Counseling, Consulting, and Case Management service
Counseling, Consulting, and Case Management service
Rose Fitzgerald Kennedy
End of life care is overwhelming when the options are not clear. When a loved one is suffering from a long-term chronic condition they may be eligible for a Medicare program called Palliative Care. This is a pain management program that monitors and treats symptoms of an incurable disease. Palliative care is provided on an outpatient basis, although you may be able to meet with a hospital based team during a hospitalization to coordinate care after discharge. Palliative care programs can sometimes provide nursing and social work visits in the home.
When a loved one is approaching the end of a terminal illness and medical professionals have limited curative treatment options, hospice may be the next step. Hospice care is a service that is available when a patient receives a terminal diagnosis with a life expectancy of 6 months or less. This benefit is usually covered 100% under Medicare and most other commercial insurances. Hospice provides all medical equipment, such as a hospital bed, wheelchair, and commode, and frequent visits from health care professionals to help manage your loved one's care.
Home Hospice or Inpatient (hospital) Hospice
We frequently hear the question "do you want inpatient hospital hospice or home hospice?" Medicare and other insurances mandate who can receive inpatient hospice care according to a rigid set of regulations. Inpatient hospice care is for those patients who have symptoms that cannot be managed in any other setting because they require intensive pain and other symptom management, usually with IV medication and 24 hour nursing care. Inpatient hospice is for managing extreme symptoms such as intractable pain, nausea, or agitation that is not able to be managed in any other setting. During a hospitalization for a medical crisis, you may be able to meet directly with the hospice team who will be able to walk you through this difficult decision.
Most patients at the end of life meet criteria for routine level of care in the home. Hospice is managed by a home health agency who will review your loved one's disease progression and need for symptom management at the end of life. Hospice provides visits from Registered Nurse (RN), social workers (MSW), Chaplain, and home health aide to help you manage your loved one's needs at the end of their life.
A certified case manager or clinical social worker can help guide you to the appropriate resources and assist with referrals to visiting nurse agencies.
"Each person’s grief is as unique as their fingerprint. But what everyone has in common is that no matter how they grieve, they share a need for their grief to be witnessed. That doesn’t mean needing someone to try to lessen it or reframe it for them. The need is for someone to be fully present to the magnitude of their loss without trying to point out the silver lining."
There are 1 Million Stages of Grief and there are as many theories about grief as there are those who grieve. But you may have heard some scholarly ideas:
5 stages of grief (Elizabeth Kubler-Ross)
Tonkin’s Model of Grief
The 4 Tasks of Grieving
The 6 R’s of Mourning
The Dual Process Model
The Reconstruction of Meaning
Intuitively vs Instrumental Grieving
No two people grieve in the same way. Your grief is your journey and it should be respected and honored.
Grief work is not passive and we don't have to endure pain in private. Inevitably we will be alone much of the time in our grief, and that solitude can be rich. But as long as we know that we are held somewhere and by someone, be it a close friend, family member, or therapist, it can be a productive and loving space.
We must sit with our grief. Process it, engage with it, treat it with the worth and dignity that our loved ones deserve. Grief is not a distraction and should not be avoided. We're told to "let it go," "move on," "get back to work." But, in reality, we need to sit with this grief and let the alchemy transform us. We're allowed to be sad, it is part of this beautiful, bittersweet life. Holding grief and joy together is the work of our lifetime.
Ultimately, Grief is love: love of the one who passed away, and love for the one who is grieving.
Who is the story keeper in your family? The matriarch is naturally the keeper of the words, traditions, history.... And sometimes the skeletons in the closet, too. So many objects, so many stories, so many aunts, uncles, cousins, second cousins twice removed... birthdays, anniversaries, dates of death, cemetery lots. There are innumerable items, thoughts, and memories.
When a family experiences the loss of a beloved matriarch, it is often an unrecognized but very important factor in our grieving process - who will be the story keeper now? This a silent nagging grief, it is not something that is primarily evident after someone dies. Often, we are focusing on the funeral, then the financial concerns, and possibly the future care concerns for other members of the family. This piece of grief is hidden below the obvious events of the dying process.
We are lucky enough to have physical photographs of the older generations of our loved ones, tangible objects we can touch, smell, and hold close to our hearts. In our busy lives of 2022, sometimes we do not retell those stories over and over, which is how they eventually became ingrained in the family lore. We’re too busy to sing the songs of our childhood, review the family tree, say prayers that we know rote but that the younger generations may have lost in translation. In our busy lives we may lose the quiet traditions, such as placing flowers on a grave or writing letters that are now habits from the past. Those long Sunday family traditions are fading away with our chaotic sports schedules and smartphones.
But now, how do we swim through the lifetime of memories in the home after one of our parents dies? It’s overwhelming to sift through all the clothes and newspapers and other beloved items that they saved for some mysterious reason, and we may feel like we’re drowning.
We can only do this one day at a time. Sometimes, one hour at a time. Yes, they saved years of National Geographic for a reason most likely unknown to us. Maybe there is a tie to a past event, maybe the memory of the day they received the item, maybe an attachment to a long ago childhood friend or a childhood home. There are boxes full of photos of people we've never met and places we’ve never been. I have heard many times: “it’ll be their problem when I’m gone because I can’t bear to throw it away today.”
So, in some strange way, they may be relying on you to wrap it all up. Wrap up their belongings, choose some important and heartfelt items, and then it’s ok to distribute to charity and, eventually, it’s ok to throw it away.
What can we do today to help our children? Tell the important stories and share the important items and rituals. The younger generation will enjoy them and, especially, enjoy your time spent sharing legacies. Print the pictures and write names and dates on the back, have family dinners with stories, organize our boxes of mementos of our grade school handprints and high school trophies. Keep the special things and tell those stories today, before it’s too late. Because we always think we have more time, until we don’t.
“You may tell a tale that takes up residence in someone's soul, becomes their blood and self and purpose. That tale will move them and drive them and who knows what they might do because of it, because of your words. That is your role, your gift.”
Erin Morgenstern, The Night Circus
Copyright © 2022 legacy Counseling and Consulting - All Rights Reserved.