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Dear Santa … Top 10 Gift Ideas for Caregivers

There is no denying, caregiving is hard work. Between full or part-time jobs, doctor appointments, medical research, and the demands of everyday life, family caregivers are pulled in many directions, usually with little time left to rest, relax and refresh—time they so desperately need. And caregiving during the holiday season is especially difficult.

As you think about what to get the people on your holiday shopping list, consider giving something special to the caregivers in your life. Ask yourself, what would make a caregiver’s life easier, simpler, more fun?

Consider the following gift ideas:

  1. Sleep. Who can’t use extra sleep? Coordinate a morning free from responsibilities so the caregiver in your life can get an extra wink. The average person will spend 1/3 of his or her lifetime sleeping. Buy a caregiver luxury sheets and pillows. Help make their bed a haven for rest and relaxation.
  2. A listening ear. Caregiving can be isolating. Often, caregivers are so focused on getting through each day’s challenges and obstacles, their personal lives are neglected. Ironically, this is a time they need support more than ever. Set a regular date to visit. Bring coffee or special treats. Simply listen, without judging or offering advice (unless explicitly asked for!). Reconnecting can go a long way toward helping a caregiver rejuvenate.
  3. Encouragement. Each and every day caregivers navigate unchartered waters. This can be a time filled with doubt and insecurity. Recognize the amazing sacrifices caregivers make. Send funny cards or “thinking of you” notes with words of encouragement and support. Tell them how well they are doing. Family caregivers are unsung heroes.
  4. Help. How often have you said, “let me know what I can do” or “just call if you need anything.” And then, how often have you received a call asking for help? My guess is not often. Offer to help a caregiver in specific ways. For example, shovel the sidewalk, wash laundry, do household repairs, pick up groceries, run errands, or make or bring a meal. Read between the lines and hear what a caregiver is not saying.
  5. Gift certificates to a favorite restaurant, grocery store or gas station. Treat a caregiver to their favorite restaurant. Better yet, coordinate a night off so your loved one can enjoy an evening while indulging in a favorite meal. Or purchase gift cards to a local gas station or grocery store—these practical gifts will be much appreciated.
  6. Respite. Give caregivers the gift of time. Offer to visit Mom or Dad in place of the caregiver so he or she can take a nap, take a walk, go to a movie or catch up with friends. You might consider creating a “coupon book” with respite options.
  7. A spa appointment. Caregivers give so much of themselves, often at great expense to their own health and well-being. A massage, haircut or color, pedicure or manicure appointment will help them feel pampered and taken care of.
  8. E-reader, tablet or smart phone. Technology may make a caregiver’s life easier. Consider devices with dual purposes, for fun and function. These electronics may make coordinating schedules easier, or allow a caregiver to shop for groceries online, or simply do research while waiting at the doctor’s office.
  9. Movie rental subscription. Give caregivers the gift of immediate gratification via Netflix or other rental subscriptions. With movies delivered directly to your mailbox or streamed online, your favorite caregiver can enjoy a “night off” without leaving the house.
  10. Merry Maids or other house cleaning service. The hustle and bustle of the holidays can make everyday life a little more chaotic. Eliminate several tasks from a caregiver’s list by enlisting help from a cleaning service.

Keep in mind, gifts for caregivers don’t need to cost a lot of money. Often, what caregivers really want are intangible—the gift of time, empathy, understanding.

What other gift ideas do you have for caregivers? Leave a comment below and help us add to the list.

Happy Holidays!

There Is No “They”: Join us for an inspirational evening.

There Is No TheyOn Thursday, November 15, Hospice of the Red River Valley is pleased to host well-known national speaker, author and customer-care expert Larry Johnson as he presents, “There Is No ‘They.’” This presentation is free and open to the public. Please join us at the Holiday Inn of Fargo at 7 p.m.

According to Larry, “The title, ‘There Is No They,’ came from people asking about CJ’s status—wanting to know what ‘they’ said were her chances of waking up from the coma, or when ‘they’ thought she could have her stomach tube removed, or if ‘they’ thought she would ever talk or walk again. It was as if everyone interested thought there was some ‘they’ out there who was monitoring our experience to make sure everything was handled just right – and so did we. Unfortunately, we discovered that there simply was no ‘they.’ There was just us, and we had to find our own way. This was daunting because even at its best, health care is often disjointed and misdirected.”

