Caregiver Mental Health – Part 2

Making the assisted living decision

In Part 1 of our focus on caregiver mental health, we outlined a few of the factors that can lead to stress, anxiety and depression among caregivers. In Part 2, we take a look at one of the most difficult decisions a caregiver might face: Moving from in-home care to assisted living.

This clip from the Independent Lens documentary “You Can’t Care for Dona Anymore” shows the heart-wrenching moment when a mother leaves her intellectually disabled adult daughter in a residential facility. The mother’s guilt about her decision is apparent in the clip, as is the family’s belief that the move is the right decision for their loved one, Dona. Families face decisions like this one every day, and it can create a lot of stress and doubt.

Why consider assisted living for a disabled adult

As we discussed in Part 1, caring for a loved one with a disability can often become more challenging than anticipated. Caregiving is more than a full-time job, and all the love in the world is often not enough.

Sometimes, in-home care is the right answer, but there are a number of reasons to consider a residential facility instead:

  • If your loved one is prone to wandering, falling or risky behavior, staying in your home might lead to injury. A residential facility can provide a safe, controlled environment for an adult with intellectual or developmental disabilities.
  • Level of care. Keeping track of medications, physical therapy sessions and day-to-day care can place an undue burden on the caregiver. In a residential facility, trained staff provides the right level of care for each resident’s needs.
  • Social aspects. While you can provide love and care to your loved one, he or she may still need friends or other social outlets. A group home or assisted living facility can provide that valuable social network to your loved one.
  • Caregiver’s health. In many cases, the caregiver has health concerns that can make it difficult or impossible to continue caring for a loved one with disabilities. Opting to place your loved one in assisted living allows you to focus on your own health while ensuring quality care for your loved one.

Making the right choice for you and your loved one

There are a variety of options available for adults with disabilities, including:

  • Group homes
  • Assisted living
  • Section 8 housing
  • Skilled nursing facilities

The right living arrangement for your loved one will depend on a number of factors. If your loved one can manage some level of independent care, for example, an assisted living or group home can give them some independence combined with help bathing, cleaning, managing medications and more. This article offers a helpful overview of the types of options available to you.

Another major factor in your decision will be cost. Each option comes with a different financial impact, and assistance programs and insurance only cover some options. To learn more about the financial aspect of caring for disabled adults, this article offers some guidelines and helpful links.

Managing guilt and worry

For a caregiver faced with big decisions, such as choosing assisted living or a group home, feelings of guilt and worry can become overwhelming. If you are faced with making this decision for a loved one, be gentle with yourself first and foremost. Remember that placing your loved one in a residential care facility is often the most loving and responsible choice you can make.

To cope with the feelings that arise along the way, remember to:

  • Seek support. You don’t have to keep your feelings inside. Reach out to understanding friends and family, find a support group or schedule time with a therapist. Talking honestly about your role as a caregiver can help ease some of the stress and guilt you might be feeling.
  • Take time for you. As a caregiver, you often place yourself and your needs last. As you transition your loved one to a residential facility and work to develop a new routine, be sure to take time out to enjoy your own hobbies and interests. Focusing on something other than your loved one’s care can help you relax and reduce the effects of stress and worry.
  • Acknowledge your important role. Too many caregivers are quick to brush off compliments or kudos for the care they have provided a loved one. Take a moment to honor yourself: You have provided such important love and care to someone with a disability, and now you are helping him or her achieve a new level of independence and social interaction in a residential facility. The work you have done matters.

Scott Kohner MSW, LCSW is a psychotherapist in Denver, CO working with individuals, couples and families. To learn more about Scott, visit www.ScottKohner.com.

Focus on Caregiver Mental Health

How to make caregiver mental health a priority

In a recent article, we discussed common mental health concerns for people with physical disabilities. A related, and sometimes overlooked concern, relates to the loved ones who care for them. Caregiver mental health can decline over time without the proper resources, support and self-care.

Caregiver mental health risks

The emotional burden placed on caregivers can be intense. Often, loved ones take on the responsibility of caring for a family member who has health concerns or physical disabilities. Depending on the circumstances, this caregiver role can be short–or long-term, and many people may not be fully prepared for what the role will entail.

