A positive attitude and a flexible approach can go a long way as we feel our way along the sometimes uncertain path a caregiver must follow. But even the most laid back person is going to feel stressed by the responsibilities of caregiving from time to time. Carol Bradley Bursack, Where Is the Line Between Caregiver Stress and Burnout?
- Take a deep breath. This may be the most important advice you receive throughout your caregiving journey. All along the way, remember to pause from time to time and collect your thoughts. Clear your mind and relax. It may be difficult, but it will help sustain your spirits and prevent you from sinking under the weight of caregiving burdens.
- Be sure to know your loved one’s date of birth and Social Security number. If necessary, write them down on a piece of paper and keep it in your wallet or purse. You will need both to access most medical services.
- Put together a complete health history for your loved one that includes:
- their major illnesses, hospitalizations and medical conditions;
- the medications they take (prescription drugs, over-the-counter drugs such as aspirin, antacids, herbal remedies, nutritional supplements — even daily multi-vitamins), dosage amounts and instructions for taking each one (time of day, with food or between meals, etc.);
- all food and medication allergies;
- dates of their most recent immunizations (flu, pneumonia, shingles, tetanus, etc.), and the results of recent medical tests, including exams, x-rays, CT scans and MRIs, as well as where and when those tests and exams were done;
- the names, phone numbers and addresses of their doctors and pharmacy; and
- if possible, include major illnesses, medical conditions and cause of death for your loved one’s parents, brothers and sisters.
- Every time they go to a doctor, the emergency room, are admitted into a hospital, or visit any other type of medical facility, be sure to take along:
- an up-to-date copy of their health history;
- their photo ID (a driver’s license or ID card issued by their state of residence);
- the original (not a copy) of their insurance card (for people 65 or older, this would be their Medicare card); and
- for people 65 or older, the original of their ID card for any supplemental or additional health insurance such as Medicare Supplement or Medigap.
- Every time they go to the hospital, they need to take along a copy (not the original) of their:
- Living Will; and
- Durable Power of Attorney for Health Care (Health Care Proxy)
- Patient privacy rules can be a big obstacle for you. For example, if your loved one has a medical emergency, you may not be able to get any information about him or her, even if your loved one is your spouse. When you ask, “Why not?,” you’ll hear that you can’t be told because of HIPAA. Your spouse (partner, significant other) and other members of your family are automatically excluded from your list of authorized people. Very few Privacy Authorization forms have a space where you can indicate which family members do have your permission to share your medical information. Here’s what to do.
- Learn as much as possible about your loved one’s medical condition. Talk to their doctors, but only after you read about Patient Privacy rules. Do research on the Internet; start with MedlinePlus, a service of the National Library of Medicine. Contact related organizations and associations for information about the condition. Study the symptoms and progression of the disease so you can anticipate what might come next. Find out about available treatments, experimental research and clinical trials.
- Familiarize yourself with your loved one’s health insurance. What kind of insurance do they have? Are they eligible for Medicare benefits or Medicaid? Do they have a long-term care insurance policy? If so, what exactly does it cover? Medicare has prepared the booklet, Medicare Basics: A Guide for Families and Friends of People with Medicare. (Download it here.) Each year, Medicare publishes a more comprehensive booklet for its participants, Medicare & You. (Download it here.) Or, if you wish, you can order a free printed copy directly from Medicare here.
- Find out if your loved one has the proper legal documents in place. Has someone been appointed to handle their personal finances and pay their bills in case of temporary or permanent disability? In addition to a Living Will and Durable Power of Attorney for Health Care that were discussed above, your loved one also should have a current:
- Will; and
- Durable power of attorney for finances.
- Talk to your loved one about their finances. What assets does he or she have? Do they own real estate? How much is their home worth? How much is in savings accounts, IRAs, stocks and bonds and other investments? What is his or her monthly income from Social Security, other government programs, private pension plans, CDs, other bank accounts, annuities and investments? For more information, visit our page How to Talk with Your Parent about Their Money.
- Call a family meeting. Try to get as many people as possible involved from the beginning. Early input from them will facilitate communication and decision-making down the line. Allow all family members a chance to express themselves and their feelings about what should be done. If possible, designate a person to be responsible for each task. Don’t be afraid — or too proud — to ask for help. Getting help can make a major difference in your life.
- Make sure that everyone on the caregiving team — whether family members, friends or professionals — has the information they need to perform their responsibilities. Make a list of emergency numbers, family contact numbers and other items and distribute it to those who might need it. Family members should know how to locate legal, financial and medical documents like durable powers of attorney, living wills, investment account statements and health insurance policies in case of emergency.
- If your loved one is still living at home, make sure you and others in their inner circle have keys to their residence in case of emergency.
- Consider hiring a care manager. These professionals are trained to quickly assess the overall situation, make recommendations about needed services and, if necessary, coordinate community resources as well as hire and manage paid caregivers. Start with the Aging Life Care Association. That’s the major national association of health care professionals who oversee long-term care arrangements needed by older people. Their website includes a locator to find care managers near your loved one.
- If you decide not to hire a care manager, take a crash course in community resources. Find out about senior centers and adult day services in your loved one’s area. What are the best home health agencies around? What meal delivery and transportation support options are available?
Aging.gov/State Resources will be a big help to you. Click on your state for a full list of resources including how to apply for health insurance and how to report abuse. The most used links will likely be “Services and Help” and “Direct Service Locations.”
