Understanding the Needs of the Caregiver and Care Receiver

By Guest Blogger, Fay D. Wein

Introduction: According to a recent study headed by Susannah Fox, associate director of the Pew Research Center's Internet and American Life project, Americans are living longer not only due to advances in medicine, but as a result of the excellent care that is being provided by adult caregivers upon their release from the hospital. Although we now have more life extending treatment than ever before, seniors are often released from the hospitals in very fragile states, and it is the at-home caregivers that are the first line of defense.

A quick glance at the staggering numbers:

Almost 70 million adult children provide care to an elderly relative according to recent stats. The majority of these selfless caregivers provide at least 20 hours of weekly care without compensation. About 50% of these family caregivers work full time jobs in addition to their caregiving duties and 11% worked part time jobs.

The amount of money this care saves the government is something to the tune of $450 billion as estimated in an AARP study, and the phenomenon is only growing. Clearly, family caregivers are an indispensible asset in our great country, and it behooves us to take a closer look at the needs of both the caregivers and recipients for the benefit of society at large.

CAREGIVER NEEDS

Emotional support.  Caregiver burnout is unfortunately all-too-common and the importance of a strong support system cannot be overstated. There are many aspects when it comes to receiving the emotional support one needs, including family support, social circle and support groups.

When family members pitch in and help one another, even when one adult child takes the brunt of the load on their shoulders, it can have a great impact on the emotional well-being of the caregiver. Many times all one has to do in order to receive that helping hand is to ask for it. While a caregiver is an everyday hero, he or she is not superman. By delegating responsibilities, the caregiver gets some much needed rejuvenating respite.

Those in the caregiver’s social circles will generally offer to pitch in with a vague ‘if there is anything I can do just give me a ring.’  It is not always easy, but as a caregiver-take them up on it! Full time care giving is no easy feat, and spreading some of the duties beyond the family can make a real difference. 

Support groups are an invaluable resource for the emotional well-being of a caregiver. Just the knowledge that there are others in a similar situation can work wonders in addition to the indispensible advice, insights, and coping tips that can be learned. There are programs that offer day care or other volunteer services which can be very helpful, as well. Ultimately, reaching out to others for support will benefit both you and your loved one.

     Personal needs: Care giving can take up a life of its own, and lead to the neglect of the caregiver's personal needs and family. Many caregivers have had their health deteriorate as a result of overextended care, according to a NAC study. Care must be taken not to allow caregiver duties to infringe on one’s work schedule or to neglect one’s own family needs or household duties.

If a caregiver begins to see an unhealthy pattern of personal neglect, depression, lack of sleep, etc. or that the loved one requires more intensive care, it may be time to consider other care options, such as a skilled nursing facility. Sometimes the help of a professional Medicaid planner is recommended when one is at that critical juncture and needs professional guidance with Medicaid-sponsored nursing home care which can be quite pricey when paid out of pocket.

     Financial help. In some states Medicaid offers a Cash and Counseling program that will cover in-home care for those below the asset and income levels for that particular state. Health care professional are aware of the many benefits of a family member proving care to their loved one and allow for payouts to be made to the senior to pay for their own care as they see fit. 

 This policy comes as opposed to the traditional Medicaid coverage method where they collaborate with professional home care agencies that do not always provide the care on a consistent basis due to bureaucratic backlog and switching of caseworkers.

This program is available in 15 states and some other states offer funding for in-home care for those just above the income or asset limit for Medicaid. Caregivers should thoroughly research their options and find out if their state offers this type of funding.

CARE RECIPIENT NEEDS:

Safety and security.  A senior receiving care needs to have their safety and security needs met first above any other need. They need to be able to safely go up and down the stairs in their own home, get in and out of the bathroom, have access to any emergency device they may need and, in case of a fire, be physically able to leave the premises in a safe manner.

They also need to be secure in the knowledge that all their physical and medical needs are being met, such as, they are eating their daily meals, taking their medication on schedule and do not have to worry about getting lost around the corner of the house they’ve lived in for the better part of their lives.

     Dignity. It is common for caregivers of a loved one with dementia to revert to a parenting role and talk down to the person they are caring for. It is important to separate the dementia from the person suffering from it by keeping a picture of the victim before dementia in mind and speak to them accordingly

Caregivers need to be careful with their tone of voice to make sure that they are not treating seniors like a children, and exercise caution with word choice as well for things like diaper, bib and potty, substituting these for more dignified variations, like padded underwear, apron and using the restroom.

Use therapeutic “fibbing”. This is the process of not telling the whole truth to a person with dementia due to the pain it may cause them. So for example, if your elderly dad wants to get into the car and drive to the pharmacy hide the car keys or offer to drive him instead. Do NOT tell him that the doctor advised against it which will only cause pain and resentment. These are just some of the areas in which we can maintain the dignity of our elders while provide for their care. The key is: be sensitive to their feelings.

     A smiling face. The affect of administering care with love and a smiling face, has been proven to help those with dementia, maintain a sense of emotional balance and it enhanced their self image, especially those in an early stage of dementia. This has helped them experience less anxiety and get more satisfaction out of life.

Conclusion: Family care-giving is an important part of the senior health care system. Many suffer financial setbacks in their careers as a result of balancing their work and care-giving schedules and a large percent has opted to give up their job altogether in order to care for their parent.

These men and women deserve to be saluted for their humanitarianism and be offered the support and information that can help them fulfill their duty more easily.

Fay D. Wein is a content and communication specialist at Senior Planning Services, an industry leader in guiding seniors and their families through the Medicaid maze, servicing NY, NJ, CT and PA. Fay loves cooking, blogging, and spending time with her family.