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Balancing end-of-life caregiving with holiday celebrations 

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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.

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