Right now in the US, about 18,000,000 Americans are caring for an elderly parent. It's a tough job, one that you're lucky if you get to do, but still, probably one of the hardest jobs you'll ever do. Today's guest, Janet Tretheway, shares her experiences caring for a mother with Parkinson's and her father with dementia. You don't want to miss this episode. Thank you for joining us for this episode of Talking Health in the 406 where we're one community under the Big Sky. I'm your host, Jennifer Van Syckle, longtime healthcare worker turned health educator.
Thanks.
So Janet, you were Hi-Line girl. Yes, Sam. So where are you from up on the Hil-Line? 
So.
I grew up in Hingham, which is between Chester and Havre.
OK. And what did your? Family do up there. What was?
My dad ran the green elevator and my mom was the secretary.
It sounds like the quintessential kind of highline family.
Yeah, dad, he started out when I was in the 3rd grade and then moved on to a great big, huge grain terminal in the Big Town Rudyard 6 miles away. And so yeah, that's what he did until he retired.
Did you stay up in the Hi-Line after you graduated from high school and everything or where? Did life take you?
I graduated from high school and I went to school at MSU. I just went straight through with my masters and then I got a job at. MSU Northern, which was Northern Montana College at the time, and so I moved back up to Hi-Line to Havre, and I was there. I taught for 28 years and my husband was a firefighter for the city for 28 years, and then I retired. I got the job here at the state. So I moved down here and. He followed a few years later when he was finally decided he was done playing firefighter. Uh.
And now he plays ambulance.
And now he's still doing the ambulance stuff, but.
You know.
So all this time, did your parents then stay up in? Yeah.
They were. They stayed on the Hi-Line and they were there. Where they had moved to Rudyard right after I graduated from high school, and Dad retired from the elevator. Mom then retired when dad did. When he got really retired, I was really nervous and I said dad, well, you know, you've been busy, you've worked your whole life. What are you gonna? You're just gonna go nuts just sitting around doing nothing. And he goes, I got three kids. They all have houses. They all need work. And so he spent. The next 10 years, helping all three of us kids remodel houses and build garages and. Do all that and then in the winter time he had a wood shop and he had a lathe and he made amazing artwork and things out of old wood from his lathe and that kept him really busy until he had his stroke. And then. It. Was not safe for him to continue to do the woodworking. He lost part of his peripheral vision, and so we were afraid he was gonna lose fingers. Running size and sink stuff so and so it was.
Hard all you kids scattered to the wind by that point all over Montana or. All over the country or.
Well.
Well, I was in. I was in Havre and my brother was in in Kremlin, which is just another little town outside of Havre. My sister was in Hamilton, but yeah, we we're still in Montana. And then my my grandma was still living in Hingham. And so he, he did a lot to help take care of my grandma too. And. Take care of her. House as well, yeah.
And so how? How was he when? You know when it's time to start restricting that activity like he loves doing his lathe and now, dad, you can't I. Mean did he?
Yeah, he thought it. He bought it. And. And one of the things that we did not realize with a stroke is it triggers depression and it's it's part of the change in the brain and. So Dad got pretty depressed even with antidepressants, it was still a struggle for him, for, I would say, a couple of years till we kind of got him balanced out and everything. He was just really at loose ends because he did. He couldn't do his woodworking. Very quickly, it became apparent he wasn't to be driving, and so it it just really shrunk his world mensile. And so he he kind of really went through a phase where he was still able to do, like, carpentry work. And so he was still able to help, you know, with my grandma's house and with my house and stuff. But he wasn't able to do that. Refine.
And.
Woodworking kind of stuff that he really enjoyed doing.
Mm-hmm.
And the other part of it is that what he did for people that are familiar with it, it's what they call segmental bowls and segmental turning. And that requires a tremendous amount of math to be able to cut all those angles. And that became really difficult. And so that was another thing that he recognized that. He was having difficulties because of his stroke. It was it was difficult for him.
Mm-hmm.
I'd have to look up the exact stats, but I know like the suit. Great.
It's pretty high. It's high.
Up there for your men and. Yeah. You think about something like your dad or and you kind of go.
