Tag: disease

SOLVE their fear of water

Are you enjoying my blog posts? Grab a free download of one chapter from my audiobook here and also receive any future helpful tips and posts right to your inbox! I had a reader write in recently and ask me about her grandfather’s fear of water. Although it had started with the shower, the problem had migrated to even brushing his teeth. He was afraid of the water in the sink, not just the water from the shower faucet! She asked how they could solve this issue, and hopefully get him to wash his hands and brush his teeth. First, I challenged her to help me figure out what the problem actually was. Was it a fear of water or was it a fear of something else, such as being naked in front of people, being too cold/hot, the unnatural feel of water hitting his skin, etc.? (Let’s also remember that trying to “convince” someone with dementia that they “need to bathe” isn’t going to work. Even if you need to bribe your loved one a little bit, “We’re going to go to your favorite restaurant after this,” or, “I will have cookies for us when we’re done,” that’s okay.) Here are some solutions, laid out by problem: FEAR OF WATER Two potential solutions here, depending on the situation: first, if there is an actual fear of water, it’s probably because your loved one can’t SEE the water. If the water is clear—and I sure hope it is—they may not be able to actually see it. Suddenly, their hand is under the faucet and it’s wet! How creepy and surprising would that be! I recommend filling a bowl with water and even dropping in a little bit of food dye so they can see that there’s water. Try this for teeth brushing or for sipping. To lessen the surprise factor, switch to a bath. You could even drop a bath bomb in there (like a true Millennial) or wrap a towel around them to ensure that the towel absorbs the feeling of water before their skin does. UNCOMFORTABLE WITH TEMPERATURE The towel trick works well here, too. I also recommend warming up the room ahead of time…no one likes taking a shower or bath in a cold room! DISLIKE OF BEING NUDE Again, the towel trick is a good one. You can also alleviate this problem by having a bed bath or a bath where they can keep some clothing on, such as a shirt while they’re sitting in a shower chair. LOSS OF CONTROL Personally, this would probably be the big one for me if i was living with dementia. Instead of “doing” the shower TO them, involve them in the process. For example, ask your loved one to “help you” finish the task. “Can you help me? Can you wash your face while I wash your feet?” and then some encouragement, like, “Wow, that’s great, this is so much faster with your help! I couldn’t do this without you.”

January 27, 2019

Anosognosia: What is it?

Usually, when I meet people with dementia, they are already in a moderate or advanced stage of the disease process. Most of my experience working in dementia care has been in care community settings, so residents are often not moved into our care until they get to the point where families struggle for provide the amount of care that they require. (And, of course, families often feel very guilty about moving a loved one, so they won’t do it until too late.) When I met Lou, he was in the very early stages of dementia. I do not know exactly what his diagnosis is, although it looks like Alzheimer’s disease to me. Over the last year, though, I have watched Lou steadily decline. This is new for me: while I have watched many people decline, it is rare that I see someone start in a very early stage of the disease process decline. Lou is aware of some of his impairment, but it is becoming clearer that he isn’t aware of everything. We were sitting around, talking about an activity we’d just completed. “That’s how it goes with the fish,” Lou said, laughing. I had no idea what Lou was talking about, but I did what I always do when I’m with people with dementia and I don’t understand their meaning: I mirror their body language. Mirroring Lou, I also nodded and forced a quick laugh, and then moved past it so the others we were sitting with wouldn’t have time to ask him what he meant. Over the last 6 months, it’s become clear to me that Lou is dealing with some anosognosia: an inability to understand one’s own condition. In dementia care, this is the best case scenario. Lou doesn’t realize how intense his decline has been, and why would he want to? It’s a much happier place that Lou is in when he is not aware of his speech-related challenges. Probably, in Lou’s mind, his declining speech is not noticeable. One thing that I’ve always noticed with people who have dementia is in their eyes. It’s a “far off” look that people get, as if their bodies are here, but their minds are somewhere else, occupying a different space. Lou’s eyes have begun to take on that look. While I feel badly for him, and while it can be sad, I am happy that Lou is still living his best life, unaware of his decline.

October 11, 2017

The elevator engineer

Neil was in an early-moderate stage of dementia. He was also fairly young (late 60s) and broad-shouldered. Neil didn’t have much family, but the family he did have were his old coworkers. Like many men of a certain generation, Neil was not interested in doing the usual “activities” we provided at the community. Singing, entertainers, arts and crafts, physical activity, etc., didn’t appeal to him. What Neil wanted to do was do what he’d always done: work. Neil had been an elevator engineer his whole life. Honestly, before I’d gone to that community, I didn’t realize that an “elevator engineer” was a job. I suppose it makes sense, but I’d never thought about it. Fortunately for Neil (and for us) our community had an elevator. Neil’s “job” each day was to get up, get his coffee, and stand or sit near the elevator, monitoring its progress. They’d given him a clipboard and pen, and Neil would sit and take notes. This made Neil incredibly happy. He had loved work, and he enjoyed being able to “work” again.

