Barbara: Hi everyone- welcome to 40 minutes of faith. My name is Barbara Cox and I host this weekly podcast to explore God's word and our relationship with God.
Today's topic is memory loss and honoring our parents, which is one of the 10 commandments that I really grappled with a few years ago. I am at peace to be able to talk about it now in a public forum, it was incredibly difficult at the time.
And since then, I've talked with a few friends about similar situations in their lives where their parents or other relatives are struggling with memory loss. And I'd like to frame this conversation in a faith-based today by acknowledging the this is a really tough situation for a lot of people, whether they're considering the 10 commandments or not.
I have a few practical tips from my own experience. And then I also want to honor the tremendous amount of information that's out there. I couldn't even begin to list all of the different websites and groups that are providing resources to families of people with memory loss, but I'm able to speak to my experience and a little bit about what I learned at my school two semesters ago around this topic, and just offer a word of encouragement for people who may be experiencing a great deal of personal challenge with memory loss at this time.
I started noticing memory loss in my mother before anyone else in my family. And I felt sad that she was not interested in any kind of support. I can say hopefully with some affection now that she liked to have control over her life. And for many people that's because they didn't have a lot of control earlier in their years.
So without going into too much detail, I can just acknowledge that it really had to be her way or the highway. So there were a number of independent living facilities that had graduated services. In other words, you might move into an apartment and then in the future, at some point, if you needed additional care, there were gradually more supports available to you.
So you could go say from cooking all of your own food to at some point in the future, having either a dining facility or food brought to you, also nursing care could become available. And then the possibility if it came to that, needing to move out of your own apartment and into a smaller space where you would receive more care, but she wasn't interested in any of those places.
First, she said they were too expensive, which of course is true. Many places are incredibly expensive that care for seniors or people approaching well these days, you know, 50 is the new 40 or 40 is the new 50 or whatever the expression is anyway. But for people who want to live independently with the option for more future care, typically these programs are incredibly expensive and insurance certainly doesn't cover some of the nicer services that if you want a facility that has say a swimming pool or additional recreational activities, things of that nature. So even though we talked about it and she agreed to look at some places, just sort of conceptually for the future, she refused to even fill out any application forms to get on wait lists.
Because she said they cost too much. And I honestly said to her mom, I don't want any money in the future. If you need to spend all your money to have a safe place to live, then I totally support that. And part of the conversation has been with my friends around people eventually stopping driving. And that's one thing that I'm tremendously grateful for.
My mom voluntarily stopped driving because she had some difficulties turning her head and her neck hurt a lot. And so she knew that she couldn't switch lanes safely and I'm so incredibly grateful that she was willing to surrender her vehicle voluntarily because I know for a lot of families, that's a huge place of conflict.
But also there was good public transportation near her, so she could get to where she wanted to go without a huge amount of hassle on public transportation, various different modalities that were accessible. And I know that that's not the case for everyone. Eventually the memory loss came to the attention of other people nearby, who then spoke with me about it.
And eventually other family members, relatives, friends, and neighbors certainly became aware of situations that, if it just happens every once in a while, I try, when I parked my car in a building to notice, where am I parked? Is there a sign on the streetlight that says, this is aisle A or aisle two.
And I try to remember course I don't remember, but I try to think, okay, I'm going to park kind of near this door. So then when I come out, I'll know what lane I'm in, but sometimes you come out and you're like, where did I park again? That's normal. You lose your keys, you misplace things. But she couldn't find her house keys when she wasn't home anymore.
And she would approach the neighbors and say, I can't get into my apartment. And her neighbors didn't have a key either because that was part of her control that she didn't want people to have a key. And eventually even people beyond her immediate neighbors were calling me. And I was praying about the situation.
And this is the time when I want to just introduce the fourth commandment, which is certainly very short, not a lot to it, but also there's additional information that I wanted to share around that because in exited. Chapter 20 verse 12th. This is at the very beginning of your Bible exited.
This is the second book of the Bible. It says, honor, your mother and your father. And then there's more to it, but that's the basics. And so I thought, well, how can I honor my mother, my mother doesn't want to move. I physically can't control her move. And yet I'm so worried about her forgetfulness, her safety.
Eventually it came that I was concerned about her personal care because we figured out after a while that it appears she may have forgotten how to cook because she had a lot of food in her house. Anytime. You know, my dad knew, I knew her friends knew her, her caregiver knew everybody knew that she had enough food, but she would say to people, I don't have any food and this would be really concerning.
