…is a phrase that few people will ever hear. It doesn’t matter whether a degenerative dementia gradually creeps into your family or a sudden, massive trauma causes immediate changes; the result’s the same. You’re a caregiver now, and there’s no manual on how to do it.
Actually, that’s a big part of the inspiration behind this site: we want to provide a guide for what you can or should do if dementia enters the picture, something that can accompany you every step of the way.
The thing is, sometimes it feels like every lesson you learn about caregiving is from “The School of Hard Knocks.” Given, there is A TON of information about dementia available online. So much, in fact, that it can feel like information overload: there’s no single central resource providing support and frank information for people impacted by dementia.
So that’s what we want this site to be: your go-to resource for simple, actionable advice.
Caregivers, in particular, can quickly find themselves overwhelmed trying to find the best approaches to resolving issues and problems that arise with dementia. So that’s who we’re devoting this part of the site to: caregivers.
The experience of caregiving for someone living with symptoms of dementia is already pretty common, and it’s becoming even more so as Baby Boomers continue to age.
It’s currently estimated that, “the 72 million American baby boomers, born between 1946 and 1964, are turning 65 at the rate of roughly 10,000 a day…” (1); Alzheimer’s Disease (a leading cause of dementia) generally correlates with age. Of the 5.4 million Americans estimated to have Alzheimer’s Disease in 2011, 5.2 million of them are aged 65+.(2)
This means that, increasingly, spouses and siblings will require family care, not just parents. That’s a lot of new caregivers.
Let’s start with some basics that we can build on. If you already have caregiving experience, what are the best practices that you’ve learned? (please share them in the comments section!)
“Take time for yourself” is probably the one that I hear most often.
In fact, it’s almost a cliche by now, eliciting eyerolls and muted sighs from the overwhelmed caregiver who doesn’t have enough time to take a decent shower, much less take some “me time.”
But don’t dismiss it too quickly. Dementia is an unpredictable thing and it’s hard to know how long your caregiving stint will last. A year? Five years? Twenty? No one can really say.
Caregiving with dementia is a marathon, not a sprint, and you don’t want to run yourself ragged.
You’ll want to establish some habits from the get-go that will lead to sustainable caregiving. You still have to care of yourself first; otherwise, you may not be in a state to take care of anyone.
Family Caregiver Alliance assembled a great resource: “Taking Care of YOU: Self-Care for Family Caregivers.”(3)
The core of their advice? You have to take responsibility for your own care.
The following is excerpted from Taking Care of YOU: Self-Care for Family Caregivers
Caregiving can be an emotional roller coaster. On the one hand, caring for your family member demonstrates love and commitment and can be a very rewarding personal experience. On the other hand, exhaustion, worry, inadequate resources and continuous care demands are enormously stressful. Studies show that an estimated 46 percent to 59 percent of caregivers are clinically depressed.
You cannot stop the impact of a chronic or progressive illness or a debilitating injury on someone for whom you care. But there is a great deal that you can do to take responsibility for your personal well being and to get your own needs met.
Many times, attitudes and beliefs form personal barriers that stand in the way of caring for yourself. Not taking care of yourself may be a lifelong pattern, with taking care of others an easier option. However, as a family caregiver you must ask yourself, “What good will I be to the person I care for if I become ill? If I die?”
Breaking old patterns and overcoming obstacles is not an easy proposition, but it can be done—regardless of your age or situation. The first task in removing personal barriers to self-care is to identify what is in your way. For example,
- Do you feel you have to prove that you are worthy of the care recipient’s affection?
- Do you think you are being selfish if you put your needs first?
- Is it frightening to think of your own needs? What is the fear about?
- Do you have trouble asking for what you need? Do you feel inadequate if you ask for help? Why?
Sometimes caregivers have misconceptions that increase their stress and get in the way of good self-care. Here are some of the most commonly expressed:
- I am responsible for my parent’s health.
- If I don’t do it, no one will.
- If I do it right, I will get the love, attention, and respect I deserve.
“I never do anything right,” or “There’s no way I could find the time to exercise” are examples of negative “self-talk,” another possible barrier that can cause unnecessary anxiety. Instead, try positive statements: “I’m good at giving John a bath.” “I can exercise for 15 minutes a day.” Remember, your mind believes what you tell it.
