Social Workers Offer Advice to Caregivers

Social workers who specialize in healthcare are an important advocate for patients and families. They are instrumental in explaining health care resources and policies, assist in finding additional support and offer guidance for how to cope with various issues that may arise during an illness.

"We go to a patient's home with a plan for the visit, but often times that plan goes out the door when we walk in," said Zoe Burroughs, LMSW, Arbor Hospice Social Worker. "We never know what the family will need that day. Something may have just happened that makes the patient or caregiver upset. It is our job to meet the patient and family wherever they are and offer support on whatever they need. Sometimes it is education, other times it is validation and sometimes caregivers need extra help - they are burned out."

Arbor Hospice's Social Workers offer the following advice to caregivers:

1. Keep track of your feelings. Advanced illness and the end of life can be frightening and overwhelming for both the patient and family. Many people find it helpful to keep a journal or record their emotions through art. This provides an outlet for your pain, grief or frustrations.
2. Share your feelings with the people close to you. Remember that you are not alone. Millions of people care for a loved one and they have experienced similar feelings. Sharing your emotions does not make you a burden to someone else. You are entitled to every emotion you have. Do not be afraid to share them with the people you trust.
3. Join a support group. Talking with someone who has had a similar experience can be very beneficial. Many disease-specific associations, such as the Alzheimer's Association, offer caregiver support groups. You many also find support groups through a local Area on Aging Association, Adult Well-Being Association or Veteran's Affairs. If you cannot leave your home for a support group because your loved one depends on you, consider joining a virtual support group. There are many websites where you can chat with others who are going through the same thing.
4. If you are working and caring for a loved one, talk to your employer. Caregivers should let their managers know that they are caring for a loved one and discuss their needs related to caregiving. Make it known that you are committed to your job and want to find ways to remain productive. There may be options, such as different work hours or the ability to work from home.
5. Know your rights. Consult human resources about what you are entitled to under the law. The Family Medical Leave Act (FMLA) requires large employers to provide up to 12 weeks of unpaid time off with job protection when workers must care for a sick or injured family member.
6. Develop ritual caregiving techniques. Caregiving tasks, such as helping your loved one in and out of bed, should be ritualized. Establishing rituals that you or your loved one can follow will ensure the best possible care. It will also help your loved one know what to expect and how something is going to happen. Visit the resource section on the Arbor Hospice website for how-to caregiving videos and tip sheets.
7. Create an atmosphere comfortable for your loved one. Often times, the person with a serious illness has a bed in the family's living room, or a room on the first floor near a bathroom. While this may be ideal for helping someone move about, it can be very distressing for your loved one. Keep in mind that your loved one may not sleep well if there is noise around him or her, if the television runs continuously or if someone is talking. Make sure your loved one is in a place where he or she can keep his or her dignity and have some quiet.
8. Understand the difference between listening and talking. Take the time to really listen to your loved one. What does he or she want? If you are doing all the talking, you are not uncovering his or her real needs or desires.
9. Organize help. Determine which of your loved one's needs you can or want to handle on your own, and which needs you could use help with. Ask family members, friends, neighbors, co-workers, professional caregivers or members of your church for help. Even if you find help from one or two people, they can make a difference. This will give you an opportunity to focus on yourself.
10. Forgive yourself for any bad days and give yourself a fresh start the next day. Understand that you are not going to be able to do everything, or solve every problem. Remember everything you do right, and learn from your mistakes. Caregiving is hard. Any support you are giving is making a difference.

What other questions, concerns or challenges do you have about providing care?

This blog post was written by Jaclyn Klein, Arbor Hospice Communications Specialist with input from Zoe Burroughs, LMSW, Arbor Hospice Social Worker. You may contact Jaclyn or Zoe by commenting below or emailing jklein@arborhospice.org.

The Importance of Advance Care Planning

Do you know what healthcare treatments you would and would not want if you could not speak for yourself? Do other people know what your wishes are? Would you know what your loved one would want?

In our work with patients at end-of-life, we have learned that this time period can be meaningful and rewarding. Too often, however, it is a frantic time for families who are asked to make decisions that they are uncomfortable making because they do not have this experience. Only 30 percent of Americans have an advance directive, even though they can be created relatively easily, for free, and without a lawyer. Advance directives give you the ability to document the types of healthcare you do and do not want, and to name an "agent" to speak for you if you cannot speak for yourself.

Communication and preparation are very importance at the end-of-life. Part of our mission at Arbor Hospice is to educate the community about advance directives and end-of-life issues. Our goal is to help spouses, partners, doctors and patients and parents and children to initiate important conversations and document wishes.

Advance care planning is especially important for those of the "sandwich generation." Those who care for their aging parents while supporting their own children are often forced to make decisions not knowing what their loved ones really wanted, because it was never brought up.

