Resources for Dementia Caregivers whose Loved Ones Are in Lockdown

alternate title: We Are All Long-Distance Caregivers Now

After a support group I facilitated Wednesday, I’ve been thinking hard about the precarious situation many dementia caregivers find themselves in right now. For those of us whose loved ones are no longer at home with us, the risk factors for people over 65 and the early outbreak at a nursing home in Seattle meant that long-term care (LTC) facilities everywhere were some of the first institutions to go into lockdown. Here at my home, Thursday marks day Q42 — 6 weeks of self-sequester (we started early) — yet the CDC started recommending limiting facility visitors even earlier. For as many as 8 weeks, family caregivers of people living in memory care or other assisted living facilities have had no direct contact with their loved ones; depending on the technical savvy of the staff and the cognition of their loved ones, maintaining contact can range anywhere from daily video and phone calls to updates from a staffperson about once a week.

If your loved one is in lockdown, it may have been a sudden change to what you are doing, but it is not wholly unprecedented. Welcome to the world of Long-Distance Care. Even if your loved one is down the street, you are in a long-distance care situation until the pandemic passes. A surprising number of caregivers were already overseeing the care of a loved one from hundreds, even thousands of miles away, unable to visit every week or even ever month. This is a great time to dive into their resources and adapt them to your present situation. Until the pandemic has passed (like really passed… probably even should consider any pauses in the quarantine “visits” until there are widespread vaccines and/or testing).

(At the end of this post, I’m going to ruminate a bit on what families, practitioners, and friends should keep in mind for caregivers who are cut off from their loved ones, but first I want to drop resources for dementia caregivers who haven’t, until this point, thought of themselves as “long-distance”. Some of the following may also apply for caregivers of persons with other cognitive conditions, but dementia is my experience and concentration and I acknowledge that limitation; if anything is helpful or inaccurate for your situation, let me know!)

It is a hard time for those who suddenly don’t have access to loved ones, especially those whose loved ones may not be fully aware of what’s going on or why. Most likely, this person has been isolated into their room for weeks now, with at best supervised, solitary walks down the hall — humans weren’t meant to be this isolated or touch-starved, at any age. The situation requires an unprecedented level of trust be placed in the facility’s staff and practices.

The following are tips and links (for more information) for getting through this emotionally, keeping you and your loved one as safe as possible, and easing the anxiety and distance of indefinite separation. I’ve broken them all into three segments for fast skimming: a list of activities you can do to help reduce anxiety for you and your loved one when everything’s going okay; a sequence of escalating concern when things are not going okay; and a list of considerations if you are thinking of removing your loved one from their LTC facility.

  • Know the facility’s safety standards, and talk with management if you think they should be higher. CDC recommendations are here, but enforcement happens at the state and local level (just search your state and “LTC regulation”). A lot of LTC facilities now are owned by large conglomerates; if someone blames “corporate” and tells you there’s nothing they can do, find the owners and give them a piece of your mind.
  • Use what’s available. Many facilities will help you arrange video calls, phones calls, or even on-site visits through a window. If they have not already discussed the possibilities with you, contact the facility and find out what accommodations are being made for other families. Schedule your calls in ways that help the day pass pleasantly, neither empty nor gridlocked.
  • Help keep your loved focused and relaxed. The biggest thing your loved one needs right now is stimulation appropriate to their current level, so get to know the activity director if you don’t already and coordinate. Send busywork — reading, crafts, puzzles — at their level. Let the staff know and ask if help would be available to get started. If they can’t or won’t engage in an activity, send them photos (but not originals! make copies!), letters, cards — tactile things they can hold and fuss over that remind them they are loved and missed. If they have a TV, you can also ask the staff to help make sure they’re on something stimulating (like a game show) or relaxing (maybe a sports replay or a comedy — sight-gags are very effective for those who can’t concentrate on a full plot); try to keep them away from anything that could induce anxiety — like a tense drama or the news. Some media (DVD, bluray, USB) players can even be set to play on repeat, but you’ll have to depend on the staff being willing and able to set it up.
  • Volunteer to help out. Obviously, you can’t go down and work a shift, but you may be able to help staff: make masks, call around looking for supplies, find articles or tutorials on video calls, or update social media, etc.
  • Boost superlative facilities, especially if non-profit, independent, and/or holistic. Make a donation (money or supplies), write your elected officials, and rate them online. These facilities often prioritize caregiver and resident engagement over marketing materials.
  • Stand with the staff. If you can’t do anything more for your loved one consider doing something for the staff: donate to organizations working for local labor rights and/or immigrant rights or contact protest organizers and offer to volunteer.
  • Read up. Caregivers often carry worry or guilt that we haven’t done “enough”, and it’s especially true when your loved one is dealing with a progressive, terminal disease. The vast majority of us are doing just fine, but if it helps you feel better, take out your books and pamphlets from the Alzheimer’s Association and read them; there are even new resources specific to COVID-19.

