The appeal of the wild for me is its unpredictability. You have to develop an awareness, react fast, be resourceful and come up with a plan and act on it.
Bear Grylls
Caring for a parent can feel like we are navigating an unpredictable, wild river. How do we know when it is no longer safe for Mom or Dad to live alone? When is it no longer safe for Mom or Dad to continue driving, or when should we step in to help manage finances or medications? These questions demonstrate concern for our parent’s safety and are often juxtaposed against our parent’s fiercely held desire for independence. In addition to being emotionally charged, the answers have enormous ramifications for us as the family caregiver. Ideally, the discussion about the available options would have taken place long before the need presented itself. Conversations will reveal clues to the proper timing of the transitions. These clues will help us read the river so that we act and react in ways that add value to the outcome. Unfortunately, these difficult conversations are often avoided until a decision is urgent.
Caregiving is sustainable when you are realistic, know your options, have a plan, and are willing to adjust that plan as many times as needed. Since you will be traveling this path with a partner, it’s best to avoid assumptions and ask questions that will keep you headed in the same direction. The best plans are co-created. It is imperative to begin with the common objectives so that you can better understand where there may be discord. Awareness, reading the river, is the key to identify when a change is needed. The landscape of a familiar river can change, which modifies the flow and speed of the current. New obstacles may appear or be lurking just below the surface. Heightened awareness will help us recognize that we need to modify our actions based on the unique setting.
Planning and Awareness
Prior planning and preparation, knowing the options, and having the conversations early helps us move forward with confidence when the time is right. You may research your concerns or possible solutions online. Another option is to find a guide, talk to someone who has experience navigating the caregiver river, ideally a current or former family caregiver. You may reach out to health care professionals for information and guidance to understand better what the future holds. Planning, preparation, and awareness will reduce the anxiety that comes with change and empower you as you navigate through the transitions.
Legal, Health, Financial POA
The first transition is the exception and should happen as soon as possible. Now is the time to get Powers of Attorney, POA’s, established. Often the first place that dementia is discovered is in the bank account, and the lessons have been costly. Another reason to take the steps now is to avoid the complications and cost of getting a POA when a family member has been diagnosed with dementia or is in some other way incapacitated and can no longer designate a proxy. Talking Points and Communication Tips
End-of-Life
End-of-life is the ultimate transition. While it will come toward the end of your experience, if we begin with the end in mind, we begin by having conversations that help us plan a scenario that brings a meaningful close to a meaningful journey. The series of discussions surrounding end-of-life can be daunting and emotional under the best of circumstances. The conversations are significantly more challenging when there has been a serious diagnosis or a hospitalization that requires decisions to be made. Therefore, now is the time to begin to ask questions that will allow you to learn your family member’s wishes, understand what planning has been completed and what steps are yet to be taken. Before the need is imminent, the topics to discuss include preparing a will, determining advance directives, deciding on a cemetery and burial plot location, and funeral arrangements. Talking Points and Communication Tips
Housing
The conversation regarding where your parent(s) would like to live in 10, 20, or 30 years and what that might look like cannot start too soon. The conversation may look different depending on when you begin, but it is never too early. Now is the right time to consider all of the family members in your circle who may require your assistance in the future. Start the conversations, ask the questions, learn the wishes and plant the seeds of collaboration. Talking Points and Communication Tips
Health and Medical
Suppose you are simply helping your parent with finances or running errands. In that case, it is an excellent time to meet your parent’s physicians and begin to gain an understanding of their health condition, medications, and advice offered by the doctor. You could ask to go to a scheduled visit to introduce yourself and establish a relationship. It is nice to have this conversation and to have met for the first time under calm circumstances. This setting allows you to ask your parent if they like their doctors and why. You can also ask about their medicines and how they manage them.
Have the conversation during a non-stressful time and ask questions to gain information. You will be well prepared for the future when the topic may evoke more emotion. This is a great time to begin to research and record all of the medication management options. With awareness, you may notice that medications may have been missed or you have seen pills on the floor. You will recognize when the current strategy to manage medications may not be working due to memory or vision challenges. When you have a few ideas of a system that may work better, you can work together with your parent to adjust their practice so that they can safely manage the process for as long as possible. Talking Points and Communication Tips
Driving
There are sometimes clear signs that our parent should no longer be behind the wheel. Frequent fender benders, unexplained dents in the car, getting lost on familiar routes, slow reactions are a few warning signs. If you have asked yourself the question or just wondered how you would know when it is time to have the conversation, then it is the right time to plan for the inevitability that your parent won’t be able to drive at some point in the future.
