It is in these raw caregiving moments that light needs to be shined on the fact that caregiving in the home is a 24/7 job. It can be traumatizing to watch your parent or loved one forget where the bathroom is, struggle to remember who you are while they are living under your roof, or yell at you for not helping them when that is all you are trying to do. It becomes so difficult to separate the parent from the diagnosis, and it is an unfair situation for any family member to have to face.
Yes, cohabiting can be the ideal situation for some families and, after a thoughtful conversation on boundaries and expectations, it most certainly can be beneficial. However, the decision to have your loved one move in with you may not be the best one simply because it makes the most economic or logistical sense or because it is the “right” thing to do. I urge you to take time to consider your options and your ability to be a caregiver at all times, throughout the day and night. Take comfort in knowing it’s okay to decide that co-living is not the best choice for you, your loved one, and your family.
Caregivers with a Loved One in a Nursing Home
Caregivers with a loved one living in a nursing home have a vital role in the care and well-being of their loved one. They may not realize it, but their presence ensures the safety of their loved one and ensures that the care that they are receiving is not the only thing they have to look forward to. They can count on you as a familiar face to remind them that they are more than their care needs—that they are still able to live a life beyond the assistance of daily living they receive from their caregivers. This break from the constant medical focus is a breath of fresh air for so many individuals who have no other choice than to move into a care home.
A person’s ability to engage with their loved ones while in the care of professionals is essential to their quality of life and their well-being. Residents who do not have any visitors struggle to find companionship while living in a nursing home. Yes, there are people there every day to take care of them, but they are paid. While they are willing and may even create bonds with these individuals, they are there to fulfill their duties and, if they have to leave, will do so despite these bonds. Family members play a significant role in the safety and well-being of their loved ones living in a nursing home; they are still needed and are still caregivers, even if the care recipient is living in a nursing home. Too many family members entrust companionship to the caregivers they or their loved ones are paying to take care of them. It is possible that the sight of their loved one in need of such skilled care is just too much to handle for some, and they may stop coming altogether. But they need you now more than ever.
Transitioning into a care home is a new chapter in someone’s life, but that does not have to mean it is the last. A lot of learning happens in these settings. People learn how they handle giving up control of many of their normal functions, and they entrust those around them to provide for them in a way that they have spent most of their life doing on their own. For family members, it is hard to see this, to look past the glaring realities of your loved one’s health or even cognitive decline. They will change reasonably quickly while they are here, but that doesn’t mean you shouldn’t be able to try to get to know them as they maneuver through this process. You are and always will be an important part of their lives, and to not be there during this frightening period can cause profound regret as the loved one passes away. You are their family first, and you deserve the chance to embrace this role and to help guide them through this new phase.
The Long-Distance Caregiver
A long-distance caregiver is someone who lives at least an hour away from the person in need of care—someone who is not able to pop over at a moment’s notice and often needs coordination to make a trip over to the individual’s home. Generally, long-distance caregivers are not the primary caregiver, and will often act as the support to the family member living closer to the care recipient. It is challenging for someone who lives far away to know how they can meaningfully engage in their loved one’s care, but there are ways to play a significant role even if it means that you are a just a little bit more hands-off in your approach.
If you are a long-distance caregiver, knowing how you can help and where you should start in the caregiving process can be difficult. Start by having a conversation with your loved one and their primary caregiver (if this is someone other than you). They will both have a better sense of how you can be most helpful and this will prevent you jumping into, and perhaps disrupting, an already well-established process.
A long-distance caregiver has an excellent opportunity to be much-needed support for the primary caregiver in their loved one’s life. The daily tasks of caregiving are draining, so taking the administrative to-dos from their list can sometimes save them both time and energy that they can refocus on themselves or the care recipient. The times when you do come into town can provide respite breaks for the primary caregiver, and you should include them in your plans for your trip home so they can schedule their time accordingly.
Researching and knowing the resources in your loved one’s community is another great way to support them from afar. You may not be able to ensure they are exercising daily, but you can work to coordinate their attendance at their local senior center in hopes they exercise there! Checking out their local Area Agency on Aging is a great place to start in your community resource search—the AoA no doubt has already done most of the research and can point you in the right direction if you are looking for something specific for your loved one.
There is a lot of support and help that a long-distance caregiver can provide without physically being with their loved one. Technology has done a great deal to expand the role of the long-distance caregiver, too. For example, my next-door neighbor grocery-shops for her mom who lives out West and has the groceries delivered to her front door, so her mom doesn’t have to worry about going on her own. Online bill pay is another way long-distance caregivers can use technology to support their loved one.
In addition to the practical support that technology can help you provide, opportunities for emotional connection and relationship-building have increased as well. For instance, platforms like Skype or Facetime are fun ways to connect and interact with them that allow them to see you as you talk. You can also send home movies of yourself and your family that will help keep them engaged and present in your life with them. If your loved one has Alzheimer’s disease or other forms of dementia, you can create videos or a playlist of their favorite sing-along songs. Finding ways to engage with them through technology is a close alternative to being there in person when you live too far away to visit.
Caregivers in the Workplace
I have worked in a variety of settings, but I always seem to encounter a coworker who is also a family caregiver. When I tell them my focus in the aging field, our conversations can quickly become personal. These deeply personal stories of caregiving are becoming more frequent in the workplace. And for these workers, strain from outside stressors undoubtedly has an impact on their productivity and performance. AARP reports that 61 percent of family caregivers are currently employed either full-time or part-time.8 Since this number will only increase in the coming years, this issue demands attention.
For instance, one past coworker, although she made a decent living wage, was concerned that her parents, who never saved for retirement, would be retiring just as her second daughter started college. Since she was responsible for paying for both, she half-humorously joked that she had come to realize she will never be able to afford to retire. Another example happened on the way to lunch the other day. I walked by a woman noticeably upset at the sudden aphasia (a language disorder that affects a person’s speech) her father was experiencing