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Family Members as Caregivers
Care in the Community
Institutional Care
Caring for Parents in a Long-Term Care Facility
Decision to Move to a Seniors' Residence
Tips for Dealing with Stress and Tension
Lessons Learned for Children of Survivors
Second Generation Groups

Institutional Care
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Decision to Move to an Institution

Sometimes, family caregivers continue caring for an elderly Survivor at home until they themselves are exhausted, both physically and emotionally. Deciding that you can no longer care for your relative is one of the most difficult decisions you will have to make.

Decisions about placement in a long-term care setting are often made in reaction to a crisis, such as discharge from an acute-care hospital. It's much better to start thinking about this possibility and exploring your options before a crisis occurs.

As a child of Survivors, the topic may seem monumental and unmentionable. Often there is a transmission of the parent's early trauma during the Holocaust to his or her adult children. In such cases, the normal "mixed feelings" often experienced by children without a Survivor background, may add to feelings of guilt and defeat.

Some adult children of Survivors have ambivalent and unresolved feelings towards their parents, or towards their parents' experiences in the Holocaust. They feel especially threatened or vulnerable when confronted by the idea of losing an elderly mother or father.

For Survivor families, the thought of placing their family member into a long-term care facility is synonymous with defeat. The children of Survivors tend to see their parents as people who overcame inconceivable obstacles, and it may be difficult to reconcile this long-held image with a mother or father who is growing more and more frail and dependent. There is also a real concern that relocating a Survivor to an unfamiliar environment may trigger many painful memories of the Holocaust.

But eventually, families have to look at their individual situation realistically. If providing care at home has become too exhausting or impossible, or if an elderly Survivor clearly requires professional, round-the-clock medical care and supervision, there may be no other choice. It is important that families explore and discuss these issues so those involved in caring for the Holocaust Survivor fully understand the family's feelings and concerns.
Red Flags for Nursing Home Placement

Burdensome incontinence: Strenuous effort is required to prevent skin breakdown.

Too much heavy lifting: The caregiver is unable to lift and transfer the person safely, despite having received training in special techniques and the use of assistive devices.

Caregiver is sleep-deprived: The caregiver's sleep is disturbed on a nightly basis and relief help is not available frequently enough or at all.

Caregiver becomes ill or injured: The caregiver tries to go on providing care while neglecting an illness that requires medical attention or extended rest from care giving.

Other stresses impinging on the care: The caregiver is going through a divorce, coping with another illness or a death in the family, or facing problems with finances, employment, or dependent children.

From Wendy Lustbader and Nancy R. Hooyman, Taking Care of Aging Family Members New York: The Free Press, 1994.
How to Raise the Topic with the Survivor

Raising the subject of long-term care may be uncomfortable, even in families with a history of open communication and where elderly parents are realistic about their needs. Other families find it almost impossible to consider the concept of institutional care, and will understandably, have great difficulty discussing it. This is an emotional and complex subject, where rational discussion may go unheard. If you are concerned about your parents' response to placement, perhaps a trusted physician, relative or friend would agree to cautiously initiate the discussion. Survivors, who are often intent on protecting their children, may respond differently and more positively to a trusted outsider. Where possible, allowing time to consider and reconsider the options is helpful.

Issue of Relocation for Survivors
Whenever possible, advance planning for placement is preferable. This allows the older person to participate in the decision-making, weigh in on various choices, and have some time to "prepare'." During the War Jews were often wrenched from their homes and families with no prior warning, and the always ended up in infinitely worse circumstances.

Allowing the Survivor to become familiar with the destination, the plan and the process will alleviate some anxiety. Where possible, the family should select a facility with an awareness of caring for Survivors. The environment should provide familiar foods and relevant Jewish programming. Familiar photos and personal items should be in place when the individual arrives.

Staff Sensitivity
Staff need to understand that feelings of "giving up" may be more pronounced for Survivors. They must be helped to appreciate why the decision to move into long term care can be so emotionally difficult for Survivors and their families. For example, they should be informed that the Survivor's immediate family is his or her only family (if that is indeed the case). Encouraging continuity in family connections and recognizing the client's unique needs are particularly critical to ease the adjustment.

The Survivor family may be more protective than families of other clients, and may want to be more involved in planning care. Staff should understand the reason for this need and support it. Remaining involved in the care planning will help children of Survivors feel better about the decision to place their parent. Staff should see this as a help rather than hindrance. In the end, it's up to families to explain their unique circumstances and family history to those providing care.
The "Door Story"

It's important that staff in long-term care facilities understand and appreciate the people under their care. Staff who see their patients as people first form stronger bonds and ultimately can provide more compassionate care.

An easy, inexpensive way to for families to encourage this attitude is to create a "Door Story." This is a simple project, one which grandchildren can take part in.

Take a piece of standard size Bristol board, print your parent's full name in large block lettering. Then highlight some of her major life events and accomplishments in brief point form. Include a photograph of her in younger, healthier days, and maybe a family group photo. Hang this board on the door to her room, so that anyone walking by will be reminded that she had a full and interesting life, that she may have endured trauma, but that she also achieved successes. Most of all, the "Door Story" serves to remind staff that this frail, elderly person has a family that loves her. The "Door Story" may also be a source of pride to an older person, and its location on the door can help orient her to the new environment.

Other tips to assist the staff in providing the best care include:
It is important for family members to know that their loved one is safe. Staff may need to provide extra reassurance, particularly in the first days and weeks after admission. If family members are anxious, they should explain how difficult and threatening separation feels to them, and perhaps explain why

Families should take time to educate the nurses, doctors and other care providers about an elderly parent and his/her circumstances. This will go a long way towards ensuring better, more sensitive care.

Caring for me: Survivor perspectives
Survivors in long term care facilities have the same needs as all older adults: they need quality care, respect and some recognition of who they were, including what they may have endured and how much they have achieved despite a history of trauma. They certainly deserve an extra amount of compassion during the last chapter of their lives.