And then I would get another phone call and that's okay. But eventually everyone knew that she did have food and it appeared that she just forgot to fix it for herself. So she would eat snack foods that were on the counter or something like that. And personal care as well. So I was not allowed to help with any of that.
I was not allowed to wash her hair for her, but I became concerned because people sometimes forget. Well, when is the last time that I had a shower or a bath? And safety in the shower or the tub is also another concern in terms of grab bars or slipping or mobility, D can do your shoulders still allow you to reach the top of your head to wash your hair.
And some people become for lack of another word grumpier, because it's just embarrassing when you can't remember this stuff, but also sometimes paranoia comes into play. And so people who like to have control of everything also sometimes fire there either if they have someone come to help clean the house or caregiver, because they are afraid that this person is going to steal from them. Now, unfortunately, sometimes it's true. Sometimes caregivers or people who come to clean your house do steal, but by and large, most people don't, and there are certainly senior care agencies that they are vetting people.
And it's unlikely, it's a smaller proportion. So especially if you have an agency that has screened people and that none of that stuff worked out partly because up from my mom's concern of how much money this stuff costs, but also because she didn't want people in her house, even if they were there to help clean or she was
say they didn't do a good enough job. Or one time, I just said, I'd like to wash the windows for you mom. And she said, no, they don't need cleaning, but they really did. So I'm not sure if it was a vision problem, or just denial or embarrassment or just control. Or just cognitive that she couldn't see what I could see that the windows really needed washing.
So one question when we're looking at honoring our parents is how hard am I going to push? How hard am I going to argue about this stuff? The windows need washing? Is that something I can just let go? Are we going to have a big fight about this? And sometimes people have been able to sort of negotiate or they just do it when the person's not looking.
So depending on what access you have to the area, personal care is certainly another concern. And as I was getting all of these phone calls, I was really praying because I wanted to honor my parents. And yet I was aware of a few possibilities, all of which were unpleasant, but I don't mind sharing those with you because
I learned things from other people that ended up being helpful for me on the off chance that they can be helpful for someone else. So one possibility that I had spoken with some local authorities about was the possibility of having it someone be declared in competent if they are not willing to voluntarily give guardianship or power of attorney to someone.
So a conversation to have is, you know, Hey, can I help with money management? You might not want to say it that way, but how can we problem solve kind of not opening mail, not paying bills, things like that is a problem sometimes or hiding money or just losing track of things. So some families are able to sort through that with power of attorney and then even the possibility of guardianship, but that was not an option when my mom
feeling like people are trying to run her life. She would complain to me that her friend told her that this friend, the kids sold the house out from under her. And it may have felt that way to the friend. And maybe that really did happen, but maybe the friend wasn't able to live alone anymore in a large house with large grounds.
I mean, not even a big yard, but just in terms of the responsibilities of home ownership and safety. And I felt that if I attempted to have my mother declared incompetent and apply for guardianship, that that would really rip the family apart because I was more anxious about what could happen.
She could fall, she could burn the house down. She could, she smoked it. You know, forget to take her medicine, forget to eat, forget to base. I felt like I was concerned out of care and love, not out of being mean or greed or anything like that. And the other problem, well, there were probably a bunch of problems, but the other problem that I wanted to bring up was just balancing how do I honor her and do it
what she tells me, how she wishes to be treated, how she wants to live? And frankly, even how she wants to die? With being a responsible citizen of the world, because it's a problem when someone is still mobile enough to get out of the house and then can't get back into the house. It impacts other people.
So someone being in a bad mood when you're with them is one thing, but someone bothering the neighbors. And then another question is of course do I move in with her? Does she move in with me? She smokes and she didn't want to live with me cause I wouldn't let her smoke inside my own home. And for some other logistical reasons, it wouldn't work for me to move in with her.
And sometimes that's just not a possibility. And I'm so incredibly grateful for people who do care for their loved ones in their own home, either in the home of the elderly person or the home of the younger person, son, or daughter, or other loved one. Because I know how much work that is and how much dedication that takes.
So I'm so very grateful for that. And I just wanted to mention that Martin Luther wrote the large catechism and the small catechism, which gave some explanations to the 10 commandments and a bunch of other documents. And he wrote lengthy many pages about what does this mean to honor your father and mother?
