Category: Ask Rachael

“Dear Rachael, my dad insists on having a computer…but then he can’t get it to work and calls me incessantly, stressed that it isn’t working. And then, he calls and asks me to buy him a new computer. I don’t want to take his computer away, but I also know that him having it is causing us BOTH a lot of anxiety.” “What does he want to use the computer for?” I asked. “At this point, he’s using it to look at new computers!” the care partner laughed. This is a tough one, because, as we realized during our support group meeting, all we’re doing here is picking the lesser of two evils. I asked the support group member, “Which option is less stressful for YOU: him having a computer or him not having a computer?” She paused and thought about it for a moment. “That’s a great question,” she said. “It’s definitely less stressful for me if he doesn’t have the computer. Not to mention, we’ve brought him a few of these computers and he can’t get any of them to work!” “Okay, that settles it,” I nodded. “Time to tell him the computer is going to the repair shop.” “But what about when he asks for a new one?” she asked. “Here’s what I’d do,” I offered, “Go old-school with this: print out a list of new computers or bring in a Best Buy catalog for him to look at. Let him know you’ll get him one, but he has to review some first.” She nodded. “It’s difficult, because he’s still going to call wanting a computer.” “Right,” I agreed, “but he won’t be asking you to walk him through all the steps to fix the current one, right?” “That’s true,” she said. “It really is just the lesser of two evils.”

“You’re a better caregiver to your loved one when you have time for yourself,” I tell care partners in my support group. Then why can’t I take my own advice?” I recently had a baby (didn’t I do a good job hiding my pregnancy in YouTube videos!?) and if you’ve had a baby, or even been around a baby…you know how much work they are. I am having the hardest time giving myself a break–or beating myself up when I do take one. A friend recommended to us that we get a “night doula” once he’s about a month old. “What’s a night doula” was my first question—it’s essentially a professional caregiver who specializes in babies and stays overnight to care for them—and then, “But should I even do that? Shouldn’t I be up with him every night?” My husband and I are, indeed, taking turns waking up at night. I really can’t complain: he sleeps pretty well. That said, I did enlist the help of a night doula for 1 or 2 nights a week, and it’s been great. Although I have to wake up at least once to pump anyway, the night doula takes the edge off of having to stay up and figure out how to get my baby to sleep again. Of course, I find myself thinking, “But is this really okay? Do I even deserve a break?” It’s sad that I can’t take my own advice. Caring for a person living with dementia is definitely harder than caring for a healthy baby, but the advice still stands: you’re a better care partner when you’re not frazzled and exhausted from caregiving. When I do have my night doula come in, when I do have the nanny come to take over while my husband and I work, I feel a lot more like myself. Being able to drive to the gym and get my iced coffee, get my workout in—I feel refreshed. I come back to my son with a smile and with way more patience and calm. I encourage you to take my advice (and I’ll try to do the same.)

“Dear Rachael, every time she sees me, my mother (who has dementia) demands that I make travel arrangements for her and my father to go overseas for travel. There is no way they can do that safely, nor would it logistically make any sense at this point. How do I deter her without constantly reminding her she ‘can’t go’?” You’re right: the trip is a no-go. They can’t make the trip, but that won’t stop them from asking! This is a situation where you say, “Yes, I’ll help” and then find a barrier that doesn’t involve you. My favorite excuse requires that your mom is price-averse (as most people are). Here’s how this works. Find a flight to their desired destination on Google Flights. Pick the most expensive option you can find, and then show her what you came up with. Say something like, “Wow! This is really pricey. What do you think about waiting a month or so before looking for a cheaper flight?” We don’t need to remind mom that she has dementia or that she “can’t” go. We don’t need to be the bad guy. Another outside barrier you can offer as an excuse is that their passports have expired. You can even have her fill out a “form” to renew it. It doesn’t have to be an actual government-issued form. It can just be a piece of paper with some basic blanks for her to fill in. You can draw it up on your favorite word processor and print it. If she follows up and asks what happened to the form, you can tell her the Passport Office is really backed up and she won’t hear back for a few months (this is usually true, by the way)! Finally, you can simply pretend to book the trip for your parents. Show them pictures of their dream destination, places to eat, whatever is fun for you to look at as a group. Try to see it as just that: a fun planning activity to do together. Then, pretend to “dial” the travel agent on your phone and book the trip. If she follows up, the trip can always be “next month.” Remember: With these challenges, we want to solve the emotional problem. Your mom wants to plan a fun trip to look forward to with your dad. It’s a gift you can give her to indulge her vision, to offer her “help” simply because she wants your help. Don’t worry too much about our reality, and just Embrace Her Reality™.

“Dear Rachael, my wife has incontinence issues, but is embarrassed to wear adult diapers. How do I help her?” To start, let’s reframe how we’re talking about “adult diapers.” Instead of calling them diapers (we immediately think of babies) let’s call them adult briefs. That is, after all, what they’re called in stores. I completely understand not wanting to wear adult briefs! Incontinence issues are embarrassing, but they do happen, even for people who aren’t living with dementia. In great news, there are products available these days that are less diaper-ish and more brief-ish. One of my favorites are Thinx, which were originally created for menstruation. Here’s a link to Thinx and also to another option, both on Amazon. Thinx are washable and reusable, but as she progresses, you will want to transition to a disposable option, particularly if she is unable to get to the toilet frequently or is moving her bowels in the underwear. You don’t need to tell her about her issues, or remind her that she has them. Start putting this underwear into her collection of panties and/or have someone who isn’t her spouse (not you!) see if they can talk to her about it. She may be more open to talking about incontinence with another woman. Remember that many women deal with incontinence issues after having a baby or during and after menopause, so it doesn’t need to be something we bring up “dementia” to talk about.