September 29, 2017

Finding Calm in Repetitive Questions

Like many people with dementia, Lucille had a “phrase” that she used often. Well, it wasn’t so much a “phrase” as it was a line of questioning that she asked every 10-20 minutes. “HEY!” she’d call, whenever she saw me. “What time of day is it?” or “HEY! What day of the week is it?” Fortunately for Lucille (and, perhaps, unfortunately for me) Lucille’s favorite couch was located right outside of my office—so, she saw me a lot. There were days where I was the Queen of All That is Patient and I’d answer each time she asked with a sense of ethereal calm. “It’s 2:00, Lucille,” I’d smile, genuinely. And then, of course, there were other days when her line of questioning drove me absolutely nuts. “HEY!” she’d call out, and before she could finish her question, I’d say, “It’s Tuesday at 2:00.” Lucille, no matter what my answer was or how exactly I’d answer, was always pleased with the information. In a way, Lucille reminded me of an old cat. She had this perfectly-wrinkled face that would give way to a big smile when she got her answer. “Thank you very much,” she’d say genuinely, closing her eyes and letting a big smile cross her face. I liked Lucille, which made it easier to answer her repetitive questions. There were definitely days, though, where I would take a deep breath before answering. Taking a moment to myself and taking a deep breath gave me just enough calm that I could answer her without an attitude. That trick worked for me a lot. I tried to remember that, even though she’d literally just asked me 10 minutes ago, she did not remember that she’d asked. It was a new question and answer for her. One day, we were all on a bus ride together. “HEY!” she called up from a few seats back. I was in the middle of checking the time and ready to say, “It’s—” when she interrupted me. “What season of the year is it?” she finished. “What?” I was completely caught off-guard: I hadn’t expected this new question! “Um,” I paused, “Uh, it’s fall,” I replied. “Thank you very much,” Lucille said, closing her eyes and leaning back into her seat, a smile crossing her pleasant face.

September 7, 2017

5 Tips: Visit your loved one and leave without a fight

Beverly and her husband stood at the doorway of the care community, pointing fingers (literally) and arguing. “What do you mean, you’re ‘going home!’” she cried. “I’m coming with you!” “No,” Beverly’s husband argued back. “You live here now!” We’ve all seen this same type of fight a million times, but how can you avoid it? 1. Don’t tell your loved one that you’re “going home.” When someone with dementia thinks about “home,” they probably aren’t thinking that the place where they currently live is “home.” They may be expecting to go with you, and this starts a huge fight over the definition of “home.” 2. Never tell your loved one, “You live here now.” This is always the start of a major argument. People with dementia have a hard time understanding logic, even when presented in a logical way. Something that makes sense to you and I does not always make sense to someone with dementia. 3. DO tell your loved one that you’ll “be back soon.” This is true. You don’t need to tell them when, but you can leave your loved one’s room and say, “Hey mom, I’ll be back soon.” This is a perfectly reasonable way to leave. You didn’t say that you were going home, and you didn’t have to come up with an excuse. 4. Come up with a reason why you can’t take them home right now. Things like, “My car is packed full of stuff and I can’t fit you right now,” or, “I’m going to the doctor and I’ll be waiting in the waiting room for a long time,” are good reasons to not take a person home. Remember that, in dementia care, it’s okay to take the word “lying” and throw it out of your vocabulary. It’s all about living in their world. 5. Get your loved one involved in an activity before leaving. I’ve literally watched families run to the door of a care community, which usually isn’t the nicest way to exit. Bring your loved one to the next arts and crafts project, to listen to the guy playing piano, or to a meal. Don’t just ditch and run—take a moment to ensure that they are actively engaged in something fun.

April 8, 2017

10 Steps to Making a Dementia Care Plan

So, things got hectic quickly. Your loved one started acting different. Maybe he or she started losing items around the house. Perhaps they began having mood-related issues. And…guess what else? You don’t have a plan for how to handle any of this. Good news: here’s a step-by-step “what do we do now” plan: Start by getting a diagnosis. Locate a neurologist, geriatrician, or nearby hospital that specializes in brain function and dementia. People will often tell me that “their primary care doctor thinks it is…” but I don’t trust the PCP for the best info. Dementia is a broad diagnosis, and you deserve to know what type of dementia it is. Even if the diagnosis isn’t Alzheimer’s disease, look up the Alzheimer’s Association in your area, and then give them a call. They’ll probably know about resources available to you in your specific location. Find a support group. A great deal of senior living communities offer free support groups to the public. You’ll meet other caregivers and be able to share knowledge, stories, and general information. Talk to your loved ones about dementia care communities. It’s a hard topic to broach, but talking about it sooner (rather than later) is the best approach. You need to know the ifs, whens, and hows of deciding to move someone to a care community. Find out about respite care in your area. Is your loved one living at home with you? Are they in their own home? Find out if a local home care company can check on your loved one during the day or night. Research elder care lawyers in your area. Know your options for getting the Power of Attorney put in your name. You may need it more than you think. Decide what you’re going to be doing about that person’s driver’s license. It’s another tough call, but you do not want to wait until something terrible has happened before you make a plan. Talk about the long-term. It’s hard, but you will want to know what type of care your loved one wants when they become unable to voice their opinions on the matter. Do they want a feeding tube when they have trouble eating? Do they want religious services as a part of their hospice experience? Don’t wait to discuss hospice. Hospice is a wonderful program that is free to you to utilize. If you feel your loved one is declining rapidly, don’t put hospice off until the last minute. They can save you tons of stress and money. Whatever you do, don’t put decisions off. Make a plan with your loved ones so that you’ll be prepared for the unexpected.

