A Caregiver’s Guide

When we become a caregiver, it often happens without warning, guidance, or support. Use the strategies and practical tips highlighted below to help you manage the demands of this chapter in your life and hopefully take some of the stress and heartache away.

Keep Records
Taking notes and developing a recordkeeping system can help caregivers navigate the demands of this emotionally challenging role. Ideally, develop a system on a mobile device — phone, tablet or laptop — that you can always keep with you. Create a system that keeps the newest entries on top. You can make copies of this checklist and fill in the information, or use it to create a digital template for your mobile device.

Doctors/specialists appointments Caregiving can get complicated fast, making it hard to remember and keep all the details straight.

• Doctor’s name
• Appointment date
• Points discussed
• Questions and answers
• Next steps

Test results If you’re looking for a diagnosis or you want to keep track of the rate of change, or look back and see patterns or red flags, keep a summary of test results.

• Test date
• Medical test
• Results

Symptoms/changes Noting symptoms and changes can help diagnose problems, provide better care or prompt ideas on how to respond next time.

• Symptom date
• Symptom/change detail
• Cause/trigger
• Observations/how to manage

Medications Keep track of medications. You will use this list frequently when meeting with medical professionals.

• Medication
• Start date
• Dosage
• Prescribing doctor
• Purpose
• If discontinued, reason why and date

Live in the Moment
When you become a caregiver, your life is often very different from what you had imagined. You may need to accept this momentous change, learn how to shift gears quickly and be prepared for a long haul.

Change your goals. The first step is to let go — quickly — of what you thought your day/week/life would be like. Caregiving comes in stages, and you need to change with each stage. As your loved one’s illness progresses, learn to shift gears with them as it happens.

Instead of thinking about what might have been, redefine success for your current situation. For instance, it could be caring, learning patience, giving comfort or even managing your reactions. Once you decide on your measures of success, you’ll know how you are faring each day and can feel successful. Find purpose in what you are doing, not in what you are missing, because what you are doing at any given moment is the most important thing.

Embrace mindfulness. Try to learn how to live in the moment. Read about meditation techniques. Learn how to “micro-meditate.” Practice focusing on your breathing and turning off your thoughts for just a moment. Get to a place in your mind where you can believe this is what you want to do. Focus simply on the moment and find some beauty in it.

Ground yourself. Develop a technique to ground yourself and live in the moment. You can use it when a hard situation knocks you down. Try curling your toes into the ground or take a slow, exaggerated breath and come back to the moment.

Marshall Your Resources
Caregiving is a demanding role, and it’s extremely important to find ways to lighten your load. Here are some tips and resources to consider.

Join an online caregiver support group that’s relevant to your circumstances. These support groups are often available 24 hours a day. You can ask questions, share real-life experiences and solutions. You’ll find information and support that you can’t get elsewhere.

Consider using Caringbridge.org to update friends and family. It’s an easy way to keep those who care about your circumstances updated without having to initiate or answer messages from everyone individually.

Research home safety and care tools so you can be prepared to purchase and install when needed or, even better, before you need them. While needs vary widely based on circumstances, here are a few examples:

• Floor to ceiling pressure-mounted transfer poles for those who may need a wheelchair
• Toilet to tub or shower transfer bench for those with mobility limitations
• Grab bars for bathroom transfer points and doorways with steps
• Lightweight transfer wheelchairs for use inside or on car rides
• Ramps for wheelchairs
• Cloth bed pads with handles on two sides
• Elevated toilet seats with side handles

Consider hiring help before it becomes critical, for you and the patient’s wellbeing. While typically not covered by medical insurance it may be covered in part or full by Long-Term Care (LTC) Insurance. And even if LTC insurance coverage isn’t available, this is an expense well worth considering. Start with one (or more) shifts a week for help during either midday, in the morning or at bedtime. If the first agency you talk to doesn’t offer short shifts, keep looking. If on hospice, ask about respite care.

Connect your support team members — friends or family who want to help — with one another by email or group text. Guide them on what you do or don’t need. Give them a list of tasks, particularly ones that would lift your spirits if someone else did them. Remember, they won’t know what you need unless you tell them.

Handle Cognitive Issues
One of the hardest aspects of caregiving is cognitive issues. They can be difficult to recognize and manage. If this is one of the stages of your loved one’s illness, be prepared.

