Educating and Empowering Yourself
Although nothing makes the journey of caregiving easy, educating yourself about available resources, building support teams, and planning ahead can ensure you and your loved one stay as healthy as possible.
Whether you have been filling the shoes of a caregiver for several years or just embarking on the role, you are soon to discover that caregiving is both incredibly fulfilling and overwhelmingly exhausting. Pouring oneself into the comfort, health, and survival of another is not something to be taken lightly. While the idea of a young mother conjures an image of both selfless love and exhaustion in the minds of most people, many do not recognize that same image when it comes to caregiving for the elderly. In reality, there are many parallels between the full-time care of an infant and the care of an aging loved one. In the same way that young mothers need to take precautions to keep themselves from burnout, you, as a caregiver need to do the same. Take time now to educate and empower yourself for the calling of caregiving without completely draining your physical and mental resources.
The Importance of Educating Yourself
Most first-time expectant moms do a lot of reading to prepare themselves for the new life ahead of them. They pick up books that tell them what to expect when caring for a newborn, how to manage their time, how to survive the first few years, etc. They also get on the internet, scouring for tips from more seasoned moms on things they need to do to prepare themselves for the new, exciting, and scary phase of life called motherhood. Years later another new phase of life looms on the horizon, one just as taxing physically and even more draining emotionally because the fear is there without the balance of excitement. Instead, it is overshadowed with sorrow. Unfortunately, very few people read books to prepare, no one offers them tools they need to launch successfully into this phase, and they often only scour the Internet after they are in the midst of this phase and almost drowning.
This is the world of senior caregiving. While it would be wonderful if someone invited you for a cup of coffee, handed you their favorite book on caregiving, and shared their personal experience, ultimately your ability to thrive in the midst of this challenge is dependent on the extent of your self-education and preparation. Without this preparation, many caregivers drown in a sea of self-doubt, exhaustion, and lack of knowledge.
How to Provide Necessary Care
How can I possibly care for my loved one? How can I know if I am providing everything they need? How can I care for him/her and still manage other areas of my life? These questions and more easily overwhelm the minds of caregivers.
- Physical Needs – it is important to look first at the current physical needs of your loved one, and consider some of the possibilities of future needs. Many caregivers find it helpful to make an inventory of the needs, and divide them into current and possible future needs. A good place to start is looking at the list of Instrumental Activities of Daily Living (IADL) and Activities of Daily Living (ADL). Also take into consideration specific health conditions your loved one has. What special physical care requirements might they entail? Once you have made this list, go through and determine which things you can help your loved one with, and which items you may need outside assistance.
- Financial Needs – assess the state of your loved one’s finances. What type of care can they afford? If they need long-term institutional care, what would that look like in terms of finances? Do they have resources to pay for respite care for you? What about finances to remodel their home to accommodate current needs? Looking at finances is always stressful, but getting a clear picture ahead of what you have to work with can actually relieve the stress of uncertainty.
- Emotional/Spiritual Needs – while elder care certainly takes a huge toll on the caregiver, the process of aging, losing independence, and receiving care also has a huge impact on the elderly. It is important to consider the emotional and/or spiritual needs this will create and look for ways they can be met. You may not be able to provide all the emotional care your loved one needs. Are there support groups they can join? If they have been part of a religious organization, what resources are available to them in terms of pastoral care, senior activities, etc.? Would someone from their church be willing to pick them up and take them to an event or a service? When your emotional well-being is in jeopardy you do not also need to be the primary emotional support for another person.
Recognize the Need for Self-Care
According to the Gallup-Healthways 2011 Well-being Index the average caregiver spends the equivalent of 13 days per month on IADLs (instrumental activities of daily living): things like providing transportation, housekeeping tasks, grocery shopping, etc., 6 days per month on ADLs (activities of daily living): basic necessities like dressing, feeding, and bathing, and 13 hours per month doing research, working on finances, arranging appointments, etc (2). That is well over half of every month spent on caring for a loved one. For many caregivers, those numbers are low. Is it any wonder that 40% to 70% of caregivers of loved ones have significant symptoms of depression (3)? As more Americans are caught up in the role of caregiving, the statistics keep rolling in on the detrimental effects being in this role has on the lives of those pouring out themselves for their loved ones. However, many caregivers either do not recognize the need for self-care or do not see how it would be possible in their situation. Some of the many barriers to taking advantage of self-care include:
- Misconceptions – few people intentionally believe lies, but it is easy to develop misconceptions that become guides for our thoughts and choices. When it comes to caregivers taking care of themselves some of those easy to listen to misconceptions include:
- If I don’t take care of (mom, dad, fill in the blank), no one will.
- No one can take care of him/her as well as I can.
- It would be selfish if I took time for myself.
