Friday Five: Caregiving and Dementia

The Friday Five is our weekly roundup of links to smart articles and helpful resources across the Web. This week, we focus on the family caregiver and dementia.

1. "The Gift of Caregiving" was a lovely contribution to the Huffington Post this week from a former family caregiver. Robin Amos Kahn shared her experience caring for her ill mother, and the lessons she took away from her years of caregiving. And, we were so pleased to read about the support she received from hospice. Hospice care should support the patient and the family and/or loved ones.

2. This was a great article from Homewatch Caregivers about "Handling Symptoms: Focus." We appreciated the way it read like a what to expect from dementia for caregivers, and offered some helpful suggestions from an expert with the national Alzheimer's Association.

3. This article, "Aware that I'm unaware" in the Wausau Herald was more uplifting than sad. Even as her mind fails her, Julie Krueger continues to battle along, adapting to life with dementia. And, we were so pleased to read about the way she took control of her situation by making her end of life arrangements.

4. Personal blogs can be such honest, heartrending accounts of an individual's struggles, triumphs, and memories. "3 Years and 13 Dumpsters: Cleaning House After Dementia" is written by an adult daughter caring for her father with dementia. She's been blogging since 2009, and I'm sure many family caregivers out there will relate to Joy Walker's story.

5. And finally, a joint resource from the Alzheimer's Association and Lotsa Helping Hands. This "Care Team Calendar" is a great way to manage care needs among multiple caregivers. For primary family caregivers, don't be afraid to take others up on their offers of help. Input your needs and let your friends sign up for specific tasks. It's okay to lean on the shoulders of others every now and then.

The Wednesday Image: View from the Top

View from Mt. Lemmon, Tucson, Ariz.

Image taken by Brianne Pekar

Hospice care teaches us not only how to approach death with dignity, but also how to appreciate life. The Wednesday Image is a weekly series of images representing what we love and appreciate most about life in Tucson.

Hospice Care Team: The Role of a Hospice Social Worker

In previous entries we’ve reviewed the hospice philosophy and its holistic care concept. That holistic philosophy works because of the interdisciplinary team, with each team member offering their knowledge, support, and education to the patient and family.

Through a series of upcoming posts, we’ll review the role of the hospice social worker. Each patient is assigned a social worker. The hospice social worker is available to help patients and their loved ones or caregivers navigate the practical and emotional issues that arise during the end of life journey.

Throughout our lives, most of us likely won’t have any interaction with a social worker. In fact, many individuals might have a negative connotation when they hear the term social worker. They sometimes assume these individuals are only called in when someone has done something wrong.

In fact, the hospice social worker is available to assist the patient and family on any number of practical or emotional issues. They can help patients fill out advance directives, help families determine funeral arrangements, offer education about caregiving, connect patients and families to community resources, as well as assess the emotional needs of patients or caregivers. Bookmark our blog, or subscribe via e-mail, to continue following this series about the responsibilities and roles of hospice social workers. Our social workers will be offering their personal experiences and discussing in greater detail how they can help individuals during the end of life journey.

Dying is not an easy task, but hospice workers strive to help patients and loved ones through the process. If you or your loved one is nearing the end of life, and believe you could use the support of hospice care, contact your local hospice today. The National Hospice and Palliative Care Organization can help you find a provider in your area.

By Carrie Bui, Communications Specialist

Friday Five: Things We Read This Week

The Friday Five is our weekly roundup of links to smart articles and helpful resources across the Web.

1. After reading "In the end, making hard decisions about dying brings personal, financial benefits" and watching the included video, I thought what a great example this couple is, and what a great example Gundersen Lutheran in La Crosse, Wis. is for the rest of our country. It's a place where most people have discussed their end of life wishes and filled out an advance directive. Planning for care earlier rather than later, and having open, honest discussions with family members gives everyone greater peace of mind and results in less unwanted medical interventions.

2. Grief is a natural experience after the death of a loved one, and adults need to remember that grief is an emotion that is experienced by children, too. This "Letting children share in grief" article from the New York Times explores how beliefs about helping children understand death are changing. Discussing a family member's dying with a child, and allowing him/her to participate in the grieving rituals, lets them know their feelings are normal.

3. We enjoyed reading "The hospice option" and one doctor's commitment to to discovering whether or not patients were better off continuing medical treatment or choosing hospice care. And, we weren't surprised when we read that Dr. David Cowall found that the median length of survival was longer for those in hospice care.

