Worrying About Mom and Dad – Caregiving Tips
JSSA Senior Services and JSSA Hospice Staff
“My parents are getting by on their own, but just barely. My father has emphysema, and my mother bears a lot of the responsibility for him. It’s very hard for her to maintain their apartment, cook, help my dad with bathing and dressing, do laundry, and care for herself. I try to help as much as I can, but I have a job, a husband, and two kids of my own. I’m worried what will happen if Dad gets sicker or if, heaven forbid, something should happen to my mother.”
– Mrs. C.
Calls like this, from adult children worried about their aging parents, come into JSSA every day. And the questions they raise – the care of older adults who are frail or have chronic physical conditions – are ones more and more of us face every day.
Along with advances in medical science that increase the life span comes, for many of us, a longer period of life that may be characterized by frailty, memory loss, and other effects of aging. Care at this time is a concern shared by seniors and their children.
Beyond questions of physical safety, the care of those too frail to care for themselves often raises other, more difficult issues:
• The desire to remain in their own homes, even if independent living is no longer safe or feasible
• Reluctance to accept help from caregivers who are not family members
• Changing dynamics in the relationship between older parents and their children
• Dual (and sometimes competing) responsibilities to one’s own spouse and children, as well as to aging parents
JSSA can help older adults and their families deal with all of these issues – and more.
JSSA as a Resource
Every year, thousands of families seek JSSA’s help with concerns about aging loved ones. Some, like Mrs. C., call because they fear that a tenuous living situation will break down. Others call in crisis: the caregiving spouse has become ill, and the frailer spouse is left alone.
Regardless of the circumstances, JSSA can help. “We address these issues every day,” said Ellen Pskowski, LSCW-C, a JSSA social worker experienced in dealing with seniors and their families. “If there’s an immediate crisis, we work to resolve it. We also help families develop long-term care plans that try to answer the many ‘what-if’ questions inherent to older adults.”
JSSA’s help often begins with a planning session, Pskowski said. “A family realizes that a senior’s living situation may have to change,” she said. “We can explore all the options without the pressure of having to resolve an immediate crisis. Then, when change is needed – because of declining abilities or crisis – we can help put the plan into action.”
For a caller such as Mrs. C., a JSSA consultation could explore assisted living residences; in-home assistance with personal care, laundry, cleaning, and shopping; respite care facilities; home health care; adult day care and other services Mrs. C.’s parents may need at some point. In fact, Mrs. C. called several months later, when her mother was hospitalized, and JSSA helped implement the care plan they had outlined for just this type of emergency.
The key element in working with older adults and their families is preserving as much autonomy and independence as possible, Pskowski said. “Older parents must deal with many changes and losses,” she said. “We want to help them preserve what gives value and meaning to their lives.
The emotional issues involved in caring for a frail parent can be confusing and complex, Pskowski said. “Care of an aging parent can be extremely stressful, magnifying issues and tension in a family.”
Older adults, Pskowski explained, “don’t like being dependent on their children, but often won’t accept help from outside their own family. Conversely, they don’t want their children to have to worry about them, financially or otherwise.”
Adult children of seniors deal with equally daunting problems: feeling guilty that they’re not doing enough for their parents; feeling guilty that they are doing too much and letting other responsibilities fall to the wayside; feeling overwhelmed by the needs of their parents, children and spouse; grieving the changes they see in their parents; disagreeing with siblings who don’t see the problems and solutions in the same way.
“We have years and years of experience at JSSA providing counseling around these issues,” Pskowski said. “No one should hesitate to call and say ‘This stress is really getting me down.’ We can provide a supportive and listening ear as well as practical advice through all these adjustments and changes. You should never accept the feeling that you have to struggle alone.”
If a senior, like Mrs. C.’s mother, needs care at home after a hospitalization or illness, JSSA can meet that need as well. Premier Homecare, a subsidiary of JSSA, can provide skilled nursing assessments and home support services.
Older adults recuperating from illness or surgery often need home-based care. In addition, JSSA social workers provide emotional support to the older adult and to family members.
End of Life Issues
When the news that an acute condition is terminal or a chronic health condition is at its end stage, JSSA’s home-based hospice can be of enormous help. As with long-term care planning, it is beneficial for the patient and the whole family to come to JSSA before the final few days of life.
Mrs. C., for example, understood that hospice could be a possibility for her father. She knew he would want to be in the comfort of his own home, in familiar surroundings. Hospice allows families– and patients of all ages – to let their loved ones spend their final days at home, or where ever they currently call home. So when his emphysema worsened, Mrs. C. called JSSA’s hospice program. “We want families to call JSSA Hospice sooner rather than later, because then we can provide a greater breath of support and assistance for a longer period of time. We can help a family access a whole network of services, and we have time to focus on the quality of the person’s life.”
Patient comfort and self-determination are the foundation of JSSA’s hospice services. Families have 24-hour access to nurses who are specially trained in pain and symptom control and are sensitive to the needs of the entire family.
“Anyone who learns he or she is at the terminal stage of illness may need help absorbing the news, making decisions, and tending to relationships,” notes Suzanne Adelman, LCSW-C, a JSSA Hospice clinical supervisor. “We can help cope with all of these issues.”
When the patient is an older adult, the issues may involve bringing together family scattered throughout the country. Hospice can facilitate the gathering, “to help people share feelings, to support the various family members, to make sure everyone gets heard, to address difficult concerns in a sensitive way, to resolve painful issues of the past.” Families may want to talk about topics such as forgiveness, guilt felt by adult children, and friction between siblings.
In providing support, hospice social workers follow the patient’s and family’s lead. “There are no rules or absolute ways to do it right,’” notes Adelman. “We meet people where they are (emotionally), and walk with them where they want to go.”
A Continuum of Care
All of us, if we are lucky, will age. No one, however, promises the road will always be a smooth one. But JSSA can – and does – help thousands of families every year over the bumps along the way. JSSA’s help can be modest: such as a consultation about living options. Or it can be long-term: through case management over several months or even years. And it can also be intense: home support services and hospice care. At any step along the way, JSSA can be a resource.