It's never too early to talk to your family, friends and doctor about how you want to be treated if you become seriously ill. National Healthcare Decisions Day, a day dedicated to encouraging people to talk about their end of life wishes celebrated every year on April 16, is approaching. Use this time to think about your own wishes and begin conversations with family and friends. It's the most important gift you can give your loved ones.

This blog post was written by Jaclyn Klein, Arbor Hospice Communications Specialist. You may contact Jaclyn by commenting below or emailing her at jklein@arborhospice.org.

Communicating With A Friend Who Is Dying

Talking to people with a terminal diagnosis can be uncomfortable. It is natural to come up blank on what to say at such an emotional time. People hesitate to reach out because they do not want to upset friends and/or family members, but you are really needed now, more than ever. So take a soft approach, listen, and let your friend take the lead on the conversation.

What do you say to people who know their time is limited? Arbor Hospice Spiritual Care Coordinators offer these suggestions:

• Be with them physically. Presence is often more important than finding the right words to say. As death approaches, your friend may not want to speak. Holding their hand, reading or just being present is often reassuring.
• Talk about the past and things you two did together. Go down memory lane, revisiting a particular joyful or humorous experience, or ask for some stories from the past, as a way to remember. Even though fate cannot be changed, you can positively impact the days that are remaining. Make the moments count. Even if a response is unlikely, the friend will be encouraged by a good memory.
• Thank your friend for his/her companionship. Assure your friend of your continued support and care for his/her family.
• Offer words of comfort such as:
• I care about you deeply. I am so sorry. Is there anything I can do for you?
• You are a dear friend and I will never forget you.
• Your friendship has meant so much to me. I would not be the person I am today without you.
• I want you to know that I love you and that you will always be with me.
• Thank you for being such an amazing friend. You have always helped me when I needed a hand. I will never forget that.

How do you know when to go see your friend? Sooner rather than later is the best policy. However, if the family asks you not to visit, respect their wishes.

Remember that you can start a conversation with the person who is dying. Make them feel good about themselves, bring peace between the two of you and reassure them that they have a good soul.

Tell me about your experiences with a loved one facing the end of life. What did you say? What did you do?

This blog post was written by Jaclyn Klein, Arbor Hospice Communications Specialist. You may contact Jaclyn by commenting below or emailing her at jklein@arborhospice.org.

It's The Little Things

I have the privilege of interviewing patients and families willing to share their stories. I am continuously blown away by the stories patients and families share - things you don't find in a patient's chart or hear from the Arbor Hospice clinical team.

It's not the big things that stand out. It's the small things that make a world of difference.

They talk about how nice it is to be treated with compassion and with dignity. They compare a sterile hospital room to the home-like decor in The Residence of Arbor Hospice or to their own home.

More often than not, families express gratitude for the little things Arbor Hospice clinicians do - not always about pain and symptom management.

I've heard a husband express how grateful he was that his wife's chin stubble was trimmed like his wife trimmed it herself before she became too weak.

A mother recognizes the Arbor Hospice nurse for taking time to understand her non-communicative daughter's expressions and movements.

A son raves about how staff at The Residence of Arbor Hospice gave his father's favorite food - ice cream, in his final few weeks.

A wife talks about the comfort of knowing she can call at any time - day or night - and receive support.

It's these small things that make an impact on patients and families at the end of life - things we don't often think about.

I think this is true in all aspects of life - not just at the end of life.

I've recently created a "Gratitude List." Each night, I add things from the day that I am grateful for. While my list includes large things - my family, friends, health and safety - there are a lot of small things too. A smile, simple call, email or text just to say hello, note or someone saying "thank you" makes my list.

Knowing how much I value these things, I try to return the favor each day. I challenge you to go out of your way to do something extra - it doesn't have to be big. It's the simple things that matter.

Think about it - what has someone done for you that made such a big impact?

This blog post was written by Jaclyn Klein, Arbor Hospice Communications Specialists. You may contact her by commenting below or emailing her at jklein@arborhospice.org.

 

Tips for the Sandwich Generation

The Sandwich Generation is an increasing number of people experiencing the emotional and physical struggle of caring for an aging parent while still raising children.

According to the National Alliance for Caregiving and MetLife, workers who care for elderly relatives cost U.S. businesses over $34 billion annually in absenteeism. In addition, there are more than 25.5 million Americans who try to balance work, raising a young child and caring for an adult over the age of 50 at the same time.