4. We stumbled across this great pdf download of a checklist for family caregivers from the National Family Caregivers Association. Family caregivers often take over financial responsibilities. This checklist, "Documents you'll need to manage your care recipients finances" can help you sort through the paperwork and duties. Use it to prepare yourself if you think you'll need to one day manage a loved one's finances, or if you already are struggling to manage someone else's finances.

5. Do you have questions about hospice care? Are you trying to decide if hospice is the right thing for you or your loved one? Learn more about hospice services by reading our Frequently Asked Questions page.

The Wednesday Image: Mountain Views

View from Goret Road, Tucson, AZ

Image taken by Carrie Bui

 

Hospice care teaches us not only how to approach death with dignity, but also how to appreciate life. The Wednesday Image is a weekly series of images representing what we love and appreciate most about life in Tucson.

Hospice Care Team: The Role of Your Chaplain

When a person and their loved ones decide that hospice care is the best path to take, the choice is not only medical, but also emotional and sometimes spiritual. The hospice care team seeks to offer care, support, guidance, and reflection in all of these areas. As a chaplain with Casa de la Luz Hospice, I try to create space for meaningful conversations among families where love and faith can be affirmed, forgiveness offered, and truth shared.

There is not one right way to face death; each person must find their own path. For some folks, a religion or faith tradition has brought them meaning and purpose during their lifetime. This faith can bring comfort and can be a vehicle to enter into a deeper spiritual relationship with the divine. A chaplain seeks to help people rely upon the ground of being that will anchor them as they let go of the life they have known and the relationships that define us.

For other people, religion has not been important in their expressions of faith, yet they understand themselves to be deeply spiritual beings. Often, visits from a hospice chaplain in these situations can help people reflect upon their beliefs, and articulate their connections to life that is greater than what we know as individuals. While each path we follow is deeply personal, it does not have to be travelled alone. Often, allowing others to accompany us on this journey can bring wholeness and healing in ways not imagined.

I have been blessed to visit patients and their families even when they define themselves as atheist and not spiritual. As a hospice chaplain, I do not have an agenda for my patients.

When I am invited to visit a hospice patient, the most important gift I can give her or him is that of listening. I listen deeply to each person and seek to help him or her speak of those people, moments, relationships, values, and work that have given their lives meaning and purpose. It is also vital to name the lessons that have been learned and the legacy that will remain with those we have touched, even after we die.

As we draw nearer to end of life, our bodies and energy diminish. Yet, at the same time our emotional and spiritual life can broaden and become richer. The hospice chaplain is a person who can help us open to these possibilities and prepare to let go of the life we have known and loved.

By David Fife, Chaplain

Friday Five: Aging and Caregiving

1. "Caring for elderly parents" is another great article reflecting on our nation of family caregivers. It highlights the challenges family caregivers face, though it doesn't offer many solutions to caregivers. This is more of an educational read, to understand what family caregivers are up against, as so many of them provide care to children and aging parents, many of whom are living longer than expected. A few resources are listed at the end of the article, but we'd encourage family caregivers to use those as a starting point.

2. We came across an interesting column entitled "How do you want to die?" in a recent issue of The Week. There's an emphasis in this article about the cost of care at end of life, which may not be the kindest way to look at this issue, but it is still a part of the overall debate in this country. In the end, though, we agree with all three of Bill Frist's points about what to include in the end of life care conversation Tell us if you agree.

3. The website Medicare Made Clear has a great collection of online videos, including this one about planning for the end of life. Take five minutes to watch this video, and then start thinking about what you want the end of your life to look like. Who do you want providing care for you, or making decisions for you if you are unable to make your own healthcare decisions?

4. This topic has been addressed in other articles, and the New York Times does a good job discussing it here. The article, "Childless and aging? Time to designate a caregiver," paints a picture of what it looks like for adults who are single and aging, and lacking the family to help support them as they grow older. We encourage single adults to take the time to reach out to members of their community, to meet your neighbors, to outline your wishes as you grow older and share them with someone you trust.

5. Support groups can be an opportunity for individuals to connect with others who are in similar situations. Caregivers may find it helpful to share problems with other caregivers, and family caregivers may be able to learn from each other how to handle caregiving issues. For family caregivers in the Pima County area, the Pima Council on Aging has a caregiver support group for each side of town. They are free to attend, and open to people caring for individuals aged 60 or older.