If you feel that your facility is not meeting the needs of your loved one and/or other residents at this time, I urge you to make your displeasure known, but to do so in the most effective (and legally-backed) sequence:

  1. Keep your own records. Document everything that you find worrisome with as much detail and evidence as possible once you start to suspect a serious problem. You won’t need it as long as the concern doesn’t reach a full complaint, but it can help leverage a response from the facility. Please remember that some things are not going to be possible at this time: strict isolation protocols overrule laws about how much exercise your loved one can get, and few facilities are going to be able to create brand-new care plans for every resident. If you think there are ways to help keep them engaged, take the initiative, but if you don’t try not to get too upset with staff if they can’t either.
  2. Be gentle with staff. Their entire role has been upended, and often their schedules and even their home lives (protecting your family may mean quarantining separately from their own); almost none are receiving hazard pay or other considerations. Many facilities were short-staffed before the lockdown, and staff may not hear from management as often as you do about best practices. Some professional caregivers care a great deal about the people under their watch while to others it is just a paycheck, but they’re all doing a tremendous service, and the part of the job to which they are most accountable is keeping your loved one safe. Be courteous and attentive if they call with a routine update (which may not feel so routine to them right now). Be flexible if they’re late or early to check in or answer back. Especially don’t argue with them about policies over which they have no control.
  3. Be firm with management. You have more sway with management than staff ever will, and even if you think one person is not meeting the facility’s standard, it’s better for everyone if you talk to a supervisor rather than the person themself. If you get along well with the facility’s director or head of nurses, all the better — you can use that rapport to be an advocate for your loved one, staff, and other residents.
  4. Get to know the ombudsman for your loved one’s facility. The ombudsman is a paid or volunteer liaison between facility staff and residents/families. It is their job to help you work out problems at the facility without having to file a formal complaint; not only is their contact information required to be prominently displayed in the lobby of the facility, but the facility is obligated to give you their information if requested, no questions asked. The ombudsman should be your first stop if talking with staff and management hasn’t helped.
  5. Find out where complaints are registered. If you call the complaint hotline right away, they may be obligated to take a report without answering any of your questions, but again this may vary by state. I wish I could give you a single link, but every state is different and they don’t always make it easy; I recommend searching “LTC complaint” or “LTC inspection” along with your state. What you find may take a little time to navigate, so I encourage you to look before you absolutely need it; along the way, you will likely find intermediary organizations (such as an Area Agency on Aging) that offer local helplines or other information that can help you navigate your loved one’s care best.
  6. File a complaint or incident report. States may vary, but generally a complaint gets categorized as either life-threatening/abusive or not (for example, failing to give oxygen to someone who depends on it vs. not keeping up with laundry); life-threatening incidents must be followed up within just a few days, while less severe infractions may take a week or two. There is no telling what coronavirus has done to inspection capabilities in your area, but hopefully they are taking pandemic safety as seriously as they normally treat falls and medication errors. Not all complaints lead to infractions (and they are often given a few weeks to upgrade policies before an infraction becomes permanent), but every complaint becomes a record. The process of filing a complaint is tedious, and may involve interviews with you and/or your loved one — again, I have no idea how states are adapting under lockdown. Now more than ever, a formal complaint should be your last resort.
Most long-term care facilities are now required to isolate residents to their rooms.