Yeah. And that was a real concern. Think what kept him. From even contemplating that was that he had a very, very strong faith, but he also had my mom. You never saw one without the other. They did everything together. I can remember maybe four or five times in my entire life that my dad went and did something like he going to. Week fishing trip with somebody that he left and left mom alone and my mom maybe once or twice took my grandma back to South Dakota to visit relatives without my dad and that was it. I mean, they just did not do things separate. I'm sure there were. Pretty dark times, but he just thought those two things kept him from ever following through.
And how was your mom's health through all this? Was she still going?
My mom this it was just crazy. Is that my mom had been diagnosed with Parkinson's about two years before my dad's stroke, and at that point she was doing really well with. Or with her medication and and they were able to control it pretty well. So it didn't really. If you didn't know it, you didn't know she had it.
What does early Parkinson's look like like? What? What does your mom? Exhibiting or feeling you're showing?
Profound weakness. She had no strength. She couldn't vacuum. She couldn't pick things up, you know, like even picking up a gallon of milk was difficult. Like she said, it was just. It was so like walking through water.
No.
But she just said it was just everything was so. Or hard and it was just it was so difficult to do anything. And initially, when she first started having symptoms, she also has fibromyalgia. And so she has a lot of joint pain. And Parkinson's itself is not painful. There's no pain with Parkinson's. So she was. She was actually doing OK when Dad had his. Stroke then I think and I this is just my guess, but knowing the the connection between everything, I think the stress of Dad's situation really accelerated. My mom's Parkinson's, her being his primary caregiver, the fact that their lives, I mean, my mom didn't know how to balance. Checkbook. When my dad had. Stroke. My mom never had done taxes before. My dad stroke my mom. Any of that kind of stuff? That was all Dad's wheel house when she was stressed into having to do all of that on top of being dad's caregiver, it was just very overwhelming for her. And I think that really accelerated the Parkinson's. Her because it was only. I'm kind of losing dates, but it was only like 3 years after Dad's stroke three or four years after Dad stroke that, we moved them into senior living facility because their house just became too much. Dad was falling, going up and down the stairs. And it was becoming more and more difficult for Mom to manage this huge big house that they had so.
Right at that point, were you kids feeling like? We got to take shifts, OK? You this weekend? Me next weekend or during the week?
Soon. It wasn't that soon, but what we really had to do was sit them down and talk to them about, OK, neither one of you have a will. We don't have any paperwork in place. We don't know what your wishes are. Neither one of them. You know, it's that generation. They didn't want to talk about it. And so. It became more of us having to initiate those kinds of conversations. Uhm, having to talk to Dad about not driving anymore, and then then a few years later, having to talk to mom about not driving anymore? And. Having to talk to them about you need to move and you need more help and having to be a little bit more on top of things for medical appointments and that's when when they moved into the senior living facility in Chester and then Mom couldn't drive anymore, that became a huge issue. Because by that time I was in Helena, my sister lived in Billings. And my brother was still in Kremlin, but getting them to Great Falls to doctor's appointments became, you know, that's two hours away. By that time, it was really good that my sister was retired because she was able to spend hours on the phone coordinating doctor's appointments so that they were on the same day. But not overlapping and you know, so we could get them to their appointments in one trip and not have to. To have them wait too much and and those kinds of things because it just it, it became just a logistics issue of getting him from Chester to Great Falls.
Oh yeah.
For sure, because had they been in Great Falls, you know, there's probably some sort of senior transport. Yeah. And can you speak to that like some of the challenges people face who live in rural areas?
