Life is difficult sometimes. We are faced with decisions, forks in the road, life changing events that we must deal with on a moment’s notice and with no support or assistance.
Wow that is one depressing sentence! Sorry.
I met with a wife and daughter of an 88-year-old man from our church who has been through the medical wringer for six months. After a back surgery that was successful, he suffered a fall which necessitated another surgery. Then he went into septic shock from a toxic gall bladder. He has been in and out of hospitals, is tired, is confused, in pain and just wants to go home. And die.
The wife is full of guilt and doubt and fear. Should she honor her husband’s wishes and bring him home? Does she take his ranting with a grain of understanding that he is suffering from dementia and exhaustion? Can she care for him if she brings him home? Is she putting herself and her husband at risk trying to care for him? Is that the loving choice? What does home health offer? When is hospice the right choice? What about a care facility? What is the right answer? When is the desire to die the deciding factor?
Everyday people must deal with those questions, those decisions, those choices. There is no road map or Google app for this. It’s just Life 101 and you don’t get to study for the final.
And why, you ask, was I meeting with this family? Well, I work for a company that deals with grief and elder care issues, I do presentations for hospices and funeral homes about the value of the journey, and I’m a funeral director. My ministers think I’m a one stop shop of information for the parishioners. A proverbial Death R Us. So, when questions come up, the response is “Call Glenda”.
She wanted to know if home health or hospice was the answer. My best friend happens to be a nurse in a home health agency, so I called the night before so I would look really smart at our meeting. She wanted to know when to call hospice. And she wanted to know about the last decision—how to plan for a funeral. Who to call? Where to go? What to expect?
So, home health—this is a very viable option for a patient who needs nursing supervision on a regular basis to check meds, check vitals, treat wounds, answer questions, communicate with the doctor. A primary care physician must write the order for admission to home health. The nurse will do an initial intake assessment to determine the level of care that will be required. However, no matter how much care the patient needs, these nurses will come by for visits during the week—not sit with you for hours at a time. This is not in-home nursing care. This is eyes on the patient and supporting the family care for those patients who can manage at home. There are aides who come by on a regular basis, perhaps 1-2 times a week—to assist with hygiene care. There are physical therapy specialists who will come by as ordered by the physician. The staff is on 24-7 call for emergency situations or questions.
Is the patient mobile and able to transport to the bathroom? Is the patient in a fragile state? Are the family members physically able to lift or maneuver the patient when needed? All in all, home health is a very comfortable option for patients who do not need ‘round the clock care or for families who can pay additionally for ‘round the clock care.
Hospice—of course many people think they understand hospice, but I’m always amazed at the misconceptions about this valuable option. Patients are eligible for hospice care when they have been diagnosed with a terminal illness with a prognosis of 6 months or less. At that time, comfort, care, and symptom management become the primary focus, and curative treatment is no longer the patient’s choice or option. This does not mean that the patient must be home or bed bound. It means that the choice has been made not to proceed or seek treatment for the disease or condition and the patient and family are engaging the wide range of services offered through hospice. There are social workers, chaplains, aides, bereavement specialists as well as the nurses who provide the on-going care.
Again, these nurses are not going to come sit by the side of the patient for hours or days on end. Hospice provides intermittent nursing visits to assess, monitor and treat symptoms, as well as teach family and caregivers the skills they need to care for the patient. Team members are available 24 hours a day, 7 days a week to answer questions or visit anytime the need for support arises. And whenever possible, the hospice nurse will be with the patient and family at the time of death.
The biggest problem with hospice is that people avoid engaging because they believe that this is “giving up” or “waiting to die”. Honestly, aren’t we all waiting to die? The death rate is one each, so I wonder why we run so hard from the concept that living each day comfortably and intentionally is the coward’s way out.
Care Facility—there’s that big evil cloud lurking--“I promised my parents/husband/wife that I would not put them in a nursing home”. Well, sometimes that choice is the best choice for the patient as well as the family. There they will have 24-hour care. There they have professionals who know how to transport and move an unresponsive body. There they have therapists who will come by every day. There the family knows that eyes are on the patient all the time.
And then there is the caregiver. Too often we find that caregiver’s health and well-being is put at risk from stress, exhaustion, guilt and ignoring their own needs. I told my friend that I didn’t want her to die before her husband.
After our discussion, the daughter said, “Well, I know that my dad wants to be cremated and placed in a biodegradable urn”. I asked which funeral home they had chosen. She looked at me blankly and said “I have no idea. I hadn’t thought about that.” Well, to be buried in a biodegradable urn, there are some steps to getting there. The first one is call a funeral home. So, we talked about choosing a funeral home, how to plan a service, the important element of a family final viewing and goodbyes and ceremony.
I gave my friend 3 books at our meeting:
Share My Lonesome Valley—The Slow Grief of Long Term Care. This book addresses all the issues that caregivers face and give permission for them to take care of themselves as well as their loved one.
When Love Gets Tough—Making the Nursing Home Decision. Doug’s first line in this book is “I promised my dad that he would never have to go to a nursing home. He outlived my promise”. This outlines the decisions and the guilt that accompanies a choice to place a patient in a care facility.
Planning a Meaningful Funeral. This funeral planner lays out the considerations for planning a funeral, understanding the grief process after a death and has planning pages for the family to write down wishes, wants and important information.
I hope her husband makes a great recovery and can regain his strength and live for another 10 years. I hope she feels empowered to make the right choices for him and for herself and her family. I wish I had the ability to sit down with every family who stares in the dark abyss unsure about what the right next step needs to be. But, you can buy our books. That might help.