Effects on You as a Young Caregiver
You Grow Up Faster
When you get thrown into a tragic situation like this, your responsibilities grow significantly. You need to obtain and understand complex health information, you may face social isolation or feel deprived of the lifestyle you want, and sometimes you’re forced to manage serious situations.
If you have a severely ill loved one, you need to take care of yourself in ways your friends don’t. You organize your own schedule as any adult would, and may help with caregiving responsibilities, grocery shopping, dinner preparations, laundry, and walking and feeding pets. This can generate satisfaction — independence is empowering — but it can also create jealousy and sadness. When it seems that other kids receive more attention and support from their parents (most notably both parents), and have fewer chores and more time to spend with friends, it can lead to a lot of inner conflict and resentment. These feelings can serve as warnings for more serious issues such as acute anger, violence, and depression that could arise if you don’t talk to someone about them.
Growing Up Too Fast
One psychologist calls it “false maturity.” Sara Arnaud, PhD studied children caring for parents with multiple sclerosis — not quite the same, but it’s also a neurodegenerative disease — and summed up the issues:
- You as a child caregiver face increased responsibilities in caring for yourself, your ill parent, and maybe your younger siblings.
- In doing so, you assume a comparatively independent, seemingly mature role at an age when you might not be able to achieve a genuine flexible maturity (which comes only with age and experience).
- Responding to these demands could be an effective way for you to deal with the realistic challenges of your life situation, gain your parents’ approval, and relieve your feelings of anxiety and guilt.
- Another set of ingredients complicates the situation: The agitation surrounding your family’s situation adds to your need for attention and care. But instead of receiving a significant amount of your family’s attention, as you did at one time,your ill parent has become the primary dependent. This requires you to suppress your desires to be taken care of long before you outgrow them.
Compared with other adolescents, those living with someone who has a chronic illness may show higher levels of:
- General anxiety
- Body or image concern
- Dysphoria (fancy word for sadness or depression)
- Relationship problems
- Dependency longings (wanting someone to take care of you)
- Precociousness (acting like an adult before your time). This starts with assuming too much responsibility too early; sometimes it’s carried to the point where you lose emotional spontaneity because you’re always trying to figure out what people need from you. You can become almost robotic in your maturity.
- In general, boys in these circumstances tend to exhibit more unhappiness and aggressive hostility, while girls gravitate toward obedience.
Arnaud also says feelings of unhappiness arise from several different places:
- Your pity and concern for your ill parent
- Seeing your well parent’s occasional despair and depression
- Your own anxieties and guilt, and from theloss of having someone take care of you. This includes an awareness that you don’t get many of the family outings and recreational pursuits your friends enjoy.
Why is this a problem? Hostile feelings could arise from your resentments toward your parents because of their increased demands on you — out of necessity — and because they have exposed you to suchdistressing conditions. These feelings may not be conscious or even logical, because everyone knows the situation is not anybody’s fault. However, they can still evolve into negative emotions toward your ill parent, whose behavior is irritable and inconsistent.
Your relationship with your parents, especially the one diagnosed with dementia, tends to be wrapped in conflict. But it doesn’t stop there. This trickles into your friendships. Your experience with your loved one’s unpredictability, for instance, teaches you to remain extremely cautious with everyone. As a result, all relationships lack trust and become laced with insecurity.
Taking Care of YOU
The Danger of Compulsive Caregiving
The pattern of compulsive caregiving occurs when you emphasize the importance of giving care in relationships rather than receiving the attention you need and deserve at this stage in your life. In some ways, you become the parent to someone who is supposed to be nurturing you. But it’s only when you take the situation to an extreme level that it becomes a problem. It can lead to unhealthy attachments and dysfunctional relationships later in life, because you lose your ability to ask for care or help, yet you may foster a pervasive desire for exactly that. Widening the gap between what you need and what you get (or are able to ask for) creates animosity and unhappiness.
As detailed in a scientific paper by West and Keller from the University of Toronto, compulsive caregiving leads to a dangerous pattern, leaving you unable to accept care and love in healthy, reciprocal relationships. Instead, you focus on giving all of yourself— at your own expense. So make sure you learn to ask for what you need, and allow yourself to be taken care of once in a while, too.
Have you heard about people so unable to cope with their reality that they create intricate deceptions — often online — to get away from it all? If you find yourself spending an inordinate amount of time on the Internet, or engaging in activities that don’t really represent you (we’re talking sex, drugs, alcohol, creepy electronic interactions, or other illicit or illegal pursuits) to find relief from your painful situation, it’s time to talk to someone about it.
Most people agree that caring for someone with dementia is more challenging than dealing with physical ailments, because when a person you love disappears intellectually and emotionally, it’s natural for you to question your own reality. A little escape with your friends, your sports, your music — all of that is healthy. In fact, it’s essential! But when you start living in another universe, don’t lose your way back home. Reach out to your healthy parent, a sibling, a friend, your school counselor, or someone on the medical team. Don’t let someone else’s illness take your life, too.
Answering Questions about the Illness
Sometimes people unintentionally ask tough questions such as, “What’s the matter?” It may be their way of trying to figure out a way to help you, or they might misunderstand and think that your loved one could endanger you. The brief answer that everyone can understand sounds something like this:
“My father/mother has a dementia that causes him/her to be overly talkative/impulsive/very impatient/unable to speak [choose whatever symptom is currently showing].
Some families handle this by carrying copies of a “To Whom it May Concern” letter so they can leave it with the person who has inquired about the situation. The acquaintance (or stranger, in some cases) can then read the explanation about your loved one’s diagnosis of frontotemporal Dementia, which prevents you from standing there and holding a sensitive conversation in front of your parent.
Written by Tiffany Chow, M.D. and Katherine Nichols