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Lessons Learned for Children of Survivors
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Care in the Community
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Providing Care for a Spouse

Very often, following liberation, Survivors married other Survivors. Family life for Survivors after the war took on many different meanings.

Often couples came together in efforts to survive and not because of love. Love was often not the impetus for couples to marry. Instead goals such as mutual dependency, protectiveness and an ability to build a new life fuelled many of these unions. In other instances there are remarkable stories of young couples wrenched apart, enduring separate traumas in separate locales, and remarkably being re-united following liberation.

In either case, these young families tackled post-War challenges with a resiliency that was unprecedented. They coped with starting over again in new countries, learning new language and customs and finding new jobs - all in the wake of very recent comprehensive and traumatic losses. These couples succeeded by forming "Survivor partnerships," each with its own unique identity, qualities and coping mechanisms. Their commonality was that they worked and functioned as a dyad.

Now these Survivors are finding that age and illness present very real threats to that dyad. Given that one person of a couple may be ill and need help, the logical outcome in most Survivor families is that the healthier spouse will provide care. Family members and professionals should understand that these are often symbiotic (mutually rewarding) relationships in which couples generally coped quite well - so long both partners were healthy.

It may be difficult for spouses who are caregivers to trust "outside" help or even to ask for it. While one partner may be ill, both are aging and coping with change. Spouses who are caregivers have the right to be informed about all aspects of their partners' medical and daily care, including diagnoses (the nature of an illness) and prognoses (how the illness is expected to proceed.) They should also be encouraged to become active partners in all aspects of care.

To ensure this, spouses must share as much information as they have about their partners. They must also recognize that love and commitment to an ill husband or wife are their own unique and important contribution to quality care.

At the same time, Survivors themselves must be prepared to accept support from family and appropriate health care providers. Aging and its related illnesses are new experiences and help is available.
Providing Care to a Survivor Parent

For children of Survivors, caring for an aging parent brings with it a mix of emotions. Their parents experienced many traumas, and now their children want to protect them and provide care.

The burden of care giving often rests with adult children because Survivors have no other relatives. Also, most Survivors have no experience with aging because they were robbed of the opportunity to watch their own parents grow old and never had the privilege of watching extended family members experience aging as a natural life process. If no one in the family know what to expect, they had no practical examples of elder care.

Aging is part of the natural life process, and its conclusion is death. But for many Survivors, who faced their own mortality prematurely during the Holocaust yet managed to survive, death is still considered as a personal defeat. In order to survive, they beat all the odds, and this tenacity that served them so well in their youth may complicate their aging.

In many instances, parents couldn't teach children about death because they themselves had never learned how to handle death or how to grieve normally for their lost family members. In their experience, a death in the family was related to mass murder and multiple traumatic losses. It is often the children of Survivors who must help their parents learn to be old (and in many cases, teach them how to enjoy life.)

At the same time, these children must face their parents' natural mortality. Compounding this anxiety is a paradoxical familiarity with the concept of death. Many Survivor children were raised in a unique environment where genocide was part of the fabric of family life. It is especially difficult for these children to deal with the "normal" realities of aging parents.
Mrs. L.'s Story

Just before the Nazis invaded Poland and closed the borders, Mr. and Mrs. L. managed to escape to Siberia with their two young daughters. Mrs. L. had come from a wealthy family and always enjoyed having servants to help her with her household duties. She was a frail, delicate woman who relied on her strong and handsome husband to keep them safe and make difficult decisions.

Within two months in the cold harsh climate of Siberia, Mr. L. died of pneumonia. Mrs. L. was left with an infant and young daughter. In order to feed them, she trudged several miles each way to work in a bakery. Her daily pay was a loaf of bread and a few coins to purchase some root vegetables when they were available. Her eight-year-old daughter took care of the baby for the 12 hours she was away each day. But eventually, unable to live under harsh conditions of cold and hunger, the infant died in her sleep. Mrs. L. and her surviving daughter walked for two weeks, carrying the dead child, until they could find a rabbi to say the prayers and bury the baby.

Mrs. L. and her older daughter managed to survive,and after the War, finding no other living relatives, they came to Canada. Mother and daughter were inseparable. There Mrs. L. married another Survivor from her hometown.