On a final note, I want to address one scary topic that I bet some of you are asking yourselves: When, if ever, should I think about bringing my loved one home?

Now, to be clear, I am a only offering commentary, not legal advice, and what follows may not apply to every situation. But each reason you might make this difficult choice has specific responses, so I’ll present them as Q&As:

What if my loved one complains and wants to come home?
This, the most common concern of caregivers outside of a pandemic, is both the easiest to answer and the hardest to accept. If the reason you moved them into a facility in the first place has not changed, you should rarely reverse course. Their condition will only continue to deteriorate, whether or not they are in a facility; do you want yourself (and, perhaps, other family and friends) to retake total responsibility for their routine, their meals, their medicines, their doctor’s visits, their balance, their exercise, managing any paid support you arrange, and their safety? For as long as 18 months-2 years? (FYI, some facilities have already instituted a no-return policy, meaning if you decide to institutionalize them again, you must find a new facility even after the pandemic ends)

But what if they really complain, or they have always complained?
The decision to place a loved one is never easy, but it is hardest when they push back and do not accept it. Unfortunately, because dementia is such an insidious condition, we cannot always know whether the complaint is coming from the person or the disease. We cannot always know what is a resolvable vs. unresolvable concern for them. What I mean is that I have heard countless stories from dementia caregivers whose loved ones begged to be taken “home” and, sometimes, the caregiver listened. This was no guarantee that “home” as the caregiver knew it was actually the “home” in their mind; one person even took their loved one back to the loved one’s childhood home, and they still didn’t recognize it. If that happens, that’s a lot of effort for no gain — not just you, but also them.

I moved them in once, what’s the harm in moving them back out?
Most people with dementia eventually adapt to new surroundings, especially when those surrounding provide a strong routine. It is sometimes said that the best time to move someone with dementia is when they just barely still have the ability to understand and accept the move itself; that point in time does not repeat itself. Transitions are hard for someone whose condition may include the inability to make new memories. Adapting to new environs can take months — even a year or more — and in the meantime, they may be restless and harder to work with, not easier.

I don’t think the facility is doing enough to prevent the spread of COVID-19.
See the above section on how to contact the ombudsman, file a formal complaint, etc. Taking your loved one out shifts their responsibility onto you (likely at great cost), but does nothing to protect others in the same facility.

I wanted to move them to another facility anyway.
Good luck doing that any time soon. I mean that sincerely, though. How will you gauge a new facility that’s in lockdown? However long you think it would take to find a new place and move in, expect it to take much longer, and in the meantime you’re still facing those extra responsibilities and the burden of another looming move.

They just moved in before quarantine, I think they could handle moving back out so soon.
Again, I can’t tell you what’s right for you, but unless they’re able to have the conversation to the point of brainstorming their own care strategies with you, it’s not as much of a certainty as you think.

I can afford to hire home health care or recruit family to help me out.
Even if you can afford this level of at-home care, you still have to be able to manage it all, too. So instead of trusting a facility that is accountable to regulators to minimize the number of contacts your loved one has, encourage its staff to quarantine at home, and report any positive cases immediately, you’d rather take responsibility to bring 2-6 new people into your home every day who may not face as stringent of requirements? Not only does this not guarantee reducing your loved one’s risk, but it increases the risk to you and others in your household.

