[TIMELINE: January 2025]
When my younger sister Peggy was first diagnosed with the heinous trifecta of early-onset Alzheimer’s Disease, frontotemporal dementia (FTD), and the rare logopenic variant of primary progressive aphasia, we were all quite stunned. I knew that we needed to make an action plan, but not much else. I had so little information about how to proceed.
Now? I consider myself a seasoned expert, having come through five and a half years of caring for Peggy, her tragic death, and the aftermath. The competence I eventually gained in this subject was hard won, as no one in a million years would choose such a devastating ordeal if they could avoid it. That’s why I feel so compelled to share whatever I learned.
Above all else, my first lesson to anyone in a similar situation is: Knowledge is power. If you are becoming a caregiver, this is where your journey should start. Find out as much as you can about your loved one’s precise diagnosis, and then build from there. Hopefully some listings on the caregivers’ resources page that I compiled will be useful to you as well.
The second lesson: You and your person with dementia (PwD) are going to need all the help you can get. That’s why I recommend that you check out some experts, like the Alzheimer’s Association and its social network ALZConnected; I’ve mentioned them here often.
When I first began this experience, I quickly acquired a vast trove of thoughtful advice, tips and tricks, and helpful hints from other caregivers who had been through the same thing. Then in time, I collected my own observations that I witnessed first hand, and began compiling a long list of Random Things To Know. I started writing down as much as I could, in detail, about what was happening during my sister’s illness, and I tried to keep up with that the entire time I cared for her.
For one, I kept track of some of the “compassionate fabrications” (a.k.a. little bald-faced lies) that I told Peggy that actually helped during her care, and many other practical strategies that I used over the years to try to make her life better—and to keep my sanity. As much as I could, I’ve shared these insights in the preceding chapters and in my various Deep Dives into key subjects. Hopefully these efforts will provide a roadmap for others, as I intended.
But I’d also like to highlight some best practices again, and provide a bird’s eye view of what one should keep front of mind when becoming a caregiver for a PwD. Here it is as follows.
Validate your PwD and meet them where they are. We all have expectations about what we think our PwD can and should be able to do, but what you are envisioning may be unrealistic. Once, they were able to use a phone, now they can’t. Don’t try to teach them to learn to use it again. Your PwD is most likely not able to learn anymore, and even if this were possible, they won’t retain the information. Accept that and create a workaround.
Make a plan, build a team, get support. Over time, I put together what we fondly called Team Peggy; the core members were her best friends Michael and Dodie, my partner Jon, and me. I viewed Peggy’s friend Janelle as support for a long time, but before the end she became an essential core team member. I was grateful for this, because our cousin Nikki and Aunt Betty began as core members, but needed to step back into more support roles due to their own health concerns. Other family members also served in support roles, as did my therapist Katy; my kickboxing trainer, Mike; and the staff at Peggy’s memory care facility.
I didn’t consciously start assembling the team, but many people who genuinely wanted to help stepped forward, and it all coalesced. These were people who didn’t know each other in the beginning, but it didn’t matter. We were connected by our desire to help Peggy as much as we could. Peggy brought us all together— and then email, phone calls, and in-person visits tightly bonded us to one another. Remember that everybody brings something different to the table from their own lives, and sometimes that’s exactly what you’ll need.
And if you are able, add an elder law attorney to your team. Get those legal ducks in a row!
Find somewhere safe to vent your frustrations. A support group is ideal for some people; others may prefer joining an online forum instead. AlzConnected has a good one, although other Alzheimer’s-related sites offer similar caregiver communities. Definitely look around to find your people! Try also to identify family and friends who will give you the space to talk about everything, whether that’s to work through deep fears and emotional issues, or even if you just have to whine.
Do some of my blog posts sound like I’m whining? Well, I was! That’s because I was exhausted all the time during Peggy’s illness—and you will be too, at least when your PwD reaches Stage 5. But please know: Folks who’ve been through this understand that you will need to blow off steam somehow, because caregiving becomes overwhelming.
Keep researching, as much as you can. After your initial discoveries, remember to keep reading books and articles about your PwD’s specific type of dementia, or look for videos that present information in an easier format, such as the YouTube channels of Teepa Snow or Tam Cummings. Snow is an occupational therapist, while Cummings is a dementia expert. Both offer great advice.
New findings and strategies can pop up at any time, so you’ll want to stay aware of the latest information. And if you have time (which, I know, is a pretty laughable concept), try to learn about other types of dementia, too. Some people, like Peggy, develop “mixed dementia,” which is a combination of dementia types, and can change how symptoms present.
Stay in the loop on your PwD’s everything. That means keeping track of all aspects of your PwD’s daily care, health, and wellbeing. Stay on top of what medications they are taking, why your PwD was prescribed them, and how those meds might interact with each other.