This presentation, which is 20 percent informational and 80 percent inspirational, is ideal for professional caregivers and family caregivers. It will rekindle health care professionals’ and managers’ dedication to serve their patients and residents, and family caregivers to serve their loved ones. By the end of this presentation, the audience will better understand:

  1. How patients and their families talk to others about the care and services they receive at health care facilities. According to TARP, a well-known customer service survey company, happy customers are not as vocal as unhappy ones. The 5/11 rule tells us that on average, happy customers brag about you to five others while unhappy customers tell eleven others how awful you are.
  2. How managing perception creates the reality of care as much as the actual delivery does. Obviously, the quality of care delivered to patients is important. Unfortunately, patients and families have no way of judging that quality—they only know how they feel about it when it is happening—and that is what they talk about when they tell others about their experiences. Therefore, it is incumbent on all care providers to actively manage the perceptions their charges have of the care they receive.
  3. Why care and compassion are important. CJ and Larry will share the story of CJ’s accident and their four-year journey through the health care system.

Many times, the right hand doesn’t know what the left hand is doing. Additionally, institutionalization creates great losses for patients and their loved ones: loss of privacy, loss of independence, loss of control, and worst of all, loss of being perceived and respected as an adult human being.

Larry vividly remember the day he walked into CJ’s room at one of the nursing homes in which she stayed, and found her sitting in her wheelchair with her hair done in pigtails and a doll placed under her arm. He knew the staff member who did this meant well, but also realized she did not perceive CJ as the 57-year-old adult woman Larry knew and loved: the student who maintained a 4.0 GPA all through college; the brilliant mortgage banker who managed a team of 10 loan officers; the woman who achieved Life Master status as a tournament bridge player; an active contributor to various political causes; and the mother of a successful adult daughter.

Of course, these losses are often the unavoidable side effects of leaving critical health care in the hands of strangers. Most institutions do the best they can with the resources they have, but they are not family, and can never care for a loved one the way family would. They must follow procedures, policies, and processes to get the work done. This kind of care can’t help but be impersonal. Nor, with the numbers of people involved, can snafus and missteps always be avoided.

Please join us at “There Is No ‘They’” on Thursday, November 15 at 7 p.m. at the Holiday Inn. For more information about Larry and CJ’s story, please visit their website. For more information about Hospice of the Red River Valley, please visit our website or call us at (800) 237-4629.

What is respite? Do I need it?

Judy PetersonBy Judith Peterson

Respite care was established to provide care to the patient and the caregiver. It serves as a lifeline to the caregiver and provides a break from the emotionally and physically challenging role of providing end of life care to a loved one. It can also provide a much needed change in the day to day routine of the patient.

One day as I visited with a caregiver for a patient at end of life, she said to me, “I used to weigh 160 pounds and my blood pressure was 120. Now I weigh 120 pounds and my blood pressure is 160. She laughed, but in assessing her situation further, I discovered she was saying she was exhausted and her health was now failing because she had no time to take care of herself.

There are many reasons why respite care is not readily taken advantage of, as it becomes particularly challenging for the caregiver. There are feelings of guilt and abandonment associated with “taking a break.” There is also a sense of obligation and the need to “tough it out.” The caregiver may recognize the difficulty of caregiving, but not know where to turn for much needed help and a break.

Patients under the care of Hospice of the Red River Valley may use their Medicare benefit and, sometimes, private insurance for a respite stay every 30 days. The stay is typically five nights, but the patient and family can choose to use less nights if desired. This break may, in some cases, mean the difference between the patient remaining in his or her home or requiring Long Term Care placement. Respite allows the caregiver to make a trip out of town to visit friends or family. Or, arrange to go to an out of town wedding, baptism, have that minimally invasive surgery, or make that medical or dental visit they have been putting off.

The patient is cared for in a facility at one of various locations in our service area. The care offered is 24 hours per day and nursing staff is available at all times. The Hospice team will continue to visit the patient during the respite stay. The patient is free to participate in activities of his or her choosing while there, and may even be able to get a haircut or attend church. The patient then returns home after the respite stay.

What should a patient bring to a respite stay? (Always check with a nurse as each facility’s rules differ.)

