5 Ways to Manage End-of-Life Care When you are Far Away
(This article will discuss when an elder in end-of-life care, usually ailing is near one caregiver and others are further away. Some of the suggestions/ideas apply to other situations, but we will separately explore the challenge of being an only child, taking your elders with you away from other siblings, when all the siblings are far away and how to maintain relationships in that event, and general eldercare as elders age as opposed to having a terminal illness. This also assumes a caring family, where siblings intend to continue a positive relationship after the decline of elders and parents were caring of their children. If you have experience with any of the situations we’re looking at examining in the future, I certainly welcome your input and experience! This is the first in a series on Eldercare, but the third in our series on Returning Home (Check out posts one and two here!))
How often do your siblings scold you when you go home for never being around, for missing important #family events, and essentially accuse you of being selfish? When you visit family, do you find yourself falling into the same stereotypical roles you did as kids? Do you find yourself applying rules and actions you no longer do in the rest of your life? I know I do!
Now add a stressor – a terminally ill family member. Supporting an ailing family member can be a heavy burden. Luckily, it’s also often a shared burden among siblings. Unfortunately, the stress of an ailing family member can exacerbate existing family dynamics. Old sibling rivalries, old templates (yours and theirs) come to the surface. Using the assumptions of old family dynamics is rarely healthy. It is particularly challenging to adapt to a new family dynamic with the people who were historically giving care becoming those who need it and vice versa. The sibling rivalries are bound to be challenged with a new family dynamic. Taking time to reflect on what those dynamics are and how to manage those in a stressful situation can help to alleviate some of the tension.
Siblings often have unvoiced assumptions about their position in the family. Parents might also choose to make their decisions or intentions known, complicating dynamics. Because terminal illness evolves, not all can be foreseen. Therefore, hard decisions like financial and medical, will have to be made by people other than the elder. How we make them and engage with our siblings is critical to the long-term health of our familial relationships.
The general matter of managing health care for an elder and the sibling rivalry that ensues is well documented. It’s a bit pricey, but this book “They’re Your Parents Too” discusses common strategies and advice as well as the arc of decline and recovery. It does a nice job, so I won’t rehash it here.
Here we will discuss a few ideas and methods for managing your relationship with your ill elder and your siblings when you are away and unlikely to be able to provide significant in-person support regularly.
1. Empathy: Especially if you are not going to be the primary caregiver, it is important to put yourself in the position of the person who is taking on that role. That person often makes sacrifices that as outsiders we don’t see and that they may not voice. Over time those sacrifices can wear down the primary caregiver, and potentially breed resentment about your support and care. Recognizing that person’s sacrifices and activities, especially when the primary caregiver downplays them, is critical to the way you will engage that person. Be sure to ask not just after the parent or elder, but also the primary caregiver. How are they feeling, how is their health? What do they need?
2. Support the Primary Caregiver: When you visit you probably want to maximize your time with the elder. You also might want to takeover certain decisions or activities to relieve your sibling of the primary caregiver responsibilities. Discuss this in advance! The lessons the primary caregiver has learned in the day-to-day care may be hard to transmit. It might be more helpful to them if you support general errands that may have nothing to do with their caregiver responsibilities. Getting groceries for the week or running the mail to the post office or cleaning out some part of the house might be a bigger help that you can imagine. You can certainly spend time with your elder and give your sibling some “time off” – but be sure that you are doing it in the way that is inclusive and supportive of the primary caregiver.
--If you return for the funeral of an elder, ask your siblings who have been living there how you can best support them. Because you will be “home” they may ask you to be responsible for different tasks than if you were still afar. The stages of grief can appear at different times and in different ways for each person. For a primary caregiver that was local, the death could be their last straw. Arranging last rites might help provide closure and allow you to feel like you also participated in the care. Alternatively, if the primary caregiver wants to arrange the funeral/memorial because they were there for the end-of-life care, let them do that as they may need it to process the grief as well. Determine what method you can discover to help you find closure, participate, and grieve in a healing way for all parties – sometimes this processing and remembrance period can bring families closer as they reminisce on fond memories.
3. Communicate: You already know this but it can’t be said enough. As someone who is mostly further away you are already probably an expert at ensuring communication. There are lots of websites that consolidate caregiving information and medical reports. See if this is a place that you can provide extra support. Alternatively, be the POC that uploads information after a conversation with the primary caregiver. Helping to manage how many people contact the primary caregiver could be a huge gift of time to that primary caregiver. Especially for those who have power of attorney or certain decision-making responsibilities, you were likely entrusted with that responsibility under the belief that you would be inclusive, live up to that.
4. Decision Making: Know who will be responsible for which decisions in an end-of-life situation. Who is best equipped to make decisions, financial, medical, etc. Decide as a group, including the elder, who will be making them, what information that person will need, who is responsible for getting it to them, in what format, what happens when there is a dispute in the decision, etc. Decisions will have to be made and it is easier for everyone to be on the same page about how to resolve issues in advance. If given the luxury of time to delegate decision making in advance, it’s also an opportunity to leverage individual strengths and make sure everyone has a role. The discussion can also ensure that the elder has the opportunity when in full capacity to drive the way that they want decisions to be made – whether through over-arching guidance, context in the factors they want considered, or something else. Depending on your relationships you can also discuss what different siblings struggle with and how to ensure that each person gets what they need when they need it. Remember that this is where old childhood rivalries and insecurities are likely to manifest – proactively discussing them should keep everyone on better guard for them.
5. What would your Elder want?: Asking yourself how your parents would want you to behave can help mitigate negative reactions. Would they want you fighting over this thing (whatever it is)? They’ve probably given and done a lot for you over the years, is the way that your relationship with your siblings is going something they can be proud of? Will it add the burden of feeling like a burden on them? It certainly can’t solve everything and should not be the only driver of action, but it can sometimes help add perspective. Stepping back, easier when away, is also a wise way to ensure that our responses are measured, respectful, and thoughtful.
Are these few steps all it takes? Sadly no – the challenges that endure with long-term care can’t be foreseen, so you can’t anticipate every issue. Planning, however, certainly helps mitigate some of the negative effects. Most importantly, we can only control our own actions. Not everyone is at the same maturity level and it is ok to recognize and give space to that reality.
Ideally, the process will strengthen your relationships. People who go through difficult times together recognize the strengths and challenges that the other faces and are often supportive in ways that those who only know you on the good days can’t be. Further, difficult times can crystallize challenges and force them to be aired, hopefully resulting in resolution. Vulnerabilities, like loss, usually engender trust as those around you are bound to human emotions, which bind us all. As long as we approach these as we would with anyone else and not rooted in potentially negative biases the journey through end-of-life care should bind families closer.
However, be prepared to recognize that with the fallout of decisions and family dynamics you will have to prioritize your choices, some that may involve choosing to move away from another family member or give up on a certain kind of relationship with a sibling. These are decisions can be as difficult as losing a parent or elder. Be kind to yourself in recognizing the grief that comes with losing hope for an idea.
Distance from a terminally ill elder is likely to remain a challenge throughout the decline of the elder. If you can afford it and it’s important to you, it’s worth considering if you should come back. Many employers are willing to consider this type of return and it’s certainly a conversation worth having. Check out these fact sheets regarding the Family Medical Leave Act, which allows employees up to 12 weeks of leave to take care of family medical issues. Being prepared in understanding the requirements embodied in the law can help you prepare for the conversation with your employer.
If you anticipate some of these issues are in a grieving state and want to discuss any of the ideas here or more tailored ones for your family situation, feel free to reach out for one-on-one conversation with Nextpat at email@example.com