Ask your PwD’s doctors, assisted living staff, memory care staff, and other helpers what moods and behaviors they are seeing in your PwD on a daily basis, and ask what you can do to help make the situation a better one for your PwD. Not only will that ease things for your PwD, but it will help out those residents around them (if they are living in a facility).
Keep calm and bring the sunshine. Two of the best things that you can do for your PwD’s wellbeing are to avoid negativity whenever possible, and find proactive ways to elevate their mood. The second of these may actually be the easiest; it means sharing things that you know your PwD enjoys, such as favorite pieces of music and visual media, familiar photos, and preferred treats (like chocolate). It also means actively trying to cultivate a cheerful, positive atmosphere during every in-person visit, and during every phone call or video chat.
Avoiding negativity, meanwhile, is a bigger challenge. It has several components that you need to factor in, the first of which is: Don’t ever argue with your PwD. If they say the sky today is all the colors of the rainbow, agree with them. If they say they just saw Elvis outside, agree with them. If they say that the moon is made of green cheese, agree with them. If you argue, you’ll get nowhere—and you’ll risk causing an emotional outburst or meltdown. Nobody wants that.
Next, do your best not to yell at your PwD, or talk down to them. They can tell when they are being talked down to, and they can tell when your tone of voice is upset. So aim to speak to them in your normal speaking voice, and try to keep it pleasant. Your loved one may have dementia, but they are adults, and they still want (and deserve) to be treated with respect.
Never say things like “I already told you that” to your PwD—even if you already told them that. A PwD may have no recall of immediate events at all. They may have forgotten the thing you told them one minute ago, and that isn’t their fault. So get into the habit of phrasing a thing in different ways, and then telling them the thing again if need be. For example, say something like, “Oh! Here’s the scoop,” and then repeat what you previously told them, even if that means having to do that several times in the space of about 10 minutes. Patience is critically important.
Lastly, don’t give your PwD bad news. They will just stress out over it, and it could cause them to spiral emotionally. In the worst case scenario, it could damage their cognition, too. The most obvious example of this is what happened in my own family, when our beloved Uncle Nick’s health worsened, and he later passed away. Although I tried to keep this news from Peggy, our brother Les told her instead—and it upset her so much that her condition noticeably declined.
The same advice applies to events where there will be a lot of people, even family celebrations or funerals. I urge you to strongly consider not taking your PwD with you to such an event, especially if they are in a later stage of dementia. At that point, your PwD may be dealing with such issues as incontinence, limited walking ability, and/or difficulty getting in and out of a car. I know you want to include them—after all, they’re part of the family. But they need to be protected, and putting them in a stressful, crowded environment like that does them no favors.
Redirect, reframe, reimagine. As you spend more time as a caregiver, you will likely have to become savvier in the arts of redirection if you want to keep your PwD content and safe.
One common scenario that comes up is that a PwD may often mention wanting to go home. Notably, “home” is not likely to be the location where they currently live. However, the concept can be quite nebulous—they might mean their childhood home, where they lived as a young adult, or somewhere else entirely. So you need to learn to redirect. Fortunately, sometimes just driving them around the block and arriving right back at the current home may do the trick.
Along the same lines, if your PwD says they want to participate in an activity (or take a trip) that is very ill-advised, such as going to Disneyland, don’t say “no, you can’t!” Instead, say something like, “They’re closed right now. Can I check about reservations tomorrow?”
Another good strategy is reframing the situation, such as putting you and your PwD on equal footing. You could just say something like, “Hey, we’re both old people now, of course we can’t do what we used to do when we were 20 years old!”
You should also reimagine what you thought the future would look like. Your PwD was once a capable adult, but now that’s changed. You will need to be prepared to switch gears quickly.
At first, maybe your PwD is living at home with you. If that’s the case, you should pretend that you now have a toddler in the house. Childproof everything, remove tripping hazards, take the knobs off of the stove, block staircases, and store all sharp objects out of reach. You should also install locks on the doors so that they can’t get outside in the middle of night. And if your PwD wants to “help” you with a household chore, approach the task as you would with a child. Give them something harmless to do, like folding wash cloths. It sounds silly, but it’s a repetitive movement that they might be able to do successfully, and they’ll feel good about it.
Later on, your PwD might move to memory care. If that comes to pass, you’ll want to create a calming environment for them. But remember not to bring any items that are expensive or that can’t be replaced. Expect that things will go missing or get broken. It just happens.
Be honest with yourself. This is my final piece of advice, with the benefit of hindsight. When your PwD is moving into the later stages of dementia, you’ll want to recognize it for what it is. Consider calling hospice even if you think it’s too early. It doesn’t mean it’s the end, but if they are accepted into hospice your PwD will get more care. More eyes on them and more care is a very good thing.