Wednesday, July 29, 2015

Beginning to Plan for the Future

by Emily Anderson

Less than 50% of Pennsylvanians have advance directives like a will, a power of attorney, or a living will. Do you have them? Does your loved one? Are they up to date or from several decades ago? If you are taking care of someone, you should have these documents and understand what they contain.

Advance directives tell your family and your doctors who can make decisions for you and what you want done if you suddenly become "incapacitated," or unable to make decisions for yourself. There are four main types of documents that fall into the category of "Advance Directives" that you and your loved one need:
  • Durable Power of Attorney
  • Durable Healthcare Power of Attorney
  • Living Will
  • Will

Each is important for a different reason. Most of us are familiar with a will and what it does, but the first three documents on that list are more complicated because they come into play while your loved one is still living. Let's use an example to explore what each of these legal documents does. Suppose Anne is taking care of her father, who is 85 years old and still independent, but declining in health. Anne drops by her father's house about three times a week and calls daily, and lately has noticed that he is slower, more tired, and more forgetful. One day she arrives to find that he has fallen and has been lying on the floor for three hours. Anne calls an ambulance, and they whisk her father off to the hospital.

In the hospital, Anne's father is found to have a broken arm and a urinary tract infection and when she tries to talk to him, he is confused and delirious. Luckily, Anne has been prepared for this moment and has several legal documents in place. She presents the doctor with a copy of the Durable Healthcare Power of Attorney, showing that since her father is not able to make decisions right now, she will be the one making decisions on his behalf. Until her father is back to his usual self, the doctors will ask Anne to approve any treatment decisions.

In the meantime, Anne also pulls out her father's living will. A few years ago they had a difficult but important conversation about what sorts of treatment he wants. They recorded that information in his living will so that if he is not capable of making decisions, as he is now, his family and his doctors still know what he wants. Anne sees that her father wants antibiotic treatment, but if things get worse, he doesn't want to be hooked up to a bunch of tubes or given CPR. Anne also shows the living will to her father's doctor, so they can help make sure his wishes are respected.

In addition to being her father's healthcare power of attorney, Anne is designated as his durable power of attorney. As her father's hospital stay lengthens, being durable power of attorney lets Anne deal with other legal and financial matters on her father's behalf. She checks on his bank account, makes sure his bills are paid, and calls his long-term care insurance to see what help they cover for her father when he comes home. If the situation continues to stretch on, Anne could eventually take over all of her father's personal and financial matters, from managing his pension to paying for nursing home care.

Anne and her father were prepared for this moment, but if they did not have the legal documents in place, Anne would have run into frustrating complications as she tried to manage her father's affairs. People are often intimidated by the complexity of setting up legal documentation. Having everything in place made it so Anne knew what her father wanted and was able to make it happen even when he was sick. We often see people who wait too long to set up the legal documents, and then when their loved one is in a crisis, they are not able to step in and make decisions.

According to Attorney Carl B. Zacharia, J.D., the most important item to set up first is the durable power of attorney. As long as you have that in place, if your loved one becomes incapacitated, you'll be able to make decisions on their behalf, both for their continued health and for their finances.

Now, I know many people reading this are thinking to themselves, "But creating legal documents requires a lawyer, and those are expensive!" So we're going to look at some options for setting up the legal documents.

First and best, you can find an elder law attorney and speak with them personally. This will ensure that your legal documents hold up under local laws and that your loved one's specific wishes are set down in the best way possible. Especially if you are in a complicated situation and you want to make sure it's done right, it's best to talk to a professional.

Second, check out senior centers in your area. Many will offer workshops in which you and your loved one can create a living will, a power of attorney, or will. Often, these workshops are free or low cost!

Finally, you can take a chance and draft something yourself. There are several resources online to help you prepare legal documents on your own, such as the Pennsylvania Department of Aging, the AARP. There is a big risk here: law is a pretty nit-picky area, and if you don't word your document just right, it may not stand up under pressure. It's better to have something than nothing, but if you choose to go it alone, recognize that your efforts might not be truly legally valid.

For more resources on planning for the future, take a look at these sites:

If you live outside Pennsylvania, check with your local AARP chapter or Bar Association for more resources.