  • All current medications
  • Adult incontinence products
  • Oxygen concentrator and tubing
  • Catheter supplies
  • Feeding tube supplies
  • Blood sugar monitor and test strips
  • Wound dressing supplies
  • Nebulizer medications and equipment
  • Personal clothing, robe, slippers
  • Tooth care items, razor and other personal hygiene products
  • Any other items that may make the respite stay more familiar and comfortable

The Hospice social worker will be able to answer questions and help facilitate admission for a respite stay. For more information on respite care or any other questions you may have please call our toll free number 800-237-4629.

Judith Peterson is a clinical coordinator at Hospice of the Red River Valley.

Tips for Pre-Planning a Funeral Service

Paulette Korsmo FrithBy Paulette Frith

Do you really feel good about …

… making important decisions when you are tired?
… making choices under time pressure?
… making important decisions without guidance?

These feelings are what you and your family might go through at the time of loss without preplanning. To avoid feeling unprepared and overwhelmed with the funeral decisions that must be made, we encourage you to make plans now. To start, follow this list:

  1. Secure vital statistics to make dates and history clear and easy to follow.
  2. Allocate resources in trusts or funeral insurance to cover future expenses.
  3. Collect documents and recording information to help answer the 50 or more questions that need to be answered in 48 hours.
  4. Suggest items you would like in order to make the service both personal and meaningful.
  5. Use Christmas card lists and other lists to identify who should be notified immediately, in 24 hours or within 30 days.

Your kindness and love of your family will be evident if you have taken the steps to walk them through the process. Remember, estate planning is incomplete until you have taken care of funeral planning.

I have yet to have a family say to me, “I wish my mom had not made so many funeral arrangements. I would have rather done this on my own.” When a family member has thoughtfully written suggestions down, it’s another sign of his or her love. Keep in mind, sometimes when plans are made, other circumstances might require modification to better suit the actual needs.

Life is like planting a garden. The seeds we plant today become the future we harvest. Therefore, a well thought-out funeral plan made today, will bring rich benefit someday in the future. Such a “gardening” plan provides order, good use of resources and allows for unexpected occurrences.

No matter your age, you do not know what tomorrow will bring, but you can help ease the worry about what is ahead, and secure the future, by preplanning today. Your family will know what is important to you and, thankfully, have your blueprint to follow.

Make the sensible, practical and considerate decision to record your instructions and preferences in a free “Thoughtful Decisions Guide,” available at Korsmo Funeral Service, or in hand-written notes. Over the years, you have made many decisions, such as wedding plans, home buying and more. There is no reason to leave decisions regarding your funeral arrangements to family and friends. While you can, write them down and give them one last gift of love. This allows your family to concentrate on comforting others, sharing wonderful memories and completing the plan so carefully thought-out. You did in death what you did in life … you took good care of your family.

Paulette grew up in Moorhead, Minn., and is the daughter of Paul and Florence Korsmo, of Korsmo Funeral Services. The passion for helping people during this difficult time was a part of her daily life. Now, along with her husband, Richard, they also own a farm near Devils Lake where they have raised five boys, both on the farm and in Fargo. Paulette works with funeral preplanning at Korsmo Funeral Service, as well as other firms in North Dakota. For more information regarding Korsmo Funeral Service, email kfs@moorheadcity.com, visit their website or call 218-233-1533.

Honoring the Memories of Our Loved Ones

Connie DeKreyBy Connie DeKrey, Bereavement Specialist

I just returned from a trip to Walmart to pick up graduation cards. On my way to the Hallmark kiosk, I passed by an aisle newly designated for plastic white crosses, silk floral arrangements and wire wreath holders. Memorial Day is fast approaching.

While the original intent of this holiday is to honor soldiers and veterans who have sacrificed and left this life, many people take it as a cue to also remember other loved ones who have died.

