Elder Care... First Steps
- Aging Solutions
Gather Information to Start Your Caregiving Journey
Caregiving for an aging parent, spouse, domestic partner or close friend presents tough challenges – especially when a crisis hits and responsibility descends upon you suddenly. Maybe your mother has fallen – perhaps due to instability caused by prescription drug side effects – and is hospitalized with a broken hip. Or your spouse has wandered off and gotten lost several times. Or a long-time friend and mentor has lost a lot of weight and rarely seems to leave home.
Caregiving descends upon us in all sorts of ways – through sudden crises or a series of small but unsettling mishaps and warning signs. You may be the only person to step in or you may simply be the linchpin of a large network of family members and friends willing to help. Whatever the situation, you're not sure of the next step. Or even the first step.
Whether you are in the middle of a crisis and decisions have to be made quickly, or planning ahead for an elderly loved one because of unsettling warning signs, we can help you in a variety of ways.
What kind of help does your loved one need? Are the problems undiagnosed but correctable? For example, prescription drugs interactions and other drug side effects, Vitamin B12 deficiency symptoms, dehydration symptoms and other treatable causes are mistaken for Alzheimers and other age dementia symptoms more frequently than most people realize. According to Consumer Reports on Health, "Any new health problem in an older person should be considered drug induced until proven otherwise." (To help determine if prescription drugs might be a source of your loved one's problems, click on Prescription Drugs Interactions to go to that page.)
If your loved one's problems are not correctable, what living arrangements and nursing care plans are most appropriate? If they are able to remain in their own home, how do you figure out what kind of home care to arrange? Is assisted living preferred over nursing homes? What particular challenges does your loved one's disability pose? What's the best way to access community resources? How will you manage it all – and still maintain a life of your own?
This article will walk you through the first steps – whether you are dealing with Alzheimers Disease or other age dementia symptoms, recovery from a broken hip, or trying to figure out Medicare benefits. It's intended as a primer - a source of both information and comfort. Each caregiving situation is unique, of course. The senior's medical history, financial resources, personality, relationships with potential caregivers, proximity to services and other factors all determine the best approach to take. Some may have prepared in advance for declining health and have the necessary documents and services in place; others may have delayed taking action because they always believed they had more time.
Whatever the circumstances, the guidelines on the next page will help you get started. Then, on other pages, we've included a number of checklists to help you with more detailed guidance – and to help you feel more confident that you haven't forgotten something important. Finally, we've included links to a number of excellent specialty Web sites to help make it easier for you to find the information you need – and to save you time.
So, here's our advice to caregivers –
- Take a deep breath. This may be the most important advice you receive throughout the 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.
- Make sure you know the senior's date of birth and Social Security number. You will need this information to access many services.
- Collect information about medical providers. If you haven't done so already, gather details about your loved one's physicians and health insurance. Here is some of the information you will need:
- Names, phone numbers and addresses of the senior's doctors, dentist and pharmacy (be sure to include complete details about any arrangements the senior has made for discount prescriptions)
- Copies of health insurance policies and the front and back of all insurance cards; if your loved one is 65 or older, you will need a copy of his or her Medicare card. (Medicare has prepared a helpful online booklet; to download it, click on Medicare & You. It includes a summary of Medicare's benefits, rights and protections, answers to the most frequently asked questions about Medicare; and information about Medicare's new prescription drug coverage.)
- Make a list of all medications (prescription drugs, over-the-counter drugs such as aspirin, antacids, herbal remedies, nutritional supplements – even daily multi-vitamins), dosage amounts and instructions for taking them (time of day, with food or between meals, etc.). Take this list with you to ALL of your loved one's medical appointments to help avoid dangerous prescription drugs interactions.
- Date and results of recent medical tests, including exams, xrays, CT scans and MRIs.
- Complete health history (also take this with you to all of your loved one's medical appointments); if possible, include major illness and medical conditions for your loved one's parents, brothers and sisters.
- A very effective online tool for gathering, recording, storing and updating this information is available from ElderIssues.com. Their LifeLedger Online Services can give you the information and guidance you need, and the peace of mind you want. For details, click here.
- Learn as much as possible about the medical condition afflicting the senior. Talk to the doctors, but only after you read this Important Note. Conduct research on the Internet (start with our page Elder Care Resources).
- Seek reference books in the library. Contact related organizations and associations for information about the disorder. Study the symptoms and progression of the disease so you can anticipate what might come next. (We've compiled a list of symptoms for some of the most common health conditions afflicting the elderly on our page Symptoms.) Find out about available treatments, experimental research and clinical trials. (We've included more information about clinical trials in our page Prescription Drugs and other Medications.)
- 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.
- Find out if the senior has the proper legal tools and documents in place. Has someone been appointed to take care of business and make health care decisions in case of temporary or permanent disability? Has the senior made clear their wishes for end-of-life care? If necessary, consult an attorney specializing in elder law. These are some of the documents you should help the senior prepare if they haven't already done so:
- Will
- Durable power of attorney for finances
- Durable power of attorney for health care
- Living will
- Living Wills and Powers of Attorney for Health Care are often referred to as Advance Directives for Health Care.
- Investigate your loved one's health insurance matters. What kind of coverage do they have? Are they eligible for Medicare benefits or Medicaid? If so, are they enrolled properly? Do they have a long term care insurance policy in place? If so, what exactly does it cover? Do they have any coverage through a private pension plan or retirement package?
- Because insurance policies can be confusing, we have prepared a glossary using words that are easy to understand. It also includes other terms related to long-term care. To see it, simply click here.
- Explore other available financial resources. 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?
- Take a crash course in community resources. Find out about senior centers and adult day services in the senior's area. What are the best home health agencies around? What meal delivery and transportation support options are available? Assess the senior's skills and determine the resources you need. (Once again, we've included in this Web site a variety of checklists and links to Internet-based resources to help you investigate these matters.)
- Even if this is an acute crisis 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 the senior a range of options to choose from. (Once again, you'll find the information you need to start on other pages.)
- Recognize that 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. (They could very well be the result of prescription drugs interactions or drug side effects.) Failure to identify these conditions as being treatable could place elderly patients at risk of unnecessary functional decline.
- If your senior lives in an assisted living facility at some distance from you, one of your concerns will be replenishing your loved one's health care supplies at a reasonable price. While you can hire a personal shopper, it may be less expensive and just as reliable for you to shop online and have the supplies delivered to your senior. We recommend Vitality Medical for a wide variety of health care products and supplies for first aid, incontinence, wound care, foot pain relief, diabetes, canes, and handicapped equipment such as medical bed rails frames, walkers for the handicapped, handicapped shower accessories and grab bars. (To visit Vitality Medical's online catalog, click here.)
- 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 and hire and manage paid caregivers.
- 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. You will learn that others have been there before and found their way through – though sometimes with great difficulty and sadness.
- Talk to your senior. 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.
- 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 the senior is still living at home, make sure you and others in their inner circle have keys to the residence in case of emergency.
- Keep good notes. 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. Maintain separate files for different areas of concern – financial topics, medical affairs and so on.
- 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. 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. Allow yourself time to experience them. Write them down in a journal. Take a long bath. Find a quiet corner and close your eyes. Take care of yourself, too.
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