Assess your loved one’s skills and determine the resources you need. Our 14-point checklist, How to Tell if Your Elderly Loved One Needs Help, will help you determine what help your loved one needs.
- Consult with everybody and anybody. Talk to friends, neighbors, acquaintances — anyone with experience in caring for an elder. In reaching out you will assemble a mosaic of information about how to proceed and what to expect down the line.
- Even if this is an acute crisis that’s likely to pass, start gathering information about assisted living facilities and other long-term care options. When the time comes, you want to be able to offer your loved one a range of options to choose from.
- Talk to your loved one. This isn’t always possible, but it’s best to allow them as much independence as circumstances permit. Remember that the caregiver’s role is to help them maintain as much control over their lives as feasible, not take it away; this includes allowing them to make their own decisions unless the decisions become harmful to them. The more you can consult with them, consider their desires, and truly respect them, the smoother the transition in your relationship will be. Three quick tips: don’t contradict or argue with them; don’t bring up subjects that might upset them; and if they do get upset, quickly change the subject.
If your loved one has Alzheimer’s or another form of dementia, please understand and accept that your loved one is not a child in any sense of the word. They may have lost their ability to understand their own environment, follow a sequence of directions or even understand how to use the toilet. These issues do not in any way make these people less than adults and they should never be treated as such.
Treating our elders with respect and dignity means understanding that lost cognitive ability doesn’t take away their adulthood. Nothing they have done or not done during their lives turns them into overgrown children.
- Loss of sight, hearing loss, memory loss, confusion, incontinence and depression are not normal aspects of aging. In many, if not most cases, these are treatable conditions. Indeed, they could very well be the result of prescription drugs interactions or side effects. Failure to identify these conditions as being treatable could place elderly patients at risk of unnecessary functional decline.
- Keep at least two journals. Use one for medical information. Whenever you talk to a doctor, lawyer, insurance company, service agency, government office or advocacy organization, write down the date and the name of the person you spoke with, contact information and the substance of the conversation. Keep this information in a separate file.
In a second journal, keep track of the hours you spend caregiving each day and the tasks you performed. Also keep an itemized list of everything you spend, including the dollar amount of each item/service purchased, its purpose and who paid for it (you, one of your family members, or the person for whom you are caring). Keep all receipts in a separate file. Many, if not most, of these expenses may be tax deductible as qualified medical expenses.
- Even though this may sound unnecessarily pessimistic, never assume that the professional and medical personnel who are helping you with your loved one will do what they promise. If you don’t actively follow-up, you may set yourself up for disappointment.
But, don’t be a pest — instead, be conscientious. While they made their promises with the best of intentions, these professional people are extremely busy and have other people to care for in addition to your loved one. They may honestly forget a commitment made to you. Bottom line — the more you become involved with the care and other affairs of your loved one, the more satisfied you will be with your caregiving experience.
- Acknowledge your own feelings of loss, anger, shock and confusion. Perhaps you realized this moment was coming, perhaps not. In any event, you are likely to find unsettling emotions bubbling through the surface. Those are normal. Allow yourself time to experience them. Write them down in a private journal. Take a long bath. Find a quiet corner and close your eyes.
- Take care of yourself. Caregivers have a much higher risk for health and emotional problems than other people. That’s because they are less likely to attend to their own health by eating nutritious foods, getting regular physical activity and treating physical and emotional problems. While it may feel like your first responsibility is to your loved one, YOU must come first. (You can’t help the person you’re caring for if you’re sick in bed, in the hospital or, worse yet, have a nervous breakdown.) Here’s how to schedule “Me Time” for yourself.
- Finally, remember that You Are Not Alone. Thousands of people just like you are in the middle of their own caregiving journeys. Some are frustrated with family members who refuse to help, or are in denial about their loved one’s situation. Others have to deal with loved ones who, to put it mildly, are always cranky, never satisfied with the care their caregivers are providing, obsessively controlling, demanding, utterly helpless, etc. Others are simply seeking advice about the best ways to accomplish a task. And, others simply need a friendly, non-judgmental place where they can vent without fearing recrimination.
Join a support group, even if you just listen in. Your local hospital may have a monthly support focused on Alzheimer’s and other dementias. Or, participate in an online support group. Our own Support Group is completely open. Whether someone asks a question, and others jump in with their suggestions for help — or you simply need to vent — our participants respond 24/7.
I keep my own health history in a Microsoft Word document so that I can easily update it. If you would rather use an online app, I recommend Microsoft’s HealthVault. (Visit our page How to Talk with Your Parent about Their Health for more information.)
If your loved one doesn’t have these forms or hasn’t updated them recently, don’t wait until it’s too late. For more information, visit our page How to Talk with Your Parent about Advance Directives.
Put one copy of each of these documents, along with a copy of your loved one’s complete health history, in a Medical Emergency Folder. This is vital information for the EMTs in case of a 911 call. My wife and I keep ours in blue and red plastic check-size expanding files that we keep on her dresser in case of a medical emergency.
If any of these four documents has not been completed, your loved one should work with an attorney who specializes in elder law. Don’t wait until it’s too late. Check the yellow pages in their local telephone directory, or go to the National Academy of Elder Law Attorneys website. On their home page, simply click on the large red button in the upper right corner that will help you locate an elder law attorney. (You don’t need a Username or Password.)
Please feel free share what has worked well for you in the comments below.