Starting a new role as a family caregiver can be an overwhelming experience. There are a lot of unknowns and unexpected things that seem to pop up all the time. Whether you just recognized that a family member seems to need more assistance than they once did, or you’ve been thrust into it through a sudden injury or diagnosis, the beginning can feel murky at best. To put your mind at ease here is an easy checklist of the first steps you should take as a new family caregiver.
Step 1: Start with a diagnosis.
For suspected dementia (or a form of it, like Alzheimer’s disease) it can feel useless to get a diagnosis. But contrary to popular belief, there are many benefits to an early diagnosis.
Generic Dementia with Reversible Cause
Here’s an example. If your loved one is forgetful at times or has gone through a noticeable personality change, you may suspect dementia. Since it has no known cure, you may not see it as important to get the diagnosis. But a thorough evaluation by a neurologist or diagnostic clinic will rule out any reversible causes of dementia symptoms, such as depression, nutritional deficiencies, reactions to medication, or infection. The bottom line: don’t try to self-diagnose dementia.
Early Treatment for Alzheimer’s Disease
As a second example, early diagnosis of Alzheimer’s disease will lead to early treatment. Modern treatment for Alzheimer’s disease is most effective in the earlier stages - it can buy more time for you and independence for your loved one. Knowing your loved one's diagnosis can also help you realistically plan ahead and make decisions while they’re still lucid. Examples of such decisions include estate planning, end-of-life care decisions, and advanced directives (such as a power of attorney). Note: See step 3 for more information.
Step 2: Learn about the diagnosis.
Once you have the diagnosis, learn as much as you can about your family member's condition. This information will confirm that you are not imagining things or exaggerating your loved one's behavior. Especially when you're dealing with dementia, learning about the diagnosis will help you remember that it's the disease that is causing them to gradually lose control over their behavior. This understanding and reminder can save you from a lot of frustration and anger over time. Many books, videos, and classes are available to inform you about what you can expect as your loved one's disease progresses.
Step 3: Talk with your loved one about his or her finances and health care wishes.
If your relative is able to complete a Durable Power of Attorney for their finances and health care, assist her or him in meeting with an elder law specialist to draw up these documents.
This planning can help relieve your immediate anxiety and make you better prepared for the future. It can also start important discussions with your loved one and other family members. If your loved one doesn't have the capacity to execute these documents, you will need further legal advice to learn about your options, so the sooner these are taken care of, the better.
Step 4: Consider inviting family and close friends to come together and discuss care.
If possible, you should include your loved one in the meeting. Let everyone have a turn to discuss their concerns, as well as how much and what kind of help each person can offer. As the primary caregiver, it's best for you to focus on accepting what assistance your friends and family are offering, even if it's not exactly what you had in mind. We recommend you bring a list of the tasks that are needed so they can be more easily divided up.
Click here for more information about how to hold a family meeting.
Step 5: Take advantage of community resources.
There are many community resources as well as local and state government programs designed to help you through this challenging period. These resources are available so that you don't have to do everything yourself. They offer an opportunity for a break when you need one.
Click here for our full guide to finding community resources.
You can also see if there are caregiver classes and workshops offered in your community by calling us at the Caregiver Resource Center OC. These education programs will help you feel more confident and make the time you spend caregiving easier for both you and your loved one. Our contact information is at the bottom of this article.
Step 6: Find help and care for yourself
This is probably the most important tip of them all. This season of life is both challenging and rewarding. It will undoubtedly test you in a lot of ways, but you don’t need to go through it alone.
Caregivers often feel isolated as they take on more responsibility - responsibilities that may push their normal social lives into the background. A caregiver support group (either in person or online) is a good place to start to meet other family caregivers who have really "been there."
Click here to find out more information about in-person and online support groups.
Contact Us: Where to Find More Information
If you provide regular care to your loved one, we at CRC Orange County are here for you. We invite you to check out our library of information for family caregivers by clicking here for further reading and resources. You are also welcome to give us a call at 800-543-8312 to find out more about how we can support you in your caregiving journey.