Being a family caregiver is not a job any of us sought – and probably never, ever considered the fact that this would become a part of our lives. Our goal is to keep our sense of self and that’s how we will survive. Doing a job well gives us a sense of satisfaction and purpose. And that is how we thrive.
One of the first — and the most important — thing we need is information about our loved one’s diagnosis. Ask your doctor and all specialists involved for information. Go into appointments with a list of questions and any symptoms of concern. A General Practitioner may not have much information for you, as their area of practice is so broad. Specialists will often be able to provide more information, especially information about your person’s specific diagnosis. If they don’t offer, ask if they can provide more information you can take with you or if they can recommend a specific website. Nurses are also often good sources and sometimes have more time to answer question about specific care issues.
A random Google search may turn up information, but, as everyone knows, there is a lot of misinformation floating around. Instead check out our Resource Library with over 300 links, and growing, to trusted websites on a wide range of diseases, resources and topics.
If the disease that brings you in as a caregiver is curable, add to the focus of your caregiver information research. What is recommended for recovery and life afterwards? We provide recipes for high nutrition, ways to make your loved one comfortable, ideas of adapting to change. Your doctor will provide recommendations for recovery from a specific issue, such as rehab for a heart patient. Cancer patients may need to make adaptations to their lifestyle. Both may need short periods of personal care after surgery or treatment.
Be sure you understand how to change dressings, administer medications, monitor healing and other aspects of recovery if surgery is involved. Most hospitals provide written instructions and a nurse will go over them before discharge. Ask questions on anything that you don’t understand! Your loved one may need to make dietary changes. Find out about them and make changes throughout recovery, so the patient has adapted gradually. Eventually the patient will be able to move on and take care of themselves without your help.
Other conditions need a longer period of caregiving. Strokes happen in the brain, and are the fifth leading cause of disability and death. However, rehabilitation will help with recovery and can restore function of the body. The greatest percentage of recovery usually occurs in the first year after a stroke. For a caregiver, this requires a large investment of time, either in personally providing or arranging and coordinating care. And may or may not be temporary, depending on the patient’s recovery. It may also include making adaptations to the home.
If the disease is progressive or creates a permanent disability, the focus comes more squarely to you as caregiver. Your loved one will change. You are the one who needs to be adaptable. Some care receivers have physical problems and as a caregiver you need to keep them safe and work with those disabilities. Again research so you know what to expect, ask questions, search out resources.
Being informed will provide you assurance that what is recommended will let you provide the most appropriate care. It will help you to formulate questions and ask for services that your doctor may not know about. You will become a more effective advocate – and have confidence that your actions lead to the best possible outcome.
Some persons being cared for lose mental capacities. And others have reduced mental capacity AND loss of physical abilities. And this leads us to dementia. Dementia accounts for the largest group of home caregivers. Last year 11.5 million family members provided care for a loved one diagnosed with dementia.
Many people dismiss dementia as “memory issues” and think their loved one is causing trouble willfully. Neither is true.
Dementia is caused by damage to or loss of nerve cells and their connections in the brain. The symptoms and behavior depend on the area of the brain that’s damaged and deteriorating. The person cannot control their behavior or their comprehension. Once this is understood, caregiving can be provided more compassionately. And that makes life easier for both the caregiver and the recipient.
Dealing with dementia requires specific information. The same is true of all the other diseases and conditions. It is up to the caregiver to seek out that information. Check out the Resource Library. And if you run across a website that is helpful and not listed – please, please let us know!
written by Charlene Vance
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