The vast majority of people with a developmental disability are supported in whole or in part by their family. In families where the person with a developmental disability is approaching older adulthood, family caregivers are already in their senior years. As they age, families are no longer able to provide the same level of support for their sons or daughters. One or both parents may require support themselves. Aging is a dilemma for parental caregivers who must deal with their own aging and the aging of sons or daughters with a developmental disability.
Siblings as Caregivers
The aging of parental caregivers will put pressure on siblings of persons with a developmental disability to assume some or all of the care-giving role. However, siblings may be in the midst of raising families themselves or paying the high cost of tuition for their children’s post secondary education. Some siblings may be able to take over the care-giving role from aging parents; however, the extent to which they can provide support may be limited.
The majority of people with developmental disabilities are supported completely or to a significant degree by family. Consequently, most older adults with developmental disabilities are receiving support from parents who are already in their 70’s and 80’s. As older care-giving family members become unable to support sons or daughters, it poses new pressures on other family members and the service system.
The Challenges of Care giving
Paid caregivers can go home at the end of their shift. Family caregivers must carry on day after day. In the words of one family caregiver, ”My life has never been the same. Of course I love my son and would not give up my support role but I am getting older myself and just can’t keep up with the demands being made on me.” Care-giving goes beyond aging to include a number of other challenges:
Loss of Privacy
The daily demands of the care giving role reduce the caregiver’s privacy. In addition to direct support provided by family the requirements of keeping in touch with service providers, coordinating bodies and health practitioners takes up time. The caregiver is left with little personal time.
Social Isolation
The daily demands of the care-giving role reduces opportunities for getting out with friends. Socializing at home may be difficult depending on the needs of the family member.
Emotional Distress
The continuing need to be available, to plan, to intervene and to help is emotionally demanding. Care givers report feelings of helplessness, frustration and resentment. The acknowledgement of these feelings can sometimes lead to the additional distress of guilt. These are all normal human emotions in response to the challenges of continuing care giving.
Respite
There are respite services available for care givers through many long term care programs and homes. The CCAC or a local agency can provide information about respite services.
Rebalancing
Feelings of distress experienced by care givers are a signal that it is time for rest and relaxation. Such feelings may also be a signal of the need to talk with a friend or counsellor about the pressures of the care giving role. Here are a few strategies that care givers can use to maintain balance:
Care for Yourself
Looking out for yourself is not an act of selfishness. It is a means to refuel, renew and rebalance so you can maintain your care-giving role more effectively.
Acknowledge Your Care-giving Accomplishments
The support you provide for your family member means they can enjoy life, remain safe, feel secure and learn. These are gifts you give. They make the difference. Take some time to recognize what you do and to celebrate your accomplishments. Care-giving is a vital role that not only ensures quality of life for your loved one. It also makes your community a better place.
Acknowledge Your Feelings
Feelings are friends that tell us important things about ourselves – but we must listen, accept and act on them in ways that are beneficial.
Get the Help You Need
We all get by with a little help from our friends or a long hot bath. If you need some help, whether it is respite for a holiday, a friend to talk with or some quiet time to yourself, take the time to seek it out. Refresh yourself so you can carry on.
Maintain a Sense of Self
Care-giving can interrupt ability to remember who you are and what you need. Take some time to reflect on your own life, what you need and how you can get it.