A visit to the cemetery to place a flag or to plant flowers is certainly a fitting way to remember a loved one. But using a little creative thinking, you may come up with other ways of honoring memories. Ideas you may consider might remind you of your loved one’s personality or passions, or perhaps something unique to the relationship you shared. While perhaps less traditional, these approaches can still be appropriate and beautiful. Some suggestions may include:

  • Start a remembrance garden. When my father (a gardener also) died, I dug a new flower bed in a shady spot. I began by planting “forget-me-nots,” and gradually added other things—perennials, driftwood, stones. Working the garden offered me time to remember and reflect. And the colors and textures change as the seasons pass—much like grief itself.
  • Plant a tree. This can serve as a lasting, living tribute. Over time, the growth of the tree will remind you of your own strength in having survived your loss.
  • Plan a project day. This can be a time spent with family dedicated to making a quilt, scrapbook, or even mosaics or stepping stones. Using belongings of your deceased loved one is especially effective in such projects.
  • Organize a reunion. Gather family or friends who share the loss. Designate a time for the sharing aloud of favorite memories or stories.
    Purchase a Memory Book. Wonderful examples are available at bookstores and online. Record your memories of a loved one using the prompts provided on each page. This can become a treasured keepsake or gift to another family member who will cherish the legacy of these memories.
  • Take a field trip. Visit one of your loved one’s favorite destinations. This could be anywhere that evokes a special memory—an art gallery, restaurant, or fishing spot.

This is just a sampling of ways in which the memories of our loved ones can be honored. In honoring our memories during our time of grief, we can help ourselves work toward healing, and carry forward a lasting legacy.

If you have questions or need support dealing with grief, visit our website or contact us at 1-800-237-4629.

 

Connie DeKrey joined Hospice of the Red River Valley in 1993, and for ten years worked in patient care as a medical social worker.  She has worked with the Journeys department as a bereavement specialist for the past eight years.  She particularly enjoys the opportunity to provide education to individuals and groups about living, dying and grief.

Who Will Speak for You? Advanced Health Care Planning

Life changes in an instant. We never know when we may be involved in a serious car accident, suffer a stroke or be admitted to the hospital unexpectedly. If you are unable to speak for yourself, do your family members and health care providers know how to proceed with your care? Do your loved ones know which treatment options you would pursue? Or, would they feel overwhelmed and unprepared to make difficult decisions?

We’ve written about the importance of advanced health care planning in previous blog posts (The Need for Advanced Care Planning, The Blue Folder: Making Final Wishes Known, and Make Your Wishes Known–Plan your future!), and shared the peace-of-mind advanced planning can provide when difficult decisions must be made. Advanced care planning is simply smart life planning—and can be one of the greatest gifts a person can ever give to loved ones.

Think about what is important to you and document your wishes in an advanced health care directive; if not for yourself, then for your loved ones. Be sure to name someone to speak for you when you can no longer speak for yourself, and talk to this person and your doctor about your wishes. You can download your state’s advance directive form, and begin the process today.

To learn more about advanced health care planning, we encourage you to attend our upcoming webinar Advanced Health Care Planning on May 14, presented by Susan Johnson-Drenth, JD, of JD Legal Planning. In this webinar, Susan will share the precautions and actions needed to ensure your wishes are carried out if you are unable to speak for yourself.

Conversations about living well and then dying well aren’t necessarily easy to have, but they are critical to the well-being of those we love. Finding a way to have this talk may bring great comfort and a special grace to those left behind. No one should be left wondering, did we do the right thing?

*NOTE: If you do not have access to an Internet connection, the Advanced Health Care Planning webinar will be broadcast in Hospice’s Fargo office, located at 1701 38th St. S., on May 14 at 7 p.m. If you would like to attend this broadcast at the Fargo office, please RSVP to Bonnie at (701) 356-1524 or bonnie.oelschlager@hrrv.org. For more information about this webinar or others, visit our website.

End-Stage Alzheimer’s Disease: Tips for Caregivers

by Alzheimer’s Association Minnesota-North Dakota Chapter

Alzheimer’s disease is a progressive, degenerative, neurological disease. Progressive, yes. It is much more than “being a little bit forgetful.” The disease slowly robs a person of their ability to perform long practiced skills, recall memories and the ability to care for him or herself. As people with Alzheimer’s disease live longer into the end stage of the disease, it is important for families and caregivers to recognize symptoms of the late stage and practice approaches for providing late stage care in their efforts to promote quality of life, preserve dignity and provide comfort.

