Caregiver The

A program of Health Projects Center

Del Mar Caregiver Resource Center

JULY/AUGUST 2017

Hospice Care What is Hospice? Hospice delivers comfort and support to people in the final stages of a terminal illness—and to their families. The hospice team are specially trained medical professionals who focus on easing pain and managing symptoms. They provide medical, emotional, psychological, and spiritual care to the person and family. They assist the family in coping with their coming loss and their grief afterward. Most hospice care is delivered in the home, but it can also be provided in nurs-ing homes, some assisted living facilities, and hospice facilities. The person who is ill and the family are the core of the hos-pice team and are at the center of all decision making.

Principles of Hospice Care Hospice recognizes the importance of including the ill person, family, and other loved ones in the care plan. Hospice services provide expert, compassionate care and make it possible for a dying person to remain at home. The earlier hospice care begins, the more it can help loved ones enjoy the best quality of life as a family unit. Sometimes a doctor and hospice program don’t agree on who should get hospice care, especially when a patient does not have a clearly defined illness or “terminal condition.” If this happens, ask the doctor to explain why

she believes the person is eligible and why the hospice does not. Or, try another hospice. Once the deci-sion is made for hospice care, a doc-tor must sign an order requesting it.

Although a family member or other caregiver cares for the person on a daily basis, a hospice nurse is availa-ble 24 hours a day to provide advice and make visits. To qualify for hospice, the person must be certified as terminally ill by his doctor and the hospice medical director. “Terminally ill” means hav-ing a life expectancy of six months or less if the disease runs its normal course. Hospice care is offered for two periods of 90 days, followed by an unlimited number of 60-day peri-ods, as long as the physician recerti-fies that the patient is still terminal. A patient may leave hospice care if his condition improves, and re-enter if it worsens.

Hospice Resources Hospice of Santa Cruz County 940 Disc Drive Scotts Valley CA 95066 Phone: 831-430-3000 Fax: 831-430-9272 Individual and group support for people grieving the death of a family member or friend. Sliding scale fee. www.hospicesantacruz.org Heartland Hospice 824 Bay Avenue, Suite 40 Capitola CA 95010 Phone: 831-373-8442 Services include in-home care, visits to hospitalized and contract nursing home patients, bereavement counseling, referrals to community resources and a speaker’s bureau. Medicare, Medi-Cal, private in-surance and private pay accepted. www.hcr-manorcare.com Hospice of the Central Coast at Chomp 2 Upper Ragsdale Drive Monterey CA 93940 Phone 831-649-7750 1-800-364-7001 VNA Hospice P.O. Box 2480 Monterey CA 93942 Phone 831-751-5500 www.ccvna.com Extensive case management and individu-alized care for patients and families with advanced illness to maximize and promote well being. Hospice Foundation of America Phone 1-800-854-3402

www.hospicefoundation.org National Hospice and Palliative Care Organization 1-800-658-8898 www.nhpco.org These organizations provide information and referral service, resources on end-of-life care, brochures on hospice, volunteering, and bereavement. Call your local Social Security Administration, State Health Department, State Hospice Organization, or call 1-800- 633-4227 Medicare Hotline to learn about hospice benefits.

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If a person with Alzheimer’s is able to re-tain the information that a loved one has died, then he should be told. However, since Alzheimer’s is a disease of severe memory loss, repeating information that only causes painful emotions may be

Taking Care of Yourself:

Talk things through

Caregiving for someone who is dying can be demanding, and it’s important for everyone involved to take proper care of his or her needs. A leading cause of depression is not talking about your feelings. Your spirits lift after talking to a friend or therapist because you’ve shared your feelings. Try writing your thoughts in a journal when you feel down, and always maintain close contact with others who you can talk to.