What does it mean to honor other earthly authorities the way we are called to honor heavenly authority? And I'm not going to read you all those 10 pages, but just to bring to your attention that Martin Luther also pointed out that there are times when parents are called to care for their children
the way that they are expected to. That's not explicitly written in the 10 commandments, but in my class that I took, the professor had mentioned specifically, God doesn't want scoundrels or tyrants in terms of abuse. There may be situations where it could be healthy, and as a social worker, I can say this, to have some separation in a family
because of unhealthy or abusive dynamics. So that was all running around in my head, as I'm trying to figure out what's the worst case scenario that something bad is going to happen? What if there's things that can be done to prevent it from happening, but we just can't make that happen?
So for example, I talked with a home healthcare agency that was able to send in someone to clean periodically someone to come and check on health and safety and things of that nature. And I just couldn't get anywhere because they said that they must be voluntarily admitted inside the door. So if my mother wouldn't let him in the door, then they couldn't go into the door.
They had to have a payment plan set up so that they would get paid, even if she didn't let them in the door, which I can certainly understand why they would want to do that. But it just didn't make sense if I already knew that she wasn't going to let them in and I couldn't personally be there every time.
Is that even worth it to set something like that up? And I ended up talking with some social workers, so shout out to the social work profession, because even though I'm a social worker, sometimes it's easier to help other people with their problems than to figure out my own. And also it's really great that there's people who are subject matter experts and I wasn't anywhere near a subject matter expert
even though I did my internship at a VA hospital that had a dementia unit, that was a really precious experience. And I'm so grateful for it, but the cases there were beyond what we're talking about now, which was early dementia, early memory loss. The VA hospital had a hospice unit. So I learned really to just treasure that end of life process.
And it was really difficult for me because I was a graduate student in my mid twenties. And it was sometimes a really painful experience. But now that I look back on it, I'm just so grateful and can honor that place because the hospice situation is designed to support both the person receiving hospice care as well as their family in that end of lifetime.
So that when we came in every morning, we would look at to see if anyone had passed away during the night, or since we left the day before and often there was, of course not every day. And for me at the time, it was really sad. And now I'm so much more grateful and appreciative to just honor that that's the process and we all have a time.
And it's okay. And yes, some people die too soon or what we would deem to be too soon that we would want them to be lost. It was hard for me to see people being spoon-fed and for older adults to be wearing diapers. But there were also nice aspects of the program before hospice level of care. There was a day program with activities and music and even watching the screen.
Yeah. I was able to observe a few as an intern. That's where I learned about the Enola gay because people can't really remember what street they live on. And they'll tell a whole story about the house in order to avoid the question of what street do you live on, but they remembered the name in this case because it was the VA hospital,
they've remembered key military names. For example, from earlier in their career, they certainly remembered music from their youth. So the day program was able to really tap into positive experiences and allow for some positive experiences for the people, with memory loss, as well as then some support groups for their loved ones for their relatives during this painful time.
So I had observed as a younger person, new professional, the more severe end of the scale. But for me personally, we didn't even have a diagnosis of my mom. It was pretty apparent to me that she was suffering from memory loss, but she refused to get tested for that formal diagnosis. And I can certainly understand, I don't want to be diagnosed with anything really, but sometimes it's better to know.
However, as an adult, some people are able to convince someone to get in the car with you and go somewhere. They might not really want to say for example to a doctor's appointment, but we didn't have that sort of setup in my family where I could convince her to go somewhere and that I would make the appointment for her and just take her.
But anyway, back to the social workers who helped me. I talked with a number of social workers trying to figure out what is the right thing to do in this case, because she wasn't officially or severely a danger to herself or others. It was more of a nuisance situation. So her neighbor would call me and say, she locked herself out again.
Or somebody in a local place nearby would say, Hey, she told us she didn't have any food. I know it's not true, but I just want to check in with you. And I said, I left there two days ago and she had enough food for three months, because especially in the winter weather for seniors, you don't want someone to have to run to the grocery store.
So they might possibly run out of say fresh milk or something like that. But there's plenty of stuff in the freezer and in the cupboards, in the pantry, things like that. So I knew for sure that there was plenty of food and they also knew that that was true, but the social workers ultimately said to me, Maybe something bad has to happen in order for the situation to change in order for this to be addressed.
And that was really my greatest fear, but they were very kind to me. They listened, they asked lots of questions. I tried to explain to the best of my ability, the details of the family situation. And they said that if she was still able to kind of get around and physically by her own food and physically admit people into the home and, or deny them access as the case may be and talk and things like that, that the it part of the social work code of ethics is the client's right to self-determination.
So in this case, my mother wasn't my client, but they could see it from that perspective. And I remembered even if we disagree with how someone is treating themselves or living their life, If it's not too unsafe or dangerous, then maybe it has to kind of get worse before it can get better. And that was really hard for me because I don't think it's honoring her.