That. The big issue is the. There aren't specialists, and this is before telemedicine was even a thing, so there was no consulting with doctors over the Internet or anything like that. It was you had to go to the doctor's office and there's no transportation up there. There's no easy way to get anybody. From point A to point B1 of the things, one of the resources we did find was at the Senior Center, there is a program. Through the State Department of Health and Human Services that basically there was a person at the Senior Center who sat down and talked to mom and Dad and how they were doing their wills and everything, and they filled out these forms and then they sent them into adult services or senior services at DHS, and then they were put into legal documents. And then sent back. And so mom and Dad had legal wills that had been drawn up by an attorney. And it it was a free service through through the Senior Center and through the. They, the Council on the aging, that's what it's called 10. So that was one really nice thing that we found out pretty quickly or pretty early in the process was that there was that resource and then you know, as they as their diseases progressed. Then it became obvious that they needed even more advanced care. And so early in 2020, we moved them to Billings and moved them into an assisted living facility and. Links because that's where the neurosurgeon was for my mom and the the geriatric neurologist for my dad. And all of those kinds of things that they really needed that super special care. And the other thing was my sister was there since my my mom and dad have been in that senior living facility. And I've gotten to know some of the. Other. Residents, I do not know how an older person navigates the things that they need to do without help. Everything is online. My mom was pretty proficient at using a computer, but. Things change so rapidly and just trying to keep up with it. And with Dad, with his stroke, if he had been by himself, there's no way because we're so comfortable using the Internet and we're so comfortable using, you know, going online and filling out forms and everything. But seniors are not and it becomes overwhelming. And it becomes intimidating. And if you don't have somebody like my sister who is retired and has. Real good, computer savvy. And she's as tenacious as a bulldog that's going to persist and do that kind of.
The.
Stuff. Exactly. And how do you pay for that? And I think it's so many people that stay in their homes living alone. I know in my family, my grandmother had long term care insurance that my mom had taken out. And when that expired, we had to weigh X number of months before Medicaid would kick in. So it was about $4000.
Right.
A month soon, your families now having to.
Right.
Lift. So that was my grandma. My grandma stayed in her house longer than she should have, and she stayed in her house until she was.
97 wow well, and that's just. Yeah. Tell us about your grandma. You were dealing with. Your parents and yeah, you had this other variable out there. Wild card. Grandma too, grandma.
Yeah, Granville was actually other than having macular degeneration and being pretty hard of hearing. She actually was in amazing health. She took a little bit of a high blood pressure medication and that was it, and she was still living at home, but it was getting to be too much for her and because my mom wasn't able to do it and my mom was the only family live of of my moms siblings living close to my grandma. It became the neighbors were taking care of her, where they would take her her mail and they were checking on her at night and and and that became an issue for some of us in the family that we felt like that's not their job. That's not their responsibility. That's families job because she was so stubborn and she wouldn't. She didn't want to move. And what forced her to have to move is she fell one night in the night. And of course she wasn't wearing her life alerts that she had. But she had taken it off. She spent the night on the floor and had broken some ribs. And so at that point, she had to go to the hospital. So they took her to Forsyth, where my aunt lives and. She still was determined that she was going to go back home, but once she got to my aunts they she realized how lonely she had been. And it was nice to be at my aunts and have people around. And and all of that. Wouldn't she was up on the highline? You know, it was like, OK, I go up to my, see my mom, and then I go see my grandma, and then I, you know, I had to shuffle, you know, making sure that they were both had everything that they needed. And grandma was really stubborn about not wanting to leave. She wanted to die in her house, and she didn't get to do that. Does she stayed in her house just a little bit too long and grandma had her faculties, she could still remember everything and she could still do everything. That was the problem with my dad. Is that, you know, he couldn't at all. His dementia accelerated pretty rapidly from the stroke. Basically. He had a major stroke. It was caused from atrial fibrillation, and atrial fibrillation is the leading cause of stroke. And what happens is the top half of your heart. Doesn't beat it, just kind of flutters and so blood can pool in the top half of your heart and then a clot will let loose and go to your brain and cause a stroke. And. They treat it with a combination of a pacemaker and medication. Then then that's, you know, the blood thinners that we hear about, everybody's on blood thinners. But my dad's age rebellion was so bad that even with the pacemaker, it wasn't stopping at all the time. And so he was still forming little clots. And so he was having these little mini strokes or just multiple little tiny strokes. And so that accelerated the dementia pretty quickly. And I think a lot of moms problems. With trying to remember things and trying to do things was just the stress of trying to take care of my dad and trying to remember all of it and balance all of it and it just it was just.