March 22, 2017

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December 28, 2016

Connecting with those who have aphasia

Aphasia is a disorder that causes someone to lose the ability to speak, or to have difficulty speaking. It is not uncommon for people with dementia have aphasia. One of my favorite things is when someone with aphasia speaks to me. It happens every once in a while. I’ve had a few residents with aphasia, although I have found that these are also often my most “expressive” residents. They mime, gesture, and sometimes move their mouths like they are speaking. Interestingly, I’ve found that even though these residents usually can’t speak, they make complete sense when words do come out of their mouths. I think a lot of people give up trying to talk to people with dementia who have aphasia. I make it a point to continue talking to them as if we’re having a two-sided conversation. You never know when that person is going to talk back. A couple days ago I was outside with Amanda. Amanda doesn’t speak, usually, but she’s very physically active: she loves walking up and down the hallways, cleaning, and picking up objects. Because she is so active and on-the-go, I decided to offer her a seat in a nearby rocking chair. She touched the wooden chair and said to me in a quiet voice, “I can’t sit there, it’s hot!” Joyfully I responded, “It’s not that bad, Amanda!” “No, touch it with your hand. It’s very warm,” she disagreed. I loved that her sentence made complete sense. It was almost as though she spoke every single day. Perhaps, in her mind, she was “talking” every day. Amanda seemed to shrug and went to sit in it anyway. As she settled in, she began to tap her feet on the ground, rocking the chair back and forth slowly. She closed her eyes, enjoyed the constant, slow movement, and went to sleep. – A post from a few months back

December 20, 2016

How your vision and perception changes in dementia

About a month ago, I put a vinyl decal of a bookshelf over one of our doors in Memory Care. It was a test, in my mind, to see if we could prevent residents from trying to exit through the door. I’m happy to report that the bookshelf decal absolutely has worked. While a couple of my residents used to go through this door five to ten times a day, two residents have opened it twice in the past month. It has worked so well, in fact, that I’ve ordered a new decal for another door in the community. This bookshelf decal has worked so well that the residents who used to go through the old door now go through a door up the hall with no decal on it. It’s amazing to see what a photo of a bookshelf has done to completely change the way my residents perceive the door. Dementia changes the way that the brain sees and understands information. While a flat photo of a bookshelf would look unreal to anyone else, people with dementia see it as real. The same thing goes for the baby dolls and stuffed animals we have in Memory Care. If it looks like a baby, feels like a baby, and is the same size and weight as a baby would be, it becomes real to a person with dementia. Our brains are very pattern-seeking: they make sense of things that don’t necessarily make sense. Therefore, if something looks and feels real, it is real. Dementia changes our depth perception awareness, our eyesight as a whole, and the way we understand color in relation to space. This is also why, if you put a black floor mat down on the ground, many people with dementia will see it as a hole. By utilizing the deficits that the disease brings, we can actually make the world a better place for people with dementia when we do things like disguise doors and provide baby dolls.

June 12, 2016

The Parrot Speaks Spanish

Belinda was ecstatic. “He’s talking to me!” she cried out in Spanish. Belinda was talking about her new best friend—the toy parrot our community kept. Unlike most of the other residents, Belinda spoke two languages. And, unlike most of the residents, Belinda was beginning to switch back to her native language. This was a real problem, because none of the other residents spoke any Spanish. For many people with dementia, the ability to be completely bilingual, or even multilingual, fades during the course of the disease. Most people return—at least in some part—to their native language. “Her English is actually great,” Belinda’s family had told us. “Or, at least, it used to be,” they had added. It seemed as though Belinda had forgotten that she knew English. She could understand people who spoke to her in English, but she would only respond in Spanish. Sometimes she would utter English phrases—or even full sentences. “Oh, que linda!” Belinda laughed, clapping, and continued to tell the bird how beautiful and wonderful he was. “You are a great friend,” she told the parrot in Spanish. “You are a great friend,” the parrot repeated, in Spanish.

April 21, 2015