All she wanted wasfor her daughter to have a home, a father and be like the other children. She was convinced that a nice house, a good school, and lots of healthy food would ensure her child's happiness and security. Mrs. L. worked as a seamstress in a factory by day, studied English by night. She worked hard in order to give her daughter the finest things, the best education - but her daughter never seemed happy like all the other teenagers. In fact, after the War was over, Mrs. L. and Her daughter were never close again.
Grandchildren

Many Survivors who have grandchildren say that "This, these children, are the reason why I survived." They see this third generation as a symbol of hope for the future, and their relationships give substance to memories and the family legacy.

Grandchildren can play a special role in caring for their aging Survivor grandparent(s). Such relationships are generally not complicated by past authority conflicts and painful memories. Warm childhood memories of the grandparents may contribute to bonds of affection. For these reasons, regardless of their age, grandchildren can often approach "care giving" with energy and optimism that greatly exceed what their own parents are able to supply.

It is a different, enriching and hopeful relationship, and one that has the potential to bring great comfort to older Survivors in the midst of other losses. The opportunity for a grandchild to contribute to a grandparent's life can be a mutually beneficial learning experience, which creates cherished memories.

Grandchildren have opportunities for closeness to these Survivors, closeness which may not have been possible for their own parents. Adult children of Survivors should be aware of these potential intergenerational bonds and wherever possible, help them to flourish.
Educating Personal Care Workers about caring for Elderly Survivors

Accepting help from outsiders can be a very difficult decision for Survivors and their adult children. There are issues of trust, including fears about having a stranger in the home, that some families find hard to overcome. Often, the perception is that a paid caregiver can never be good enough, and the subsequent guilt associated with that assumption is sometimes overwhelming. For adult children who live in a different city or country than their parents, the issues often multiply. Quality assurance, maintaining the exchange of accurate information and the practical costs involved are some of the barriers to peace of mind.

Often the cost of hiring a private care worker may be prohibitive for elderly Survivors, or else they may not be willing to spend their hard-earned money on outside help. In order to sustain, afford and/or ensure quality care, families must work together and often quite creatively.

In some communities subsidies may be available for Survivors who require personal caregivers. Adult siblings may have to pool their resources. Sometimes adult children of Survivors misrepresent the actual cost to their parents, "topping up" the amount given to the private caregiver. In general, in order to sustain trust through difficult times, it is best to be as forthright as possible.

Families are not the only ones who face challenges in caring for elderly Survivors. Personal care workers and homemakers are also affected by their clients' history. Such caregivers must understand the unique and traumatic events which shaped these older people and which may impact on their care.

Adult children of Survivors can provide private caregivers with some of the information contained in this manual. They can also share personal information about an elderly person in an effort to increase the caregiver's understanding, appreciation and sympathy for this person whom they are meeting at the end of a long and complex life. Here are some tips on how to educate a private caregiver who is looking after an elderly Survivor:
  • If the person does not speak the same language as your parent, make sure that they understand key terms for the Survivor. Certain words have very specific meanings.
  • Explain why food may be particularly important to your parent, and describe the type of cooking that will be most familiar and comforting.
  • Discuss your parents' history so that the caregiver is more aware and prepared when something comes up in conversation. Let the caregiver know how your parent feels about sharing his or her war-time experiences. Explain that some Survivors want others to know and will tell everyone about their past, while some prefer to say nothing.
  • Clearly identify your parents' triggers' or particular sensitivities. If disrobing brings back memories of their clothing being removed at Auschwitz, ask the caregiver to explain in a soft voice that it is time to bathe, and that they should avoid rushing the Survivor in any way. To help you identify specific triggers, refer to "Understanding Survivors".
  • To the best of your ability, inform the caregiver about what traumas your parent experienced before, during and after the War, and what their reactions might be today. Take time to regularly communicate with the caregiver. This effort will pay off in better quality care for your parent, and peace of mind for you.
  • If the caregiver is from an agency, explain to the agency the importance of consistency. A Survivor may have trust issues, and it's vital that they have person with them from day to day.

Refer to the section on caring for caregivers.
Planning for changes in abilities or functioning

The normal changes associated with aging were discussed earlier in Part 1. Physical and cognitive changes are inevitable as people age and the best way to cope with changes is to be as prepared as possible. When a Survivor parent has a progressive physical or cognitive disease, here are some ways you can prepare for changes that may occur over time.

