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The road to caregiving is filled with challenges and unexpected turns. Sometimes those challenges seem like potholes in the road, other days they seem like a multi-car pileup. The following are ten of the top concerns we hear about from caregivers as they manage the road to caregiving.
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- Caring for the Caregiver
- Dementia
- Finances
- Family Dynamics
- Finding Resources
- Legal Issues and Advance Directives
- Medicare, Medicaid, and Long Term Care Insurance
- Physicians, Hospitals, and Placement Decisions
- Stress
- Work and Caregiving
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| 1. Caring for the Caregiver |
Self care and caregiving management are the foundation of caregiving. Each caregiving experience is different and not one experience has a “perfect answer” or “plan”. Being a caregiver does not mean being personally responsible for every request, or that everything that goes “wrong” is the caregiver’s responsibility.
Caregiving is the act of balancing a full array of resources to adjust and adapt during constant change. The vital role of the caregiver is to help create a workable care plan that meets the need of the care receiver while allowing the caregiver a functional, full life with time for respite. This is accomplished by creating a detailed care plan, setting specific goals, locating vital resources, researching the disease or conditions faced by the care receiver, setting boundaries and allowing help from the outside.
| Caregiver Support offers free consults and family meetings for caregivers in Salt Lake County. Long distance caregivers whose care receivers live in Salt Lake County will need to come to Salt Lake County for the consult, or may call us at (801) 468-2460 to have needs addressed. All members of our staff are required to have caregiving experience before working for Caregiver Support. Our Case Managers are certified Social Workers and are well experienced with the various options, companies and challenges involved in caregiving in Salt Lake County. A variety of resources are available in Salt Lake County, see http://www.55plusbook.slco.org/ and the Resource Roadmap (available for download at the left-hand side of this page). | |
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| 2. Dementia |
Dementia is the “deterioration of intellectual faculties, such as memory, concentration, and judgment, resulting from an organic disease or a disorder of the brain. It is sometimes accompanied by emotional disturbance and personality changes.” (http://www.thefreedictionary.com) The most commonly known form of dementia is Alzheimer’s Disease. (http://www.alzutah.org)
Debates continue regarding the causes of dementia — factors such as genetics, diet, brain exercise, preservatives, and aluminum consumption are all being researched. There is no known cure for dementia, but medications do exist that can slow specific forms of dementia, such as Alzheimer’s. Some forms of dementia stemming from strokes, substance abuse or sleep disorders can be improved or cleared if treated and caught in time.
It is important that individuals with symptoms of dementia receive a complete physical to determine type and cause so that the proper form of treatment can be arranged and the disease can be managed. This is a complex diagnosis and can be misdiagnosed. It is recommended that all patients request a second opinion.
| Caregiver Support offers basic classes in communicating with individuals with dementia and coping with dementia as a disease — from the caregiver’s perspective. For more information about these classes see the Resource Roadmap or call (801) 468-3480. Caregiver support groups and Aging Services programs such as Senior Companion and Legacy Corps can be very useful for families caring for someone with dementia. | |
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| 3. Finances |
Many individuals are living 30 to 40 years after they retire. The traditional retirement plan was not built to withstand the inflations and changes that such an extended retirement can create. Many of our care receivers are in financial crisis, are living at or near poverty, and are even seeking to reenter the work force in any way possible.
Caregivers are caught in the cross fire between their desire to aid their financially strapped care receivers and protecting their own retirement plans—Do I retire early? Use my savings to buy Mom’s medications? Far too often, we hear about caregivers who are depleting their own future funds and capabilities to the point of creating generational retirement poverty or financial collapse. We also see caregivers working much longer than their parent’s generation. There is no easy fix to this situation. So, in the midst of this challenge, what can Salt Lake County Aging Services and Caregiver Support do to help?
Salt Lake County Aging Services has a variety of programs and services that can help during challenging times. To name just a few — Senior Employment can help those reentering the work force, and the Alternatives Program can assist low income and Medicare Waiver clients. Caregiver Support can provide short term respite, as well as free consults and training. Senior Companion and Legacy Corps can provide a stipend for those who volunteer or can provide a volunteer visitor in the home that a family would not need to pay for. Transportation can provide rides to vital medical appointments and Meals on Wheels can provide meals to homebound seniors.
For more information on all these programs, their qualification and waiting lists, call us at (801) 468-2480 or see our home page at http://www.aging.slco.org. | |
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| 4. Family Dynamics |
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Caring for a spouse or parent can often put strain on a family. Pressure stemming from aging, change and uncertainty can lead to raised emotions, sibling rivalry, difference of opinion, denial of a parent’s condition and many other challenging situations. Family members often accuse each other of not doing “a fair share”, taking advantage of an ailing parent, or even theft and abuse. Rivalries between children, step parents and extended family are complex and are not easily overcome. There are interventions that can be very helpful.