Ah.
Too much for her to do. Grandma just had to worry about grandma, and so she she could still do that. But Mom was trying to juggle everything and and her meds and her appointments and dad's meds and his appointments and still trying to maintain that control. And that was the point where we said, OK, you know, we've got to get you to Billings. And we need somebody to help you. And my mom is not one to like to be helped. And so that was that's been that's been the transition. Now for for the last. Two years and all people adapt change differently. I think that that's pretty true that. None of us like to do a ton of change all at once anyway, but having to do a lots of change and some of it is not because you want to makes it even more difficult. And I think that's where my mom was is that, you know, Dad was no longer capable of doing the things that my dad did. She wasn't as capable. She always says we made. And so she left her friends, and she left her home. And, you know, moved to Billings that it overwhelms her. When you take her out driving because it's just so big compared to Hingham. Yeah. And I just don't think that as we age the, the, the. That resilience and that plasticity in the brain isn't there, especially when you have a neurodegenerative disease. It just doesn't allow for the brain to be as plastic as it used to be. And so it's it's been a challenge for her and and. And now, since my dad passed away, it's just one more change. What we found out had just kind of purely by accident, was about Hospice and. Hospice ever. You know when you talk to most people and they you say Hospice, they think that, Oh my gosh, this person is within weeks of dying. And you know, it's. And that's not the way Hospice is designed anymore. Hospice actually gets reimbursed by Medicare. And basically if you have a. Condition that is not going to be cured. You qualify for Hospice and it doesn't matter if it's two weeks or two years or whatever that you can be on Hospice and basically what you do is you accept that. This condition is no longer fixable. It's inevitably going to cause your death. And so instead of us taking my dad to the neurologist all the time and taking him in for checkups and stuff we just said, Yep.
The.
His his dementia is progressing. He's never going to get better and so Hospice is going to take over and we're just going to keep him comfortable. It isn't that, you know, if he would have fallen and broken a hip or broken an arm, they would have still treated that because that's not related to. The the diagnosis that he had of dementia, but it does provide. A whole bunch of services and the things that were really, really important for us, for my dad and for my mom is that there was somebody that came in and helped him bathe. It helped him shave and did all of those kinds of things. But then that person was also checking his blood pressure, making sure that he wasn't retaining fluid, making sure that he was maintaining his weight. They have a chaplain and he came in and visited with both my folks, but especially for my mom, that was really, really important to her. He just provided that ear to listen to and to to talk, talk with. They also had a social worker who helped with all the paperwork the social worker really helped my sister with, making sure that she had all the forms and making sure she had all the information. And then she's also a notary and so not having to drag my mom to to a bank or someplace to get. Stuff notarized. That was just a huge lift for us that that they took over for us. And as dad progressed and and declined. They just kind of upped the number of visits and up the contact they had with us and the other nice thing is that now they will continue with that contact with my mom for up to a year after my dad has passed away.
Who else?
Yeah. Interesting. Yeah. So the, the chaplains still stops, stops in once in a while to say hi to her. And the social worker still checks in with my sister. The other thing that it's funny now the the time it wasn't. But it got to a point that my mom and my sister were just. Butting heads all the time. It was becoming a real big conflict because my mom felt like my sister was taking over and my sister was recognizing that my mom wasn't able to do some of the things that she would have been doing and it just. I. Got to be really ugly and so the social worker came and basically mediated a conversation between my mom and my sister and kind of got some things out in the open and got some things resolved and really helped maintain that. Family Bond because it had gotten pretty tense for a while, so there's lots of things that Hospice can do. They they can't help my sister with my mom's stuff of trying to figure out which Medicaid plan to do and stuff like that, because that's what happens when you go into hospices instead of your. Benefit being from Medicaid, your benefit is from Hospice, and so you don't have to worry about all that kind of stuff. Hospice takes care of it. As far as paying for the prescriptions and doing all that kind of stuff, that's all taken over by Hospice. It was great for my sister because it cut in half her workload of figuring out all of these. Prescription payments and and all of. That. My understanding is that every Hospice program is a little bit different, and there we interviewed two different places in Billings to decide which one to go with based on what services they provided. There is no cost to the. OK. For Hospice, what was really nice is that the day we signed up, when we signed the contract, they immediately sent over a wheelchair chair for in the shower, a lift thing for the toilet. I mean, literally that day we had a delivery of all this. Equipment for my dad. When they decided that he was no longer mobile and the end was coming, they came in. They set up a hospital bed. They got it all set up and everything in an hour. One afternoon it was just boom. It was done. Stuff like that was really. I I was just really impressed with how responsive and how quickly they did things because that's what they do. They're really geared towards that.