Prepare by researching and recording the alternative transportation options in the area. To still participate in the activities they enjoy, what options may be available for each outing. This may not be the time to share your research. Rather, it is an exercise to help you prepare not only for the impact that this transition will have on your parent but also on you. Also, research the options for driving skills testing, older adult driver’s safety course, have a conversation with the PCP or eye doctor to determine if they will be an ally when a conversation is imminent.
Ride with your parent on occasion, check their vehicle for dents. If they no longer go to destinations that involve a long or complicated route, would they consider trying one of the transportation options for those trips? Awareness will help you determine when to begin to start the series of often emotionally charged conversations. Communication Tips
Safety
Sometimes, it quickly becomes evident that our family member is no longer safe living alone. Other times it is like asking a Magic 8-ball to predict the future. There are many articles on the subject, and despite the lists that are offered, it is rarely something that can be determined with a checklist. The guidelines can help us decide. As with many decisions in life, it may never be clear if we made the right choice.
The next time you are visiting your parents, make a mental note of housekeeping standards. If all looks like business as usual, this can become your baseline. It may be a red flag if you start to see standards slipping. Is home maintenance up to date? Are there any pills on the floor where medicines are typically taken? Check the food in the refrigerator. Is it the quality and quantity that you would expect? Is there any expired food?
Talk to neighbors. Linda Burhans, The Gal Who Cares for Caregivers, tells the story of a daughter visiting her parents. Through a social chat with her parent’s neighbor, she discovered that an ambulance had been to her parent’s home the prior week and took her mom to the hospital. This was the first she had heard of it. At the very least, you might give your parent’s neighbors your contact information in case they need to reach you.
If safety is a concern, your plan might include cameras or a life alert system, safety bars, and better lighting. When a safety concern arises, take some time for research, trial, and error. Awareness can help you stay a step ahead of the mishaps, but not always. It is important to know that accidents will happen. Accidents provide an opportunity to learn, forgive and possibly prevent further casualties. Communication Tips
Help
If your parents have expressed a desire to age in place and you are helping here and there, it is an excellent time to consider how the situation will be managed when more help is required and who will provide the support. Rather than take on more responsibility, research home care agencies, consider community services assistance such as grocery delivery. Begin to create a plan so that you can balance your needs and your life with care responsibilities. Awareness of increased stress is a sign that balance and boundaries may need to be revised.
Conversations
Plan a time to begin the discussions that will map out your itinerary. The holidays are not the best time to have an in-depth conversation but are a good time to be aware, be realistic and begin to think about how to best prepare yourself and your older adults for what is around the next corner. You may also be aging parents. If so, it is time to start planning the conversation with your adult kids. The plan you develop for you can be the talking points for discussing the topic with your parent(s). The Conversation Project is a great resource to help you explore your thoughts, strategize an approach and have the confidence you need to initiate the dialogue.
The best time to meet and develop relationships with the doctors, financial advisor, and eldercare attorney is during the calm before a potential crisis. What changes can be made to the living space today that may prevent a fall, improve mobility, reduce the risk of an accident? We don’t know what the future brings, but we can count on expected and unexpected challenges with age. What are the alternative transportation options in the area? Community resources? Well-researched solutions before the need is urgent will prevent last-minute rush decisions and the resulting consequences.
Holidays
If the holidays highlight the urgency, embrace reality. Consider what questions will help you prepare for the future without getting into touchy topics such as assisted living and driving concerns. You might find out more about what your mom’s or dad’s wishes are regarding their future living arrangements. Who are their doctors? Financial planner? Attorney? Where are important documents kept? The questions will lead to more questions. The answers and solutions will begin to form the foundation of sustainability for you and your family member who will need support. Some discussions may be best saved for after the holidays. Will their financial situation support their wishes? Who would they like to have help them make health care decisions when the need arises? Have they formally made those wishes known with a healthcare POA?
We, more often than not, avoid these conversations until our options are limited. Our culture does not embrace aging, losing independence, and death as just another part of life. Sadly, we embrace fear and denial as we push these realities away. Agingcare.com shared insight in the article, “In America, going grey is regarded in a distinctly negative light… We go from thinking of ourselves as children, then young adults, then adults, then we stop…”
Navigating the Caregiver River: A Journey to Sustainable Caregiving is available on Amazon. Also, check out the Self-Caregiving Strategies Podcast. Begin to build your personal Sustainable Caregiving foundation.
Schedule Theresa Wilbanks to speak on caregiving and empower the caregivers in your workplace or community with the 12 Sustainable Caregiving Strategies.
Advice offered is for general information only; please contact your healthcare team, legal or financial advisors to guide your particular situation.
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