- A review of a care receiver’s legal documents such as the Advanced Directive and Health Care Power of Attorney will create boundaries that the family is required to work within. This review often stops those who challenge the primary caregiver’s decisions on behalf of the care receiver, or bring the caregiver back in line with the wishes of the care receiver.
- A family meeting negotiated by an outside party, such as a trusted family friend, cleric, attorney, or social worker can give each family member a level playing field on which they can each present their opinion or information. This is especially helpful if no legal directives were created by the care receiver.
- A family care calendar and clear expectations are very helpful for families. Everyone should know, as much as possible, when they are expected to perform tasks. This includes knowing when each member might be “on call” to back up another family member in case of emergency.
The greatest gifts a family member can offer a primary caregiver are time to help with tasks, compassion and support; however, not all people are, by nature or design, a caregiver. Family members who are not able to perform as primary caregivers or who live too far away to be available on a daily basis can be asked to play a different role. For example, they can be asked to provide financial support for outside care help, such as cleaning, bathing or day care. Each member of the family must decide for themselves what role they are willing to play. Another option is to find appropriate services and programs in the community.
Being a primary caregiver does not mean you must take on all unassigned tasks or responsibilities. This simply means that after the players have all been interviewed and the available resources, time, etc. are reviewed, then outside help needs to be found to fill gaps in the care receiver’s care plan. Abuse, abandonment and neglect statistics are increasing because individuals feel forced into the role of caregiving—a role they do not want and are not capable of. Honest, well-designed family plans, with appropriate outside interventions and services help to insure a safer environment for our care receivers.
| Caregiver Support can provide information on how to hold family meetings, can send a Case Manager to facilitate a consult or family meeting, and can assist with respite services, information and free classes. Please call us at (801) 468-2460. | |
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| 5. Finding Resources |
There is no perfect place to find resources; however, Aging Services has compiled many resource lists, options, and possibilities for the Salt Lake County area. Many of our resources are listed in the 55+ directory, http://www.55plusbook.slco.org/, the Resource Roadmap, or in the Caregiver Support Information Center.
| Please feel free to call us at (801) 468-2460. We can act as an objective third party and may know of resources that are not yet listed, or that might not seem to apply. The Outreach program here at Salt Lake County Aging is also an exceptionally helpful resource. They can be reached at (801) 468-2480. | |
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| 6. Legal Issues and Advance Directives |
Many caregivers and care receivers need help with legal, medical and financial decisions—to make sure that the care receiver’s end-of-life wishes or desires are carried out as planned. In order to make this possible there are several important documents that a care receiver will need to provide to their caregivers:
- Health-Care Power of Attorney (also known as a Health-Care Proxy);
- Advance Directive (also known as a Living Will) (state specific, varies by state); and
- Do Not Resuscitate order (DNR), must be signed by a doctor to be valid
Salt Lake County Aging Services contracts with Utah Legal Services Senior Citizen Law Center for legal assistance to seniors 60 years of age and older who live in Salt Lake County. Legal Services can be reached at by calling (801) 328-8891 or through their website at http://www.andjusticeforall.org/uls/about.html.
The State of Utah issued updated legal forms on January 1, 2008. For updated information on legal issues in the State of Utah, please visit http://seniors.utah.gov/seniors/seniorslegal.html. | |
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| 7. Medicare, Medicaid, and Long Term Care Insurance |
Medicare is health insurance for people age 65 or older, under age 65 with certain disabilities, and any age with End-Stage Renal Disease (permanent kidney failure requiring dialysis or a kidney transplant). Medicare questions are best answered by accessing the http://www.medicare.gov website, or by calling the 1-800-633-4227. The Medicare website also includes information on planning, understanding and financing long term care insurance. Address changes to your Medicare account must be made by calling the Social Security Office at 1-800-772-1213 or by visiting their website at http://www.socialsecurity.gov. Another valuable website is http://www.benefitscheckup.org which offers each senior an individual list of services and programs.
Medicaid is a program in the United States, jointly funded by the states and the federal government that reimburses hospitals and physicians for providing care to qualifying people who cannot finance their own medical expenses. The Utah Medicaid program is administered jointly by the Utah Department of Health and the Utah Department of Workforce Services. Medicaid questions are answered by calling (801) 538-6155 (Salt Lake Area), 1-800-662-9651 (Utah, Idaho, Wyoming, Colorado, New Mexico, Arizona, and Nevada) or by accessing their website at http://www.health.utah.gov/medicaid/.
Salt Lake County Aging Services has Outreach workers who can answer general questions regarding Medicare and Medicaid. Call Outreach at (801) 468-2480.