Good.
Aspect of of care and like I said, it was months. I think Dad was on Hospice for 14 or 15 months before he actually died, so.
You think terminal cancer patient. Exactly who's within a month of passing that's bedridden, yeah.
Mm-hmm.
And I. They I will say that that's the advantage of being in a big community like Billings. I mean, there's nothing like that on the highline. Even just, you know, for my grandma to get a lifeline for if she fell. There were not very many options and none of them were great. Because the connectivity, there's such poor cell service in the in the area and we had to go with what we're just working connectivity wise and there were a couple of times that my grandma fell and it was 15 minutes before they would call and see if she really needed.
Help.
There were some real delays with that and and then it was a matter of, you know, OK, it's 15 minutes that she laid on the floor, then they called and yes, she needed help. So then they called the ambulance and it's a volunteer ambulance service. And so it's another 1520 minutes till, you know, she was on the floor for almost 45 minutes before somebody got there to help. And all she needed to do was just. Be picked up. And but by the time she laid there for 45 minutes, she was pretty cold and pretty stiff. And then, you know, that just compounds it so.
Mm-hmm.
That's what the CIH programs are supposed to be able to help the the Community integrated health where ambulance services provide those kinds of services, but they get reimbursed for every time they called the ambulance. For my grandma to come pick her up, help get her back into bed, or get her back in her chair or something. They never got paid for that and they still have to pay for the diesel and they still have to pay for the equipment. All of that. And so the the CIH model says that they could go, they could do that and they they would then get reimbursed for it. And so we still we can have CIH programs, but they're still not able to Bill insurance. They can build private insurance, but they can't bill Medicare and Medicaid. Because they're not going to reimburse for it. And that's the people that need CIA services are the people that are on Medicare, Medicaid because they're older and they need. They need to be checked on periodically, make sure their blood pressure medications being refilled. Make sure that they're don't have trip hazards in their house. All of those kinds of things that those programs do that would fill a huge need, a huge gap in some of these really small communities that don't have things like Hospice, it's not sustainable. Because they can't get paid for it.
Yeah. And I sit here and think, had it been a corporate ambulance, which I know there's some in Montana, they probably would have your grandma.
Mm-hmm.
Probably maybe would. Have gotten a bill she would have. Yeah, she yeah.
Phil.
Both having my grandma and my parents go through all of this. It's just really opened my eyes to the need for some of these. Things at a greater level and Montana is an aging population. We are getting older as a state and we really have to start looking at how are we going to do this. There are 56 residents in the facility that my mom is at and this is an assisted living facility. There are residents that have never, ever had a family visitor. They have no family anywhere close or they have no family at all and that's why they're there. So who's helping them with their Medicaid? Moment and make sure you know. And that was the thing with my dad. The paperwork stuff has fallen to my sister. The medical stuff has fallen to me. And so the time, the amount of time I spent talking to doctors. And nurses and therapists, especially towards the end with my dad. Keeping up on his medications and keeping up on his his pain meds and all of that kind of stuff. You know, if they're alone, who does that for them? Who keeps an eye out? They're not in pain and that they're being monitored appropriately. We have one son and he lives six hours away from us and he has his own life and. Families are smaller, well and even.
If they were big, are they all involved? Are they all? I feel like I see that too. Like, you know, there's maybe 6, but there's two that's doing it and.
Yeah, exactly.
Mm-hmm.
No, that was the way it was with my. Grandma's family.
