would still be alive. I don’t know if that would have made her live longer. Maybe it could have.
It’s the guilt of what society says a good son should do. I’m a bad son if I don’t do it.
My mother was the first voice I’ve ever heard in my life because I was in her womb. And she took care of me. And to not have that voice in my life was excruciating and to have that guilt of “I abandoned her” was tremendous and overwhelming at times. I didn’t realize this until after she passed.
In Your Podcast You Make a Parallel with Cancer
That’s true. People in those conditions are better off with professional care. But I believe most people don’t think of dementia as a real illness.
Most people see it as something that happens to frail, senile, old people. A fact of life that eventually happens. And it’s an illness.
My mother in law has stage four cancer and is she’s on her fourth or fifth year. My sister, who lives out of town, had stage four cancer, for the same amount of time. They live with it every day. And every week they go to treatments and they have all their faculties.
There’s a deterioration in health with most diseases. With dementia, they’re still walking around. You don’t see the disease or the deterioration in health.
What happens with dementia patients is that people say, “oh, she doesn’t look different than what she used to look before. So why is this missing?” She should be able to bring it back.
Parkinson’s, Alzheimer’s Dementia and Politics
And I have to say something too. It doesn’t matter what side of the political aisle you’re on.
When I look at Twitter, people use the word dementia as an insult. And it’s so wrong because what they really want to say is, “these guys don’t know what they’re talking about.”
But instead they use the term dementia. And it’s not dementia.
You can’t throw the word dementia around because it affects the people who have it and their caregivers. It pains me because of my mom. It pains others that have to hear it all the time. It’s not dementia.
When did Joe Blow on Twitter get his medical degree to tell someone that they have dementia? You can’t look at someone or hear someone talk and diagnose dementia. It infuriates me because they don’t know what dementia looks like.
People throw that word around and if they had been touched by Alzheimer’s, they wouldn’t be using it. Or if they were touched by it, they turned a blind eye on it.
They tuned out their parents or their grandparents that have it and chalked it up to something else like a mental illness.
They didn’t make that connection of what Alzheimer’s really is, because dementia is one of the toughest things to deal with when you’re a survivor.
What was the Hardest Part of being a Parkinson’s and Alzheimer’s Caregiver?
That you can see your mom, you can hear your mom, but it’s not your mom. It sounds like her. And I would hear her speak and it would make me feel good.
But when I realized she made no sense, it would dawn on me, “oh, my God, it’s my mom. Yes, she looks weak, but it’s my mom. Oh, it’s so great to see my mom, hug my mom, give my mom a kiss.”
But it wasn’t my mom, it wasn’t the mom that I will always remember being my mom. It was a different person. It was a different personality. And I love this woman, but what is going on?
She would tell these stories about how my dad was cheating on her right now. And I would reply, no, he’s not. It was hard. There’s a part of me that wanted to totally tuned it out and not have to deal with it.
But when I first heard my mom might have dementia, my initial thought was – because I have this caregiver mentality -maybe I can help or maybe I can fix it. And there is no fix to this.
What’s your Most Cherished Memory?
It happened during her Parkinson’s and maybe early dementia stage.
She was a champion ping pong player. We used to play ping pong as kids growing up. She taught us all how to play ping pong.
So here she is in a kind of frail state. And we would play ping pong for hours. I would come over and gear up and during that month she was spot on. And it was magical.
I’ll never forget that. It was the old table, it was my mom and I could still beat her, but we would volley for a long time. And it was just remarkable. And I’ll never forget that.
I don’t think I’ve played since that time either. But it was magical because now that I look back on it, it means even more to me. Because it was something we’ve always done, we are both competitive, especially in ping pong. It was the one sport where we could challenge each other.
And it was fantastic. I wouldn’t trade it for anything in the whole world.
Have you Taken Preventative Measures?
I’ve been trying to eat a lot better, cut down on munching, snacking and sodas. From multiple sodas a day, now, I might have one or two a week.
I drink water through the day and I try to run, if not every day, four to five times a week. I run two miles, four miles, whatever I have time for.
I wasn’t very physically active and I know it’s very important to help slow it down or prevent Parkinson’s and Alzheimer’s because it helps maintain brain plasticity.
What is your Advice to People Regarding Dementia?
To people who don’t have dementia in their life, do your best to prepare for it. It’s a roller coaster, it is very difficult and there’s no way to prepare for it. So, however you can plan for it, whether it’s financially, caregiving, set all that up.
Understand and provide a little bit more loving to dementia caregivers and know that it is an earthquake of epic proportions.
And participate in research because we need to know how the brain ages.
Scientists need to find out how to stop Parkinson’s and Alzheimer’s before it happens because it’s not part of normal aging. So, get involved, do something.
You will leave a legacy by participating in research. Even if you just fill out a survey, even if you just take an online test once or twice, you are helping others. We need this information because there’s so much left to know about the aging brain.
If you can help out in any way, you will help not one person, but dozens, hundreds of thousands of people just by taking a memory test.
YOU CAN MAKE A DIFFERENCE.
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