Because we base our behavior on our thoughts and beliefs, attitudes and misconceptions like those noted above can cause caregivers to continually attempt to do what cannot be done, to control what cannot be controlled. The result is feelings of continued failure and frustration and, often, an inclination to ignore your own needs. Ask yourself what might be getting in your way and keeping you from taking care of yourself.
Once you’ve started to identify any personal barriers to good self-care, you can begin to change your behavior, moving forward one small step at a time. Following are some effective tools for self-care that can start you on your way.
How we perceive and respond to an event is a significant factor in how we adjust and cope with it. The stress you feel is not only the result of your caregiving situation but also the result of your perception of it—whether you see the glass as half-full or half-empty. It is important to remember that you are not alone in your experiences.
Your level of stress is influenced by many factors, including the following:
- Whether your caregiving is voluntary. If you feel you had no choice in taking on the responsibilities, the chances are greater that you will experience strain, distress, and resentment.
- Your relationship with the care recipient. Sometimes people care for another with the hope of healing a relationship. If healing does not occur, you may feel regret and discouragement.
- Your coping abilities. How you coped with stress in the past predicts how you will cope now. Identify your current coping strengths so that you can build on them.
- Your caregiving situation. Some caregiving situations are more stressful than others. For example, caring for a person with dementia is often more stressful than caring for someone with a physical limitation.
- Whether support is available.
- Recognize warning signs early.These might include irritability, sleep problems, and forgetfulness. Know your own warning signs, and act to make changes. Don’t wait until you are overwhelmed.
- Identify sources of stress.Ask yourself, “What is causing stress for me?” Sources of stress might be too much to do, family disagreements, feelings of inadequacy, inability to say no.
- Identify what you can and cannot change. Remember, we can only change ourselves; we cannot change another person. When you try to change things over which you have no control, you will only increase your sense of frustration. Ask yourself, “What do I have some control over? What can I change?” Even a small change can make a big difference. The challenge we face as caregivers is well expressed in words from the Serenity Prayer:
…Grant me the serenity to
Accept the things I cannot change,
Courage to change the things I can,
And the wisdom to know the difference.
- Take action. Taking some action to reduce stress gives us back a sense of control. Stress reducers can be simple activities like walking and other forms of exercise, gardening, meditation, having coffee with a friend. Identify some stress reducers that work for you….
Be prepared with a mental list of ways that others could help you. For example, someone could take the person you care for on a 15-minute walk a couple of times a week. Your neighbor could pick up a few things for you at the grocery store. A relative could fill out some insurance papers. When you break down the jobs into very simple tasks, it is easier for people to help. And they do want to help. It is up to you to tell them how.
If you only remember 3 things about caregiving:
You need to take time for yourself. It’ll feel like you can’t. You can. And you need to.
Find support that you can turn to, be it a support group, friends or family, an online community….
When someone offers to help, say “Yes!”
We’d really like to hear about your experiences with caregiving.
Have you been a caregiver before? Are you one now? A family caregiver, a professional, or in some other capacity? Are there certain approaches that you’ve found to be helpful?
Have you received any horrible advice? What’s the WORST advice you’ve gotten about caregiving?
Please comment below and join the conversation! (and if you ever have questions or comments to share with me directly, you can always contact me directly via email at MySimpleC@SimpleC.com)
Interested in reading more? Here are a few great places to start:
“The 72 million American baby boomers, born between 1946 and 1964, are turning 65 at the rate of roughly 10,000 a day….”
From “On Aging Baby Boomers, and the Question of Where to Live,” by Julie Lasky for The New York Times. Published: November 23, 2011.
©2011 The New York Times
“An estimated 5.4 million Americans of all ages have Alzheimer’s disease in 2011. This figure includes 5.2 million people aged 65 and older and 200,000 individuals under age 65 who have younger-onset Alzheimer’s.”
- The Fact Sheet Taking Care of YOU: Self-Care for Family Caregivers. Prepared by Family Caregiver Alliance. Funded by Alameda County Area Agency on Aging.
© 2003 Family Caregiver Alliance
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