Create memories, enjoyment

Caring for a seriously ill loved one is difficult at any time of year. But the holidays can compound the stress as caregivers, especially those who mark the season in grand fashion, seek balance between the consuming responsibilities of meeting their loved ones needs and creating a memorable celebration.

Whether it’s continuing with longtime traditions or introducing new ones, the keys to a meaningful holiday while facing end-of-life are to:

* avoid overwhelming your loved one by scaling activities to the realities of the situation;

* think outside-the-box if elaborate annual traditions are not feasible; and

* remember that there is no right or wrong approach.

“The most important point is to remember that the stress of caregiving may leave little energy for the grand celebrations families have held in the past- so it is perfectly acceptable to scale down or simplify to keep it even more memorable,” advises Karen Monts, practice manager, counseling services for Hospice of Michigan.

Monts suggests considering such outside-the-box plans as:

* Opting for a family trip, if your loved one can travel;

* Donating as a family to your loved one’s favorite cause;

* Dining together at a favorite restaurant;

* Focusing on faith traditions, attending a religious program together; or

* Creating keepsakes and reliving memories such as taking a family picture, creating a memory stone, or recalling funny stories.

Monts also suggests that if having all the decorative bells and whistles are an absolute must and your loved one has been “the ‘king or queen’ of decorating, consider recruiting the help of friends and extended family, or hiring professional decorators.”

Thinking outside-the-box can also include hosting your celebration or special event on a day other than the actual holiday to ensure your loved one can fully participate.

“It’s important that family members continue to create memories with their loved ones,” said Monts. “About 10 years ago, a patient’s daughter decided to move up her wedding and held her ceremony in our facility between Thanksgiving and Christmas so that she could share the moment with her father. We helped plan the ceremony, and one of our spiritual care coordinators officiated. That was the gift she gave him that holiday. He relaxed after the ceremony, happy because he believed she was safe and taken care of. He died the following week. Unique experiences like that resonate with families and allow the memories of a final holiday season with a loved one to be cherished rather than ignored.”

Monts adds, “Many patients and families are incredibly hopeful, even at the end-of-life. They expect to celebrate. Even if holiday plans don’t materialize, families shouldn’t feel guilty. There is hope in the planning.”

In her 26 years in hospice care, Monts has learned many hospice patients want to “remember good relationships and the positive impact they’ve had on others.” The holidays offer a perfect opportunity for friends and family to share “how a loved one wants to be remembered and discuss that their life had—and still has—meaning.”

Monts suggests families build lasting memories by interviewing each other. “There are profound understandings that come out of that process,” she said.

There are many online resources to help get the conversation started. Story Corps (https://storycorps.org/) is a site Smith references to spark talks with patients, exploring such questions as:

What is your proudest moment?

How do you want to be remembered?

What is your most spiritual moment?

What are your thoughts about death and the after-life?

Do you have any regrets or last wishes?

What advice do you have for me, my children, or even children to come in our family?

Starting these conversations is typically the most difficult step in talking about sensitive and intimate feelings and viewpoints. But once the ice is broken, these exchanges can produce tremendous rewards.

In addition to planning ahead, Monts believes the only other absolutes in celebrating the holidays when caring for a seriously ill loved one are to “remember the only ‘should’ is doing what is best for you and your family during this time and to simply enjoy the holidays with your loved one, not matter how you choose to celebrate.”

For more information, call 888-247-5701 or visit www.hom.org.

September is National Pain Awareness Month. Palliative care treatment can help alleviate symptoms for those dealing with physical, emotional and spiritual discomfort.

from Hospice of Michigan

Contrary to what many may believe, pain does not have to be part of a loved one’s natural aging process or chronic illness, and no one should experience pain at the end of life. September’s designation as National Pain Awareness Month is an opportunity for caregivers to better understand, and help alleviate, their loved one’s physical, emotional and spiritual discomfort.

Palliative care offers comfort and improved quality of life to patients and families by identifying and managing pain and other distressing symptoms such as nausea, and shortness of breath. It differs from hospice care in that palliative care can be provided at the same time as curative treatment and is appropriate for people of any age with uncontrolled pain or symptoms, at any stage of an illness.

Uncontrolled pain can lead to needless suffering, poor sleep, urinary retention, limited mobility or breathing, fear or anxiety. Individuals experiencing pain may say they are fine when they are not since pain awareness varies across cultures, genders and beliefs. Some people are very vocal about their pain and desire pain relief. Others think they need to be tough and refuse to acknowledge their pain. Some people believe pain is a way to atone for sins or is part of the aging process.  Many believe that they will become ‘addicted’ to pain pills, or fear being overmedicated.

“Physical pain can be made worse by emotional or spiritual pain, and that distress can make it more difficult to achieve comfort,” said Michael Paletta MD, FAAHPM, Hospice of Michigan vice president, medical affairs and chief medical officer. “Patients and caregivers alike often fail to recognize emotional and spiritual pain. Overlooking or ignoring signs of such distress does nothing to improve quality of life or patient care. Those experiencing chronic pain should always seek help, while others should be vigilant for signs of physical, emotional and spiritual pain within their loved ones.”

Everyone’s experience with pain is different. There is no test or X-ray to measure pain. For those who find it difficult to vocalize or admit their pain, family and friends can look for such signs as grimacing, restlessness, irritability, mood swings, wringing of hands, teeth grinding, moaning, sleep disturbance, poor concentration or decreased activity. Keeping track of a loved one’s pain occurrences, the level and type of pain and when medication was taken, can help clinicians prescribe the proper course of palliative care treatment.

And, while it can be difficult for family and friends to see a loved one in pain, they often suffer, too. Pain may cause a strain on the relationship, frustrations and/or anger. Caregivers often have the added daily stress of increased responsibility for maintaining the home on top of caregiving responsibilities. They may also have to endure emotional outbursts from the patient in pain. Family life may become constricted; communication, activities and interactions amongst family and friends may center on pain. The family’s social life may suffer and individuals may become progressively isolated from friends and the community.

Pain not only takes a physical toll on a patient, but an emotional and spiritual toll as well. Hospice of Michigan spiritual care coordinators and social workers relieve emotional and spiritual distress by identifying concerns, offering expert advice, a listening ear, and meeting patient and family member goals.

When traditional pain relief methods are not enough, enjoying music and art, a relaxing massage and the companionship of a pet can help a loved one maximize comfort and quality of life. Introducing music, art, massage and pet interactions alongside medical interventions and counseling provides patients with a holistic plan of care. Such “life’s pleasures” help patients control symptoms, manage stress and relieve anxiety.

Hospice of Michigan clinicians educate patients and families on the many types of pain management, always mindful of a patient’s wishes and beliefs in developing a course of treatment.

September’s designation as National Pain Awareness Month is a great reminder for everyone who deals with pain – patients, caregivers and clinicians – that pain should never be tolerated. The care teams at Hospice of Michigan are dedicated to identifying and relieving pain of all types – physical, emotional and spiritual.