Isolation and Loneliness- A Family Caregivers Plight?

Paula's Sob Story- A Familiar One to Many

Gone are her weekends away and happy hours with friends. Gone are her gym workouts and personal training sessions to ready her for the half-marathon she has wanted to do for years. Gone are her pedicure and massage appointments. Gone are her seven to eight hours of sleep nightly. Gone is her hope of a promotion at work, as Paula has quit the job she loved. Gone is her cute condo with the view of the lagoon and patio full of plants she loves to tend to. Paula's life changed more than she ever thought possible when she agreed to move in with her parents and take on being their live-in caregiver. Because of the high cost of hiring a skilled caregiver to care for her two aging parents around the clock (her mother has multiple health conditions that need monitoring but is mentally competent and her father has beginning dementia and has developed an aggressive and difficult personality besides having physical needs), Paula decided to take a leave of absence from work to care for them full time. When it became impossible to leave them alone at night, Paula moved in with her parents because her mother refused to be separated from her husband or move into an assisted living community. It was supposed to be temporary. Paula has been caring for them now over 12 months. Paula is an only child and there are no other local relatives to help care for her parents. Paula has been experiencing long bouts of moodiness, sadness, and hopelessness that have been increasing as she spends more time caring for her parents. Paula doesn't sleep well at night and knows her health is suffering. She feels trapped and wonders if there is a way to care for her aging parents without being cut off from the world and losing herself in the process.

Although this may sound like a horrible, worst-case scenario to some, others of you are amazed. I have described your life to a tee. Besides a loss of freedom, family caregivers can suffer in many dangerous ways. For those saddled with being the only or primary caregiver, it is not uncommon for caregivers to suffer severe financial loss due to quitting jobs to assist their loved ones. Family caregivers can also undergo physical exhaustion and injuries, sleep issues, experience a decrease in immunity and exacerbation of their own health problems as well as experience relationship problems, isolation, loneliness, and depression. We hear a lot about isolation and loneliness in the elderly at the holidays, but little is mentioned of caregiver loneliness. For caregivers that are also seniors, it can be a double whammy.

What Leads to Caregiver Loneliness?

Loneliness apparently is on the rise and not just in the caregiving realm. According to researchers at the University of Chicago, almost 25% of folks experience frequent loneliness regardless of gender, race or educational levels. In a 2010 study conducted by AARP, 35% of the participants 45 years or older reported chronic loneliness, up from 20 % from 2000. We as a nation, despite our fascination with social media are experiencing more isolation and loneliness than ever before. The World Health Organization has stated that loneliness can be more detrimental to our health and wellbeing than smoking or obesity. Now factor in caregiving. Many family or spousal caregivers are the sole care providers and report that they do not have time for work or interests outside of the home, and this can include time for hobbies, exercise, socializing and even getting their own health concerns addressed or monitored by a physician.

Top Reasons Caregivers Are More Lonely Than Others

They have little or no time for group activities or traditional support systems such as church, club participation or friend circles.
Their friendships can become superficial and less authentic as the caregiver feels others cannot relate to their situation.
Many may find there is a social stigma attached to caregiving, especially when caring for someone with dementia. Lack of knowledge regarding dementia or other health conditions may create fear-based distancing from friends and acquaintances (others pull away from the caregiver).
Elderly caregivers may no longer drive, isolating them further or making them feel dependent on others.
Caregivers do not always share their feelings with their adult children or ask for help because they are afraid of burdening their children, do not want to scare them, do not want to appear whiny or fear their children would swoop in and take over all aspects of care resulting in a loss of independence.
Addressing loneliness gets bumped or shoved aside as caregivers are dealing with a multitude of important and often urgent tasks.
A BIG ONE- Typical solutions and “cures” for loneliness such as taking a class, getting a pet or volunteering are not plausible for caregivers as there is usually a lack of time and often funds to make these realistic answers.
Many caregivers say they are not socially isolated but still feel lonely because they feel no one truly understands what they are going through.

The World Health Organization has stated that loneliness

can be more detrimental

to our health and wellbeing than smoking or obesity.

Why Worry About Loneliness?

According to the Family Caregiver Alliance, between 40 and 70 % of family caregivers experience clinical symptoms of depression. This is a staggering amount! Some of the other unfortunate side effects of loneliness from caregiving include:

A decrease in immunity resulting in getting more colds, infections, and even more serious illnesses such auto-immune disorders and cancer
High stress and anxiety
Weight loss or gain
Overuse of alcohol or pain medications as a coping strategy
An increase in blood pressure, digestive problems and non-descriptive pain
A decrease in joy in one's life and emotions such as anger, resentment, grief, guilt and regret in large, unhealthy amounts (some are an unfortunate but natural byproduct of being in the caregiver role)
Insomnia
An increase in the chances of developing dementia including Alzheimer's Disease
Feelings of hopelessness, sadness, and desperation from unaddressed depression that could result in suicidal thoughts or tendencies. This can be increased further by the caregiver suffering from reoccurring injuries or chronic pain from back strains, stress fractures, shoulder injuries and more.

A Simple Test

Health Canada and the National Population Health Fund asked seniors and senior caregivers directly about loneliness; what made them feel lonely and how loneliness had affected their lives. According to this study, seniors did not equivocate being alone with loneliness. The majority of seniors asked agreed that one can be just fine living on their own with minimal socializing and not feel lonely (what we might call “loners”) and on the flip side, one can feel alone amongst a large group of people. The following simple test modeled after the Health Canada version but adapted for caregivers might help determine if loneliness is affecting one's life and health in a negative way.