Wednesday, July 22, 2015

Research Roundup -- July

by Emily Anderson

Science and research move ahead quickly. We’ll periodically give you an update on important findings that might be relevant to you or your loved one. Take a few minutes to read about what’s new this month below!

Diabetes management can slow cognitive decline

Uncontrolled blood sugar could contribute to the development of dementia, but also will rapidly speed decline. We've known for a while now that diabetes plays some kind of role in the progress of dementia. A new study shows that uncontrolled blood sugar levels lead to more neuronal plaques in the brain, thought to be the main cause of dementia. The lessons: if you don't want dementia, get your blood sugar under control, and if you're taking care of someone with memory problems, out-of-control blood sugar will likely make those problems worse.

Steps you can take to age well

Being a caregiver for an older adult often makes us think of our own aging process. So far, medical remedies have been few and far between, but it is never too late to make lifestyle changes that can dramatically impact long-term health. A recent survey discovered that though most people are aware that lifestyle factors impact how well we age, there is much more confusion over what, exactly, we should be doing. It turns out there is rather sparse evidence for brain games like crossword puzzles and even less for some of the much-glorified "magic foods." But a generally healthy diet, regular exercise, stopping smoking, and maintaining heart health are strongly linked to brain health. If you're taking care of someone, you may be closely watching their healthy habits, but are you watching your own? Protect your own health by making some lifestyle changes today!

Don't know how to get started? Try here!

New report on caregiving in the US

Ever wonder who else is doing what you're doing? The AARP and the National Alliance for Caregiving have released a new, comprehensive report on caregiving in the US. It explores the details of caregivers' lives including demographics, unpaid hours, daily tasks, stress and strain, and even the impact of caregiving on work. The report itself is a bit technical and heavy on the numbers, but if you're curious, it is a wealth of impactful statistics you can use to impress your friends and your boss.

Wednesday, July 15, 2015

Get Smart!

Trainings, Classes and Events Coming up Around Pittsburgh

by Emily Anderson

Take advantage of the many wonderful opportunities in our community to learn new caregiving skills, connect to resources, and hear other people’s stories. Here are a few upcoming classes you may be interested in:

AAA Caregiver Series

These classes take an in-depth look at issues related to caregiving. The Thursday, July 16th class covers legal and financial issues, while the Friday, August 7th class will discuss healthy eating. This series is held from 10am to 12:30pm at the AAA offices on the South Side and though it is partway over, it is not too late to join and get the information you need! Please RSVP to 412-350-4996.

By the Department of Human Services
Located at 2100 Wharton St, Pittsburgh, 2nd floor

How to Navigate Your Personal Journey

This six-class series will cover common myths and symptoms of grief, handling difficult emotions, making needed adjustments, and identifying supports for yourself. There is a $15 registration fee, and classes will be held at the Good Grief Center in Squirrel Hill. Classes are on Thursdays from 6:30pm-8:00 pm on the following dates: July 16th & 30th, August 13th &27th, September 10th &24th. Please RSVP to 412-224-4700.

By the Good Grief Center and Ursuline Support Services
Located at 2717 Murray Ave, Pittsburgh, PA 15217

Stroke Support Group

This stroke support group covers various topics with presentations from experts. The group meets on the following Wednesdays from 1:00pm-2:30pm: July 15th, Aug 19th, Sept 16th, Oct 21st, Nov 11th, Dec 9th. Please RSVP to or (412) 826-2784

By HealthSouth Harmarville
Located at 320 Guys Run Road—McLaughlin Education Center

Gone from My Sight: Caregiver Strain at the End of Life

A Certified Nurse Practitioner speaks on “the unique experience of caring for a loved one through the active phase of dying and the steps to recovering afterwards.” It includes helpful tips for caring for your loved one, thoughts on making tough decisions, and ways to stay mentally and physically healthy as a caregiver. This event is free and will be held at the Good Grief Center on Wednesday, August 12th from 10:00am-11:30am. Please RSVP by Aug 7th to 412-224-4700.

