The Family Caregiver's Manual. David Levy
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Caregiving issues: Balancing the demands of two distinct types of caregiving (child care versus family caregiving for elders), both of which are likely to increase as Eleanor’s children get older and more active socially. Determining the nature and potential severity of her grandfather’s memory loss, whether treatment is available, and, if not, what may happen over time.
Concerns affecting approaches to tasks: Growing frustration due to having to put her own plans on hold and unknowns about her children’s welfare. She is lonely and wants to add to her own life with some adult companionship. She is using caregiving and child rearing as an excuse not to get out, in spite of her mother-in-law offering to watch the children and help out in other ways.
Solutions available now: See what her church offers in local child care. See if there is a senior center where her grandparents might find social interaction. Does the VA have survivor’s benefits in addition to the child-care stipend that Eleanor and her children might be eligible for? Does her workplace have an Employee Assistance Program (EAP) that might help her work out plans for her children or grandparents?
Changes that may alter which solutions work: Further deterioration of either of her grandparent’s health, changes in her work circumstances (e.g., a promotion that requires her to spend more time working, slower salary growth due to a perception held by her manager that she is not working as hard as she should), or her son’s asthma getting worse and requiring more of her time and money to keep him healthy.
Creating more positive outcomes: Eleanor needs to learn more about her grandparents’ financial resources so she knows what she has to work with for their care. If her grandfather does have dementia, she may have to take over management of household expenses and other practical matters he has handled over the years. She also needs to recognize that she does not have to do everything herself. Her mother-in-law, for example, is ready to help with the children at any time. There may also be a local support group for military widows through which she may be able to find emotional and practical support. Also, if her grandfather has dementia, she could join a support group for adult children caring for parents (and grandparents). Eleanor also needs to consider how she is protecting her own children in the event something happens to her.
Ed and Harriet
Ed and Harriet had been very lucky. They ran a successful business together and had been planning for an early retirement (being the same age, both were planning to retire at fifty-five after selling the business), and had a wonderful family. Both of their kids were smart and had a great work ethic. Their daughter, twenty-one-year-old Coral, was working toward a veterinary degree. Their son, nineteen-year-old Ed Junior, was planning on being an engineer. Everything was working out perfectly. Then the accident happened.
Ed Junior had a passion for competitive diving and stayed in the water as much as he could. A few months ago, he and a friend went to Fort Lauderdale to visit Harriet’s sister Ellen. They were having a great time, swimming in the ocean, scuba diving, and hanging around the pool at Ellen’s housing complex. A couple of days before the boys were scheduled to return home, Ed Junior was playing around on the diving board at the housing complex pool, and he slipped and fell off the high diving board ladder. He fell backward and landed in a way that broke his neck, and he was left paralyzed from the neck down. Everyone hoped the paralysis would be temporary, and he would recover, but it is now clear it is not temporary and nothing further can be done. Ed Junior was transferred from a Florida hospital to take up at least temporary residence in the best extended-care facility near home, but he wants desperately to come home to be with the family.
The bills for insurance deductibles and specialized care are thousands of dollars, and Ed and Harriet’s bank accounts are dwindling fast. Their three-story townhouse is in no way ready to accommodate Ed Junior’s special needs. Coral is getting ready to begin her advanced degree program, which means more dollars will have to be added to her already high tuition. Ed and Harriet have to keep the business going, which takes both of them.
Observations
Here are a few observations about Ed’s and Harriet’s caregiving concerns. Much more could be said. What other observations do you think are important?
Responsibilities: Self-care, a father’s need to care for his family, a mother’s need to care for her children, educational expenses, work demands, fulfilling parents’ needs for social engagement, working together as a couple, maintaining a marriage.
Specific family circumstances: Ed and Harriet are concerned about paying for their daughter’s education, as well as Ed Junior’s care needs and, they hope, his continuing his education. They need to find out if Ed Junior will qualify for Social Security Disability Insurance (SSDI). Posted near the swimming pool diving board were two signs that read, “Dive at your own risk,” so Ed Junior’s legal rights may be limited.
Ed and Harriet see themselves having to put their plans for early retirement on hold because already their financial resources are being reduced, and they find this frustrating and disappointing. They are concerned about Ed Junior’s physical condition, his mental and emotional health, and whether they will be able to meet his expectation of coming home—and how that would affect how they live their own lives.
Caregiving issues: The care that Ed Junior will require if he comes home is unknown, and he is in a short-term care facility. How to figure out what happens next is a challenge. They need the help of a good disability attorney to understand the technicalities of what is available.
Solutions available now: Continue to work together as they always have to solve problems, finding out what would be necessary to bring Ed Junior home and how his physical care needs are to be provided for. They need to take a fresh look at financial resources (including insurance options, especially under the newly enacted Affordable Care Act) to see how to improve their total financial profile in light of current demands. Seek out specialized support from organizations that address spinal cord injury issues (including support groups). Determine whether existing insurance coverage and discretionary savings can be used for uncovered and additional expenses. Their lifelong experience working as a team and good business sense might be used as a foundation for practical problem solving related to family caregiving (e.g., knowing that trained professionals may offer good advice).
Changes that may alter which solutions work: Decline in Ed Junior’s physical or mental health, reductions in financial resources, letting personal frustration of their own expectations overcome them, current research in spinal cord injury (e.g., stem cell regeneration) that is showing positive results for treatment and recovery.
Creating more positive outcomes: Was negligence part of Ed Junior’s slip and fall from the ladder? If so, they may need to consult a personal injury attorney to consider a lawsuit and a disability attorney about a Special Needs Trust to maintain the proceeds of a possible settlement in order to allow future coverage under SSDI, Medicaid, etc. It might be useful for Ed and Harriet to call a family meeting to let Coral and possibly Ed Junior (if he is mentally and physically strong enough) participate in the decision-making process and allow everyone to share feelings and manage expectations. A review of financial resources could be productive; changes may be necessary in how resources are managed and new options could be put into place (e.g., a different