Roz Kalb , Psychologist & Peggy Crawford , Psychologist
17 Oct 2017 | ~6:24 Engagement Time
Over 2.2 million Americans are in the “sandwich generation” – simultaneously providing support to aging parents/in-laws and at least one child under age 18. As life expectancy increases, the “sandwich generation” will continue to grow rapidly.
Providing support has significant positive effects (enhancing relationships, creating a sense of gratification, empathy, and responsibility), but also poses financial, emotional, psychological, social, and marital burdens.
“Sandwich generation caregivers” experience, on average, a 30% higher risk of depression, greater absenteeism from work, higher instances of chronic stress, as well as more complicated cognitive and fatigue symptoms.
When a caregiver has MS, these challenges may be complicated by unpredictable, often invisible symptoms as well as reduced mobility and energy or other factors. In addition, caregivers may be reluctant to ask for help or prioritize their own self-care.
MS may challenge the balance in your relationships. Acknowledge these challenges and the feelings that go with them. Find comfortable ways to talk about the changes that are occurring and let go of any competition over who has it “worse.” Caring for yourself and others is a team –effort – so it’s important to work together to maintain a balanced give-and-take in your relationships.
Whether with your support partner, children, parents, other family members, or friends, the keys to a thriving relationship/partnership involve:
Tips for Support Partners
Don’t just worry about the unpredictable future, plan for it. Talk about how to realistically “plan for the worst while hoping for the best. This helps you create a “safety net.” Don’t be afraid to ask questions of your partner’s medical team. Be honest, clear, and focused. The more you know, the better support you can provide.
Stay healthy and rested – balance your work and responsibilities with things that bring you joy. To the extent possible, keep outside activities and social relationships in spite of partner’s limitations. Retain and seek out shared activities.
Don’t underestimate the power of social support (family, friends, support groups), professional support (counseling), and spiritual support – they can promote emotional well-being, help you manage stress and enhance overall quality of life.
Understand your partner’s feelings of anger, guilt, frustration, and anxiety, as well as their current and potential losses in function, independence, identity, and self-esteem. At the same time, it’s important to acknowledge your own current and potential losses in free time, independence, spontaneity, etc. Communicate your feelings to your partner and seek professional help if needed.
“Put on your own oxygen mask first.” Self-care IS NOT selfish! Prioritize your own health, wellness, and stress management and remember that you’re at risk for depression, too. If you’re maxed out, stressed out, or acting out, ask for help. Resistance to accepting help is a common cause of depression and stress. Knowing your limits and reaching out for assistance before you are beyond your limits is important. When asking for help, be specific with your requests.
You’re not alone; there are many resources to help you. Can Do MS and the National MS Society offer several resources focusing on support partners. MS Navigators are also available by calling (800) 344-4867.
Tips for Parents
“Parents with MS discover new ways to connect with their kids and spend time with them. They find things they never would have thought of if MS hadn’t forced them to think differently, to be more creative.” – Rosalind Kalb, Ph.D.
Most children are curious, adaptable, and are far less fragile than you think. It is natural to want to protect them by hiding painful issues, but open and honest communication is valuable and important.
Finding comfortable ways to talk about MS, even with children of a young age, can be an important step in that process. Children find emotional/cognitive symptoms more difficult to understand than physical changes (and may misinterpret them). Younger children may believe they did something to cause their parent’s MS. Many women experience their first exacerbation after the birth of a child, and kids can make the temporal connection that somehow they were responsible.
Focus on what you can do as a parent with MS. If a parent sets a good example in terms of being adaptive and keeping active, kids will learn and benefit greatly. If your MS symptoms interfere with your ability to do things with your children, be honest with them. Explain your feelings and the disease’s impacts in language they can understand. Encourage them to ask questions and share their emotions. Don’t wait until there is a crisis!
Involve your children in your MS, but don’t expect them to function as your primary source of support or personal care. Children will want to take on additional responsibilities, but be aware of the impact on their normal socialization.
Kids will be stressed if you are. Plan ahead, think of creative ways of making the best of difficult situations, expect the unexpected, avoid feeling guilty, and find ways to “share the load” (i.e. babysitting, play dates, etc.).
Look after yourself! Schedule “alone time,” put down your phone, and close your eyes. Fatigue management courses can help emphasize the importance of cognitive rest.
Tips for Caring for an Aging Family Members
The number of Americans over the age of 65 has almost doubled in the last 30 years. As Baby Boomers reach retirement age at a rate of 8,000 per day, this demographic will intensify. By 2030, 1 in 5 Americans will be over the age of 65. Children and other family members may take on increased responsibility for the care needs of aging parents. Make a plan! Open the lines of communication between your support partner, parents, and siblings as soon as possible. The key is “conversation” rather than “crisis management”.
Understand the mental hurdles that aging parents must overcome to accept care and become dependent upon someone else. While one child typically takes on the primary responsibility for direct care, all siblings can provide indirect support, whether it’s by pitching in with paperwork, financial management, or in-person help. Don’t be afraid to reach out and explicitly ask for help from family members, local respite-care programs, and support programs.
In addition to physical care, commit to discussing expenses, estate planning, health care proxies, and living wills. Financial planners can help you understand your options.
Appreciate the upside of supporting an aging parent. The inherent bonding and emotional connection opportunities have been proven to positively affect the quality of life for both the parent and the caregiving child.
Tips for Caring for Yourself
Belonging to the sandwich generation isn’t easy, but there’s no need to sacrifice your own needs. In fact, the better you take care of yourself, the better you’ll be able to take care of others.
Simply meeting your basic needs can go a long way toward combating stress and anxiety.
Choose your priorities carefully and let everything else go. Practice saying “no” to unnecessary requests or demands on your time, and make a conscious decision to make time to care for yourself.
Ideally, that means planning for your parents’ aging well before you reach a point of critical need, but it can also mean investing five minutes to organize and prioritize your day before you head out to conquer it.
There’s a lot of joy to be found in caring for others. Relish even the small moments of connection and satisfaction – they can help carry you through the hard times.
Ideally, you would be there for both your parents and your children at the same time, but don’t feel guilty when you fall short of the impossible. You are only one person, who often has to do three different jobs at once.
It’s not fair to anyone to have to do everything on their own. Find a babysitter to watch the kids a few nights a week, or look into in-home caregivers who can help your parents with their normal daily activities.
You can best provide care for loved ones when your own health and wellness are adequately addressed through exercise, adequate sleep, a nutritious diet, and regular appointments with your health care team. Remember that support partners often experience mood changes, including grief, anxiety, resentment and depression. Document any changes in your mood, find effective ways to communicate your feelings, and seek help when needed.
Emotional signs include chronic irritability or resentment, feeling down in the dumps, continual boredom, excessive nervousness/anxiety, and nightmares.
Thought-related signs include worrying every day, distractibility, expecting the worst to happen much of the time, and difficulty making everyday decisions.
Physical signs include clammy hands or sweating, constipation/diarrhea, dry mouth, headache, heart palpitations, stomachaches, nausea, muscle spasms or tightness, a lump in the throat, faintness, fatigue/weariness, sleeping too much/too little, and short and shallow breathing.
Take regular breaks. Decide on a time, date, and activity and follow through. Make a list of ways you can take a break and nurture yourself, and ask family/friends to hold you accountable for your self-care.