Part of the Women’s Speaker Series by Calvary Episcopal Church and Ursuline Support Services
Located at 2717 Murray Ave, Pittsburgh, PA 15217

Wednesday, July 8, 2015

Everything is Awful and I'm Not Okay

Questions to ask before giving up 

Adapted from writings by Eponis 

We've seen this many times: you are so busy taking care of your loved one, you forget about your own needs. If you are feeling particularly run down, take a moment to ask these simple questions and address your basic needs.

Are you hydrated? If not, have a glass of water.

Have you eaten in the past three hours? If not, get some food — something with protein, not just simple carbs. Perhaps some nuts or hummus?

Have you showered in the past day? If not, take a shower right now.

If daytime: are you dressed? If not, put on clean clothes that aren’t pajamas. Give yourself permission to wear something special, whether it’s a funny t-shirt or a pretty dress.

If nighttime: are you sleepy and fatigued but resisting going to sleep? Put on pajamas, make yourself cozy in bed with a teddy bear and the sound of falling rain, and close your eyes for fifteen minutes — no electronic screens allowed. If you’re still awake after that, you can get up again; no pressure.

Have you stretched your legs in the past day? If not, do so right now. If you're not up for a run or trip to the gym, just walk around the block, then keep walking as long as you please. If the weather’s awful, drive to a big box store (e.g. Target) and go on a brisk walk through the aisles you normally skip. Or even just go up and down all your stairs a few times.

Have you said something nice to someone in the past day? Do so, whether online or in person. Make it genuine; wait until you see something really wonderful about someone, and tell them about it.

Have you moved your body to music in the past day? If not, do so — pick any song with an upbeat tempo, whether it's an old Sinatra gem or a modern electronic dance number, and dance around the room. If you're not feeling inspired to dance, just jog around for the length of an upbeat song.

Have you hugged a living being in the past two days? If not, do so. Don’t be afraid to ask for hugs from friends or friends’ pets. Most of them will enjoy the cuddles too; you’re not imposing on them.

Do you feel ineffective? Pause right now and get something small completed, whether it’s responding to an e-mail, loading up the dishwasher, or brushing your hair. Good job!

Do you feel paralyzed by indecision? Give yourself ten minutes to sit back and figure out a game plan for the day. If a particular decision or problem is still being a roadblock, simply set it aside for now, and pick something else that seems doable. Right now, the important part is to break through that feeling of being stuck, even if it means doing something trivial.

Have you seen a therapist in the past few days? If not, hang on until your next therapy visit and talk through things then.

Have you been over-exerting yourself lately — physically, emotionally, socially, or intellectually? That can take a toll that lingers for days. Give yourself a break in that area, whether it’s physical rest, taking time alone, or relaxing with some silly entertainment.

Have you changed any of your medications in the past couple of weeks, including skipped doses or a change in generic prescription brand? That may be messing with your head. Give things a few days, then talk to your doctor if it doesn’t settle down.

Have you waited a week? Sometimes our perception of life is skewed, and we can’t even tell that we’re not thinking clearly, and there’s no obvious external cause. It happens. Keep yourself going for a full week, whatever it takes, and see if you still feel the same way then.

You’ve made it this far, and you will make it through. You are stronger than you think.

Wednesday, July 1, 2015

Our Daily Bread

Meals on Wheels and Food Resources

Contributed by: Deanna Leyh

You or your loved one may need help learning about and connecting to food and nutrition programs. Here is an overview of federal, state, and local food assistance programs and how to find them:

Meals on Wheels: Home-delivered, nutritious meals are available free of charge for individuals 60 years of age or older and their spouses who are determined to be in need by their local Area Agency on Aging (AAA). (If you’re in Allegheny County, contact your AAA here. If you’re elsewhere in Pennsylvania, find your AAA by clicking here.)

Supplemental Nutrition Assistance Program (SNAP/Food Stamps): SNAP helps low-income individuals and families buy the food they need to stay in good health. This is an income-based program, so to find out more about the program or to see if you qualify, call 800-692-7462 or 800-451-5886 (TDD) or visit the USDA page on this program.

Congregate Meals: Nutritious meals are available free of charge to individuals 60 years of age or older and their spouses five days a week or more in Senior Community Centers associated with your local Area Agency on Aging. Check with your AAA to find a Senior Community Center near you.

