Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part three of an eight part series.
Once you and your loved one have absorbed the reality of the Alzheimer’s diagnosis, it’s time to think about the practical matters of caregiving and daily life.
While changes may be subtle at first, the truth is that learning to cope with a continually shifting “new normal” can be daunting. This article documents all the early steps you can take – and decisions to consider – to make the transition as smooth as possible.
Resource: eCareDiary: manage appointments, track medications and get reminders, organize important documents, coordinate care among family members
Setting Out
“The change is always in us,” says Kerry Mills, nationally recognized dementia coach and author of I Care: A Handbook for Care Partners of People with Dementia. “We can’t change a person with dementia, so we will always have to change ourselves to be able to see a difference in the situation.”
Building Your Team
Ideally, you and your loved one have already had a lengthy discussion about what lies ahead. If you are not going to be the primary caregiver, whoever is taking on this responsibility should be included in meetings from as early a stage as possible. If the primary care provider is not a geriatric specialist, now may be the time to consider a switch, or add a geriatric behavioral psychologist to the team.
Specialists are often more current on new clinical studies and are experts in dealing with issues like agitation, sleep disturbances, paranoia and coping with impaired thoughts. Make sure to review any new medications or changes in medications with each practitioner.
Local support groups are very helpful. “Finding a good group that is just for spouses will help you find out the things doctors and other professionals don’t tell you,” says Allen Vann, whose wife Claire was diagnosed with early-onset Alzheimer’s eight years ago at age 63.
Partner with primary care provider to coordinate all facets of health care and manage medications. If the doctor or nurse practitioner is already part of a patient-centered medical home – a model of care where one provider is the point person to coordinate all other services: specialists, tests, medications or home care – then it will be easier for everyone to stay on top of changes in disease progression, medications or manage problems.
Finding a good group that is just for spouses will help you find out the things doctors and other professionals don’t tell you.
“Most older people are already juggling several chronic conditions, with multiple providers and multiple medications,” said Susan Reinhard, PhD, RN, Senior Vice President for Policy at the American Association of Retired Persons. “When you lay Alzheimer’s on top of that can it can be a real challenge to ensure that that people get the right care at the right time.”
Participating in a managed care network like the Kaiser Health System – Kaiser Permanente is a tightly integrated payment and health care delivery arrangement that offers high quality services at the lowest possible cost – may result in more seamless care coordination. All clinicians within the network have access to the person’s electronic medical records.
Check your loved one’s current health plan and consider alternatives during the open enrollment period if you’re not satisfied with the level of care coordination or communication among providers.
Then, of course… family. Gerry Polnivy, 86, relies on her daughter to help keep track of the many clinical appointments and medications for her husband, who is in the mild stage of the disease. “She keeps a calendar and writes all the appointments on it and when to give each medication,” she explains.
Polnivy’s husband sees a cardiologist, neurologist, and urologist in addition to regular visits to their primary physician. “I don’t know how I’d manage all of this without her help,” she says.
Get Organized, Stay Organized
Financial planning and health directives are critical issues that must be addressed shortly after diagnosis, say experts at the American Bar Association. Many families are unprepared for the consequences of this disease because of inadequate planning and poor communication among caregivers, loved ones and other family members.
Basic documents such as an advance directive should be updated and discussed with providers to ensure that medical decisions are carried out according to your loved one’s wishes.
Virtually everyone should create a financial power of attorney and a health directive, said Charles Sabatino, Director, ABA Commission on Law and Aging, American Bar Association. Although generic forms are available online, Sabatino says that they usually only cover 75 to 80 percent of what’s needed.
“Spending time with an attorney who specializes in eldercare addresses issues that you may not have even thought about, like protecting assets, creating trusts and avoiding potential abuse or exploitation.”
An advance directive is the most important health document to draw up immediately.
An advance directive is the most important health document to draw up immediately. This allows your loved one to name a designated health agent. The primary provider, adult children, and other caregivers should be told of the provisions.
Some providers may refuse to share health information, citing HIPAA (Health Insurance Portability and Accountability Act) privacy rules. This is a federal law that sets rules for health care providers and health insurance companies about who can look at and receive a person’s health information.
Or, they may insist on having the patient sign a proprietary waiver.
That’s just wrong, Sabatino advises. “It should be legally sufficient for anyone named in the advance directive, including other family members, to access and discuss health information with a provider.”
Laws vary by state so be sure to work with someone who is familiar with requirements where your loved one lives. Although the basic framework is similar in most states, many provisions are idiosyncratic, Sabatino says.
“And that’s, I think, the scariest part, because you’re responsible all of a sudden for this other person and paying the bills and making all these really big decisions that maybe you haven’t thought about before.”
“Many people are just not comfortable handling this; it can become overwhelming very quickly.”
Location, Location, Location
Wisconsin resident Jennifer Zaijaick was “constantly on the phone” long distance with her father’s physician in Florida. It’s been anything but an easy experience. “We’re working to find a respite facility here [in Wisconsin] that will help care for him, but it’s getting too complicated and his health has really declined,” she explained.
“It’s been a difficult journey finding the resources all the way around to help take care of him, and know what to expect.” She ultimately had to change jobs to free up more time to devote to caregiving.
The lesson here is that the reality of dealing with Alzheimer’s, and other forms of dementia, varies from state to state, and from city to city. This is simply a fact of American life, and is something that should be taken into account as you chart your course.
Talking the Talk
An important part of the caregiver’s journey is learning a new language. Here are some useful definitions:
Advance Directive is a document by which a person makes provision for health care in the event that, in the future, he or she becomes unable to make decisions. There are two types of advance directives – a living will and a health care proxy (also called durable medical power of attorney).
Living Will
is a signed, witnessed (or notarized) document called a “declaration” or “directive.” Most declarations instruct an attending physician to withhold or withdraw medical interventions from its signer if he or she is in a terminal condition and unable to make decisions about medical treatment.
Health Care Proxy, sometimes called a “health care surrogate” or “durable medical power of attorney,” is a signed, witnessed (or notarized) document in which the signer designates an agent to make health care decisions if the signer is temporarily or permanently unable to make such decisions. Unlike most Living Wills, the Durable Medical Power of Attorney for Health Care does not require that the signer have a terminal condition. An agent must be chosen with great care since the agent will have great power and authority to make decisions about whether health care will be provided, withheld or withdrawn from the signer.
Palliative Care
includes pain and symptom management and emotional and spiritual support when someone faces a chronic, debilitating or life-threatening illness. Palliative care specialists work with the person, the family and the care team to help improve quality of life during and after treatment for your specific medical concern. It is provided in tandem with life-prolonging therapies.
Research, Research, Research
Here are some examples of good places to turn for guidance.
Patients Rights Council
American Bar Association Power of Attorney Guide
ABA Estate Planning FAQs
ABA Consumer Toolkit for Advance Planning
Family Caregiver Alliance: End of Life Decision Making
The U.S. Living Will Registry electronically stores advance directives and makes them available to health care providers 24 hours/day via secure Internet or telephone-facsimile. The registry stores ALL types of advance directives: living wills, health care proxies, health care power of attorney, as well as organ donor information. Phone: 800-LIV-WILL (800-548-9455)
Liz Seegert is an independent health journalist who covers aging and related issues. Follow Liz on Twitter and see more of her work at lizseegert.com.
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