Note: This article was written near the beginning of the COVID-19 pandemic. It has not been updated since, so some of the information is no longer accurate, particularly details concerning COVID-19, recommendation, and statistics. However, we do have updated articles on the topic, including one that focuses on COVID-19 itself and another on the COVID-19 vaccines.
The coronavirus pandemic continues to have widespread impacts throughout America and around the globe. Caregivers are finding themselves in particularly challenging situations, as they are supporting vulnerable family members.
And, let’s be honest, the caregiving role isn’t simple at the best of times. It often comes with unexpected challenges, especially when family members are stubborn or face significant health challenges.
In this post, we’re taking a close look at some of the current challenges, along with their implications for caregivers, seniors, and their families. Then, we highlight some approaches that may help with the various issues, touching on experiences from real caregivers along the way.
Challenges of This Current Crisis
- No Hospital Visitors
- Early Treatment and Hospital Visits
- One at a Time
- Everything takes Longer
- Risks of Exposure
- What Happens if the Caregiver Gets Sick?
- The Impacts of Isolation
- Seniors Not Taking the Situation Seriously
- Too Much Time Together
- The Risks of Nursing Homes
No Hospital Visitors
Hospitals across the nation are making changes to protect their patients and staff members from the coronavirus spread. Many are banning visitors entirely, preventing people from riding with loved ones in ambulances, and requiring the people visit emergency departments on their own, rather than with family members.
The measures are important, of course. But, they also ignore some of the complex needs of our vulnerable population.
As one author points out, a hospital stay can be just as damaging for some seniors as the coronavirus itself, perhaps even more so.
This is particularly true for dementia patients, including those with mild cognitive impairment. Seniors in this situation can’t always make good decisions. They don’t always understand what is going on or even remember where they are.
Such issues become even more pronounced during times of stress.
To make matters worse, many cognitive challenges aren’t obvious from the outside. Stressed and busy staff members might not realize that the patient doesn’t understand what is going on or that they’re answering questions accurately.
It’s easy to see how bad this could get.
A cognitively impaired senior may not know what is wrong with them, where they are, where they live, or what medications they are currently taking.
Research also suggests that having a single caregiver by a patient’s side can be critical for cognitively impaired patient, especially those are at the risk of delirium.
There are some good examples of hospitals responding to this crisis.
- Some hospitals do differentiate between caregivers and visitors. Sometimes caregivers may only be allowed for some types of patients and not others.
- Other hospitals don’t allow caregivers at all, but work to remotely include caregivers in the care team to the best extent possible.
Unfortunately, there are also plenty of cases where hospitals don’t have caregiver-specific policies in place and where staff members may not understand the importance of caregivers.
Early Treatment and Hospital Visits
The current patterns at hospitals have many ripple effects on seniors and caregivers. Resources at hospitals are often stretched, while there may be a focus on following whatever policies are currently in place.
One caregiver highlighted a challenge with the current rules. In their situation, seniors with high temperatures are sent to hospital or to the family home.
But, for a patient with advanced dementia, both approaches have severe limitations. The author summed up some of the key challenges like this:
The caregiver’s perspectives here are reasonable and well thought-out, yet the key staff in the case don’t seem to know how to respond to the challenges.
This isn’t the only case like it. Other caregivers are also talking about cases where nursing homes are sending patients to the hospital if the patient shows even minor symptoms – regardless of the implications for the patient or their family.
Another forum member talked about how his/her father cut his own earlobe and the assisted living facility forced him to go to hospital, against the wishes of the forum member (who has POA).
It’s an area of serious concern, as dementia patients often do not fare well at hospital and families are not always in a position to receive them back at home.
This also highlights the topic of advance care directives and patient’s rights to decide their own care. The current environment means that such requests are less likely to get listened to, even while we are facing significant resource shortages.
One at a Time
Social distancing practices are often restricting the number of people in any one place – and the distance between this. While the approaches differ across states, local areas and specifically where you are visiting, there is an increasing tendency to focus on one person at a time.
For example, grocery stores may ask for just one person per shopping cart or for household. Banks and pharmacies may only allow a single person to enter or interact with a staff member at a time.
This is a serious problem for caregivers who cannot safely leave their family member alone. The issue is particularly true for dementia patients, who may wander off and get lost if left alone for even a short period of time.
Everything Takes Longer
Here’s another serious issue – everything takes longer right now. Tasks like shopping for groceries, picking up medication, or visiting banks now take much longer than they ever did before.
Seriously, it can sometimes take hours to pick up basic groceries at times, as lines are longer and social distancing practices slow everything down.
This can be a major problem for caregivers because going out for errands often means leaving the care recipient at home on their own.