The following is a list of progressed changes associated with the end stage of Alzheimer’s disease:

  • Has difficulty eating and swallowing
  • Needs assistance walking and eventually is unable to walk
  • Needs full-time help with personal care
  • Is vulnerable to infections, especially pneumonia
  • Loses the ability to communicate with words

The following approaches to providing late and end stage care are from the Alzheimer’s Association’s website:

Skin and Body Health
Relieve body pressure and improve circulation by changing the person’s position at least every two hours. Make the person comfortable and keep his or her body aligned. Use pillows to support arms and legs. Learn how to lift the person. Avoid injury by seeing a health care professional about the proper way to lift and turn a person with dementia.

Keep skin clean and dry. Since skin can tear or bruise easily, use gentle motions and avoid friction when cleaning. Wash with mild soap and blot dry. Check daily for rashes, sores or breakdowns. Use pillows or pads to protect bony areas such as elbows, heels and hips. If using moisturizer, apply gently over bony areas; do not massage the lotion into these areas.

Maintain range of motion in the joints. “Freezing” of the joints (limb contractures) can occur when a person is confined to a chair or bed. Sometimes, it is helpful to try range of motion exercises, such as carefully and slowly moving arms and legs two to three times a day while the person’s skin and muscles are warm (like right after bathing). Be aware that range of motion exercises are not for everyone. Consult a doctor about whether they might be beneficial.

Bowel and Bladder Function
A person with late-stage Alzheimer’s disease may experience incontinence for a number of reasons, including a urinary tract infection or fecal impaction. First, see the doctor to rule out any medical problems.

Set a toileting schedule. Keep a written record of when the person goes to the bathroom, and when and how much the person eats and drinks. This will help you track the person’s natural routine, and then you can plan a schedule. If the person is not able to get to the toilet, use a bedside commode. Limit liquids before bedtime. Limit liquids at least two hours before bedtime, but be sure to provide adequate fluids throughout the day. Use incontinence products. Adult briefs and bed pads at night can serve as a backup to the daytime toileting schedule.

Monitor bowel movements. It is not necessary for the person to have a bowel movement every day, but if there are three consecutive days without a bowel movement, he or she may be constipated. In such instances, it may help to add natural laxatives to the diet, such as prunes or fiber-rich foods (bran or whole-grain bread).

Foods and Fluids
Everyone needs to eat nutritious foods and drink enough fluids to be healthy. But a person with late-stage Alzheimer’s may have trouble swallowing, which may cause food or drink to get into the airway and lungs. This can lead to pneumonia. To help the person eat and drink safely, make a quiet and calm eating environment. Serve meals away from TV and other distractions. If the person can eat at the table, use a simple place setting.

Allow plenty of time for eating. Allow at least one hour for meals. Don’t rush the person or force him or her to eat. Smaller meals or snacks throughout the day may work better than three bigger meals.

Make sure the person is in a comfortable, upright position. To aid digestion, keep the person upright for 30 minutes after eating. Adapt foods. Consult with the doctor to find foods that can be chewed and swallowed easily and safely.

Encourage self-feeding. Sometimes a person needs cues to get started. Begin by putting food on a spoon, gently putting his or her hand on the spoon, and guiding it to the person’s mouth. Assist the person with feeding, if needed. Alternate small bites with fluids. Make sure it’s all swallowed before continuing. You may need to remind the person to chew or swallow.

Encourage fluids. The person may not always realize that he or she is thirsty. If the person has trouble swallowing water, try fruit juice, gelatin, sherbet or soup. Make liquids easier to swallow. Swallowing problems put a person with dementia at higher risk for choking. Make liquids thicker by adding cornstarch, unflavored gelatin or food thickeners (available at pharmacy and health care supply stores) to water, juice, milk, broth and soup.

Know what to do if the person chokes. Difficulty swallowing can lead to coughing and choking. Be prepared for an emergency, and learn the Heimlich maneuver.

Monitor weight. While weight loss during the end of life is to be expected, it also may be a sign of inadequate nutrition, another illness or medication side effects. See a doctor to have weight loss evaluated.

Infections and Pneumonia
The inability to move around in late-stage Alzheimer’s disease can make a person more vulnerable to infections. To help prevent infections, keep the teeth and mouth clean. Good oral hygiene reduces the risk of bacteria in the mouth that can lead to pneumonia. Brush the person’s teeth after each meal. If the person wears dentures, remove them and clean them every night. Also, use a soft toothbrush or moistened gauze pad to clean the gums, tongue and other soft mouth tissues.