Commodity Supplemental Food Program (CSFP): This program provides food packages to give participants extra nutrients that they may lack in their diets. Food packages may include peanut butter, canned meats, and canned fruits and vegetables. For more information, call 800-468-2433 or visit this page.

The Emergency Food Assistance Program (TEFAP): TEFAP purchases surplus food and provides it to agencies that directly serve it to the public. To qualify for home use of food, recipients must meet certain income and household size criteria. To learn more about this program, call 800-468-2433 or see more details here.

Senior Farmers Market Nutrition Program (SFMNP): This program provides low-income older adults with four $5 checks, which allow them to purchase fresh, nutritious, locally grown fruits, vegetables, and herbs from participating farmers’ markets. To find out more about the Farmer's Market program, call your local Area Agency on Aging (AAA).

Getting Started with Help in the Home

Contributed by: Deanna Leyh

It can be difficult to know what kind of programs and services are available to get help at home for you or your loved one. Below is some information on programs that could help provide in-home help and types of care that you can receive in the home:

Pennsylvania Family Caregiver Support Program (FCSP): FCSP can help caregivers of individuals 60 years of age or older. This program can help reduce caregiver stress by offering emotional support, technical assistance, financial assistance, home modification grants, etc. Call your local Area Agency on Aging (AAA) to learn more.

Options Program: Options helps individuals 60 years of age or older to remain in their homes. A care manager can help see if they are eligible for certain services, such as adult day services, home support services, home modifications, transportation, etc. For more information, contact your local Area Agency on Aging.

Aging Waiver: The Aging Waiver Program provides in-home services to individuals 60 years of age or older who meet functional and financial requirements. Contact your local Area Agency on Aging (AAA) for more information or to schedule an assessment.

Home Health Care: Home health care offers a wide range of health care services that can be delivered in an individual’s home for an illness or injury. Some services they offer may include wound care, injections, intravenous therapy, patient and caregiver education, monitoring health status, etc.

Personal Care: Personal care is a service that offers individuals assistance with their personal care needs and activities of daily living, such as bathing, dressing, shaving, taking their medications, ambulation, etc. This service may be offered in the home or in a personal care facility.

Hospice Care: Hospice care is a pain and symptom management service intended for individuals with a life-limiting illness with a limited prognosis. Individuals on hospice care may receive services in their home or in a personal care, assisted living, or nursing facility, depending on the level of care they need.

Living Independence For the Elderly Program (LIFE): LIFE provides individuals ages 55 and older the comprehensive services of a nursing facility and the recreational and social services of a senior center, yet it allows individuals to remain at home. For information on LIFE, contact your local Area Agency on Aging.

Adult Day Services: These centers provide personal care, nursing services, social services, therapeutic activities, nutritional diets, and emergency care for older adults and adults with dementia for part of a 24-hour day as an alternative to institutionalization. To learn more about adult day services or centers in your area, call 717-214-6716.

Volunteer Caregiver Programs: Volunteer Caregiver Programs offer trained volunteers to come to the home to visit and be a companion to an individual or to assist the caregiver with household duties, such as meal preparation, grocery shopping, light yard work, light housekeeping, transportation to doctor appointments, etc. Contact your local Area Agency on Aging to learn about volunteer caregiver services in your area.

The First Call

The starting point for every caregiver

by Emily Anderson

Ever played the lottery and didn't win? This is your chance to cash in at last! Thirty-nine cents out of every lottery dollar goes to services for older adults and their caregivers in Pennsylvania through a department called the Area Agency on Aging (AAA).

Similar to the other triple- A you may have heard of, this AAA provides and coordinates a wide range of services that may be available to you — only this one is for older people, not cars. These services include support and coordination, advocacy, and very real resources. Some you may have heard of, such as Meals on Wheels, while others, like the Family Caregiver Support Program and Options, are less well known. Many of the programs have an income requirement — depending on the older person's income, assets, and level of need, some services may be free while others are discounted or at a fair market value.

If your concerns fall into one of these broad categories, it is likely that the AAA can help you figure it out:

-Getting help in the home
-Connecting to fun activities for seniors
-Paying for home help, supplies, or medications
-Seeking a break, or respite, from caregiving duties
-Providing nutritious meals for your loved one
-Understanding Medicare
-Finding affordable housing
-Reporting legal complaints or concerns about abuse and neglect of an older adult
-Even preparing your taxes!