I remember this from my own experience as a caregiver. Every trip outside the house had to be carefully weighed up. The person I was caring for could safely be left alone, but the risk of issues grew dramatically the longer I was away.
The weekly grocery shop, which took less than two hours all told, was always stressful. While it was amazing to be out of the house, there was always this niggling worry about what I would face upon my return.
I can’t even imagine doing that now with how long such trips are taking.
Risks of Exposure
Going out also comes with risks. Every social contact provides potential for the virus to spread. The risk isn’t limited to person-to-person contact either. The coronavirus can live on surfaces and people often touch surfaces without even thinking about it.
Even if you’re ultra cautious, going out does put you at risk for the virus. In the same way, there’s always the risk that you’ll pass the virus on, regardless of how cautious you are.
This issue is compounded by the fact that the virus can be spread by people who do not have symptoms.
For young people with robust immune systems, the risk from the coronavirus is relatively low. While the virus can kill those that are young and healthy, those cases are unusual. For seniors, especially those with multiple chronic health conditions, the risks are much more serious.
Some caregivers are able to stay mostly at home, minimizing their exposure to the outside world. It might even be possible to get necessities delivered.
Others don’t have this luxury. Some may even work in essential services.
What Happens If The Caregiver Gets Sick?
And, if the caregiver does contract the coronavirus, what then?
Most recommendations suggest that the caregiver isolates themselves completely. This includes not interacting with people outside the house and also from family members.
Any contacts that do occur need to be very carefully managed to prevent spread of the virus.
For many caregivers, this requirement might sound impossible. How do you take space for two whole weeks if your care recipient relies on you completely? What if they’re not physically or mentally capable of meeting their own needs?
Ideally, family members would fill the gap, perhaps those in the same household or those that live further way. But, this isn’t always an option. Even if there are other people willing to provide support, organizing such support could be difficult, especially if there are lockdown restrictions in place.
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The Impacts Of Isolation
Isolation is often a challenge for seniors and caregivers. The current global crisis has made the issue much worse, as we are now being told to socially isolate.
- For many people, this means that most of their social contacts are with their household only (which creates a whole new raft of problems if there are toxic relationships present).
- Others, including many seniors, may be in shared living situations, such as a nursing home or assisted living facility.
- Finally, some people live on their own and may now be cut off from most types of social contact that they once had.
Being forced away from loved ones has many challenges for caregivers as well. For example, this was one post on an Alzheimer’s forum:
While there are many ways to maintain social contact across distance, these aren’t quite the same as in-person contact. And, as some caregivers mention, alternative contact approaches have their own challenges.
For many seniors with dementia, and some without, the current crisis is stressful and confusing. Some will be aware that their family members aren’t visiting, but may not be able to remember or understand why.
Seniors Not Taking The Situation Seriously
Then there are cases where seniors are independent enough to make their own decisions, but do not take the social isolating side of this crisis seriously.
In some senses, this isn’t even too surprising.
We haven’t really seen a crisis like the coronavirus before. The threat itself is largely invisible. We have to rely on stats and the news to get some sense of what is going on – and any source of information is likely to have some bias.
While many people are taking the advice seriously, those who are a little cynical, paranoid or rebellious may not. Some seniors may also want to hang onto the joys of life that they do have, especially if they have already faced multiple health scares.
Family members of seniors report particular challenges in cases where seniors live on their own.
Understanding the reasons for current rules and recommendations can be challenging too.
For example, social distancing processes are partly in place to protect individuals from contracting the virus, but also to reduce the spread of the virus, as people can spread it without ever known that they have the condition.
This is a challenging area, as you cannot make your family member stick to social distancing if they truly don’t want to.
Talking to people that will be interacting with your family member is one approach. Explain that your family member probably won’t practice social distancing well, if at all. You may even want to talk a little bit about the reasons.
One commentor mentioned the benefits of writing a letter to explain some aspects of the way that dementia impacts a person’s mind, including how it’s often not possible to make a dementia patient ‘get’ what is going on.
Too Much Time Together
This crisis is strange in that many people aren’t just struggling with isolation, they’re also facing far too much time with their close family. Regardless of how much you love someone, being stuck in the same house as them day after day can get incredibly frustrating.
Many people find that their nerves become frayed, that they’re much more sensitive to little things.
The issues might be particularly noticable for situations where family members are working most of the day.
Caregivers are also struggling, as the current crisis has decreased the amount of support that is available. Some caregivers are finding that they need to do much more for their family members, right when there are so many other challenges at the same time.