The Wednesday Image: Bloom Night

Night blooming flower

Image taken by Agnes Poore

 

Hospice care not only teaches us how to approach death with dignity, but also how to appreciate life. The Wednesday Image is a weekly series of images representing what we love and appreciate most about life in Tucson.

How to Talk to Your Doctor

Individuals are often intimidated by visits to the doctor. The doctor seems rushed, the office is cold, health issues can be embarrassing, the information and the medical jargon is confusing. Sound like a familiar situation?

Make your next doctor’s visit easier with some of these tips and tools for talking to the doctor.

Before the appointment, write down any questions you have about your current health status, any treatments you’re currently undergoing, and any prescriptions you’re already taking. Jot these down on a notepad, or on an electronic document that you can access via your tablet. Prioritize your questions so that the most important ones can be answered.

The doctor will probably ask you if there have been any changes since your last appointment. Write down a list of any health changes so you’ll have the answers ready, and you won’t forget anything.

If the doctor suggests any new treatments or medications, have a list of questions ready to address his/her suggestions. Potential questions include:

·         What is the goal of this treatment or medication? How will it benefit me?

·         How and when will I know if it is working?

·         Is this treatment covered under my insurance? Are there any additional co-pays?

·         What are the side effects? How long will they last, and how can they be managed?

·         Are there any other options? Why would you recommend this one over other options?

Come armed with all of your current medications, either with the bottles or a list. Make sure to include any over-the-counter vitamins, supplements, or other medications you might be taking.

Bring a note-taking device. A notepad and pen or an electronic tablet will help you keep track of the doctor’s responses, as well as anything new he might prescribe. I especially like the added convenience electronic note taking offers if information needs to be shared with other family members who couldn’t be present. The document can be transferred via a free FTP like Dropbox or e-mailed directly from the device.

Bring a note-taking backup. See if a friend or family member can accompany you on the appointment as an extra set of ears and to take notes. If this isn’t an option, bring a small digital recorder to record your conversation with the doctor. Both of these can help you reference any information you might have missed.

As you and the doctor are talking, don’t be afraid to repeat something back to him to make sure you understand the consequences, results, or instructions. Start off with, “So for this medication, I need to…” or “If I understand correctly, this treatment will help me…”

When it comes to your health, or that of a loved one, don’t be afraid to ask questions or ask for more clarification.

Additional resources about talking with your doctor

"Talking with Your Doctor" from Living with Serious Illness

"Talking with Your Doctor: A Guide for Older People" from the National Institute on Aging

"Tips for Talking to Your Doctor" from FamilyDoctor.org

By Carrie Bui, Communications Specialist

Friday Five: The Caregiving Journey

1. We're always looking at articles that offer helpful advice for family caregivers. "Tips to help new - and veteran - family caregivers" offers six helpful reminders. It's especially important to note that veteran caregivers may find these tips useful, too. Those who have been providing care to a loved one for a years especially need the reminders that you're not alone or to take a break.

2. Each individual has a different story as to how they came to have "the conversation" with their loved ones. "The Conversation Project: It's Time to Start Talking about End of Life" is a well-written story of how clinical psychologist Joseph Nowinski, Ph.d. had the conversation with his parents. Articles such as these help illustrate the many different ways families choose to have the conversation and organize end-of-life arrangements. They also serve as useful jumping-off points for families who may not know where to start the discussion.

3. Though studies show the majority of family caregivers are women, there is a growing number of male family caregivers. "The New Face of Alzheimer's Caregivers: Men" states that the number of men caring for a loved one with Alzheimer's or dementia has gone from 19 percent to 40 percent in 15 years. Learn a little more about this new face in caregiving from this Sci-Tech Today article.

4. We regularly encourage seeking support from others in similar situations on this blog. This definitely applies to family caregivers. Sometimes it helps to share your story, and sometimes it helps to hear other people's stories of their caregiving journeys. Caregiver Support Blog is just one of those millions of individual stories out there. Read about Michelle's struggles as she provided care to Clara.

5. The Alzheimer's Association website is a wealth of resources for family caregivers of a loved one with Alzheimer's disease or dementia. Daily routines can be helpful to both caregiver and the caree; use this "creating a daily plan" article to help you when planning out your day and daily activities. If you have the time, consider exploring the Alzheimer's Association website further for more suggestions and tips regarding daily care needs.

The Wednesday Image: Flowers

Image taken by Crystal Cannon

 

Hospice care teaches us not only how to approach death with dignity, but also how to appreciate life. The Wednesday Image is a weekly series of images representing what we love and appreciate most about life in Tucson.