Episode 12: My Loved One Has Dementia Ugh!!!
Updated: May 24
In this episode Mitch Ware will take a look at what to expect with the dementia issue. He speaks from a first hand perspective as both a care-giver and as a long time Hospice volunteer. This episode has several touching stories you will want to hear if dementia is part of your Hospice journey.
"Dementia is a collective term - sort of an umbrella term -used to describe a variety of different symptoms from cognitive decline. It is a symptom of several underlying diseases or brain disorders. "
Well, hello and welcome to living with hospice. My name is Mitch Ware and I'll be your host today along with Well, the whole gang is here today. Cosmo, the Alaskan husky slash irish wolfhound mix. Chloe, the rare female orange cat, is on top of her condo right now looking down on us and, of course, the presiding mayor of our neighborhood, Charlie, the white and black old Tomcat sitting here on the counter, making sure I don't mess this up too much. So come on in. Grab some coffee and let's chat about something most of us encounter every single day of our lives, and that's dementia. Before we start, let me clarify. I am not a doctor. I am not a nurse. I'm not a therapist. I'm not a medical professional. I m a long time volunteer, and I've been through caregiving as a father and a son, and I meet with dementia patients every week in my capacity of being a hospice volunteer. As I volunteer, I've had the pleasure of receiving special training on how to deal with people who are suffering from dementia, and I want to share some of that with you today. So what is dementia, Exactly? The word dementia describes a set of symptoms that may include memory loss and difficulties with thinking. In general, even things like problem solving or language dementia is caused when the brain is damaged by disease, such as, well. Alzheimer's is a very common one, or it could be damaged by a series of little strokes. Dementia is a collective term sort of an umbrella term used to describe a variety of different symptoms from cognitive decline. It is a symptom of several underlying diseases or brain disorders. Dementia is not a single disease in and of itself, but it's a general term to describe all these symptoms of impairment in. Like we said, memory, communication and just overall thinking is dementia. The same is Alzheimer's. No, but Alzheimer's is a form of dementia. A lot of people use those terms Alzheimer's and dementia interchangeably, and they are not. Alzheimer's disease is a degenerative brain disease, and it is one of the most common forms of dementia. Now, don't worry, I'm not going to go into a lot of clinical medical speak here, and I promised to keep it a symbol on his plane as a can. After all, if you're here listening to this, you or your loved one have already been diagnosed with dementia and have probably had this explain to you already. But for the rest of us, let's just keep it simple and say the medical professionals tell us that dementia progresses in three basic stages. There's the mild early stage, moderate middle stage and severe late stage. The progression of dementia can vary widely by the type of dementia and by the person. Doctors can explain more about this, and they discuss the specific type of dementia your loved one has. Understanding. The type of dementia that you're dealing with can help guide care needs as the disease progresses. So we're in hospice care for whatever reason, and we are caregiving for someone who also has dementia. Mystical look. Att What to expect With the dementia issue, medical professionals tell us there are several things to look for and ways to respond First. Set a positive mood for interaction. Your attitude and your body language. Communicate your feelings in your thoughts. Weigh more strongly than your words. D'oh! Set a positive mood by speaking to your loved one in a pleasant and respectful manner. Use facial expressions, tone of voice and physical touch to help convey your message and show your feelings of affection. Number. To get the person's attention, limit distractions and noise. Turn off the radio or the television or the cellphone, closed the curtains or shut the door or move to acquire their area. Before speaking, Make sure you have their attention. Address them by name. Identify yourself by name and share with them how you are a relative of theirs or a great friend of theirs. Old buddies. That kind of thing used non verbal cues and touch to help keep that person focused. If they're seated, get down on their level. Maintain eye contact number three. State your message Clearly. Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. If they're hard of hearing, you may have to raise your voice if he doesn't or she doesn't understand the first time what you're trying to say. Use the same wording to repeat your message or question if they still don't understand. Wait a few minutes and rephrase the question or comment. Used names of people in places instead of pronouns like he, she or they or abbreviations keep it simple. Number four Ask questions that are easily answered, refrained from asking open ended questions or giving too many choices. For example, I ask my patients what kind of music do you like? And I try to allow them to tell me, and if I see that they're struggling with that, then I start offering suggestions like, Do you like contemporary music? Do you like rock and roll? Do you like hymns? Do you like country music? Do you like classical music? I let them tell me with their body language. Listen with your ears. Open your eyes. Listen to that little voice inside of you as you're watching them. Be patient and waiting for your loved ones. Reply. This is number five. If they're struggling for an answer, it's okay. Suggest words. Watch for nonverbal cues. Watch for body language and respond appropriately in kind. Always strive to listen for the meaning and the feelings that underlie their words. Number six Breakdown activities into a series of steps. If you're going to have a knack tive ity time with your loved one, this makes many tasks much more manageable. You can encourage your loved one to do what they can gently remind them of steps that they tend to forget and assist them in thes steps. Using visual cues, such as showing them with your hands, where to place the dinner plate or how to pick up the fork. Those kinds of things can be very helpful. Number seven. When the going gets rough, distract and redirect. If your loved one becomes upset or agitated. Try changing the subject, for example, asked them for help and suggest going, Maybe for a walk. It's important to connect with the person on a feeling level before you redirect, you might say, You know, I see you're feeling sad today. I'm sorry you're upset. Let's go get something to eat. Help them get their mind off of whatever is that's upsetting them. Number eight respond with affection and reassurance. People with dementia often feel confused and anxious and are unsure of themselves further. They often get reality confused and may recall things well. That never really happened. Avoid trying to convince them that they're wrong. That is one of the biggest mistakes and one of the most common mistakes we all make stay focused on the feelings that they're demonstrating which are real to them and respond with verbal and physical expressions of comfort. Be supportive. Reassure them. Sometimes small things like holding their hand or touching maybe their elbow or their shoulder or giving him a hug or praise will get the person to respond when all else fails. Number nine. Remember the good old days. Remembering the past is often a soothing in affirming activity. Many people dementia. I cannot tell you what happened five minutes ago. They can't point you to the bathroom, and they can't tell you what they had for breakfast. They may not even know exactly where they're at, but boy, they can clearly recall their lives, say, 50 years ago. Therefore, avoid asking questions that rely on short term memory, such as asking the person what they had for lunch. Or did they watch the big ball game last night on TV? And, golly, what did you think of that outcome? Number 10. Maintain your sense of humor. Use humor whenever possible. No, not at the person's expense, but try to find something funny. Maybe something that happened to you today. Something to bring a chuckle to their faces well, People with dementia tend to retain their social skills, and they're usually delighted to laugh along with you. I use it all the time, and I'm always the brunt of my own humor. Sometimes, actually, very often a person with dementia gets very frustrated. They're happy go lucky or mild demeanor changes. They get irritable, they can lash out. They can say things that are very, very hurtful. I want to spend some time with my 97 year old mom. A few years back, she was experiencing middle to severe dementia. When I arrived that day, she was asleep. I gently greeted her. I said, Mom, Mom, it's Mitch. I'm here. Hello? Mitch is here. She turned and she went, Oh, boy. And then she looked at my face and it was a look on her face that I'd never seen before. She said, You're not Mitch. I said, Well, yeah, yes, Mom, Mom, it's me. It's Ah, your son Mitch and I reached to touch her shoulder. She quickly knocked my hand away, and before it even reached her shoulders, she she slapped my face with fire in her eyes. She said, You get away from me. You know, I was. I was floored. My heart sank as a mom. It's me, Mitch. I even tried to Gia Hoke. So, Mama, it's Mitch, your favorite son. Remember? She glared at me and said, You are not Mitch. Get out of my room right now. She then rolled over away from me and pretended to go to sleep. Wow! What happened? Oh, my goodness. This was just horrible for me. And I'll never forget it. If I live to be 300 my own mom, all of a sudden doesn't know me. She slaps me. She thinks I'm somebody that's there to do harm. What do I do? How do I process this? My first thought was to try to convince her I'm her son. We were very close. I didn't get perspective. I should have realized that Mom had a brain disorder. She had dementia. And that shapes her reality. That's her reality. When you try to control or change somebody's behavior that's struggling with dementia, you'll most likely be unsuccessful or be met with resistance or both. And it's not an argument you're ever going to win. All you're going to do is exacerbate the situation and make it worse. It's important to try to accommodate that behavior, not control that behavior. When I first encountered her that day, I should have said, Hi, Mom, it's Mitch. And when she said, You're not Mitch, I could have defused the frustration by asking questions like, Did you see the birds at your feeder right