There are, in fact, so many programs through the AAA that it would be overwhelming to list them all here. We'll address the most important programs for caregivers to know about in a later post, and then break them down for you one by one. Basically, if you want almost any kind of help with caring for an older person, the place to start is the AAA. Different states or counties might have different resources, but it's still a good place to start.

If this brief description was enough to convince you to contact the AAA (which you should do), call the SeniorLine at 412-350-5460 or toll-free at 1-800-344-4319. You can even email them! If you are one of our readers outside of Allegheny County, find your Pennsylvania county's AAA here, or search for your county anywhere in the US here.

You may think you won't qualify for any help because of the income guidelines, but it is still worth a call--the folks at the SeniorLine can help direct you to resources you may need or be able to use.

An Interactive Map of Support Groups

by Emily Anderson

Looking for a support group near you?

We've created an interactive map so you can find what you're looking for at a location convenient to you.

Once you click on the link below, it will take you to a Google Map that shows where current support groups are and contact information if it is available. On the left side of the map, you can choose what type of support groups you are interested in exploring. Categories include:

Caregiver Support
Mental Health

To view the interactive map, click here!

You can also view the Area Agency on Aging's list of support groups in the area by clicking here.

If you live outside of Allegheny County, there are several good places to start. Many non-profit organizations that focus on a single disease (like the Alzheimer's Association and the American Cancer Society) can help you find a support group and other resources. The Family Caregiver Alliance specifically focuses on resources and groups for family caregivers, and offers some online support groups. Finally, you can try getting started with this online self-help group search tool.

We do our best to keep this information up to date, but support groups are always changing. If you discover that one of the support groups listed here is no longer active, we'd appreciate it if you let us know. Likewise, if you know of one that is not listed here, feel free to share!

Am I a Caregiver?

By Emily Anderson

For many people, the word "caregiver" conjures the image of a professional, probably in scrubs, paid to provide help to an older person. When we tell people who are taking care of a parent, spouse, or friend that they are a "caregiver," we often get the response, "No, I'm just doing what a good child/spouse/friend does."

But what would happen if you weren't there? Would Grandma get her medications? Would Dad be able to get to his appointments? Would your neighbor shovel his own sidewalk in the winter? Would Auntie manage her own checkbook smoothly? Would Mom forget to turn the stove off?

In fact, 90% of the care older adults receive is provide by a friend or family member, not a paid professional. The help you provide to your loved one is invaluable to our society, and combined with the efforts of other people in similar situations, is worth about $450 billion per year in the US. We rely on the things you do out of the goodness of your heart or a sense of duty, whether they are as small as checking on someone or as large as helping someone bathe and dress every day. So we gave you a title: Caregivers!

You might think you are doing what any decent person would do, and for many people it is a source of great joy...but it is also a source of stress and sleepless nights and lots of running around. By recognizing yourself as a caregiver for someone you love, you acknowledge the important role you play in their life and gain access to many supportive resources for yourself and for your loved one.

Review these statistics and more at the Family Caregiver Alliance webpage.

A Caregiver's Bill of Rights

by Emily Anderson

As with all humans, there are probably moments when you aren't at your best. Sometimes you expect a lot from yourself, and maybe sometimes your loved one demands a lot too. Many caregivers we talk to feel like they must be "nuts," or the only person in the world who is struggling with the responsibilities of taking care of someone. You may expect yourself to be a heroic giver of time and energy, with saint-like patience and neverending tenderness. The truth is that caregiving is something that most of us are not prepared for, find difficult at some point, and need help with.

Written by Jo Horne, this "Bill of Rights" is our credo and may hold some surprises for you. It addresses both the personal rights of caregivers to be human and have human responses, but also the right to persevere in demanding quality care for our loved ones. Read over this "Bill of Rights" slowly, letting each item sink in. Reread it, hold it close, pull it out when you need a reminder that you are human and can expect human things for yourself.

The Caregiver Bill of Rights--By Jo Horne

I have the right:

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.