- I will be a failure if I have to ask for help
- A good (daughter, son, granddaughter, etc.) always puts the needs of his/her (mother, father, grandparent, etc.) first.
- I promised my father I would always take care of my mother (therefore I can’t…).
- Everyone expects me to take for him/her.
- The way I show that I love is by always caring for him/her.
Our actions are based on our beliefs and thoughts. Therefore, when these misconceptions rule the thinking of a caregiver, even subtly, they often cause that caregiver to push themselves past the limits of their own health and mental well-being and neglect self-care.
- Guilt – perhaps you did not have the greatest relationship with your parents after you became a teen. Maybe you have even been estranged from them for several years. Now, it seems like you have the opportunity to make up for the past by throwing yourself into their care.
- Negative Self-Talk – the things a person tells himself also affects his ability to seek out appropriate self-care:
- I don’t have time to exercise (or take a break, or go to counseling…)
- I never do anything right.
- Comparison – so and so takes care of her mom and never complains or needs help, why should I be any different?
Allowing guilt, misconceptions, and negativity to rule your thinking is a common, but very unhealthy mistake to make. Many of these misconceptions seem very valid. If you find yourself with these thoughts it may be beneficial for you to talk through them with a counselor or someone experienced with caregiving to separate truth from misconceptions and guilt. Join online communities to hear what other caregivers are experiencing. AARP has excellent caregiving resources, including an online community where caregivers can ask questions and share ideas. You are not alone, and you do not have to carry this burden yourself.
It is vital to realize that not every caregiving situation is the same, nor is every caregiver the same. You may require more assistance than someone else, and that is perfectly okay. There are many, many factors that can affect the stress that caregiving places on someone including:
- Your own health – if you have health issues of your own, the task of caregiving can be even more overwhelming and detrimental.
- The level of care needed – each caregiving situation is unique. Whether someone just needs assistance with IADLs or if they need lots of help with ADLs is a huge factor. Also, caring for someone with dementia generally produces much more stress than caring for someone who is simply old and frail.
- Past relationships – caring for someone with whom you have a rocky life-history with is far more stressful than caring for someone with whom you have always shared a loving relationship.
- Your support structure – how involved you are with your religious institution, what your sibling relationships are like, whether you have friends you can depend on for encouragement: these are all factors that will have a significant impact on the way you process the stress of your caregiving experience.
The important thing to remember about self-care is that even if you are the primary caregiver, this does not mean that you are the only one who CAN give care, nor the only one who SHOULD give care. Attempting to do it all yourself not only has a good chance of destroying your own mental and physical health, but as a result could also keep your loved one from getting the care they actually need. It is vital for you to involve others.
Often the biggest setback for getting help is simply that people do not know how or when you need help. Thankfully, technology has made the task of communicating needs so much easier. To get started, ask everyone who will be part of your respite care network to sign up on HowToCare.org. Organize information, create tasks and calendars that are accessible by whomever you allow. You can then place things on the calendar that others can help with and they can sign up to meet that need, right in the app. For example, you need someone to sit with grandma for a couple of hours while you go to a massage and get coffee. Put that on the calendar, and others can sign up for that slot. Does dad need a ride to a therapy appointment? Put it in the app and see who signs up! You can also input basic routines, such as what medicines are needed when, so that whoever is sitting with grandma while you are away will automatically know what things they need to keep up with.
Making Decisions for Your Loved One
Another area to prepare for is the transition to you making the decisions. Although it is incredibly difficult for both the loved one to give up control and the caregiver to take over decisions, not making preparation in this area sets you up for shipwreck in critical moments. This is an area of much regret for many caregivers who neglected to have those tough conversations early. It is important to talk about the preferences of your loved ones while they are still cognizant, rather than to agonize over what they might have wanted later. Many caregivers find three documents particularly helpful:
- HIPAA Authorization form – this document should be available/required at every doctor’s office and enables your loved one to give you permission to access his records. This will help tremendously when you simply want to call in and get a copy of his lab report without having to get him involved.
- Medical Power of Attorney (POA) – this legal document must be notarized to be legal, but it goes further than the HIPAA, which only gives access to records. The medical POA gives you permission to make certain specified healthcare decisions on behalf of your loved one. This becomes vital when she is incapacitated and decisions need to be made.
- Living Will (Advanced Healthcare Directive) – this document needs to be prepared ahead of time with your loved one and revisited from time to time to make sure his wishes have not changed. It contains their wishes regarding resuscitation, life support, feeding tubes, etc.
Although nothing makes the journey of caregiving easy, educating yourself about the resources available to you, building up support teams, and planning ahead are some of the best ways to ensure you and your loved one stay as healthy as possible during the journey.
- Gallup-Healthways. (2011). Gallup-Healthways Well-Being Index.