So when you're searching, do you have any good resources that you've would recommend? Like if if somebody walked into your office and said, here's what I'm at, Janet. I mean, and my parents live in Hingham or regular Poplar or.
I would. Yeah.
Or Sydney. Or somewhere. Yeah, we do.
My biggest The thing is go your Senior Center. Every county has a Senior Center and then go to the Council on Aging and those are two really good resources to help you get started. And then beyond that, check into. You know, if there's Hospice or if there's a CIH program, or if there's a Meals on Wheels or any of those kinds of things in, in your community and get those lined up early because. What I found with my parents and with my grandma is we waited too long. At the time we were thinking things were going OK and that thing. But once we got him to the next stage and looking back, it was like we should have done this six months ago, a year ago and and that was that was something that I think what what kind of helped with that. Was that both my sister and I? We weren't there every day when we would go back and you know every three weeks or every month and you'd see these big changes. It was like, ohh. And so it made it a little bit easier for us to move things forward faster than I think my mom was prepared for. But my brother could see him all the time and he was like, well, what are you talking about? And it's like, yeah, John, you're not seeing it cause you're seeing him every day. Whereas we were seeing it, you know, with gaps.
And that's a good point you bring up because I know I saw it with our family. Where? Same thing. We waited too long. Suddenly we're trying to move grandma into facility and there's a three month waiting.
Mm-hmm. Mm-hmm.
List and it's. What are we going to do for the next three months? How are we going to handle this and I think? And then also, you know, even Hospice, if there was siblings that oh, no. We're not there. Yet we're not there yet. We're fine. You know, that's tough.
Yeah. Yep. Yeah. And I think that that was the biggest thing. My brother wasn't ready for us to say. The Hospice when we were talking to them, we had my brother on speakerphone and that was.
Yeah.
Huge. The more you can involve everybody in the decisions early, I think it's really important because yeah, you're going to have people that aren't going to agree and you're going to have people that aren't going to want to want to do those kinds of things because again, they're old perceptions of Hospice. And then. The concern about finances and that's another huge big one. I mean our my folks did pretty well planning and and being prepared. But at the same time if they had wanted to stay in their home. Ohh we have gone through their savings in 18 months trying to find if we could have found home health care or you know and at one point because my parents house had an apartment, we even talked about hiring in home care and we looked at that and it was like yeah, no, first of all, we couldn't find somebody. And second of all, it would have been so, so exorbitantly expensive that it would have been just a real short stopgap measure to be able to do that. I think again, if you were in a larger community, even like Great Falls, where they have those kinds of services and they have those kinds of people there. And they're not traveling so far, you know, for my folks, just to stay in regard to get home healthcare there, they would have had to come. Possibly from Havre. So you're paying 3030 plus miles. One way of mileage, but more likely they would have come out of Great. Falls. Which would have been 110 miles one way. Wow. Answer the question on A2.
Through honesty light mode, yeah.
Lane. Road, you know, so home healthcare, it doesn't exist in these little. No, I resent the fact that people have to move to be able to get care, you know, they have to move to Great Falls or Billings or Missoula or wherever, where they're close enough to all of those kinds of services because it's totally up and uproots their lives. And they don't adapt well. At that point. My dad never up until two weeks before he died. I I was there. And I said something about. Going home and he said, well, I want to go home too. He was not home and he had been there three years. It's just so hard for them if they're not in a place that has those kinds of services. We don't have good transportation even in larger cities and larger communities. The bus system, I think even here in Helena, the bus. System there. Accommodations for walkers and wheelchairs and things like that, but trying to get to a bus stop, trying to get them to understand how a bus system works, making sure that they get on and off safely. I wouldn't turn my mom loose on a bus by herself. I had an aunt who lived to be 97 and she said, you know, growing old is not for. Sissies and she's. Not kidding, because it's just, it's difficult. They don't want to talk about death. They don't want to talk about dying. They don't want to talk about what they want to have done afterwards. They don't want to talk about having a.
Very few.