For information on upcoming events and

news for caregivers visit the

Del Mar Caregiver Resource Center’s website at:

www.delmarcaregiver.org

Includes:

Caregiver News Blog

Online Registration for Events

Fact Sheets

Support Group Lists

Online and Community Resources

G R I E F Coping with Reminders After a Loss Anniversary reactions happen when something reminds a person of the loss of a loved one. Grief doesn't just end at a certain point after a loved one's death. Reminders can bring back the pain of loss, even years later. Holidays, certain places, birthdays, sights, sounds, or smells can make grief come back. This isn’t a bad thing; it’s a sign that the loved one was cherished. If you know what to expect, you can help the person in your care cope better. Anniversary reactions can last for days or weeks often causing: Sadness, loneliness and crying spells Anger Anxiety Lack of interest in usual activities Trouble eating and sleeping, including stomach upset and nightmares Memories of events surrounding their loved

one’s death

Dealing with Returning Grief Be prepared. Don’t let the person dread Upcoming anniversary days. Grief is often worked through on these days and it becomes a time for healing. Plan distractions. Arrange a short trip or a visit with friends or family. Reminisce. Encourage the person to talk about shared good times. Start a new tradition. Make a donation or plant a tree in honor of the loved one. Connect with others. Talk about loss with peo-ple who were special to the loved one. Support also comes from religious and social groups, as well as bereavement support groups. Feel. Celebrate special times; you might find both of you crying and laughing.

When Grief Becomes Overly Intense If the grief of the person in your care is getting worse over time, or interferes with daily life, consult a grief counselor or other mental health provider. With professional help, you can help the person return to the path toward healing.

What is Palliative Care? Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a pa-tient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

Improves Quality of Life Palliative care teams specialize in treating people suffering from the symptoms and stress of serious illnesses such as cancer, congestive heart failure (CHF), chronic obstructive pulmonary dis-ease (COPD), kidney dis-ease, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS) and many more. This type of care treats pain, depression, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping, anxiety and any other symptoms that may be causing distress. The team will help you gain the strength to carry on with daily life. In short, palliative care will help improve your quality of life.

Close Communication The palliative care team will also spend time talking to you and listening. They will make sure you understand all of your treatment options and choices.

A Partnership of Palliative Care Team, Patient and Family Palliative care teams are specialists who work together with you, your family and your other doctors. They provide an extra layer of support when you need it most. In addition to treating your symptoms, the palliative care team spends as much time as necessary communicating with both you and your family. They support you every step of the way.

Talking to Your Doctor The first step is to talk to your own doc-tor. Most of the time, you have to ask your doctor for a palliative care referral to get palliative care services. Whether you are in the hospital or at home, a palli-ative care team can help you. Following are some tips to help you talk to your doctor: Tell your doctor you are thinking about pal-

liative care, and ask where palliative care is

available in your area.

Ask your doctor to explain your illness and

any past, current and future treatments and

procedures.

Explain to your doctor exactly what quality

of life means to you. This list may include:

being able to spend time with loved ones;

relief from any pain and other symptoms;

having the ability to make your own decisions for care and where you want to be treated (home vs. in the hospital).

Tell your doctor which treatments you may or may not want

If you have a completed living will or health care proxy, be sure to tell your doctor and provide him or her with a copy.

TO MY FAMILY AND FRIENDS: I have Alzheimer’s. No wants this

horrible disease and certainly not me. I am afraid. I feel guilty and sad and angry because I don’t want to be a burden. Please forgive me. I am confused. Please know I will need

constant reassurance from you and now on. I will repeat the same things over and over

again. Please don’t tell me I am repeating myself but listen and be patient. I may invent or say things that are not

true because I cannot remember. Please don’t correct me but help me save face in front of you and others. I will lose the ability to drive safely. Please prevent me from driving without making me feel incapable. This will be one of the hardest things for me to give up. I will forget to dress properly. Please be sure my clothing is clean and coordinated as I have always cared about my appearance.

I will forget how to entertain myself. Please encourage me and plan things for me to

do—and even when I say “no”, keep trying. I will get lost. Please don’t let me out of

your sight when in a crowd or unfamiliar place. I will forget how to prepare meals and whether I have eaten or not. Please keep me properly fed. I will forget my social graces and may do embarrassing things in public. Please forgive me and continue to take me places anyway. I will lose the understanding of time. Please have patience when I get up and dress for work at 3 in the morning. I may become angry and frustrated as the confusion overwhelms me. Please stay calm and soothing. I may refuse to bathe or shower. Please encourage me through the process. I may say things that are unkind and hurtful

to you. Please forgive me. I will always

have immense love for you in my heart, though I may not be able to show it the way I used to. I will lose the ability to do many things and each loss will cause you to grieve. Please do not dwell on my losses but try to focus on the abilities I still have. It may become too difficult for our to care

for me at home. Please don’t promise me that you will never place me in a care facility. If this happens, deep inside I will under-stand.

