Acting as a primary caregiver is a big deal, especially when the person you are caring for has a developmental disability or mental retardation. Here are a few helpful tips we have compiled to ease the load of caregiving.
Who should make medical decisions for someone who has MR/DD?
When your child is a minor, you will make all of the medical decisions. If your child is unable to make his or her own medical decisions as an adult, a person who is legally responsible for making these decisions for him or her must be named. This person should be named in a legal document called a health care “durable power of attorney.” The document allows that person to make health care decisions for the patient. This person is called a health care attorney-in-fact.
The attorney-in-fact should talk to the doctor about treatment decisions or end-of-life care for the patient. The doctor should write these decisions in the patient’s medical chart.
How can I tell if caregiving is putting too much stress on me?
Caregiving can be very stressful. Common signs of caregiver stress include the following:
- Feeling sad or moody
- Crying more often than you used to
- Having a low energy level
- Feeling like you don’t have any time to yourself
- Having trouble sleeping or not wanting to get out of bed in the morning
- Having trouble eating or eating too much
- Losing interest in your hobbies or the things you used to do with friends or family
- Feeling angry at the person you are caring for
Growing up with developmental disabilities: 9 tips from UCSF expert Roberta Rehm
- Start early thinking about the kinds of resources your child is using now, and will need in the future.
- We have found that a lot of parents are quite uncertain about where their youth would “end up” developmentally, and what kinds of skills they might be able to acquire. So, get your courage up and start discussing this with health care and education professionals. Lots of young people with developmental disabilities progress slowly, and they may continue to make progress in adulthood in some areas. Nevertheless, try to realistically assess where your youth will be as they age out of child-focused services, so that you can locate services to meet their immediate needs, as well as provide continued stimulation and growth opportunities over time.
- If there are skills that your youth will need, like riding public transportation, or using money, you can start working on them very early, long before they reach adulthood. Try to gradually increase responsibility and make working on self-management skills a routine part of daily life.
- Learning to manage chronic health conditions is very complex and requires lots of different skills, so the earlier you work with your child to start mastering them the better. Remembering when to take medications, taking them with supervision, calling the pharmacy or the med center (including navigating telephone trees), being the one to answer the doctor’s questions, thinking and making decisions about healthy lifestyles around nutrition, exercise, drinking, smoking, and sexual activities are all things that require supervision over a long period of time. A lot of youth can learn to do these things reliably, and parents need to start transferring that responsibility gradually.