If she thinks she doesn't have any food, even though she does, because she was afraid she would call me and say, what day of the week is it today? When are you coming to see me again? You may have been at the receiving end of those phone calls too. And I tried to be very available to her, but it broke my heart.
And then it also made me have a fearful reaction every time the phone rang, because I don't mind telling my mother what day of the week it is or reminding her that I'm coming to visit her again soon, but multiple times per day. Could be the neighbor, someone at a shop down the street and they know who she is.
They know who I am. Because as a community, it felt to me that the situation was intolerable, but she wouldn't let go of saying, no, I want to die at home. I want to die in my own bed. So how do we honor that at the same time that I was fearful of a worst case scenario? So eventually the social worker got through to me or were able to convince me that I wasn't being a bad person and that it was certainly my choice. I could attempt to have her declared incompetent and I felt like it would be ripping apart the family, even though that could be an exaggeration in hindsight, but as soon as something happens, then you will probably have a team of professionals around you that can help make things happen.
And that is how it worked out. Unfortunately, she took a fall and I'm so incredibly grateful that the fall happened in a place where her neighbors were able to find her very quickly and call for an ambulance because if she had fallen behind closed doors and nobody knew about it, that was one of the worst case scenarios that I was afraid of.
So the hospital was able to help us. And there's more to it. I'm not going to do a blow by blow of this meeting, that meeting the other meeting, because you've probably been through a lot of meetings or you can imagine, but ultimately in order to recover from the fall, from the injury resulting from the fall,
the hospital staff could recommend that she was not safe to have an immediate recovery at home and that there should be a transition. So even though at that point, everyone was in agreement that she needed more care than she could have in a home environment based in part on her personality of just, she wanted to be so independent.
She wanted to go out. She didn't want to just, well, who wants to always stay inside their four walls? This saying right as COVID is hopefully winding down for all of us in the world? But that for safety reasons, During her recovery, she would be in a place with staff where she couldn't just get out. And her dementia worsened exponentially and very quickly during that recovery time.
So even though I knew she probably was never going to leave that place, and it was okay with me that she kept asking, when can I go home? And this is something that I also wanted to share because I was always taught you don't tell a lie, you tell the truth. And some people have as their motto, the truth will set you free.
And so that was something else that the social workers and the staff helped me to understand with people who have memory loss is, does it really help the person to always tell the whole truth and nothing but the truth? And in some cases, the answer is no. So say for example, someone who can't remember that one of their loved ones has died. Every time they ask you
oh, where's so-and-so and you tell them they die. That it's a new grief fresh, and it's not just once a day. It could be 10 times a day. They can't remember what you told them an hour ago. And they said, oh, where's so-and-so and you say they're dead. And again, and so is it necessary for that person to go through that kind of trauma and grief?
And then also if I can be so honest for all the people around them, because when you grieve, it goes on for a long time. And then sometimes he gets a little bit better and a little bit better. And the grief isn't so intense or so terribly painful, but if you're supporting someone who's going through that severe grief multiple times per day, That is also very traumatic and trying for everyone involved.
So that's a long explanation to say that the social workers and staff basically told my family that for people with memory loss who are in this place, whether they're ever going to go home or not, that it's okay to say next week, because we just knew she wouldn't even remember that answer by the next day, nevermind by the next week. So even though technically it was not truthful because nobody thought she was going home next week, that she probably remembered that she got hurt. I mean, there was a visible injury that she could feel and see in the mirror that she wouldn't be so angry about next week. And then after a while she stopped asking and the memory loss became much more severe and noticeable such that she was able to receive an assessment and a diagnosis and the staff and medical providers and social work team, and all were clearly able to note that it was appropriate for her to be in a place with staff where she didn't know how to get out.
And some places have locked doors because people are mobile enough to try to get into the door out the door and wander around the grounds and down the street. And that's actually a problem for many people, even still at home, there are special locks or tips or tricks that you can learn about. Sometimes there's a lock high up on the door where someone might not see it.
Some people are really good at getting out and figuring out that stuff. Some people end up having alarms on the inside of the door. So the alarm doesn't go off when there's an intruder. I mean, of course it would, but the purpose for the alarm is to notify if someone's trying to get out from inside the house at two o'clock in the morning, and you're just trying to sleep.