The Risks of Nursing Homes
Nursing homes, assisted living facilities and similar places are generally considered safe environments, ones that can relieve some of the caregiving burden and help your family member to be healthy.
Things are a little more complicated right now.
For one thing, such facilities do have safety features in place, including the way that they are screening visitors (or not allowing any visitors) and testing residents. They also already have processes in place to help residents who are sick.
But, such facilities often have many residents and there’s a risk of the virus rapidly spreading among the vulnerable population. There are now many cases where clusters of the virus have broken out in nursing homes. One estimate suggests that there have been more than 2,200 coronavirus deaths in American nursing homes so far.
Then there are situations like this one:
The situation doesn’t seem to be that unusual either (there is even a push to force New York nursing homes to accept coronavirus patients). There is a limited number of hospital beds avaliable and many coronavirus cases don’t need hospital-specific care.
Facilities will be taking precautions to protect their patients, but even so, there’s no denying that there is some risk for seniors at facilities.
Whether the risk is significant or not will depend on the specific situation. Likewise, some seniors would be at greater risk living with family or on their own.
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Potential Solutions to These Challenges
Most official recommendations for responding to the coronavirus don’t consider the complexities of caregiving or the specific challenges that come with dementia patients or caregiving.
Solutions aren’t always easy either, as staff members at places like hospitals, grocery stores and banks may be resistant to going against rules of their institutions, regardless of your reasons.
Thankfully, there are some approaches that you can take. We’re going to look at some options in this section, including details from current caregivers.
- Be Creative With Social Contact
- Be Gentle and Considerate
- Try To Understand Their Perspectives
- Focus On Your Needs Too
- Consider Limiting Exposure to News
- Remember That Your Role Is Important
- Spent Time On Forums, Talk To Caregivers
- Keep Searching, Keep Advocating
- Consider Bringing Your Family Member Home
Be Creative With Social Contact
The term social distancing is often used with this current crisis, but really, it isn’t accurate (and is no longer recommended). Maintaining physical distance is important to slow down the spread of the virus and protect our vulnerable populations.
Keeping in contact socially is very important as well.
To put it simply, social contact is critical for mental health. Being isolated for extended periods tends to be bad for us, especially for people who are normally very socially connected.
Technology is the most obvious way to stay connected. Tools like Skype and Zoom are particularly powerful, allowing families to hold video chats and even play party games across large distances.
These are also relevant tools for interacting with seniors in nursing homes and assisted living facilities.
Many people are finding effective in-person approaches too, such as neighborhood parties, where people are interacting from their own driveways or balconies.
Then there are stories like how many Italians have been joining together for music from their respective balconies.
Families of seniors in assisted living are sometimes sitting or standing outside windows, talking to residents through the phone. There are many heartwarming stories of this pattern, such as a husband who celebrated his 67th wedding anniversary by standing outside of his wife’s nursing home window with a sign.
Creative social contact isn’t limited to families and neighbors either.
There are many other cases of people reaching out, such as children writing to isolated seniors at nursing homes and the development of Adopt a Grandparent schemes to support seniors that do not have much family.
Be Gentle and Considerate
This current crisis is difficult and it affects different people in different ways.
Some people find that the time at home is a chance to slow down and relax. It is a time to reconned with family, to spend more time with family activities and the like. For others, the crisis is incredibly stressful and terrifying.
There is every reaction between those two extremes and reactions tend to change over time.
People also cope in different ways.
- Some people find that focusing on the positive is helpful, such as enjoying the chance to spend more time with immediate family and to get stuck in at home.
- Others cope by paying close attention to the crisis, even if doing so feels stressful.
- Similarly, some people look for physical and emotional intimacy in times of crisis or stress, while others pull away instead.
Differences in coping methods are entirely normal.
The best way to prevent them from being a problem is to focus on accommodating one another as much as possible. Try not to blame or judge someone if their coping method is different than yours. Most of the time there isn’t a ‘right’ or ‘wrong’ approach anyway.
For example, the image below is one question that a forum member asked about their father.
Some seniors responded to the question with irritation, talking about how people their age don’t need to be ‘kept entertained’. Other caregivers mention that they’ve found family members need to decide for themselves what to do.
I particularly like the response to the question below.
Try To Understand Their Perspectives
If you’re acting as a caregiver or are worried about senior family members, try to remember that their understanding of the situation may be very different than your own. Seniors with cognitive impairment often don’t see the world in the same way – while the pressure and stress of the current environment could make everything worse.
Some caregivers have offered advice about how to explain things so that your family member understands. like in the image below. Just be aware that sometimes no amount of rational explaination will work – people need to make their own minds up.
And, as one forum member pointed out, your family member could completely understand and still not make the decision that you want them to.