Treat cuts and scrapes immediately. Clean cuts with warm soapy water and apply an antibiotic ointment. If the cut is deep, seek professional medical help.

Protect against flu and pneumonia. The flu (influenza) can lead to pneumonia (infection in the lungs). It’s vital for the person as well as caregivers to get flu vaccines every year to help reduce the risk. A vaccine to guard against pneumococcal pneumonia is also available. (Usually, only one dose is needed, but in certain circumstances, a second dose may be given five or more years after the first dose.)

Pain and Illness
In late-stage Alzheimer’s, the person has more difficulty communicating pain. If you suspect pain or illness, see a doctor as soon as possible to find the cause. In some cases, pain medication may be prescribed.

To recognize pain and illness look for physical signs of pain, such as pale skin tone, flushed skin tone, dry, pale gums, mouth sores, vomiting, feverish skin, or swelling of any part of the body can indicate illness.

Pay attention to nonverbal signs. Gestures, spoken sounds and facial expressions (wincing, for example) may signal pain or discomfort. Watch for changes in behavior. Anxiety, agitation, shouting and sleeping problems can all be signs of pain.

Editor’s Note: At Hospice of the Red River Valley, we’ve been privileged to partner with the Alzheimer’s Association on a number of educational programs. We have asked the Alzheimer’s Association to share this information with our readers who may be facing the challenges of caring for a loved one with Alzheimer’s.

Join Us! End-of-Life Care Informational Series

Confidence in Care Webinar SeriesWhen a family hears the words “hospice care” for the first time, it can be scary. It’s impossible to fully prepare yourself when faced with making end-of-life care decisions, especially when it involves someone you love.

We know how challenging it can be to determine if someone is appropriate for hospice care–especially if your loved one has Alzheimer’s or other forms of dementia. We can help walk you through the process of identifying who meets the medical guidelines for hospice care, and help you understand what’s included in care for this type of condition. Likely, you have many other questions about advanced health care planning, including advanced directives, and how hospice care is paid for.

We are pleased to share this information with you in our upcoming Confidence in Care webinar series. We are partnering with the Alzheimer’s Association of Minnesota/North Dakota and JD Legal Planning to bring you information you need to make informed end-of-life care decisions. We hope you’ll join us for this informational webinar series:

Memory Loss and End-of-Life Care
May 7 from 7-8 p.m.
Learn the difference between Alzheimer’s and other forms of dementia, the unique challenges of caregiving and the benefits of hospice care for those individuals in the advanced stages.

Advanced Health Care Planning
May 14 from 7-8 p.m.
Learn the precautions and actions needed to ensure that your wishes are carried out if you are unable to speak for yourself.

The Medicare Hospice Benefit
May 21 from 7-8 p.m.
Learn about cost coverage for end-of-life care you are entitled to through Medicare.

To register, visit our website. For more information, call 1-800-237-4629.

If you do not have access to an Internet connection, the webinars will be broadcast in Hospice’s Fargo office, located at 1701 38th St. S., at the dates and times listed above. If you would like to attend a broadcast of a webinar at the Fargo office, please RSVP to Bonnie at (701) 356-1524 or bonnie.oelschlager@hrrv.org one week prior to the webinar.

* Note: This series is intended for the public; certificates of attendance for health care professionals will not be provided. These webinars are not eligible for CEUs.

Signs that Death is Near: A Caregiver’s Guide

By Deb Kluck

Dying is a natural part of life, but few of us are prepared to care for someone in his or her final days. Family members and friends play important roles during a loved one’s final months, weeks and days. This article will explain some of the changes that naturally occur during this time and share tips on what you can do as a caregiver.

Our bodies are miraculous. Some of the changes that take place at the end of life are meant to make an individual comfortable during the dying process. Because these changes seem unnatural and counterintuitive, caregivers often wonder if things are going as they should. Some signs that death is near include:

Withdrawal
It is common for a person to withdraw from the normal activities and interests he or she once enjoyed. For example, if your loved one always read the newspaper in the morning, he or she may not be interested in community/outside news of any kind. As a caregiver, know this is normal. Do not force your loved one to do activities, even if he or she once enjoyed them.

Increased Sleep
A person may sleep more and speak less at the end of life. When this occurs, he or she is getting ready to let go from this life and preparing for the next journey.