The Family Caregiver Alliance estimates that 44 million Americans offer this type of unpaid care to their elderly family members or those with disabilities, and:

“Evidence shows that most caregivers are ill-prepared for their role and provide care with little or no support, yet more than one-third of caregivers continue to provide intense care to others while suffering from poor health themselves…

A substantial body of research shows that family members who provide care to individuals with chronic or disabling conditions are themselves at risk. Emotional, mental, and physical health problems arise from complex caregiving situations and the strains of caring for frail or disabled relatives.”

The Alliance goes on to cite several alarming statistics, including:

  • Up to 70 percent of caregivers show clinical signs of depression; and up to one-half of those individuals show signs of major depression.
  • For many caregivers, depression symptoms do not ease after their loved one is placed in a nursing home or care facility.
  • Women, as well as people caring for loved ones with dementia, show the most signs of depression and anxiety related to their caregiver role.
  • Caregivers are more prone to substance abuse than non-caregivers.

Those sobering statistics indicate a significant problem in our communities. What’s more, caregivers may be reluctant to seek help or care themselves.

Caregiver resources

If you are a caregiver, or if you know someone who is providing care to a loved one, there are a few steps you can take to minimize the strain of the often stressful role. The first step is to make use of the resources available to you, which include:

  • Respite care. A variety of organizations recognize that caregiving is often high stress and that caregivers need breaks. Here in Colorado, for example, The Colorado Respite Coalition connects caregivers with respite care options. Adult day centers, senior associations and others also offer respite programs.
  • Support groups. Joining a support group for caregivers can help you feel a lot less isolated. Sharing stories with others who are on a similar caregiver journey can help ease your emotional burden. This site lists several caregiver support groups by state.
  • Counseling. Whether you are struggling with caregiver depression, stress and anxiety, or you just need a listening ear, a good therapist can help you cope with your role.
  • Other support services. Many caregivers go above and beyond caring for the individual and also care for their loved ones’ homes, pets and more. Consider hiring out some of that work to a maid service, dog-walker, handyman or other service provider who can take some of the load off your plate.

Caregiver self-care

Focusing on self-care is perhaps the most important step you can take to prevent caregiver mental health issues. If you are not taking good care of your own physical and mental health, you can’t provide the best care for your loved one. Your health matters and you deserve a break, time to enjoy your life, the company of good friends and more.

So, what qualifies as self care? In short, it’s anything that helps you feel refreshed and helps you enjoy life more. Here are a few ideas to try:

  • Eat well. Make time to eat a balanced diet, and be sure to load up on fruits and vegetables. Good nutrition is the foundation for good mental and physical health.
  • Exercise. Take a long walk, go for a bike ride, or join a weekly Zumba class. Do something active that you enjoy. It not only supports your physical health, it can be an outlet for stress, and it gives you an hour or so of time dedicated 100 percent to you.
  • Visit the doctor. As you work to keep track of your loved one’s appointments and medications, do you neglect your own? Stay on track with your own preventive health appointments.
  • Do something fun. Take an art class, go to a concert, or pack a picnic and sit in the park. Fun can take many forms, so what you do is your choice. The point is to bring back a little relaxation, enjoyment and laughter into your life.
  • Meditate. Many studies have shown the positive effects of mindfulness and meditation. Even five quiet minutes each day can make a difference. Don’t know where to start? Try a free meditation or download an app like Calm.com.

That list is just a starting point for self-care–there are many other activities and techniques you can try to boost your sense of well-being. The point is to make yourself a priority. As a caregiver, of course, your loved one’s health is top-of-mind, but be sure to place yourself on the priority list.

About the Author:

Scott Kohner MSW, LCSW is a psychotherapist in Denver, CO working with individuals, couples and families. To learn more about Scott, visit www.ScottKohner.com.

 

Physical Disability & Mental Health

How physical disability and mental health are connected

Greers Ferry National Fish Hatchery_ Kid's Fishing Derby _ Flickr_files
Source: USFWS/Southeast via Flickr Creative Commons

Americans living with physical disabilities face a number of significant challenges that can impact their quality of life. For many, physical disability and mental health go hand-in-hand. As you take care of your physical needs, it can be all too easy to neglect your mental health.

Below are a few common challenges faced by people with physical disabilities, as well as some ideas for taking care of your mental health:

Lack of work

For many individuals, a physical disability can impact their ability to work. Although Social Security, Medicaid or other financial resources may be available, these benefits may not cover all living expenses (the average SSDI benefit was less than $14,000 in 2016). Several studies have linked worry about finances or debt to higher risk for mental health issues.