Be aware of your parents' wishes (for example, how they feel about "do not resuscitate" directives), especially if their health deteriorates significantly. Don't be afraid to have conversations about what medical interventions they do or don't want. Your opinions may be very different, so it's important that you ask them. Having this information will make it so much easier on you at the end of their lives. Should the Survivor parent refuse to discuss their wishes about end-of-life care, you might want to consult with a member of his or her health care team (a family physician or member of the hospital/nursing home staff). Choose someone you feel comfortable with and explain the circumstances.

Give your parent permission to talk about death. Even though the Survivor may have made it clear your entire life that this subject is taboo, you should take a risk and initiate a discussion about their wishes near the end of their life. Remember -- they have experienced so many deaths themselves, and may not have felt a sense of closure. For these reasons, it may be especially important in their minds that you grieve properly for them after they die. They may have ideas about where they want to be buried, what they want on their headstone and what kind of funeral service they want. If you don't ask, you will never know. Of course, if they don't want to talk, let it go and respect that this is an issue of monumental proportions for anyone, especially a Survivor.

If your parent is losing cognitive abilities, this may exacerbate their traumatic memories. Ensure that anyone providing care understands these implications. It is important to arrange and coordinate appointments to be as efficient as possible in order to minimize stress.

Be flexible and willing to change your care giving plan. You may need to develop different tactics for different stages of the Survivor's illness and deterioration.

Talk to other "second generation" children who are in similar circumstances. They will understand the differences in caring for a Survivor parent and will be able to listen and understand what you are going through. Having someone to share it with will make the journey a little easier.

Encourage your parent to talk with friends who are Survivors. These people share a common bond, and Survivors may find it easier to share things with these contemporaries than with family members, whom they may still wish to protect.

Learn as much as you can about the Survivor's diagnosis and prognosis, so you'll be prepared for changes and decisions to come.
Alzheimer Disease

Alzheimer Disease (AD) is the most common form of dementia affecting elderly people. The symptoms of AD may include a loss of memory, judgment and reasoning, changes in mood and behaviour and the inability to perform familiar tasks. AD is not a normal part of aging. Family members should understand that AD is a degenerative disease with no known cause or cure at the present time. However, new so-called cognitive-enhancing medications can delay progression of the disease. .

Research shows that several changes occur in the brains of people with AD:
  • the brain cells shrink or disappear and are replaced by dense, irregularly-shaped spots, or "plaques"
  • thread-like tangles appear within existing brain cells; these tangles eventually destroy healthy brain cells
  • a person with AD has less brain tissue than someone without the disease, and this shrinkage will continue over time, affecting how the brain functions
Most cities have an Alzheimer Society or similar service. These agencies are an excellent resource and have comprehensive educational programs. When discussing your relative with professionals, make sure they are aware that the person is a Survivor.

The Three Stages of Alzheimer Disease
Tips: Caring for Survivor Parent(s) Living in the Community

Learn to separate the care you provide to two parents, especially if one has greater needs than the other. Ensure that you don't bring the stronger parent down by placing too many caring demands on him or her.

Look after yourself. A "burned-out" caregiver is of no use to anyone. Children of immigrants are used to taking care of everything, but when a parent needs physical care giving, the burden is greater, so give yourself a break! Realize you have limitations and get help if you need it. Read the information on caregiver burnout and practice the tips provided.

Try to appreciate that you are doing your best. Don't become trapped into feeling guilty for "not doing enough." You are doing what you can do, and must also live your life.

Get help from others. Most families do not fully use the community services available to them. They may be unaware of services or confused by eligibility criteria and paperwork. Survivors may resist having "strangers" in their homes, and families should expect to invest extra supportive time when a new caregiver arrives on the scene.

Anxiety about the expense of hiring outside caregivers may be another burden. Don't underestimate the value of having respite (for yourself, your own spouse and children), and also the advantages of consistent care for your loved one. Know that help is available, and find out exactly what such services can do for you. In some communities, respite volunteers may be able to provide companionship if your parent is willing to receive this help.

Keep organized. Maintain copies of your parent's health and medication records so you can provide this information when necessary. Part of this package should include a brief (half page) personal biography of your parent, underlining his or her Holocaust experience, as well as post-War accomplishments. This reminds outside caregivers that each Survivor is a strong and resilient person with a history of sorrows, joys, talents and achievements.