Where do you fit on the loneliness scale? Ask yourself:

Do I have someone in my life who I feel understands me and what I am going through? Yes or No.
Do I have at least one person that I can easily talk to and confide in? Yes or No.
Other than the person I am caring for, have I felt close to another person since I began caregiving? Yes or No.
Do I have a network of friends that I can socialize with or count on for support? Yes or No.
Do I like my life the way it is currently? Yes or No.

If you answered “No” to one or more of these questions, loneliness may be having a negative impact on your life. It may be helpful and wise to speak to a physician if you feel depressed, have anxiety, sleep disturbances, are experiencing weight loss or gain or any other of the side effects mentioned.

Is There a Simple Fix for Caregiver Loneliness?

I am afraid we already know the answer to this question… There are, however, a few things to try that at the very minimum might decrease the loneliness one experiences while caring for a loved one.

Get some God time in. According to a Spirituality and Health article on loneliness, studies have shown that people who are religious or spiritual report half a degree of the loneliness of those who say they are not spiritual or religious at all. Even if one does not have time to get to a church service, spending time in prayer or meditation or even listening to spiritual music can have a calming, beneficial effect on one's body, mind, and spirit and can leave one feeling renewed and re-energized.

Find a caregiver support group. These support groups are golden as they consist of people going through exactly the same things. Groups are offered through many resources such as the Alzheimer's Association (Alzheimer's San Diego in our area), your local Aging and Independence Services office, senior centers, local assisted living communities and more. Hospitals often host support groups for caregivers caring for specific-needs patients such as those with cancer, MS or Parkinson's Disease. Please see list at the end of the article for some resources.

Join an online caregiver support network. This is a great option when there are no in-person groups in your area, you can't get away or just need a little extra support. AARP offers guidance and support on their Family Caregiving site as well as on their Care Connection

Enroll your loved one in a day center if they have any type of dementia. Caregiving for those with dementia can be double or triple the work load of regular caregiving and you need breaks! This can allow you some time for fun, to take a walk or class or better yet, re-connect with friends.

Bring in the troops. If you can afford even 2-8 hours a week for a professional caregiver to come in and give you a break it will feel like a mini vacation! Caregiving rates can vary from $13 to $25 an hour depending on where you live and what the competitive rate is. If finances are limited, certain non-profits can provide a few hours a week of volunteer companions to come stay with your loved one so you can get out of the house. Alzheimer's San Diego are a few local entities that provide this service. See resources below.

Enlist the help of friends and family. When people offer to help, stop refusing! We can often be embarrassed to admit that we might need help, afraid to appear “needy” or think it is too much trouble to let people help. If isolation is a problem start accepting offers for visits, drives or meals out. If someone can stay with your loved one so you can go to church or have an hour or two of fun, it will help you do a better job caregiving as you will feel renewed, and nourished, and those few hours may just help you avoid caregiver burnout.

Take care of yourself. Family caregivers quickly get used to pushing their needs to the back burner. If you fall ill or have a total melt-down, how will you care for your loved one then? Getting regular exercise and taking care of your health needs will improve your mental state in general, will help you to fight depression, and will help you to stay strong so you can continue to provide loving, supportive care to your loved one.

Lose the guilt. Talk kindly to yourself - you are doing a fantastic job and it is not an easy one. Stop being so hard on yourself. You need and deserve time away from your loved one for hobbies, socializing and self-care. You have enough emotional baggage that comes along with caregiving, guilt does not need to be one of them.

More Thoughts and Some Hope (Yay!)

In 2015, there were approximately 39.8 million family caregivers in America (16.6% of our population!) (AARP and the National Alliance for Caregiving 2015 report). Here are a couple of other stunning facts; according to National Academy of Sciences, social isolation and loneliness can result in a higher risk of mortality in those over the age of 52. This may be from not seeking needed medical care or it may be from any combination of the loneliness side effects mentioned above. Either way - it's a scary reality. Another fact that bears mentioning is that LGBT seniors are at a particularly high risk for isolation as they age, and if sole caregiving is added into the equation, they face even more challenges. Frequently LGBT seniors do not have children to assist them, do not have as many extended family contacts due to alienation and may find they have fewer support options in general.

Many of us are providing some form of caregiving to an aging family member. For full-time caregivers, isolation and loneliness can occur when one gets lost in the busyness and this can have devastating effects on one's health and wellbeing. Busyness while caregiving understandable. There are chores, appointments to get to, physical care to be performed, and a myriad of other tasks. Yet if we don't address our need for socialization and support and find a balance between the care we need to provide, and our own needs, we face burn out or even worse consequences. For those not directly providing care but know someone who is, I hope that this article will inspire you to reach out and connect with them. Please take notice when care providers are withdrawing socially; offer them much-needed breaks, outings, and a listening ear. Refrain from judging and just offer your friendship and a little bit of your time; it will be much appreciated!

Getting advice on what senior care options and resources are available can be a tremendous support and can be found through local senior advisors and geriatric care managers. We'd love to talk with you, please give us a call to schedule a consultation or contact a geriatric care manager in your area (find one at the Aging Life Care Association website- formally known as the National Association of Professional Geriatric Care Managers).