A different family member moved them and I don’t agree with their choice.
If they have medical power of attorney or guardianship, there’s probably nothing you can do. If they don’t, and you do, think hard about it happened like this in the first place, but that’s a conversation to have with your family. If no one does… you’re probably going to need a family lawyer and you’d better be certain before you call that you’re willing to face whatever hurt feelings and long-term family feuds may result.

There have been one or several positive cases at this facility.
That’s really hard to hear, and my heart goes out to you for dealing with even higher anxiety than the rest of us. But this is why facilities are isolating everyone to their rooms. This is why you haven’t seen your loved one in over a moth. If the number of cases jumps up all at once, the state probably already knows and has the power to intervene on your loved one’s behalf — they may not let anyone leave; if it’s just been one or two at a time, that means the distancing measures are working about as well as you can hope, they just got unlucky. Again, are you certain you can do better in your own home?

There have been a lot of positive cases at this facility.
If it’s as bad as you say, then authorities are probably already involved and your options aren’t really your own at this point. To my knowledge, no facility has yet had to shut down due to cases of COVID-19, but if it helps you feel better, develop a back-up plan just in case. If you had to move them back home, it would probably be on short notice, so how would you do it? Don’t think best-case scenario, think worst-case. Can you be sure your loved one isn’t already infected? That they won’t get sick during the move? That you can get through the logistics and expenses of moving them out without yourself risking getting it? How will you deal, then, if you get sick, or if you get them sick?

Sounds like you’re just saying I shouldn’t pull them out.
Again, I’m not qualified to tell any individual that, but I can say that broadly, drawing on all of my academic and volunteer and personal understanding, taking a loved one out of a facility and back home is rarely a good call. If I say “never”, you’ll dismiss what I’m saying; if I say “almost never”, maybe you’ll think extra carefully about whether you are actually that one situation in a hundred/thousand/million for whom it is the right move.

The unknown is scary. It was always going to be.

We don’t want our loved ones exposed to anything dangerous, but there is only so much we can do. This was something we had to accept when we first moved them out, something we probably suspected as soon as we found out they were sick. Beneath all these questions, all these fears, is that pervasive question caregivers often ask ourselves:

“Have I done enough?”

Since dementia cannot be cured or reversed, it’s important to expand that sentence. Have I done enough to what? To keep them alive as long as possible? To honor their quality of life? To not miss them so much once they’re gone? There is no comparison and there is no reprieve. For us, as much or more as any other caregiver, our best doesn’t look like survival or recovery. It just looks better than if we hadn’t been there — and the same is true for facilities. Their role is to make our loved ones and ourselves as comfortable and secure as possible in that final stage, so that we might rest and accept that we’ve done all we could.

That we’ve done enough.

Appendix A: Caring for the Caregiver
If you are part of the support system of someone else who is caregiver for a person in lockdown LTC, you can help them through this difficult time! A lot of general advice on being there for a caregiver still stands: help with logistics and decision-making if able, offer specific support tasks instead of something vague or general, listen or distract as needed. But this will be a special kind of malaise, where there’s very little they can do and a whole lot they’re missing. If you share a household with a caregiver, be available for extra touch, extra fretting, extra reminiscing about their loved one as needed. You may also be able to help them craft and pack something to send (photos, puzzles, movies…), or sharing healthy distractions: making masks, light-hearted TV, etc. One critical role you can play is to help reduce their exposure to stressful stimuli — caregivers don’t need daily reminders about how bad COVID-19 is for elders, let alone hourly — and maybe help communicate that to others as well. If you’re in a position to help them coordinate family calls and updates, that could also be great — one of the more bizarre parts of caregiving is being the conduit of information for everyone else; now imagine doing it under lockdown like this! Most of all, just give them space to feel what they’re feeling but support their healthy activities: eat, sleep, exercise. It’ll help alleviate the anxiety and keep them strong for when decisions do need to be made.

Appendix B: Links for Texas
Area Agencies on Aging.
Assisted Living Facility guidelines.
LTC complaints, or call 800-458-9858.
Facility listings.


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