I have Alzheimer’s. Please remember

and treasure all our special memories.

Remember for both of us!

Thank you to our sponsors:

Caregiver Support Groups

Additional support groups are offered

through other agencies.

Alzheimer’s Association:

Monterey - 800-272-3900

Santa Cruz/San Benito - 800-272-3900

Cabrillo College Stroke & Disability Learning

Center: Santa Cruz - 831-425-0622

Central Coast Center for Independent Living:

Monterey, San Benito, Santa Cruz - 831-462-

8720

Community Hospital of the Monterey

Peninsula: Monterey - 831-625-4606

Dominican Hospital: Santa Cruz - 831-462-

7700

Hospice of Santa Cruz County - 831-430-3078

Jovenes de Antaño: San Benito - 831-637-9275

First United Methodist Church: Watsonville -

831-662-3170

Twin Lakes Church: Aptos - 831 465 3368

If you can’t attend a support group

in person, the Alzheimer’s Associa-

tion offers Telephone Support

Groups. Free and no phone charges.

For more information call the Alzheimer’s

Association’s Monterey office at 800-272-3900

Memory Impairment

Caregivers Support Group

When: First Wednesday of each month,

6:00-7:30 pm

Where: Hollister Community Center

300 West Street, Hollister

Facilitator: Christina Andrade , Family

Consultant

Sponsors: Del Mar CRC, Jovenes de

Antaño

For information, please call (831) 637-9275

Sponsored by Del Mar Caregiver Resource

Center:

More information about support groups

can be found on our website:

www.delmarcaregiver.org/

support-groups

Caring for a Spouse or Life Partner

Caregiver Support Group

When: 2nd Tuesday of every month, 1:30 –

3:00 pm

Where: 1537 Pacific Avenue, Suite 300,

Santa Cruz

Facilitator: Staff of Health Projects Center

For information, call (831) 459-6639

Caregiver Support & Education

Group - In Spanish

When: 2nd Monday of every month, 5:30 –

7:30 pm

Where: Quadrangle Building, 1000 South

Main Street, Room 302, Salinas

Facilitator: Yuliana Mendoza, Family

Consultant, Del Mar Caregiver Resource

Center

Co-sponsors: Del Mar CRC & Alzheimer’s

Association

For information, please call (831) 424-4359

Early Stage Alzheimer’s Group

Early Stage Alzheimer’s Group

When: Tuesdays, call for times

Where: Santa Cruz, call for location

Facilitator: Alzheimer’s Association

Sponsors: Del Mar CRC, Alzheimer’s Assn.

Groups are held in 8-week sessions. Not a

drop-in, please call to register.

For information, please call (800) 272-3900

Health Projects Center Del Mar Caregiver Resource Center

1537 Pacific Avenue, Suite 300

Santa Cruz, CA 95060

NONPROFIT ORG U.S. POSTAGE PAID

SANTA CRUZ, CA PERMIT 207

Current Resident or:

Health Projects Center’s

Del Mar Caregiver Resource

Center is here to meet the needs

of family caregivers and the

health professionals who serve

them.

For more information about free

and low cost services for caregivers

of people with brain impairment

please contact:

Health Projects Center

1537 Pacific Avenue, Suite 300

Santa Cruz, CA 95060

831-459-6639

Or visit us online at

Dying at Home Most people would prefer to die at home. Hospice gives them that choice. When setting up a home for hospice care, try to keep it as familiar and “homey” as possible, to make the person feel most at ease. If possible, consult with the person in your care to find ways to keep things comfortable and familiar. Where a person dies may be as important as when they die. People who die at home, receiving hospice or palliative care (care that eases suffer-ing but does not try to cure) experience less pain and dis-tress than those who die in a hospital. Their friends and family suffer less too. And, less pain, distress, and emo-tional upset may even prolong life, giving the family more time to enjoy each other. Sometimes, of course, a person’s symptoms cannot be managed at home. In these cases, no one should think that going into a hospital for care is a failure. The dying person’s comfort is the most important goal in end-of-life care.

* ©2014 Care Trust Publications LLC. All rights reserved. Reproduction of any component of this publication is forbidden without a license from the publisher. It is for

informational use and not health advice. It is not meant to replace medical care but to supplement it. The publisher assumes no liability with respect to the accuracy, com-

pleteness or application of information presented or the reader’s misunderstanding of the text.