Caregivers are wonderful people! Many caregivers serve selflessly in caring for their loved ones, and in the process they provide millions of dollars of service at no cost to society. This does not mean, however, that there is no cost to providing this care. Unfortunately, the cost is often borne by the caregiver, not only in lost income, but also with the caregiver’s health. In fact, a study published in the Journal of American Medical Association (December 15, 1999) found that caregivers under stress were 63% more likely to die than non-caregivers with the same demographics.
This is why we at Keystone often refer to caregiving as a “Team Sport” rather than an “Individual Sport.” Stress for caregivers increases with the decline in function, both physical and mental, of the loved one for whom they are caring. While a caregiver may be able to provide all help needed early on in caring for a loved one, the stress will become overwhelming as time goes on. In a previous article I discussed some of the reasons caregivers are reluctant to get the help they need. In today’s article I would like to review some of the help that is available.
Offices of Aging- Different counties use different names, but all of them will have the word “Aging” in the name. Due to funding limitations they cannot provide as much help in the home as they used to provide, but they still operate the “Family Caregiver Support Program.” They also provide information and referral for senior adult services provided through other agencies and organizations.
Adult Day Programs- The central feature of these programs is that the older person needing care or supervision goes to a center during the daytime, up to five days per week, giving the caregiver at home a respite from the demands of caregiving.
LIFE Program The website for the PA LIFE program gives the following description. “Living Independence for the Elderly (LIFE) is a managed care program that provides a comprehensive all-inclusive package of medical and supportive services. The program is known nationally as the Program of All-Inclusive Care for the Elderly (PACE). All of the PACE providers in Pennsylvania have the name ‘LIFE’ in their name. With this program people go to a day center for up to five days per week, and receive supplemental help at home instead of being placed in a nursing home. The cost is less than a nursing home would cost and these programs also accept Medicaid for payment. Cumberland, Franklin, Lancaster, and York counties currently have LIFE programs.
Alzheimer’s Association- Not only do they provide information on dementia and how to help someone with dementia, they also operate a 24/7 Helpline (1-800-272-3900). In addition to these services they have information on support groups for caregivers of adults with dementia.
Respite Care- Many Personal Care Homes and Nursing Homes provide respite care on a space available basis. This can give a caregiver a needed break from caregiving, or allow a caregiver to take a vacation or participate in a family get-together such as a reunion, or wedding, or the birth of a grandchild.
Private duty help- There are a number of agencies which provide private duty care. The Directory of Services on Keystone’s website, www.keystoneelderlaw.com, has a listing of these agencies under the heading of “Home Care Agencies.” This help is normally an out-of-pocket expense. However, some long-term care insurance policies will cover private duty help. Wartime veterans and their surviving spouses may be able to get financial help from the VA. Other people use reverse mortgages to get the funds needed to pay for private duty help.
Community Organizations- It is good to find out what local community groups do. For instance, Jewish Family Services of Harrisburg provides a variety of services for older adults. Many religious worship centers have volunteer help for those who are a part of their community.
Support Groups- Many individual caregivers feel isolated and alone. This compounds the stress these caregivers experience. A support group can provide a wonderful release because you find out you are not alone in what you are feeling and experiencing as a caregiver. Your local Aging office is likely to have information on support groups. Some newspapers print listings of support groups. Many organizations that focus on a particular disease have information on support groups relating to that particular disease. A support group can be a key to helping you be a more effective caregiver.
On-line resources- There are many on-line sites that have good information for and about caregivers, but space will only allow me to list a couple of them. www.caregiving.org is the website for the National Alliance for Caregiving. They have helpful publications and links to other sites for additional information and resources. www.learningcenter.pahomecare.org provides courses on how to provide care for older adults. It is open to both family caregivers and professional caregivers.
Family and friends- I would be remiss if I did not include family and friends as a resource for caregivers. Probably what holds most caregivers back is that they do not want to admit to their friends and family that they need help with caregiving, but there is no shame in admitting we are not superhuman. Often what family and friends need to know are the specific ways help is needed: for instance, someone to stay with your loved one while you go shopping, to the doctor’s office, to the beauty/barbershop, to do errands, or just to have some time to call your own. Maybe help is needed with household tasks that are hard to get done with the amount of time caregiving requires. The important thing is that you do not allow some sense of embarrassment keep you from getting help with your loved one’s caregiving needs.
It is difficult in a short article to cover all the possible sources of help for caregivers, but I hope this review of some of the help available will let caregivers know they do not have to sacrifice their health in order to provide the care their loved ones need.