The Caregiver’s Second Right:

I have the right to seek help from others even though my loved ones may object. 

 I have the right to recognize the limits of my own endurance and strength.

One-third of all family caregivers are responsible for providing around-the-clock care, and many had no choice in taking on this role.  Caregiving falls most heavily on nuclear families and most often on women. This means little to no free time, and quite often requires making changes in  employment, housing and relationships with others.

It is often hard to admit that we cannot do it all.  We believe we can, and admitting that we need help often feels like admitting defeat.  But just as it takes a village to raise a child, it often takes a village to care for an ill, injured or elderly loved one.  There are many resources to help, but we may need to overcome a few obstacles first.

One obstacle often placed in the path to obtaining assistance is the individual who is relying on you for care.  He or she may not want anyone else’s help and they may not recognize the toll that caregiving can take on their caregiver.  This barrier is most often seen among the elderly and those who live in rural settings who have lived lives of self-reliance.  They may be embarrassed to admit their limitations and needs to outsiders; many are very private individuals; and many are concerned about the costs of additional care or even the security of having “outsiders” inside their home. The suggestion that additional help may be needed is often best received when coming from an “outsider,” such as a health care provider. 

Despite these obstacles, you need to remember that you are not alone -- you just need to know where to turn for help.  To avoid being overwhelmed, start by making a logical plan of action.

Identify your needs:

Make a list of what, when, where and how you could use help.  For example:

·  Do you need help understanding all the medications, treatments, or equipment that may be involved in the care?

·  Perhaps your needs relate to not being able to leave the house- do you need someone to run errands, or drive you and your loved one to appointments?

·   Do you have outside commitments and need someone to stay in the home with you loved one as a safeguard while you are gone?

·  Are you are unable to do more strenuous work, such as cutting the grass, shoveling snow?

·  Do you need help bathing, repositioning or moving the individual? Or,

     ·  Are you burning out? Do you just need a break -- a chance to get out of the house?

Identify your options:

·   Who can you ask for the help and advice you may need? Many turn to other family members, friends, neighbors, church members, and co-workers to seek information on resources in your area, to get reliable references, and to understand costs and limitations.

·  You may find a wealth of free caregiving information and pamphlets at the entrances of grocery stores, drugstores and doctors offices.

·  Others obtain advice and guidance from support groups, the internet, and blogs, such as this one.

·   A telephone call to your regional office on aging can help you obtain literature on available resources, or help you arrange for an in-home evaluation.  These evaluations are a helpful source of answers on home help options, supplies such as personal care items, and dietary supplements. Many of these services are income-based.

·   Seek professional advice.  Make a list of your questions and take them with you to the next doctor’s appointment.  If the doctor is too busy to answer your questions, nurses and social workers are also able to help – and will be an invaluable part of your caregiving support team.  Some caregivers make an appointment just to discuss their questions and needs with the doctor. 

·   Home care, hospice or palliative care services can also be arranged and require physician approval.  (I will explore these options further in another entry)

·   Some nursing facilities offer respite services for short stays to assist the caregiver if fatigue, illness or other family needs require the caregiver to be out of the home.

·   Adult day care is another option for those caring for individuals with memory disorders.  Some even offer transportation.

·   The Veterans Administration (VA) offers many benefits to veterans.  You can expedite services by pre-registering with the VA.

·   Insurance companies are also resources.  Request a case manager who can be a consistent source of help, guidance, and trouble-shooting for you and your loved one.

Verbalize your needs:

As hard as it is, caregivers need to ask for help.  Your friends and relatives may recognize that you need help, but they may not know what they can do.  Others may not even realize you need assistance.  It is essential that you ask for what you need, and it equally essential to have a “back-up” plan if for any reason you are unable to care for your loved one. 

·   Sometimes, it’s easier to ask “strangers,” such as home care agencies or health professionals, for help. 

·   Sometimes, we hesitate asking long-distance family members for help – and we fail to recognize how much they want to be involved.  If they cannot visit, they may be able to offer financial assistance.

·   Sometimes, when out-of-town family members come to help, we forget they are not guests.  Remember:  they are there to be of help to the loved one and relieve your stress – not to be entertained. 

·   If you have a host of family and friends offering care, develop a calendar of who is coming, and the specific help you’ll need from each.