The loneliness of the long distance dementia caregiver
Caregivers are number one, as far as we’re concerned. Unfortunately, one is the loneliest number; even when adding the care receiver to the equation – let’s just say that sometimes two can be just as bad as one. Often there is a divide between caregivers and society at large – enforced by either the former or the latter and sometimes both. Moreover, spending all of your waking hours with someone who is a loved one but who doesn’t recognize you anymore – someone who in the best of cases ignores you and at worst, in the words of Lou Reed, someone who actively despises you (who actively despises you) – can be hell on your own mental health. Next thing you know, somebody’s having rat for dinner.
In addition to loneliness, the dementia caregiver may go through other related emotions such as:
· Grief. This feeling usually accompanies loss. Although your loved one is still alive, you may feel you have lost him or her to dementia. Thus, you may not grieve for the loss of that person’s life, but the loss of who that person used to be, the one you used to know and love. What’s worse, instead of dying all at once, the patient actually dies a little more each day, continually renewing the feeling of grief.
Tip: Join a support group, either locally or online. And remember that there's such a thing as good grief. Just ask Charlie Brown.
· Embarrassment. A person who has dementia may display inappropriate, unpredictable, erratic, aggressive and even violent and sexually disturbing behavior. Though this is the disease acting up, you may still not be able to help feeling embarrassed for the person, further straining your relationship with him or her.
Tip: Share your feelings with other caregivers who may have gone through a similar situation. Explain to your friends and neighbors what they can expect from a person with dementia so they may feel more inclined to sympathize than to condemn.
· Anger. You may become angry at the person you care for and/or at the disease, as well as at yourself, the doctor, your family and friends, etc.
Tip: It’s important to have a support network including friends, relatives, and professionals; a safety net to help you overcome your anger should it grow to the point where you may hurt yourself or others.
· Guilt. Finally, you may feel guilty precisely for having been embarrassed of and angry at your loved one. You may also experience guilt over the perception that you’re not doing enough; for example, you may think that placing the patient in a nursing home is tantamount to washing yours hands of him or her.
Tip: Once again, talking to other caregivers who have gone through the same may be extremely helpful.
A Guide for the Lonely Caregiver
· Do take sides within the family. Family can be of great help of be a great obstacle, but it’s seldom either one or the other. There usually are shades of grey. Therefore, accept help from those relatives who are willing and able to help you, and ignore those who aren’t and those who not only aren’t part of the solution but are part of the problem by criticizing your performance as a caregiver without even making the effort to learn about the dementia.
· Sharing is caring. Sometimes just talking about your challenges as a caregiver gives you the needed perspective to overcome them. Other times, a passive listener may become an active helper. You can even preach to the choir – so to speak – and share your experiences with other caregivers in a support group.
· ‘Me’ time. You should set aside time for yourself to do something that you enjoy or to take care of your responsibilities outside of caregiving – including responsibilities to your own physical and mental wellbeing, such as exercising and seeing a doctor regularly. Furthermore, keep in mind that ‘me’ time is not the same as ‘alone’ time – it should also be an opportunity to socialize with other loved ones in particular and other human beings in general.
· Recognize your own limits. There is so only so much you can do by yourself as a primary caregiver. Beyond that point, every carer must realize that there is strength in numbers. You see, sharing is not just about sharing your feelings and concerns, but also about sharing the workload. Sadly, many caregivers are adamant about not being relieved of their burden; more often than not, they crumble under the weight.
· Do not play the blame game. Remember the ‘It’s not your fault’ scene in Good Will Hunting? Well, it’s not your fault, and don’t say you know that because you don’t. It’s not your fault. It’s not your fault that your loved one has dementia. It’s not your fault that your relationships with friends and relatives have deteriorated – and it may not necessarily be the fault either, for that matter. Instead of laying blame all around, communicate with them; try to find a way to patch things up. Having others in your life is essential for a caregiver; a friend or a sibling is not something you can afford to lose over pride or miscommunication.
· Ask for and follow advice.
· A winner is you (plural pronoun). The primary caregiver is about the most important person for the dementia patient, but not the only one. Caregiving is a team effort. A relay race instead of a marathon, if you will (in keeping with the article’s title’s analogy). Or using another sports metaphor, you’re the quarterback; as such, your teammates need to protect you, but you also need to make sure you pass the ball instead of attempting to score a touchdown by yourself.