Wednesday, September 28, 2016

Register to Vote by October 11th!

by Emily Anderson

The last day to register to vote is October 11, 2016. To vote in Pennsylvania, you must be a U.S. citizen, be age eighteen or older, and have lived in Pennsylvania for at least thirty days. There are two ways to register to vote:

  1.  Visit the web page to register to vote online. You do not need a driver's license or state ID card to register online, but you will need one to vote.
  2.  Fill out a paper form and turn it it. You can download the form here or ask for a form at a PennDOT location, a library, or other community center near you. You can also use these forms to change your address. 

Remember to check where your polling place will be on November 8th too! For more questions or help registering to vote, visit the politically neutral web page at VotesPA.

Wednesday, September 21, 2016

Celebrate World Alzheimer's Day Today

by Emily Anderson

About once a minute, a person in the US is diagnosed with some type of dementia such as Alzheimer's disease. Over the next few decades, we expect to see the number of people living with Alzheimer's triple. It's the sixth leading cause of death, more than breast cancer and prostate cancer combined. Family caregivers spend an average of five years and tens of thousands of dollars helping their loved ones continue to live with the disease, yet we are still far from finding an effective treatment or cure.

This year, the Alzheimer's Association is celebrating World Alzheimer's Month by giving $7 million towards new research for the most promising treatments. Alzheimer's Disease International is asking people to get involved by sharing their stories. If you are a person who uses social media like Facebook or Twitter, try sharing your story, some of the statistics above, or a picture of your loved one with the hashtag #RememberMe or #WAM2016.

To share longer experiences and read thoughts from other caregivers, try visiting the Family Caregiver Alliance. If you want to hit the ground and get outside, sign up for a Walk to End Alzheimer's near you. Most of these walks are held in October (Pittsburgh's is coming up on Oct. 15). You can even email us to share your story.

Sharing your story or participating in an event helps raise awareness of the impact this disease has on individuals and our community. Often people feel alone and lost while trying to help a loved one, but facing dementia is actually a common experience for many families and there are many resources out there.

For my part, here's a picture of my amazing grandmother, who just recently entered the ranks of people living with the early stages of dementia.

Take this day to celebrate yourself too, with a pat on the back, a moment of quiet, or setting aside some time to reach out for support.  Remember that our loved ones with Alzheimer's or other dementias couldn't make it without the support of family caregivers--which means you!

Wednesday, September 14, 2016

When and How to Call Hospice

by Emily Anderson

"I'm so glad you convinced me to call hospice," Mary sighed, collapsing into the couch, "They are taking care of everything. I actually have time--and energy--to sit with my mom and just hold her hand."

Mary had been caring for her mother for five years, but had been reluctant to call hospice even once her mother was bed-bound. She wasn't sure when the right time was, and worried that her mother would think she was "giving up." Like most people who make the call to hospice though, Mary was glad she did.

Hospice is a special service that aims to make the transition from life to death as easy as possible for patients and their families. It provides medical care that is focused on maintaining comfort and quality of life, provides medical equipment, in-home aides, respite for the family, counseling, and a variety of other supports. Though many people associate hospice with a facility, it is actually a service that can be delivered anywhere, including your own home.

Many people are nervous about discussing hospice care with their loved one or their family. Death is an uncomfortable subject to discuss, but avoiding hospice can deprive you and your loved one of many comforts in the end of life.

When to call

In general, hospice is for people with any illness that limits their life to about six months or fewer, who want to be as comfortable as possible. Sometimes a doctor will tell you if a diagnosis means your loved one has a short time to live, or if you have run out of treatments that could offer a cure. Often, however, doctors don't bring up hospice because they are uncomfortable talking about it or assume you want to keep trying new treatments.

There are some signs you can look for that are indicators that it is time to call hospice. Your loved one might be ready for hospice if you notice:

  • Increased pain, nausea, or other discomforts
  • Frequent trips to the ER
  • More medical complications, like infections
  • Difficulty "bouncing back" after setbacks
  • Needing more help with basic daily activities, like walking, bathing, or eating
  • Decreased appetite
  • Sleeping a lot or being confused
  • Talking about being tired, wanting to be at home, or wanting to stop treatment

For people who are caring for someone with dementia, there are a couple of extra requirements. In addition to advanced dementia, your loved one must be unable to care for themselves and have a complication like a recent infection, bed sores, or significant weight loss.

If you're still not sure whether your loved would be eligible for hospice, try taking this short quiz, and then start a discussion with them about what kind of care they would like as they approach the end of life. 

How to call

Any person can make a referral to hospice, including you. You can call even if you're not sure the time is right, and they will help you figure it out. If you have a good relationship with your doctor, you may want to talk to them first, but be aware that some doctors don't understand hospice or discourage people from pursuing it. If you're not sure what hospice to call, try searching for hospices in your area.