If your loved one is unresponsive and hard to rouse, remember, he or she can probably still hear you. Be present and talk about positive topics; this can be comforting at this stage. Always tell the person who you are, “Hi, it’s Jane. I’m going to sit with you for awhile.” Use your normal tone of voice. Do not say anything in front of the person that you would not usually say to him or her.

Changes in Appetite
When someone is nearing death, he or she may not be interested in food, or may not even be able to eat or drink. It is normal for an individual to lose his or her ability to swallow, so it is difficult, and sometimes unnecessary, to take in nourishment. This is particularly difficult for caregivers, because eating is such a big part of our culture. We eat for nutrition, but we also eat when we socialize.

At end of life, the body is slowing down and no longer able to digest food properly. When your loved one does not eat or drink, this does not mean he or she is hungry or dying from lack of food. As a caregiver, do not force food or drink. At this time, eating and drinking can feel physically uncomfortable.

Confusion, Disorientation and Restlessness
People at the end of life may be confused about the time, where they are, and may have difficulty recognizing others around them. They may say they see things or people that we cannot see. Those at the end of life may also talk about travel and make comments like, “I am going to go on an airplane today,” or “I want to get home.” Acknowledge their experiences without arguing, even if it does not make sense to you. Listen carefully, your loved ones may be telling you they are preparing for death or saying goodbye.

During this time, it may be helpful to use light touch, soft music or inspirational readings. Don’t be afraid to tell a memorable story or what you learned from them. It may also be a time to say I am sorry or mention forgiveness. You may also want to tell your loved one to let go and provide reassurance that you will be alright.

As a caregiver, remember to care for yourself. If you do not take care of you, the stress of caregiving has the potential to cause burnout. As hard as it may be, accept offers of support. Know that it is OK to cry and express emotions. Try to treasure this time. Your presence with your loved one at the end of his or her life is a time you will always remember and never regret.

Deb Kluck is the manager of volunteer services at Hospice of the Red River Valley. What she enjoys most about her position is meeting so many wonderful, caring people.

Hospice Social Workers: Providing Support to Patients and Families

In honor of Social Worker Month in March, this post celebrates and recognizes the role of a hospice social worker. Our social workers focus on the individual needs of each patient and his or her family. The work they do varies in each setting, with each patient and within each family. They also have great knowledge and expertise in caregiving.

Hospice social worker Tracey Wenthin shares, “When the unthinkable happens and people are thrust into caregiving roles, they can’t help but be life changing experiences. Caregiving can bring out the best and worst in people. But, after the initial shock and disbelief settle, I’ve found most caregivers find the strength within to get through physical and emotional challenges that come with caring for a loved one, and do so with grace and humor. We’re here to provide support for caregivers during what can be a very stressful time.”

What do hospice social workers do?
Hospice of the Red River Valley social workers are trained to assist patients and their caregivers during the end of life journey, and help in countless tangible and intangible ways. Here’s a sampling of how they provide support:

  • Assist patients in exploring non-medical ways of relieving pain and anxiety.
  • Assist patients in developing an individualized plan of care.
  • Educate a patient’s family so they may feel confident in their roles as caregivers.
  • Provide patients and their caregivers with advanced directives.
  • Allow patients and their families to discuss their concerns and fears openly and without judgment.
  • Identify community services that fit each individual situation, and assist with setting up services, such as meals on wheels, lifeline, and others.
  • Assist patients and caregivers in meeting their goals.
  • Help develop a plan if the patient is unable to be alone.
  • Keep family updated on a patient’s current status.
  • Provide caregivers with reading materials to support their role, including information to help them feel prepared for the time of death.
  • Guide patients in a transition from one living environment to another, or assist with facility placement.
  • Help patients and caregivers obtain financial assistance or resources.
  • Watch for and assist with safety concerns in a patient’s home.
  • Help fill gaps between what a patient needs and what is available to him or her.
  • Advocate for patients’ needs.
  • Help patients and caregivers understand the role of hospice and the hospice team.
  • Assist caregivers in finding support to maximize their strengths.
  • Help caregivers develop a plan for the time of death.
  • Provide age appropriate education and interventions to minor children.
  • Provide activities for children to allow them to express their feelings.
  • Offer patients and caregivers all of the information related to their care.

If you have questions about the role of a hospice social worker, or about hospice care, visit our website or call (800)237-4629.