Wednesday, April 27, 2016

The CARE Act Passed!

So what does that mean for you?

"I've done dozens of doctors' appointments, managed medications and monitored diets, but this one is new," said the weary woman across from me, "This time there are tubes! I'm supposed to flush the tubes, and the whole idea just makes me shiver."

Margie had just brought her husband home from the hospital after surgery and he was sleeping on the couch across the room. She eyed the tubes sticking out of his chest where chemotherapy drugs slowly pumped into his body. Her task was to flush that tube with saline when the medication finished.

"I finally looked it up on YouTube," she laughs, "I think I deserve an honorary nursing degree when this is all over."

Margie is one of about 21 million caregivers who performs medical tasks for a loved one each day. In addition to monitoring special equipment, caregivers often manage medications and treatments, provide wound care, and prepare special diets. For most people, these medical tasks are something new that they have no training in, and can feel overwhelming.

This month, Pennsylvania became one of 23 states in the US that is trying to help caregivers tackle those medical tasks with more confidence by passing the Caregiver Advise, Record, Enable (CARE) Act. Designed by the AARP, the CARE Act requires hospitals to keep caregivers in the loop three different ways:
  • Hospitals must record the name of any family caregiver when a person is admitted to the hospital.
  • They must notify that family caregiver if the person is being discharged or moved to another facility.
  •  Hospitals must provide a thorough explanation and live instruction for any medical tasks that the caregiver will have to do at home.
Most hospitals have already moved to providing more instruction and support to caregivers.  Many caregivers, though, don't realize that the hospital has a responsibility to provide that education and keep them informed. This is especially true for people who worry about being a nuisance if they ask to many questions, or don't want to seem rude by asking for more time with the doctor. Remember, it is always your right to demand a better quality of care for the people you love!

Want to learn more about the CARE Act, or find out if it is passed in your state? Check out the AARP website!

Wednesday, April 20, 2016

Research Roundup--Participate!

by Emily Anderson

We talk about a lot of research on this blog, including research on stress and ideas for how to manage it. Now you have a chance to participate in one of those research studies yourself!

The Carnegie Mellon University Healthy Aging study is looking for people to test out an 8-week stress and relaxation program. And this program is better than free--they'll compensate you for your time!

To participate you must be:

  • 65-93 years old
  • generally in good mental and physical health
  • new to practicing mind-body techniques (like yoga and meditation)
  • available for about the next 6 months to complete follow-up tasks

Want to advance our scientific understanding of stress and get paid to manage your stress? Call (412) 268–8761 or email to see if you can join!

Wednesday, April 13, 2016

National Healthcare Decisions Day

by Emily Anderson

"It Always Seems Too Early, Until It's Too Late"

This Saturday, April 16, is National Healthcare Decisions Day! The goal of this day is to raise awareness about what choices you and your loved one have in healthcare, especially towards the end of life, and to encourage people to write that information down in an advance directive. An advance directive (which includes both power-of-attorney papers and a living will) tells you and your loved one's healthcare providers what kinds of treatment they want or don't want, and what their values are for quality of life and comfort. These wishes are activated if they are no longer able to communicate their own desires, such as if your loved one was in a coma or had late stage dementia.

So this weekend, take a deep breath...and consider asking your family to talk about death over dinner.

The National Healthcare Decisions Day website has plenty of resources to help you get started. If you or your loved one already know what you want, the resources page has links to download and fill out a free advance directive document that will be valid in your state. LifeCare Advance Directives and CaringInfo, among others, provide these documents for free. If you're not sure what choices you want to make for your end of life care, there are also tools that will guide you through thinking about and discussing the options with your family. Making Your Wishes Known and The Conversation Project are two examples of this.

If none of that suits you, they have plenty of other resources--even a card game you can play to help open up the discussion with your loved one!

Most people have some idea of what kinds of treatment they want, but have never talked about it or written it down. We often hear people say things like, "I don't want a bunch of tubes stuck in me," or, "I was raised to believe you fight to the very last." Those are statements about the kind of care you want in the case of a significant medical event, but if you want those wishes to come true, you have to talk about it with your loved ones and write it down in an advance directive.

A lot of people are nervous about bringing up end-of-life care to their loved ones. For some people there is a sense of it being a "jinx," that if you talk about death it is more likely to happen. For other people, they worry that their loved one will think they've "given up" or have no hope. Even if it's neither of those reasons, it's darn sad to think about your own death or the death of someone you love.

There are a lot of good reasons you should talk about end-of-life care with your loved ones though. First, the person you're taking care of is probably already thinking about what they want in the end of life. When I was new to this field and started learning about advance directives, I approached my grandmother at a family gathering and asked her if she had living will. A hush fell over the room as my aunts and uncles looked around at each other, mortified. My grandma, though, just chuckled, squeezed my arm, and said, "Oh honey, I sure do. I've buried your grandpa, all my sisters, and some friends. I know what I want." For many people, especially people who are quite sick, it can be a relief to stop tiptoeing around the elephant of end-of-life in the room.

Second, though it's a difficult conversation to have now, knowing what your loved one wants can be a relief later on. If you talk about end-of-life care and what they want or don't want, then when a crisis hits, you won't have to guess what your loved one would choose. Finally, having documentation gives you the legal right to make sure that healthcare providers follow your loved one's wishes.

Remember that when you are discussing end-of-life care, you don't have to do it all at once. You can take breaks, come back to it, and fill out paperwork at a separate time.

In a caregiving relationship, there are at least two people who can start thinking about advanced care planning: you (the caregiver) and whoever you are taking care of. Yes, that's right, just because you're in decent health now doesn't mean you should skip this conversation! As the theme of this year's Healthcare Decisions Day states, "It always seems too early, until it's too late."

Wednesday, April 6, 2016

Housing and Home Help Checklists

by Emily Anderson

We all have some idea of how we want to live as we age. For example, I plan on changing my name to "Blanche," buying a house in Florida with my three best friends, and living out my days a la Golden Girls. Life may have other ideas though, and whether you are dreaming for yourself or helping a loved one make decisions about where they will live, it's good to plan ahead.

Most people want to stay at home as they age, and many resources exist to make that possible. However, people often fail to make a backup plan in case there is an emergency or staying at home doesn't work out for some reason. If you (the caregiver) got sick, for example, and no one else was available to step into your role, what would your loved one do? When emergencies arise or living independently gets too difficult, families often find themselves scrambling to make decisions about living arrangements

Interestingly, the investment company Legg Mason has a very comprehensive set of free checklists to help people make informed decisions about housing as they age. Their checklists include:

  • an extremely detailed home safety check,
  • questions for adult day care providers,
  • interview ideas for hiring caregivers,
  • hiring a home care agency,
  • and a guide to choosing an independent living community, an assisted living facility, or nursing facility

Check out their page here--scroll all the way to the bottom to access these excellent lists! Especially look over their worksheet called "Assessing Your Housing Needs Discussion Guide," and consider striking up a conversation with your loved one about your plans for the future. Making a plan now will allow you to make decisions together and choose options you like, rather than being forced into a convenient option when an emergency pops up.