These simple tips can help caregivers balance life and avoid burnout:

• Put your health first. Caring for an aging loved one can cause stress and anxiety. As much as you would like to put everything on hold, your loved one cannot be take care of if you are not well.
• Recognize the signs of caregiver burnout. Look for a change in appetite, irregular sleeping patterns or withdrawal from family and friends. Take steps to protect your own health. Don't be afraid to ask for help and learn coping techniques such as journaling or taking a relaxing walk.
• Educate yourself on your loved one's illness. Talk to your loved one's doctor and ask for online resources and brochures. The more educated you are, the better care you will be able to provide for your loved one.
• Seek support. Many nonprofit organizations offer support groups to help you get through this difficult time. You should remember that you don't have to go through this alone and that there are other people who may be in a situation similar to yours. Support groups can offer an outlet to vent frustrations and find alternative ways of dealing with stress.
• Make communication a priority. Hold regular family meetings to keep everyone informed on your loved one's condition. It's also a good idea to maintain open communication with your loved one. Start talking about the future now and make important decisions with your loved one about a living will and advanced directives.
• Learn your company's caregiving policies. Talk to your supervisor about your situation as many employers are sympathetic. Ask if your company offers basic elder care benefits and inquire about the Family Medical Leave Act. Eligible employees are granted up to 12 months to take care of an immediate family member with a serious condition. Discuss alternative arrangement such as working from home or different hours of work.

This blog entry was written by Jaclyn Klein, Arbor Hospice Communications Specialist. You may contact her by commenting below or emailing jklein@arborhospice.org.

Irrational Fears of Death and Dying

Fear. It's the biggest thing holding someone back from their goals, dreams and desires. For some it's a fear of being disliked, of not being good enough or being too much. When it comes to the end of life, it could be a fear of initiating an important conversation.

On the first few interviews I went on with Arbor Hospice patients and families, I hesitated when it came time to ask the patient or family member about the illness and how it felt to be introduced to Arbor Hospice.

Our culture is uneducated and uncomfortable when it comes to death, and I was falling into the trap. I was afraid to ask almost as if I would be cursing myself or those around me by talking about death and dying, or invoke painful memories.

I was quite naive in those interviews with patients and families. They had clearly already begun thinking about the end of life and had chosen comfort care, maximizing the days that were left. They knew why I was there and were willing to share their story.

I had nothing to fear. Time and again, I've heard from patients and families how having important advance care planning conversations led them to Arbor Hospice or ensured their wishes were followed. I've heard patients tell me how wonderful it was to be able to focus on what's most important to them.

Many aren't so lucky. Research shows that most people want to die at home, without pain surrounded by loved ones. Nearly 60 percent do not have this experience. Only 30 percent of Americans have an advance directive, and I am not one of them. I justify this by saying I'm only 24, but I know that's not an excuse.

To be honest, I'm not even sure my parents have a written advance directive. I haven't taken the time to find out or initiate a conversation. I'm afraid they'll think I'm pushing them out the door.

But I refuse to let fear stand in my way. I know my fear is probably irrational - just like many of my fears. I want to honor my parents' wishes when their end of life comes, hopefully many years from now. And I hope they'll be proud and grateful that I asked them "what's most important" and how they want to be cared for at the end of life.

I'm facing my fears - one at a time. I encourage you to do the same.

This blog entry was written by Jaclyn Klein, Communications Specialist with Arbor Hospice. You may contact Jaclyn by commenting below or emailing her at jklein@arborhospice.org.

Telling Stories

I have an interesting job that requires a lot of explanation. When I say I work for "Arbor Hospice," I often hear, "Are you a nurse?" No, I say. "What about a social worker?" No again. I don't bother giving my title; I get a lot of blank stares when I say "Communications Specialist." Saying I'm part of the marketing team doesn't sound right either.

When I talk about my job, I say that I tell stories. I have many responsibilities and do many things, but telling stories is one of them - and it so happens that it's one of my favorites.

I have the privilege of interviewing patients and/or family members about their lives and the care they receive from Arbor Hospice. I have spoken to men, women, children, mothers, fathers, sons, daughters, neighbors, friends and caregivers. I have heard about a man's World War II experience, a woman's heartbreak when her husband of 58 years was diagnosed with cancer, a daughter who forced her mother to move in with her, the smiles our music therapist and therapy dog bring, a parent's worst fear confirmed and the solace found in grief support, among many others. Each person has an amazing story, perspective and outlook that I can only hope to have when I or a loved one is facing the end of life.

It's not always easy. And, if I'm being honest, I cried the whole way home after the first interview I had with a patient and family (the ride home was well over an hour). When my boss asked the next day, "How'd it go," I think I said "great" and left out the part about my tears.

So why do I do it (besides the fact that it's part of my job)? I've learned so much from my interactions with these individuals and it's such an incredible honor to hear their stories. They chose to let us enter their memories at such a sacred time, and they're willing to share their hardships, pain, wisdom and joy. How magical is that?

And, it's pushed me to see outside my narrow view. I've begun thinking about my own story - and what I hope that will be. It's still being written, but at least I know what's on the first page. For me, it's my family. I wouldn't be the person I am without them, and I wouldn't continue striving for excellence.

What about you - how do you want your story to begin?

This blog post was written by Jaclyn Klein, Communications Specialist at Arbor Hospice. You can reach Jaclyn by commenting below or emailing her at jklein@arborhospice.org.