Other benefits

Many hospices offer special supports like spiritual services, massage or art therapy, and support after your loved one passes away. In addition, hospice is fully covered under Medicare, Medicaid, and most private insurances. If you think your loved one could benefit from hospice, it is worth exploring the option--it could change your loved one's whole experience of the end of life.

Check out the National Hospice and Palliative Care Organization for more information and tips on choosing a hospice provider.

Wednesday, September 7, 2016

Interview: Family Caregivers Need Care Too

by Emily Anderson

Recently we had a chance to talk to mmLearn's blog about the issues facing family caregivers. If you are new to this blog, new to caregiving, or looking for a refresher, check out our discussion below!


Emily Anderson is a Care Coach with Familylinks, where she works with caregivers of older adults to find practical solutions and stress management strategies for day-to-day life. We talked with Emily about the challenges facing today's caregivers - and learned how anyone can help ease their burden.

Tell us a little about Familylinks. What services do you offer?

Familylinks is a non-profit social service agency in the Pittsburgh area of Pennsylvania. We work with families on many issues that occur across the lifespan.

For older adults, Familylinks operates a popular senior center called Vintage. It's one of Allegheny county's providers of Options Care Management services for older adults, and it offers a unique support program for caregivers of older adults called the Caregivers First Initiative. The Caregivers First Initiative is a free, evidence-based method of one-on-one coaching that helps caregivers use community resources, problem-solve common challenges, and learn effective ways of dealing with stress.

What are some of the challenges of aging in today's society that you think aren't very well-known by the general public?

When people picture an older family member getting sick and needing a lot of help, they often picture that person moving to a nursing facility. While that is the case for some people, 90% of the care that older adults receive is provided at home by family members, not by professionals. The work that family members do is worth over $450 billion a year; but unfortunately, family caregivers are getting scarce. Because of the aging baby boomer group, there will only be half as many people available to care for older adults in the next few decades. The result is that we will be relying more and more on family caregivers who will be feeling increasingly overwhelmed and stressed.

When you communicate with people who care for elderly individuals, what are the most common issues that these caregivers are struggling with?

Caregivers of older adults struggle with both practical and emotional issues. For people who are not health or mental health professionals, it can be very overwhelming to be faced with tasks like sorting medications, organizing doctors' appointments, and providing hands-on care. On top of that, caregiving can be a very lonely task where people give up their social life, their hobbies, their privacy, and their free time to care for their loved one. While most people I talk to would never give it up, it's still tiring and frustrating.

The stress of helping another person puts caregivers at an increased risk for chronic health issues, burnout, depression, and even death. Addressing both the practical and emotional issues helps caregivers feel more in control and more balanced.

How common is it for elderly individuals to be suffering from multiple conditions or problems? And how are caregivers affected in these instances?

It is common for older people to be dealing with multiple issues, and it is also common for caregivers to be dealing with problems of their own. As we age, our problems tend to occur in a chain - first your knees go, then because you can't walk you gain weight, the weight causes diabetes, and before you know it you have a wound that won't heal. Caregivers are along for that ride and have more and more to manage as their loved one declines. On top of that, since caregivers are focusing on their loved one, they often forget to take care of themselves, skipping doctors' appointments, meals, and exercise in order to get done what they need to get done.

Based on the latest research, what are some of the approaches, techniques, or technologies that are producing successful outcomes when it comes to senior citizens and the issues they face?

There are many advances for helping seniors, as well as many new technologies that also make being a caregiver easier. Digital tools like shared calendars or remote video monitoring make it easier to coordinate tasks between family members or to check on a person's safety without intruding.

Most of all, though, caregivers long for someone to give them advice and to listen to their experiences. At the Caregivers First Initiative, the methods we use are shown to decrease depression and the sense of burden while helping people feel more confident as caregivers. Personalized support programs like the Caregivers First Initiative allow us to provide advice, support, and coaching that is tailored to each individual person.

Obviously, it's important for caregivers of elderly people to be caring and patient. But what's the one skill that you think each one of these caregivers must possess?

It's important for caregivers to learn to be honest, yet gentle with themselves. How much can you handle? How are you really doing with everything? What kind of help do you need? Each caregiver has different abilities and needs. Looking honestly at where you need support is the best way to keep yourself in one piece - and your loved one in good shape.

For people who are relatives, friends, or work colleagues of caregivers for elderly patients, how can they help or support those caregivers in their day-to-day efforts?

If you want to help a caregiver in your life, offer specific help and follow up on it. For example, instead of saying, "Let me know if you need some help," ask the caregiver, "Do you need someone to mow your lawn? Do you need someone to stay with your mom for a while this week?" Many caregivers are sensitive to the fact that other people are busy and don't want to weigh down other people with their problems. Many people also think people are offering to help out of politeness. If you truly want to help, offer again!

Want to learn more about being a caregiver and ways that you can keep yourself healthy? Try looking at our "Where to Start" page. If you're in Allegheny County, PA, you can even contact us for a meeting. The Family Caregiver Alliance also has many resources, including online support groups for caregivers.