Caring For You Caring For Another

When we envision retirement, most of us pull up pictures of the grand and  joy-filled activities we will delve into with the rest of our lives. May it be so for many years!

I recently heard Leslie Koc speak about caregiving. She is both a coach and a caregiver for her spouse. She really touched me as a nurse and someone who has worked with clients who are home caregivers for years. It got me thinking the reality of this piece of retirement. 

This blog is focused on facts about caregivers, the toll on them, and how we might better prepare for becoming a caregiver, and prepare to make that a healthier experience for those around us who step up to be our caregiver.

First, some facts about caregivers to spur some thought in you and hopefully some conversation with others:

Who Becomes a Caregiver?

• 34 million Americans have provided unpaid care for someone aged 50 or older in the last 12 months. About 15.7 million of those are people who care for  someone who has Alzheimer's disease or another form of dementia.
• The average age of a caregiver providing care for someone over age 65 is 62. The average age of someone receiving care is 69.4.
• 75% or more of all caregivers are female. The opposite is true in the LGBT community where males provide care more often.
• Among spousal caregivers over the age of 75, both genders provide equal amounts of care.
• Currently, 3-6 million Americans are distance caregivers who provide care and support for a family member who resides an average of 450 miles away.
  
• Seven out of ten of us will ourselves require a caregiver for an extended period at some point in our life. If we don't plan for providing, we need to plan for receiving.
  

How long and how much?
The average caregiver will be in that role for four years. Those caring for someone with dementia or Alzheimer's will provide care for one to four years longer on average than for other conditions.

Caregivers who live with the care recipient will spend an average of 40 hours per week providing care and an additional 13 hours per month researching services or information on a disease, managing financial matters, or coordinating physician visits, shopping, outings, etc. 

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At What Cost to the Caregiver?
Caregivers and the people around them are focused in on the well-being of the person receiving the care. There are significant tolls on the caregiver(s) as well and that is the opportunity for us to do better planning and support for each other.

Here are several examples of what caregivers encounter:

• Isolation: It is easy to get cut off from other social connections with the time obligations of caregiving. In addition, if the person you are caring for is a spouse or partner with cognitive decline, there is also the potential loss of companionship, couple friendships, loss of family traditions, intimate partnering and the loss of a thought partner for decision-making. People functioning as caregivers report that their own positive activities decrease by about 27%.
• Higher risk of depression: 40-75% of caregivers have clinically significant signs of depression and 25-50% meet the criteria for major depression with slightly higher rates of depression in caregivers for people with dementia. It's important that we check in with caregivers to support them, sort things out, and when it is needed, encourage them to seek treatment. This is not meant to be a selfless act.
• Self-care and chronic health concerns: The time and energy required for caregiving affects the likelihood of preparing proper meals, getting out to exercise, or even keeping up with personal grooming such as hair appointments. Spousal caregivers report skipping doctor appointments and not filling prescriptions due to costs. As a result of less self-care and the ongoing stress, caregivers have twice the rate of chronic health conditions compared to non-caregivers, including high blood pressure, diabetes and heart disease. The mortality rate for caregivers over the age of 65 goes up 63%.

Just as important are the feelings of ambivalence a caregiver experiences. The frustration that can often arise conflicts with the deep, caring feelings that led the caregiver to take on the role in the first place. Even though they know the recipient can't help their circumstance, it doesn't make the caregiver less frustrated in the midst of the situation. The caregiver often ends up feeling guilty if they allow themselves to express their emotions about the situation so they stay silent. Even their ambivalence becomes a way they are further isolated. How might all of us provide a non-judgmental ear to provide an outlet?

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Ideas for Planning Ahead
An important first step in creating a better caregiving experience is having meaningful conversations and doing high-level planning rather than waiting until we find ourselves in the midst of responding to the situation. I believe those discussions should be part of our retirement planning process. Most of us hope and assume it won't be us and we never have that conversation--with our partner, our family, or our friends.

Here are several questions you may want to reflect on and discuss with those you care about as you move into the retirement phase of life:

1. What are your wishes should you require care over an extended period of time? How does that impact your loved ones?
   
2. What are the resources available to provide for care in that circumstance--both financial resources and support systems? If you end up needing a caregiver, who else can help by spelling them off, running errands, helping with heavier physical care?
   
3. In what ways can you free your partner or family from assuming they must take on being caregiver for you in ways that take a toll on their health?
   
4. What kinds of boundaries might you talk about in advance to determine when care becomes too much to be provided at home? What might you say to the folks who are potential caregivers to know you encourage them to find other help at some point? We can pretend this doesn't happen, but it does...a lot.
   
5. Is there a plan for long-term care and/or a long-term care insurance policy or savings for that circumstance? Who can help your caregiver with either initiating a policy or sorting out finances when this happens?
   

Ideas If You Are Already a Caregiver

1. Ponder shifting your focus from being main caregiver to care manager. Your time and energy and focus may be best used assuring that the person you are caring for gets the best help possible.
   
2. Incorporate breaks that are dedicated to you. You might cook, exercise, get out for fun with a friend, get a massage, or even just focus on taking time to take care of your own grooming needs. Who might you ask to provide you a break? How can you avoid feeling guilty about meeting your own needs?
3. Consider joining a caregiver support group. It's a great way to process what you are experiencing with others in similar situations and to share resources and solutions. AARP has an online caregiver support forum that you can access here. 
4. Enlist a partner in supporting you vs. the person you are caring for. They can help you spot warning signs that things are getting to be too much.
5. If you are feeling overwhelmed by your responsibilities, or better yet, before that, start by talking with your primary care physician. They may have resources to connect you with community resources for support services, including respite care or equipment to make the job easier. In addition, home health agencies and/or long-term care organizations who offer community services are expertly trained to help assess needs and solutions for you. The Area Association on Aging may have resources in your area, as well. Here is a link to their national site.
6. A growing number of home caregivers work with coaches who can be a neutral ear and help you sort out the big picture of what you are experiencing, weigh the decisions you are facing, help you set boundaries on what you are able to do, and help you give voice to what you are grieving or feeling frustrated by, as well as help you focus on your own self-care. As a coach, I often do sessions with people all over the country via computer or on the phone. While getting out is often helpful, don't let inability to leave your home stop you from reaching out.

The topic of caregiving is complex and deserves much more space than is given here. It is important to realize that it isn't something that happens 'to those people over there'. It is more likely than not you will either be a caregiver or require one. It's important we encourage a community dialog about healthy ways to navigate caregiving and not put undue strain on the caregiver who loves us. As a culture, we also need to better keep caregivers in view and find ways to provide support.

If I can be of help to you as you plan for or navigate being a caregiver, please feel free to contact me.

Sources:
AARP and United Health Hospital Fund. (2012). Home Alone: Family Caregivers Providing Complex Chronic Care.
Alzheimer’s Association. (2015). 2015 Alzheimer's Disease Facts and Figures.
Coughlin, J. (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management.
Gallup-Healthways. (2011). Gallup-Healthways Well-Being Index.
Institute on Aging. (2016). Read How IOA Views Aging in America
McCann, J. J., Hebert, L. E., Beckett, L. A., Morris, M. C., Scherr, P. A., & Evans, D. A. (2000). Comparison of Informal Caregiving by Black and White Older Adults in a Community Population.
National Alliance for Caregiving & AARP. (2005). Caregiving in the U.S.

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