Focus On Your Needs Too
Self-care has become a bit of a buzz word for caregiving. Most caregivers know that self-care is important, but doing this in practice is more difficult.
Self-care might become even more difficult if your house is full of people all the time right now. Yet, it is critical to find ways to meet your needs.
For many caregivers, doing so involves finding some private space and time.
Discussions on forums focus on the importance of physical boundaries, which could include locking your door. While doing so might sound harsh, the ability to have time on your own is essential.
Meeting your own needs like this isn’t selfish. Many caregivers who don’t meet their own needs end up lashing out, which isn’t good for them or for their family members.
I found the balance difficult when I was a caregiver myself, as my help was often essential. But, I did try to make time for myself, while making it very clear that I could be interuppted if the interupption was essential, but not if it wasn’t.
Defining boundaries like this can be difficult in the short-term. You’ll probably experience some resistance from your family members too. Still, in the long-term, doing so is better for everyone.
Consider Limiting Exposure to News
News channels are a little obsessed about the coronavirus right now. The focus is important, of course, but it can be very stressful too.
One suggestion is to try and just check the news one a day, picking a source that you trust. In a similar way, consider limiting conversations on the coronavirus around the home and with your care recipient.
At the end of the day, too much information generally isn’t helpful. It’s easy to get obsessed with the number of people who have contracted the virus and the number of deaths.
That being said, some people do take comfort in focusing on the news. This thread on the AgingCare forum (along with the comment below) highlights the pattern and shows why it can sometimes be helpful.
Remember That Your Role Is Important
Official statements, the media and various other sources often focus on the imporance of isolating. Some caregivers find this frustrating, especially when their care recipient lives somewhere else.
Caregiving is still considered an essential role, especially in these times. Even if visiting your family member puts them at risk of the virus, the health consequences of not doing so are often worse.
The main reason that caregiving often isn’t mentioned in official statements is that the statements are designed to be broad. A relatively small subset of the population is involved in caregiving, so official advice tends to focus on other areas.
Spend Time On Forums, Talk To Caregivers
The challenges of caregiving and Alzheimer’s patients aren’t talked about much in news stories or official recommendations – but there are plenty of conversations out there.
Caregiving forums are filled with people talking about their challenges, often looking for advice about what to do next.
Even if you can’t find an answer to your specific questions or situation, you might be able to get some ideas from what other people have to say.
Keep Searching, Keep Advocating
With the current focus on the coronavirus, you’ll probably run into some people who don’t take caregiving requirement seriously.
The topic is a serious one. As the commenter above points out, neighbors cannot simply takeover caregiving roles.
Caregiving is still an essential role, so care workers are still working, even in areas that follow lockdown procedures. This often means that you will be able to hire additional help – although sourcing such help might take time.
One forum participant explained the situation like this:
There are many complicated situations out there, so finding solutions is likely to take time – and patience. For example, a participant on one caregiver forum talked about their family member who contracted COVID-19 at a nursing home, was sent to the hospital, recovered and was then refused entry back into the home.
Situations like this are complicated and confusing, There aren’t many policies in place to deal with the current crisis and the variation in responses is extreme.
Consider Bringing Your Family Member Home
If your loved one is in a nursing home or assisted living facility, their risk of coronavirus exposure could be lower if they were living with you. At least this way, you have more control over their exposure and over what happens if they do get sick.
However, this isn’t a simple decision.
There are many factors that you need to consider, including whether you can adequately care for your family member.
Consider the challenges of lockdown too. Would your family be able to cope if you’re all stuck in the same place together for an extended period of time?
After all, supporting someone with cognitive impairment can be difficult at the best of times. Doing it under stressful conditions with few escape options is even more challenging.
Medical considerations are important too. Nursing home staff will generally be better trained in providing medical support than you are. There’s even the risk that your family member’s health will suffer if they live with you.
In fact, many caregivers suggest leaving loved ones at facilities, despite the guilt and fear. As some of them point out, this crisis will pass and it probably isn’t going to be enjoyable for your family member regardless of where they are.
Taking them out of their facility and bringing them back home also dramatically increases the strain on you and the rest of your family. There’s also the risk that your family member will no longer have a place at the facility when this is all over.
There isn’t a single right answer here.
Instead, it’s important to seriously weigh up your options and their implications before you make any decisions.
You’ll also need to do some research about what your options are. You might find that, in some cases, bringing your family member home simply isn’t possible.
Want to Learn More?
Dementia is a challenging and complex topic. There’s a lot to think about, which is why we have many posts highlighting different aspects of dementia and dementia caregiving. Check them out for more details – or click the link below for recommended books.
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