So in these programs that are staffed, some do have locks, some aren't depending on the way the building is set up and the mobility of the people inside the program. But once she was there and had the diagnosis and everyone could see that this was appropriate for her to be in this group care setting, they had activities, they had healthy food.
One thing that I noticed around her nutrition was after she was receiving this food three times a day, plus snacks. The menu was in the elevator. She became healthier for two different reasons. First of all, she forgot she smoked and they explained to us then if someone asks to smoke, if the patient has cigarettes, they have to let them smoke.
This was in this particular facility, but if they don't ask to smoke, the staff aren't going to say to somebody, Hey, do you want to smoke? So if she saw someone else smoking, she would say, can I smell. If she didn't see someone else smoking, she actually forgot. So she became healthier. She stopped coughing and her skin also looked healthier.
And I believe that it's because she was getting such nutritious food, whether it was eggs or an increase in protein. And for a while, she was able to feed herself. And then at some point she forgot really how to feed herself. Well enough that she could consume a whole meal in a certain period of time.
Now there was no nobody was rushing her or anything like that. But if you don't want someone sitting at the table by themselves for an hour, trying to spoon things into their own mouth so I spoonfed her and the staff spoonfed her. And then after a while, it got to the point where it was similar to the VA program that I had mentioned, where I did my internship, where she needed to wear a diaper and she forgot how to talk, but it was amazing to me the communication that could happen.
And it was really hard for me with COVID because of course, wonderful communication can happen just when you're holding hands, just making eye contact and I would talk and she would make little noises that you can tell if someone is generally happy noises or angry noises. So then on the phone, I ended up singing to her and she responded to that.
She enjoyed the music, but I felt that even when someone is in a place where they don't want to be, she didn't want to be in this group care facility when she first got there. You can still honor the person by doing what's right for them, especially when other people talk about it together and come up with a plan and agree that this is the best thing.
So I didn't feel like I was, or my family was being mean, or like she said about her other friends selling the place out from underneath her. And then another invitation that I wanted to suggest that's also really difficult for a lot of families to talk about his belongings. And that's something that is so hard and so sad to let go of possessions, because when you downsize, you can't take everything with you.
And so I honor people who are doing that voluntarily, even though it's really hard. And it's sometimes heartbreaking because you have all these boxes of memories, essentially, or whether it's seasonal decorations or kitchen staff, plates, that usually when you downsize, you just can't take it all with you. So you can help yourself and your family by doing it before you can't do it anymore.
Or in my case, when you can't do it anymore, then other people need to do it for you. So that's something that we couldn't do. I had mentioned at the beginning, we tried to talk about the benefits of living in a program. I'll probably take it back someday, but right now I sure wouldn't mind somewhere where there's at least one meal a day.
Whether it's lunch or dinner or both, or you have a little kitchenette and it's optional, some places you only get charged if you have the meal and you might need to sign up for it. But some other places it's just built into the fee, which I know is high. Right now, I wouldn't mind having that, but I'm sure at some point in the future, I might change my mind and say, no, no, I don't want to move into one of those places or something like that.
So I want to recommend a website that I've mentioned in the past, which is fly lady.net. And that has a number of tips on not only just general cleaning and organizing, but also holding on to stuff. And I can really respect my mom grew up during world war two, many of the not only older generation who grew up poor, but pretty much anybody you think, well, I might need this someday, so I'm not going to get rid of it because what if I
like the next day after I get rid of it. And then I'll be mad at myself for getting rid of it. So that's not specifically the topic for today, but one of the tips from fly lady is, do you have the means to get another one of something that you may or may not need in the future or is what you have broken?
Or is it sentimental in a good way? That's hard to part with, and could you maybe donate it and someone else could benefit from it? Say you have too many blankets or towels. I'm just picking something that might be kind of less painful. If you're downsizing, someone else could benefit from blankets or towels, but I know there's other more sentimental things.
So there's some strategies on there to take photos of the things that you love. Or sometimes we hold onto things that we don't really love because someone gave them to us. And we don't know if they're ever going to walk in the house and say, Hey, where's that thing I gave you? But to be released from that also to know that you don't have to keep everything that you're ever given and that this could be a game.
To voluntarily downsize or give away your things. And you can say goodbye to the things that you love or choose what you take with you. Because ultimately for my mom, she ended up having literally one closet worth of space and that's not a whole lot of stuff. So I just want to thank all of the many organizations that support people with memory loss.
If you search online, there's so much information out there. And I pray for those who are caring for loved ones, with memory loss, as well as mourning their passing.
Exodus 20:12
https://www.guideposts.org/caregiving