Current “Medicare & You” booklets may also be picked up at the front desk of Aging Service at 2001 S State St STE S1500, Salt Lake City, Utah 84190 (Government Center, south building). Parking is located east of the building. | |
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| 8. Physicians, Hospitals, and Placement Decisions |
We each have the right to choose which hospitals, nursing facilities, healthcare systems, and doctors we use. We have the right to second opinions, hospital transfers, specialist’s opinions, and professionally researched diagnosis and treatment plans. There are a variety of groups who give us insight, explore what we should be asking, assist in verifying physician certification, and review hospital ratings. A few of these valuable sites can be found on the Information Center page on this caregiver site under the topic Physicians, Hospitals and Care Facility Comparisons.
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| 9. Stress |
“One must pick and choose one's battles in life OR risk living in many emotional foxholes.” ~ Donald Neviaser
We often misinterpret the serious effects of stress on our ability to be good caregivers and well adjusted individuals. Jacqueline Marcell, author of “Elder Rage”, put it very clearly when she said, “when I [gave] up my life to go take care of my elderly parents, both starting to develop dementia, I was surprised to read that caregivers are often more depressed than those they care for, and that they have a 63% higher death rate than their peers. A year later without a day off from my ‘challenging’ father—I was surprised the statistic was that low.”
Stress is a main course item on a caregiver’s menu. It is essential that caregiver and care receiver stress levels be addressed. An annual average of 59% of all substantiated elder abuse cases in the State of Utah are perpetrated by family caregivers. Chronic illness, dementia, loss and other challenges can lead to difficult behaviors, resistance, and even self-neglect on the part of the care receiver. These challenges presented by caregiving compound stress and depression and even breakdown immune systems. These combined challenges can lead to actions of abuse and neglect.
Preventative steps are the best approach to stress management. Make sure your care plan includes private time for you, the caregiver:
- Relaxation techniques, such as deep breathing, muscle relaxation and guided imagery exercises can be powerful bursts of energy and provide just the “breathing space” necessary to get through an otherwise challenging day.
- A 3 day get-away on a quarterly basis, while Mom stays with another family member or in a care facility, also give the caregiver and care receiver a much needed break.
- Using a local Day Care facility or using programs such as Senior Companion or Legacy Corps can allow the ability to get away for essential function, such as shopping, while your care receiver stays in a safe location.
- The crisis hotline is a valuable source of stress relief and is a safe place to unload your frustration. The national number is 1-800-273-8255, or for Salt Lake County call (801) 261-1442.
Many caregivers make the assumption that “this will all be over soon—I can take it a little longer. I mean how long can she live with this disease?” Care receivers are living an average of 7 years after the diagnosis of Alzheimer’s and many cancer and other disease paths can also be extended from 5 to 15 years on average.
It is important to plan stress relief interventions into your daily routine. Never underestimate the power of a good book for 15 minutes each night before you sleep, or the value of a 15-minute power nap in the back yard while a friend watches the news with Dad. Every small intervention is a plus.
Salt Lake County Caregiver Support offers basic classes on stress management. We also offer lunch time support groups for three specific caregiver groups: an adult children’s group, a men’s group and a women’s group. See the Caregiver Support Refueling Station, Resource Roadmap, Calendar of Events, and Information Center for more ideas and interventions. Salt Lake County Aging Services also lists valuable resources in the 55 Plus Directory.
If you are having thoughts of suicide, please call 911 and request immediate assistance. The Suicide Hotline is 1-800-784-2433. | |
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| 10. Work and Caregiving |
Statistics show that caregivers are at increased risk for depression, chronic illness, and overall decline, due to caring for aging parents, raising children, managing relationships, and working full or part-time jobs—all at the same time (http://www.caregiver.org). There are steps caregivers can take to minimize the stress of work-time interruptions brought on by caregiving responsibilities:
- Review your needs with management. Discuss options that include company Employee Assistance Programs (EAP), Family Medical Leave Acts (FMLA), telecommuting policies, temporary assignment or job transfers and other reasonable work adjustments.
- Co-workers will also be more supportive if they know the basics of the situation you face. (IE, excessive calls from a person with dementia, unforeseen runs to the hospital, quiet or stressed attitudes). Be careful not to use co-workers as a constant sounding board or as stress relief. There is a fine line between imparting necessary information and overburdening co-workers with un-welcomed details.
- Create a flexible caregiver self-care plan and maintain it. Eating properly, getting regular exercise and sleep is essential to balancing work and caregiving.
Salt Lake County Aging Services has a variety of programs to support frail, elderly care receivers. This assistance also supports the caregiver by removing some of the worry and frustration of daily care.
Programs include Meals on Wheels, Legacy Corps, Senior Companion, and Senior Centers. Outside help can also be arranged with Day Care facilities and other community programs listed in the 55 Plus Directory. The Caregiver Support Case Managers are also available to discuss options. Please call us at 468-2460. | |
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