Not pulsed, which is the form that we used in the state of Montana as a physician order for life sustaining treatment. And that's what directs medical people about what kinds of care you want. And so as an ambulance provider, if I show up at somebody's house and they are not doing well, the first thing that we look for is if that pulse, because if they go into cardiac arrest, are we supposed to start? PR or not, are we supposed to? To intubate them. Are we supposed to do an ID? All of those kinds of things that sustain life at the end of life, and that's all determined in that pulse form. And if you don't have a pulse, we're going to do everything that we can for.
You and so how does it work, Janet? So I'm sitting here thinking through this. So like. You guys are going to a call.
MMM.
And maybe like once you get there, you know, let's say somebody fell off a ladder or something and you get a name. Then does somebody else on the ambulance looking that up on the Internet or on some?
No. What? No.
Log in or. How do you find out about this pulse?
Most doctor's offices, most hospitals long term care facilities, obviously, but and what it is is you sit down with your provider, your family physician or your PA. Or whoever, and they go through with you. And do you want CPR? Yes or no? Do you want all of these things? And then you sign it and the physician signs. It is on bright green paper and the envelope is bright green. And you carry that with you or you keep that with you and we look for that Green Paper. That green envelope, and it's usually people keep on their refrigerator. UM, I've been to people's homes where it's taped to the wall above their bed. So that it's very visible. People can also get a necklace or bracelet. All it says is pulls, but it tells us to look for the form. If a bystander starts CPR and they have a pulse that doesn't count, it's only medical providers thing. And that was one of the big things with my dad. When he started showing signs of dementia, we needed to get a lot of things taken care of very, very quickly while he still was considered competent.
Hmm.
Because once he.
A S. Hmm.
Went down that rabbit hole, then he would have not. We would have had to have the hearing and the judge and the whole by 9 yards, which leads me to another thought. With Parkinson's, with my mom, Parkinson's in, I would say most cases, especially this diagnosed later in life leads to dementia.
Hmm.
And my mom is starting to show signs of dementia. It's little things. My sister has gradually had to shift all of the mail going to to her address, not to my mom. Because my mom would open up the bills and then. Either they would get thrown away or they would get put back in the wrong envelopes, or they would get buried in with something else and they weren't getting taken care of last night on the telephone we had the same discussion about the same thing three times because she just repeats herself. So she forgets that she's talked about it. And things like that with Dad. It was easier because we had mom to kind of coach and cover as we gradually took responsibilities away from my dad. But we're having this conversation with my mom's provider and my sister and brother and I. About. Are we there yet? Are we to the point where we have? A power of attorney. In in the fact that Mom has signed and at what point do we pull that out and say, OK, mom, you're not making the decisions anymore. We're trying to let her have as much autonomy as possible, but we're really concerned about phone scams. She's worse about mail and it it's not even scams. But she gets all these, you know, requests every. Charity and every foundation is sending out a letters soliciting donations. And my mom, she still has power over her checkbook. She's just not grasping the situation of, you know, you only have so much money and it's. It's kind of going back to when we had to take away your driver's license and tell her she couldn't drive anymore. She didn't like that at all. But this one I think it's even going to be worse because the other issue that we're seeing and this is not common, but it it's it's something that can happen with people with, with any kind of dementia, but especially with Parkinson's, it's they get paranoid. Oh, interesting. We've already had a couple of instances with her worrying or thinking that one of the caregivers at the facility has taken something and it's like, no, mom, it's right here, you know? She misplaces it. She can't find it. She does it, you know? So then immediately she hops to leave. They took it. As the dementia progresses and she doesn't recognize people, she's going to get, it'll freak her out, and then they have caregivers that they don't recognize and they're strangers, and these strangers are wanting to help you get. Undressed and all. That kind of stuff and it it totally freaks them out. And I kind of see that we're going down that path with my mom.
Yeah.
Those are all issues that you know, we're just not quite sure how to navigate and there are, I mean other than there's some pamphlets and booklets and things, you know, the Parkinson's Association has stuff. The heart associations had stuff about. Broke, but there's just not a lot of really good resources for.
That yeah, I can see where you'd have to piece meal it and and.
Every case is different and everyone is different. Yeah. And that's the that's the thing with Hospice that the social worker really helps with.
Wild waves.
Those kinds of things as well.
