New to caregiving?
Nobody volunteers to get Alzheimer’s, and nobody really volunteers to be a dementia caregiver. Usually caregiving is a job that is thrust upon us with no warning. Unless this has happened to you before, it is fair to assume you were unprepared for the demands caregiving placed upon your time and your emotions. For the adult child (or spouse of the adult child) where did you find the time to sandwich caregiving between a demanding job, a family and everything else in your life? For the spouse with his or her own health problems how do you now cope with those of another?
With great trouble, right?
None of us are prepared to be a caregiver, everything we do, we learned on our own. Few people know where to go for help or how to look after oneself in the face of fulltime caregiving. If you are fairly new to dementia caregiving you can learn from those who came before you. Your circumstances while unique to you are nevertheless very, very common. There are many examples that you can learn from, if you are open-minded. Learn these five things: FIELD
- Find a network that can provide you with information, products and services.
- Investigate possible support systems, both emotional and psychological.
- Educate yourself on the conditions that you are going to face.
- Learn about the health care system.
- Develop contingency plans (you will need more than one) Knowledge about the health care system.
When we become caregivers, our lives change forever. But it doesn’t have to be overwhelming and with the right attitude it shouldn’t take over our lives. That said, facing an unknown future is loaded with fears. In trying to be the best caregiver possible, we tend not to take the time to acknowledge those fears that we harbor in the recesses of our minds. The fears that most caregivers face are fairly predictable. With some variation here are the most common; you can probably add many more to the list but these are the most common.
- Of having to watch your relative’s health decline right in front of you and being powerless to stop or control it.
- That you will somehow fail as caregiver, or that you will not be able to keep up.
- Of not having enough money and not be able to afford the necessary care or medication.
- Of what will happen when they no longer recognize you?
- Of not being able to manage the more intimately personal care, like incontinence care.
- Of being unable to advocate well enough for your love one with doctors and other professionals.
- Of not being there the one time it really matters or of not recognizing a serious problem.
- Of losing your own identity, your own needs, your ambitions and goals. Of becoming unfulfilled.
- Of facing the future without this person, the final loss and the long goodbye, of the emptiness and hole that this person’s departure will leave.
- Of admitting strong negative emotions like anger, fury, hatred and frustration. Of the overwhelming desire at times to yell or strike this person. Feelings that are considered wrong, or that you are not supposed to feel.
If you identify with any or all of these, you are perfectly normal. It’s not wrong to feel fear, all fears are real. The recommended action is first to identify the real fear. We often mislabel fears and consequently miss opportunities to address and overcome them. A simple example is fear of dogs…yes the person is afraid of dogs but more precisely the fear is of being overpower, bitten, maimed, still more exact is fear of pain.
But these caregiving fears are more complex. Still identification followed by prevention is a better solution. We recommend support groups and consulting with professionals. Unfortunately, most support groups only meet once a month, which is long time to wait sometimes. Also, support groups can be dominated by one or two vocal or needy members, leaving other more reserved members without an opportunity to speak. While most support groups are free or nearly free, they leave much to be desired as far as availability and time constraints. An online support system can be helpful, caregivers helping one another in your time and from home as the disease progresses.
We believe that most solutions begin and end with stress management. So we also provide a 4-part Caregiver Relief: Stress Management Guided Imagery Recording. These recordings are identical to those created by the original Grant given to us by Southern California Care Giver Coalition. Ultimately, there are many organizations, both non-profit and private that were created to help caregiver. Their social workers and volunteers understand the loneliness, frustration and exhaustion that come with dementia caregiving. Arming yourself with knowledge about these organizations is helpful.
Review your caregiver rights here
Monitor your stress levels :
Care giver stress test #1
Here are a few Caregiver stress Test # 2
Don’t miss the resource library
Caregiver stress test #3