“Dear Rachael, how long should I stay when I visit with my dad in his memory care community?” There is no “wrong” answer here, but there are a few things that you’ll need to consider.  Above all, when visiting your loved one with dementia, you need a plan. Plan when you’re going, for how long, and plan your exit strategy. Plan when you’re going. One aspect of visiting your loved one that matters more than you might think is the time of day you visit. It’s best to visit before lunch. People living with dementia can tend to get tired and/or cranky in the later half of the day (“sundowning” is real). Visit your loved one when they’re most alert and receptive to a visit. Another great perk of visiting before lunch time is that when the Memory Care community begins to serve lunch, it gives you the perfect excuse to leave. Plan how long you’ll stay. Say it with me: An hour or less is fine. I meet a lot of family members who feel guilty for not spending the entire day with their loved one, but it’s truly okay. Quality over quantity is what matters here. It might be nice to play a quick game of Finishing Lyrics, have a stroll down memory lane (without quizzing your loved one, just following their lead or telling an innocuous story), or sharing something sweet to eat together.  Speaking of an excuse to leave, make sure you plan your exit strategy, whether you leave right at lunch or at another time. Don’t say you “need to go home.” In fact, avoid the word home altogether. This can confuse your loved one with dementia, as they probably do not understand the context of where their home is, and where yours is, especially if they experience Timeline Confusion. One of my favorite lines to exit on is plainly, “I’ll be back later.” This is a favorite of mine because it’s casual, so it won’t alarm your loved one. It’s true, because you will in fact be back for another visit in the near future. Finally, it’s vague. You’re not making any specific promises; simply, you’ll be back later. Leave without fanfare of any kind. Your loved one will be happier for it. Follow these tips to the best of your ability, and I know your visits with your loved one will go a lot smoother for both you and them.

“Dear Rachael, I wouldn’t know what to do if I noticed my husband hallucinating. Is it really okay to ‘go along with it’? Wouldn’t that make the hallucinations worse?“ Always, always Embrace Their Reality™, even when the hallucination is scary. Remember that we’re working to solve the emotional problem, not the physical one. The physical problem is, “Does this thing really exist?” The answer, of course, is no. The emotional problem is, “Am I concerned, scared, or upset by this thing?” The answer is yes. Let’s solve the emotional problem. How do we do that? When someone is seeing or hearing something that isn’t there, the worst thing we can do is say something like, “Don’t worry, that’s all in your mind!” Hallucinations are incredibly real for the person experiencing them, and telling them that what they’re seeing “isn’t real” will only make things worse. Instead, solve the emotional problem.  Example: They see that someone is outside, trying to break into the house. Show them that you’re locking the door and then place a (fake) call to the police. Reassure them that you’re armed and dangerous (or whatever you think they’ll respond to) and that you’ll be safe at home. Example: They feel bugs crawling in their bed at night. Instead of showing them at that “there aren’t any bugs,” grab a spray bottle with some water and some aromatic scent and spray around the bed. Let them know that this spray is bug deterrent, and all should be well.

“Dear Rachael, my wife doesn’t always recognize me and sometimes thinks I’m her secret boyfriend. She’s afraid to get in bed with me, thinking her ‘real husband’ is coming home. Sometimes she even says to me, ’You look like my husband, but you’re not him, you’re just an imposter.’” This is an interesting situation and it actually deserves a special diagnosis: Capgras Syndrome. Let’s be clear: Capgras is different than what I call, Timeline Confusion™. Timeline Confusion is when a person living with dementia is unable to place a loved one on their timeline. As an example, a mom living with dementia may think that her son is her late husband, based on the fact that her son is a grown man. She is looking for a younger version of her son, but here is a 65-year-old man. It makes sense, then, that she may assign a different identity to him that makes sense on her timeline. There is some of this going on—where she’s unable to quite place him on her timeline—but then there is also some Capgras Syndrome. Capgras is when a person is convinced that their loved one is actually an imposter. The NIH describes it as such: Capgras syndrome is the most prevalent delusional misidentification syndrome and is characterized as a delusion of doubles. Patients falsely believe that an identical person has replaced a person close to him or her. This is something that can happen with dementia, although it can also happen with other brain disorders and diseases. Overall, it’s fairly rare. In my own experience, this is only the second time I’ve been asked about Capgras during my career! As always, we don’t want to argue with someone who isn’t sure who we are, or worse, thinks we’re impersonating ourselves. When Capgras is happening, it’s best to remove yourself from the situation IF the individual is upset and confused by your presence. If they’re not upset, it is okay to stick around, but do not argue about “who” you are. A reply like, “I’m sorry you’re feeling that way,” or, “I would never try to trick you,” will suffice.

“Dear Rachael, my dad is incredibly paranoid. He thinks we’re trying to poison him, so he won’t even drink the water we give him. What do we do?” Paranoia in dementia is incredibly common, especially in earlier to middle stages of the disease process. When the person is earlier in their disease process, it’s oftentimes more difficult for their family, because the individual is—as I like to say—“just confused enough to be confused”: they’re really confused, but they’re not confused enough as to why they can’t throw together an argument.  As always, we don’t want to correct this person or start a battle of any kind. Instead, Embrace Their Reality™ as much as you can: acknowledge their fear and concern, but help them solve it. Try something like, “Dad, I understand you’re afraid. I hope you know we love you and we’d never do anything to hurt you. Let me taste the coffee and show you it’s okay to drink.” Drink the beverage or take a bite of the food in front of him to show him it’s safe. Paranoia comes, in some part, due to a lack of control the individual might be feeling. Are there ways to give this person back some of the control over their life? Can you allow them to make a few more choices here and there? Rest assured, the paranoia will eventually cease, but there is no “timeline” for when that will happen.