Hmm. Janet, can you talk to the power of attorney? You mentioned because there's a medical power of attorney, right? And there's regulars, attorney.
Yes, and power of. There's. However, is what they call durable power of attorney for health care. It's shortened to POA and so that gives you the right to that. That allowed us to sign him up for Hospice. That allowed us to be able to talk to his physicians, that all of the. Medicare, Medicaid, all of those insurance forms you have to have power of attorney to be able to talk to them about all of that. Kind of stuff. And so, any, any legal medical things have to be, you have to have that power of attorney, otherwise it falls to the spouse. OK. And we knew that we didn't know, but we knew that we needed to be the power of attorney. My sister and brother. Have power of attorney for the financial stuff paying moms bills and dealing with her investments and her retirement and all of that kind of stuff. Having just power of attorney does not give you rights to medical treatment or medical care. The other thing that I didn't think about is that when a person dies, their power of attorney dies with them. You now become the executor of an estate and so. My sister and I are the executors and so then again with all of the insurance stuff and all of my dad's retirement to roll over to my mom. All of that kind of stuff, even though my sister talked to the insurance company the week before he died and she could talk to him as the POA the week after he died, she had to get had to fax some that she was the executor of the state and that POA died with him. And so you have to have. That in place as well. Wow. Yeah. So it's.
There could be. Some college courses, elderly, aging, parent care? I think so, yes.
Yes. I think that caregivers especially, they need. A support system. They need a backup system. I mean, my sister and I tag team with my mom. My brother comes down once in a while and gets us both break with her being in an assisted living facility. We we don't feel, you know, if we're both off the grid.
Mm-hmm.
For weekend, it's not the end of the. World I think that. Caregivers really need they need respite care and there is a respite care available, either through a Hospice organization or through the senior living. I think it's just really important that you have backup plans for backup plans. Yeah, it's it.
It doesn't end when it ends, it keeps going, you know and.
No it doesn't. Yeah. So this whole process of having my dad pass away now and and going through that and then dealing with my mom and her Parkinson's and and. Preparing for that has given me this new appreciation for what's really important and what we need to keep and what we can get rid of and having those conversations. You know it having to kind of force my parents to do what it made it difficult for all of us and I'm still not sure we had all the right answers. Dementia with my dad. Dementia robbed him of his mind and robbed him of himself. But he didn't know it. My mom with Parkinson's is robbing her of her life and she knows it. And that's a huge thing to have to accept. Is that nothing she does is going to change it. I think she does. It's gonna stop it, and she's just gonna have to find degrees to get through it. And where's my dad? He just kind of slowly forgot that he was supposed to know. It was awful for us, but he didn't know it and so he wasn't. Uncomfortable with that? Whereas Mom knows it, the Hospice, you know, they gave us a lot of literature. They gave mom stuff about when a spouse dies and they gave us stuff for when a parent dies. And all of that. But then, you know, just the the conversations. One that really struck me is that. Towards the end, dad didn't want to talk a lot. He didn't want to visit with us anymore and he didn't want to. He wasn't. It wasn't that he wasn't awake because he was. He was awake and he was watching what was going on, but he just didn't want to engage and. You know, having that explanation of what was going on that he was just reflecting on things and it was he didn't have the energy for that it that was really important. It was really important for my mom too, because she. Was feeling like he was. I think she thought he was having another stroke or had had another stroke and was just not communicative. And I it was just like, no mom, he's there. He's just, you know, he's transitioned to this new stage. Mm-hmm. And. That's just where he is and and so having. Perspective really helped a lot that knowing that that was normal and knowing that that was something to anticipate. So Indiana Hospice was just. Such a godsend. Yeah, they really were.
Thank you so much. To Janet Tretheway for sharing her story and experiences with us, and from both myself and the behind the scenes podcast crew, thank you for listening to this episode of Talking Health in the 406 where we're one community under the Big Sky. Janet shared a lot of great information and great resources today. These will all be linked on our website. The talkinghealthinthe406.mt.gov if you haven't already, please be sure and write, subscribe and share our podcast. And until next time, take care.