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Assembling the Team:  Hospice Organizations

Their role as a support provider  ©

Hospice is not just for Cancer Patients

Hospice’s entry into working with Alzheimer’s and other Dementia patients is on new ground due to the inability to accurately predict the life span of a late stage Alzheimer’s patient, but the services they offer these family members and their caregivers are no less valuable than those they offer other families facing terminal illness. They have developed a criteria of selection and eligibility that relates specifically to Alzheimer’s Disease and other Dementia’s.  If your person meets that criteria the chances are that Hospice will be able to provide services through Medicare that Medicare won’t approve through other channels.  Call your local Hospice Organization for specific information about this criteria.  If your family member meets the criteria they may be eligible for full services.

To be eligible for hospice services

• An assessment must be made by a physician and registered nurse.

• Person must be eligible for Park A under Medicare (Age or Disability)

• Diagnosed terminally ill (prognosis six months or less)

• Diagnosis certified by patient's primary physician

• Diagnosis certified by Hospice medical Director

• Patient or significant other elect hospice care - see palliative rather than curative care.

Hospice will accept private pay, they often have scholarships and there are a number of services that are free or paid on a sliding scale.  Once your person has entered the last stage of Alzheimer's you might want to phone them for information and long-term planning purposes.

Their services can include: 

• Hospice physician services

• Skilled nursing visits (also on call)

• Home health aide/homemaker

• Volunteers/Respite Care

• Drugs, equipment and medical supplies (related to terminal illness and may include provision of equipment such as beds, wheel chairs, catheters, portable commodes)

• Pain management 

• Social Work (family intervention and counseling) 

• Chaplain (spiritual counseling)

• Bereavement counseling

• Therapist as needed

• Support groups 

• Many units offer ancillary services such as massage therapy, music therapy. 

• They often run seminars and lectures.

Hospice offers support groups for people in varying stages of grieving.  This is important for those of us facing long-term care since grieving issues are so much a part of this job.   Contact them for a specific list of those offered in your area. 

They also have a great deal of information and experience about incontinence care.  Because they deal with the end-of-life stages of care, the majority of their patients are incontinent.  They know how to move and bathe people who are chair-bound and Bed-ridden.

Ask to speak with a counselor or their chaplain if you feel overwhelmed by the tasks ahead of you.  They can also assist you in making the hard decisions about care and final decisions about care whether your person is eligible for services at that time or not. 

In the event that you are doing home care, their presence and involvement at the time of death precludes any discussion by the coroner or the police regarding the circumstances of the death at home. The assumption is that your family member’s illness was terminal or hospice wouldn’t have been involved.  In our case, my first call, when Tom died, was to my Hospice.  A social worker arrived at my home within an hour, she took care of all the phone calls to the coroner, Tom’s doctor, and the funeral director.  They were a valuable resource for me, and one you should access at some point in your family member’s care.

~*~

It may be advisable to read material on grieving issues and Hospice can direct you to titles and authors they recommend.  Dr. Elisabeth Kubler-Ross was the forerunner in working with dying patients and their families.  She lists the five stages of grieving as:

Denial and Isolation, Anger, Bargaining, Depression, Acceptance

She, and those who have followed her lead, can help you recognize and then deal with the aspects of grieving.  I also recommend reading anything by Norman Cousins and Dr. Bernie Siegel.   C. S. Lewis wrote a remarkable book, after his wife, Helen Joy Gresham died, called; "A Grief Observed." 

I emphasize that those of us dealing with long-term illness are dealing continually with grieving issues. Every decision that is made, every loss noted, every step further into the illness is grieved over and I believe much of the family dynamics that develop during the progress of a disease like Alzheimer’s is the result of how the individuals handle their feelings of loss. The recognition of the inability of a family member to bathe and toilet themselves is a major grieving issue for many.  Much of the inertia, anger, rejection, reluctance we feel is the result of grieving.  Some counseling may make the difference in how you move through the barriers of care you will face.  For further information on this subject click here  "Is It Guilt or Is It Grieving."

Hospice of Boulder County offered this list as a means of 
evaluating the grieving response.

• A feeling of tightness in the throat or heaviness in the chest.

• An empty feeling in the stomach and loss of appetite.

• Feelings of guilt and/or anger at times, some of it felt towards the person for leaving them to face life alone.

• Feelings of restlessness and difficulties in concentrating in spite of attempts to fill time productively.

• Feeling as though the loss isn’t real, that it can’t be happening or that it didn’t actually happen at all.

• Feeling a sense of the loved one’s presence, such as expecting the person to walk in the door at the usual time or hearing their voice, or seeing their face.

• Having difficulty sleeping, and dreaming of the loved one frequently.

• Assuming mannerisms or traits of the loved one and experiencing an intense preoccupation with the life of the loved one.

• Regretting things that happened or didn’t happen in the relationship with the loved one.

• Feeling unable to talk about feelings of loss around others.

• Feeling out of control with moods which change over the slightest things and crying at unexpected times over seemingly little things.

These are all natural and normal grief responses.   It is important to cry and talk with people when you need to.  Hospice provides support and counseling to help people through these difficult times. The thing I found so supportive about this agency was the gentle way in which they allowed me to make my choices at my own pace.  They accepted my grief, they accepted my determination to keep Tom home, they accepted me. They were the only people I worked with who were able to talk openly about dying of this illness and how to prepare myself for the passing.  And when Tom died they were there to take me through the process.  A hospice nurse helped me prepare and dress Tom’s body before friends and relatives arrived at our home, they contacted my doctor and the coroner, they called the funeral parlor and made appointments for me to take care of that last aspect of care and they sat with me until family arrived.  They left me with a profound sense of accomplishment and peace for both Tom and myself.

Community Hospice of Denver Colorado offers this breakdown of services.   Contact your local chapter for information in your community.

For specific information on the eligibility criteria for Alzheimer's disease and Hospice contact the Alzheimer's Association 

ADRDA 919 North Michigan, Chicago, Illinois 60611-1676.

Phone: 800 272-3900

Fax: 312 335-1110

Web Site: http://www.alz.org/

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