Research online to see if your loved one’s condition may have cognitive implications and what they might be. For example, you might want to learn about confabulation, a possible symptom of cognitive decline. A person unconsciously fabricates stories or information to fill gaps in their memory as a defense mechanism which is why confabulation is often described as “honestly lying.” Confabulation can range from small distortions of actual memories to elaborate stories.

Keep notes of any cognitive issues you see, with dates, triggers and your own observations on how you might help prevent or respond the next time.

Manage your reactions and responses to cognitive issues. Try to adapt quickly as changes occur and process your feelings in private later. It helps to recognize that changes may be part of the disease, not the patient’s will. Others may not always see or understand what you are dealing with.

Prepare for the Future
As hard as it can be, if an illness is terminal, you need to plan for what’s ahead. Being prepared and organized can help reduce stress.

Discuss your loved one’s wishes for their final steps — burial or cremation, burial site or spreading of ashes. Make plans for a service/funeral/celebration of life, including the location, officiant and speakers. Consider drafting an obituary together.

Suggest your loved one review all accounts and beneficiary designations (retirement plans, life insurance, etc.) and update if necessary. Beneficiary forms could be outdated and not reflecting the owner’s current wishes. Retirement plan accounts don’t fall under the direction of a will or trust and your loved one may not know this.

Update guiding documents and encourage your loved one to review and, if necessary, update his or her health care directive and power of attorney. Ask their doctor about a POLST (Physician Orders for Life-Sustaining Treatment). If there is a POLST, consider keeping a copy on the refrigerator for first responders and another with the patient (as well as with you and any other caregivers). The names of planning documents may change based on jurisdiction. Contact your financial or legal professionals for more information.

Suggest a Q&A Ask questions and record their answers about memories and current thoughts. At their direction, you can share these later with family members.

Suggest your loved one write letters to those they love. These may serve as the greatest, long-lasting legacy to those who are dearest.

Talk with your loved one as much as they can or will. Remember that the end may come more quickly than expected and you may not get time for a formal goodbye.

Start a list of what will you need to do when your loved one dies. It can help guide you through those first hours, days and weeks.

Think about what you might do when you are no longer a caregiver. Life after caregiving can be a shock at first, and this can help prepare you for the weeks, months and years that follow.

Life After Caregiving

The first day might be easier than the second, the second week easier than the third, the third month easier than the fourth. Control what you can, and be understanding of yourself.

• Turn to your team. Let them know how they can help you: Are there errands they can run for you or with you? Let them drive you. For safety’s sake, don’t drive yourself for at least the first few days. Is food welcome? Let them know what would be best. Would you like to talk about the death? Let them know. Many are afraid to ask.
• Create a new immediate to-do list for yourself from any notes you kept during caregiving. Keep all key papers after the death in a brightly colored pouch. You may be easily distracted at this time and this can help safeguard you against losing track of important documents. Consider keeping in this pouch one folder for to-dos, one for death certificates, one for expenses, etc. Be sure to cancel credit cards. Let credit reporting agencies know of the death.
• When the time is right (when immediate needs have been dealt with), start to create your new, postcaregiving personal to-do list. The future has changed irrevocably, and this list can be your guide to your new life, new circumstances. Consider breaking your list into immediate, medium-term and longer-term (future) to-dos, including daily, weekly and monthly to dos, future travel ideas to research or work or volunteer opportunities to consider.
• If newly alone, consider a pet. Having a pet gives you an extra reason to get out of bed in the morning and can provide companionship day and night.
• Make changes that feel good for you. This is when you can start to take some care of yourself after giving care for so long. Make changes in your home or schedule days that bring you comfort and joy.
• Consider starting a ritual, at least for a time, that allows you to continue to hold your loved one tangibly in your life. For example, you might turn a small light on each evening where your loved one regularly sat or slept. Or you might start a new list on your phone with the things you wish you could tell your loved one.
• Send thank you cards. Writing thank you cards for sympathy cards received can be comforting and therapeutic by thanking the person for their words of comfort and for what they meant to your loved one.
• Remember mindfulness. You may have waves of emotions that hit unexpectedly or are complex. Use any mindfulness skills you can to come back to the moment. Read about ways to process grief and loss.

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