Beyond financial stress, unemployment can also lead to depression or anxiety for some people. If you are not able to work due to a disability, that can leave a void in your life. Many people find enjoyment and a sense of identity in their work, so missing that aspect of life could affect mental health for some people. This National Institutes of Health study illustrates that impact.

Depression and isolation

Surveys show that people with disabilities often experience a sense of social isolation and loneliness, which can also lead to depression and other mental health issues. Inaccessible environments and misunderstanding from non-disabled individuals can sometimes lead to feeling left out, isolated or even shunned.

Recent research links loneliness to a number of other health concerns, including a greater risk for premature death, dementia and heart disease, as well as decreased immunity. The mental and physical impact of loneliness and isolation can be tremendous.

Acquired disability vs. congenital disability

Whether you were born with a disability, or have experienced the onset of a disability to injury or illness later in life, can affect how you perceive your disability. In turn, how well you cope with the idea of living with a disability can support a better quality of life –  including your mental health.

Researchers have identified eight phases of “responses to a physical disability” in people who acquired a disability later in life:

“The onset of a chronic illness or disability typically triggers a chain of psychological reactions, which correspond to eight phases of responses to physical disability. Phases 1 to 6 (Shock, Anxiety, Denial, Depression, Internalized anger, Externalized anger) include the initial stages of adaptation (representing negative adaptation to disability), which an individual hopefully goes through, in order to reach phase 7 and/or phase 8 (Acknowledgement, Adjustment), which are considered as the final phases of adaptation and represent positive adaptation to disability.” (Source: European Journal of Counselling Psychology)

For those who achieve the Acknowledgement and Adjustment phases, mental health and quality of life outlooks are much better:

“Researchers have found that persons with acquired physical disabilities, who adjust more successfully to their disabilities are physically and psychologically healthier. On the contrary, the difficulty of an individual to accept his/her physical disability has been associated with poor physical health and several psychopathological symptoms.”

In a wonderful piece for BBC Radio’s “Point of View” program, sociologist Tom Shakespeare describes his experience with a congenital disability, achondroplasia, as well as an additional disability that occurred later in his life:

“If you think about it for a moment, you realise that people born with an impairment have nothing to which they can compare their current existence. Someone lacking hearing or sight has never experienced music or birdsong, visual art or a sublime landscape. Someone with an intellectual disability may not consider themselves different at all. Someone like me, born with restricted growth, has always been that way. Even if life is sometimes hard, we are used to being the way we are.

For people who become disabled, there’s a typical trajectory. I can say this from personal experience, having become paralysed in 2008. Immediately after the onset of injury or disease, one can feel profoundly depressed, and even contemplate suicide. Yet after a period of time, people adapt to their new situation, re-evaluate their attitude to the disability, and start making the most of it. Sometimes, they are driven to greater achievements than before.”

Shakespeare points out a common myth that people with disabilities are sad or have a low quality of life. On the contrary, he says, many people with disabilities report high levels of satisfaction and a good quality of life.

Taking care of your mental health

As noted above, living with a physical disability doesn’t have to mean a lower quality of life, and there are several steps you can take to support your mental health. They include:

  • Talking to your doctor. When you visit your primary care physician or specialists, discuss your mental health symptoms as well as your physical ones. Your doctor can often connect you with helpful resources.
  • Working with a therapist. A trained therapist can help you work through the phases of coping with and accepting your disability, as well as give you tools and techniques for changing negative thinking and developing positive coping strategies.
  • Exercising. Exercise has been shown to boost endorphins and support mental well-being. In this article for Psychology Today, wheelchair rugby athlete AJ Nanayakkara discusses the positive impact people gain from participation in wheelchair sports.
  • Finding social outlets. Cultivating friendships and a social network can help prevent feelings of loneliness, isolation and associated depression. Join a local interest group, take a class, try a sports club, or talk to your therapist about other ideas for connecting socially.
  • Developing a mindfulness practice. Numerous studies have shown that mindfulness and meditation can help prevent or offset the impact of stress and anxiety.

About the Author:

Scott Kohner MSW, LCSW is a psychotherapist in Denver, CO working with individuals, couples, and families. To learn more about Scott, visit www.ScottKohner.com.