(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.

Caregiver Burnout: Signs to Watch for in Yourself and Others

By Wendy Tabor-Buth

“The capacity to care is the thing that gives life its deepest significance and meaning.” –  Pablo Casals, World renowned cellist

As a caregiver, you are one of many courageous people who provide care for a loved one. You provide emotional and physical support, and may also deal with medical and financial decisions. Coping with the strains and stresses of caregiving can be challenging. You may be so focused on giving care to the one you love that you sacrifice your own well-being in the process. It is important to pay attention to your needs too (emotional, physical, social and spiritual), otherwise, symptoms of caregiver burnout and fatigue may quickly arise. Be aware of the following signs that may indicate caregiver burnout:

  • Feelings of depression
  • Ongoing fatigue
  • Decreased interest in work
  • Decreased work productivity
  • Withdrawal from social contacts/self-isolation
  • Increased use of alcohol or drugs
  • Increasing fear of death
  • Change in eating habits (too much/too little)
  • Feelings of helplessness

The dilemma a caregiver faces is how to take care of a loved one while maintaining care of oneself. The following are suggestions and strategies for self care to help prevent caregiver burnout:

  • Ask for help and support when needed and when offered. Share caregiving efforts with family and friends.
  • Take breaks, both long and short. Relax whenever possible.
  • Stay involved in hobbies or interest (knitting, Bible study, reading, etc.).
  • Be informed. Read/research as much as you can about your loved one’s illness. Understanding the disease and its progression will help you feel less alienated from the unknown.
  • Exercise daily and maintain a healthy diet.
  • Take care of your own health. Schedule regular check-ups with your physician.
  • Express your feelings. Allow for the expression of your feelings—in private or with a supportive friend. An essential part of taking care of yourself is allowing yourself to grieve in anticipation of your loss.
  • Take advantage of people support. Friends, family, support groups and Hospice staff are important sources of support to caregivers.

The reality is, providing care for a loved one who is dying can be filled with stress and anxiety that can lead to burnout if self care strategies are not practiced. At the same time, the caregiving experience can present beautiful and meaningful moments. Facing the challenges and emotional pain of a loved one’s life-limiting illness will have dramatic effects on your life. However, this difficult time is also uniquely rewarding and offers the very precious opportunity to spend time together—time rich with meaning, gratitude, compassion and love.

Wendy Tabor-Buth, LSW, is a bereavement specialist at Hospice of the Red River Valley.

Choosing the Right Setting for Your Loved One

Choosing an alternative to a current living environment can be a sensitive subject. It can be especially challenging when your loved one does not want to make a change. Relocating to a less independent setting is an individual decision and requires a great deal of thought and preparation.

When is an independent setting no longer appropriate?

  • When safety becomes an issue. For example, if this person falls or is at risk of falling; or smokes while on oxygen and falls asleep doing so; or forgets to turn off the stove; or takes medications incorrectly or not at all.
  • Your loved one does not seem to be taking care of his or herself. For example, an always “spotless” home is far from clean, hygiene issues surface, or he or she does not appear to be eating or is unable to fix a meal.
  • Your loved one is afraid of or uncomfortable being alone.
  • When the current caregiver is unable to care for your loved one and other alternatives are not possible, such as additional in-home family member help or private hire care.
  • A health care professional has recommended, based on an assessment, that this person no longer live alone.

If you’re an outsider to the situation, you may think it’s as easy as saying, “You aren’t safe living alone.” However, when you have a close, personal relationship with that person, it is very easy to avoid saying those words, even if you know they need to be said. It may be helpful to consider and acknowledge your loved one:

  • Have they lived in their home for many years?
  • Do they feel things are changing too quickly?
  • Has there been a recent “incident” forcing a move?
  • Are they unrealistic about their own status?
  • Consider their long-standing personality traits; what reaction can you expect?
  • Are there signs of cognitive deficits?
  • Do you worry about their safety?
  • Do they disagree with moving?

If you answer these questions honestly and try to empathize, you will be more apt to understand their reactions. By simply listening to all of their concerns and validating their feelings, you take a step in the right direction. Remember, what you both feel is normal. When dealing with anger, it can be helpful to have the answer straight in your head about what you fear. Are you more afraid of your loved one being mad at you or your loved one not being able to safely live alone?

Rely on the advice of professionals.

If recommendations have been made, make sure your loved one hears them. Often, we think we are protecting them by asking the tough questions when they aren’t present, but they need to hear the information. Arrange family conferences to discuss current status and recommendations so everyone hears the same information.

Above all, be honest and tell them how you feel.

Saying something is so much better than nothing at all. For example, “I’m concerned about you living alone. I don’t want anything to happen to you. I know you may be mad at me and that’s OK. I know it is really the situation you are mad at. But, we need to make this decision and I’d like to do it together.” Often, dealing with the anger at the moment is easier than living with worry each day that something might happen.

Where do I start?

Families who are considering a move to a nursing home or assisted living facility should tour each facility. In doing so, you and your loved one get a feel for several things:

  • Location. (Is it easy for family and friends to visit or for the other spouse to drive if they too are elderly or have limited physical abilities?)
  • Therapy and activities. (Are the activities suited to the need of the individual?)
  • Aesthetic qualities. (Does it feel like a good fit?)
  • Cost for each level of care. (When your loved one needs additional help, are the beginning rates altered? Be aware of increases to avoid surprises in the future.)

Other Considerations

  • Meet with facility staff and talk openly about your hopes for your loved one.
  • Prepare your questions ahead of time, so you can be sure you get all the answers you need.
  • Ask for the facility staff’s assessment to describe what level of care would be most beneficial for your loved one. Knowing this information upfront can help, because, at times, the line between assisted living and skilled care can be gray and making one move may be easier than facing another move in a short period of time.

Choosing a new setting for your loved one is not easy. Don’t wait to have this discussion until a time of crisis forces a decision, possibly with fewer options. By weighing your options now and communicating, you may alleviate much of the stress that comes with making this difficult decision.