now? Aren't they beautiful or aren't you glad you're inside as it's really cold and snowing out there today? Can you see that out the window? Mom, my mom was a Southerner. She aided Winner. Believe me, she hated Winner. Try to accommodate the reality that your loved one is in. Don't argue. Don't try to debate. You can't win, and all you're going to do is add to their frustration. And you're your own as well. Remember that you cannot change what your loved one is thinking, or the reality that there in, but we can change our behavior instead of being frustrated, we change our own behavior to result in coming into that person's reality. For example, if I engage someone who has dementia and they're angry about something like, I don't know politics or the stock exchange or something that someone said earlier today or whatever. I often asked them. Ah fought provoking question and get unto another page, so to speak. I had a patient that love to complain about everything and everyone. He was a great guy, But as his disease progressed, he got crab yer and crab yer. I found a few subjects that he really liked in were pretty neutral and things that he's known and talked about his whole life. One was a local high school football team. It was his alma mater. Now this team, I can tell you, is a perennial powerhouse. So when he got a little worked up about something like, I don't know politics, I think it was I would interrupt him say, Hey, John John's not his real name, but it will just use that. How are those Wildcats doing regardless of the time of year, his face with breaking your huge smile? And he kind of nodded his head. Yes, and and he would start singing the praises of that program, that whole athletic program in general, and he'd tell me how the coaches work with the kids and and they work with them on their school work during the summer and how they stress fundamentals. And he would explain to me that they kept simple, tough, hard nose practices, going with blocking and tackling and doing everything right. And of course, he'd always tell me, You know, we don't pass the ball there because one of three things happen when you throw the football and two of those three aren't good. And I think he borrowed that from Ohio State legend Woody Hayes. And if I remember correctly, Coach Hayes borrowed it from somebody else from way back. But we'll give Coach Hayes the credit for that one. And so when I brought that up, it would change whatever he was thinking at the time. Whatever he was upset about to something really in his wheelhouse, something that he related to, something that kind of calmed him a same time and energized in but in a positive way. He would often tell me the same story over and over again, like it was brand new information and I would sit there and let him tell me and I would be interested. I would legitimately try to get into the story as if it's the first time that he ever told me Nice smile and I I tried to enjoy those stories as much the 15th or 16th time. He'd tell me as I did the very first time he told me so The key here is to climb into their reality. It's okay. You will see a happier loved one, and then that is much better for you. To it helps you stay happy. Sometimes the frustration or anger being acted out is a symptom of something else going on like pain. For example, depending on the level of dementia, people with dementia may behaving well in strange ways like someone taking everything out of the closet on a daily basis. And they take the clothes and they make piles on the bed and in their minds, well, they need to do something. Or maybe it's summer and and they want to change out their winter clothes. And that's what's going through their mind. It's summer. I need to swap out my winter clothes, and so they're acting this out day after day after day after day. Or it could be something like washing all the silverware over and over and over again. Try to take into consideration the need of the person, as they might have to be doing whatever it is they're doing. Jump into that reality. Don't scold, Don't punish for this behavior. Don't say what's wrong with you. Don't be an alarmist. That sort of response has always poorly received. It will often trigger a negative response in them. Be gentle, speaking a soothing voice and allow your loved one to tell you if she or he is able to speak in communicate. Let them tell you what they're doing. More often than not, these behaviors air harmless. Of course, if it's something that's dangerous, like leaving the gas burners on in the stove or something like that, well, then that's a whole another deal, and I recommend you get your hospice office involved immediately. The solution you used to handle a situation like this may not work tomorrow. What I mean by that is you may have to get creative to get a desired effect day after day, something I see a lot is people. Dementia often wander around. I've been in lots and lots of facilities in almost every single facility, their patients just walking the halls or driving their wheelchairs up and down the halls almost nonstop. Well, this happens for a variety of reasons. I think the most common is just boredom. Of course, it could be a side effect for medication or something like that. Discovering the triggers for wandering are not always easy, but they can provide insights to dealing with the behavior. There's some other tips that we can follow to help calm our loved ones who are suffering with irritability or angst from their dementia condition. Start by reducing noise, remove clutter or the number of persons in the room. At any given time. Each of these air stimulants and can cause anxiety making keep the same routines. Keep household objects and furniture in the same places. Familiar objects and photographs can offer a sense of security and concern. Jest. Pleasant memories, especially things that go way back, something that doesn't require short term memory but is found in the long term memory. Try to reduce caffeine intake, reduce sugar in other foods that cost spikes and energy and trigger irritability. Try a gentle touch. Soothing music is good, too. Maybe there's a nice book of poetry or or a story that person likes. Read it to them. And if they're able to get up and walk, take a walk that often helps quell agitation. Let them get outside and hear the birds and see the squirrels running around. Always speaking a reassuring voice. Don't try to restrain the person verbally or even especially not physically during a period of agitation. Don't try to debate them. Don't try to argue with um, and whatever you do. Keep dangerous objects out of reach. Allow the person to do a CZ much for him or herself as possible. Support their independence in ability to care for themselves. Acknowledge the confused person's anger over the loss of control in their life. I told them you understand and want to help with their frustration when loved ones act out, distract the person with a snack or an activity. Allow them to forget the troubling incident. Or maybe it's triggered by a memory. Confronting a confused person again usually will backfire. It's going to increase anxiety. Dementia can be a very complicated situation to live with and to deal with. And in this episode we really just scratched the surface, your hospice nurse or doctor and certainly the counselor and therapist is your best resource for getting assistance and more in depth information about your loved ones specific type of dementia. Before we wrap this up, let me share a little story with you. As you know, our son Matt was in an impatient hospice facility here in our community for the last six weeks or so of his life. Across the hall from him was an Irish priest, and this priest was suffering from dementia as well as late stage cancer. Often he would waltz into mats room with a huge smile on his face and greet each and every single person in the room. And he had this really awesome Irish brogue. He'd introduce himself like I said to everybody in the room and then go over and chat with Matt, and they actually became fast friends. Every once in a while, we would look out mats window, and there the lovely old priest would be walking down the driveway out towards the busy main road. So one of us, usually me, would run out after him. I'd catch up to him and I'd ask him, It's a beautiful day for a walk, father, but where are you headed. There's some very fresh right out of the oven. Chocolate chip cookies back in Matt's room. Would you like to come join me and have a few? He would almost always say, Well, I've got to get back downtown. Let evening mass. You know, little miss me if I'm not there. I didn't remind him. Hey, we have fresh out of the oven. Chocolate chip cookies. Father and I really think we should go back and have some way. They're still hot. His eyes would light up. He always accepted my invitation. So we turn around and we just leisurely stroll back inside and enjoy a few of those fresh out the oven chocolate chip cookies. This facility was not set up properly for memory patients at the time, and it was brand new. Shortly thereafter, though, they installed all the modern electric clocks. And and so this sort of thing can't happen again. You know, the good father Hey, just tickled me. And as he transitioned from reality to his own alter reality, he still loved us. He was true to his calling. He had a pastor's heart. We weren't even catholic, but that didn't matter to him. He made a point of going room to room and introduce himself nearly every single day. He would ask how everyone's doing and how he could specifically pray for every single person that really made an impression on me. He did make one complaint, however. One time is we're walking back down the hall, he said. Mitch my lad, You know, I've been coming here once a month faithfully to visit these poor souls, and I haven't seen a red cent from these folks. I I don't know what these big hospitals air turning into. I said, Hey father Guess what? There's some fresh out of the oven chocolate chip cookies in the room. What say we go have ourselves a couple and watch the Tigers? Oh, thank you, lad. Don't mind if I do. And off we went. Thanks for spending your time with us again today. If you have questions about dementia or any other medical questions, ask your hospice provider for more information and they're there to serve you and they look forward to serving you. They look forward to answering your questions. They look forward to your comments into your feedback, just like we do. You could also, of course, send your questions and comments to me right here at firstname.lastname@example.org. And who knows? We may answer your question or share your comment in an upcoming episode until next time. I'm Mitch Ware for living with hospice. Have a blessed day.