Being a caregiver is rarely easy, but it’s even more challenging when the person you are caring for is someone who has cared for you—your parent. Or perhaps you suddenly find yourself caring for a spouse—your best friend. Each family member has a role and responsibilities; that’s how families and relationships work together. Over time, these roles can develop into expectations, so what happens when one member of the family is no longer capable of performing his or her role, whether due to aging, disease or memory loss?
In most cases, the responsibilities are shifted to another family member; an adult child or a spouse. In my situation, my aunt’s memory loss happened slowly and her care became my responsibility. Initially, I assumed control of her checkbook and dispensing her medication, but gradually, my concern grew about her day-to-day safety. Adult children often reduce their hours at work or are forced to quit work altogether to care for a loved one. Spouses are faced with role reversal when the bread winner is ill, forcing the other spouse to assume household duties as well as financial obligations. Grief can set in when couples realize that the life they had planned in retirement is affected as well. Some find the tasks overwhelming to begin with, while others become overwhelmed as responsibilities add up.
Parentification – yes, it is a word. I found it on Wikipedia, “the process of role reversal whereby a child is obliged to act as parent to their own parent or sibling”. As some point, it hits all of us. We want to keep our parents safe, making suggestions to hire an aide at home or telling them that it is no longer safe to drive on their own. Help with finances or medications is sometimes welcomed, but taking away someone’s independence can be met with anger and/or hurt feelings. For a spouse, an equal partnership can develop into a parent-child relationship. Guidance from a spouse can result in an unwillingness to follow directions or lead to resentment; a constant balancing act, never knowing which way to go.
Navigating sensitive issues such as emotions, daily activities, and family relationships caused by role reversals, can create challenges comparable to caregiving itself. In fact, WebMD suggests, “It’s so important to realize that there is a lot of stress to being the care recipient; there are just so many mental hurdles that need to be overcome for the aging parent—like accepting care and depending on someone else almost entirely later in life maybe when you’d like to be financially secure—as there are for the adult child in charge of their care”.
How can we make this role change less stressful for our loved ones and ourselves? Communication plays a vital role. If you and your loved one can speak honestly about concerns, then it’s possible that changes can occur with some measure of acceptance. Make an effort to work together to assess the situation and find productive ways to move forward. sageminder.com recommends to “not parent the dependent but acknowledge and ask for help when needed. The key is to acknowledge the need for change and to adapt”.
Start by adjusting your expectations. If you are still expecting your loved one to carry out the same responsibilities (pay the bills, order medication refills, s etc..) you will be in a constant state of disappointment. It is imperative to modify your expectations from the beginning and plan for the changes so you do not get overwhelmed. Divide up the responsibilities with children, siblings, or trusted friends. Don’t be afraid to ask for help.
With that thought in mind, arm yourself with knowledge. Learn as much as you can about what afflicts your loved one and try to prepare for the future. As an example, if your family member suffers from dementia, visit an adult day program to keep your loved one engaged in life, learn new hobbies, and make new friends, options that offer the caregiver some much needed respite. Being engaged in such activities fills valuable time and helps provide dinner conversation, where each family member has the chance to discuss their day. The nature of the discussions may be different from the past, but the relationships can continue to be meaningful when each person has something to contribute. You can also inquire about home health care agencies and long term care facilities as the need arises. You may never have to do any of these things, but you can be prepared if necessary. Involving your loved one early on in the process will give him/her an opportunity to be a part of the plans for the future –and will reduce guilt on your part.
Create a support system. The Alzheimer’s Association states, “Daily routines can be helpful for both you — the caregiver and the person living with Alzheimer’s. A planned day allows you to spend less time trying to figure out what to do, and more time on activities that provide meaning and enjoyment”. It’s all about balance; your needs and your loved one’s needs. Remember to take your loved one’s likes, strengths, abilities and interests into consideration, while adjusting your expectations. This doesn’t mean you should neglect your own needs and wants. To care effectively, join a caregiver support group; no one understands what you’re experiencing better than someone who has walked in your shoes. Family caregiver supports groups are listed on the Alzheimer’s Association and AARP websites. Ask for help; include family members, friends, and neighbors — you’d be surprised how many people want to help, but don’t know how. Be specific: “Can you drop Mom at the hairdresser? Can you pick up some groceries the next time you’re at the supermarket?” And be sure that you and your loved one eat right, get a good night’s sleep, and exercise. Enjoy time together, take a walk, cook a meal, or go out for a cup of coffee.
Most importantly, continue to work towards a strong, loving and supportive relationship. Life will certainly change; our expectations will need to be adjusted, but a healthy partnership can continue to exist. Take care of each other; try to do the simple things like holding hands, watching a favorite television program together, and maintain family traditions as long as possible. Remember: it’s about a healthy balance; you can focus on your needs, too.
If we can be of any assistance to you at the Kaplen JCC on the Palisades, please do not hesitate to call us or take a look at our website. We offer a wide range of senior programming for your loved one’s needs and support groups for family members. We look forward to welcoming you, your parent, or your spouse to our senior programs.
Written by Marlene Ceragno, MA, CPG, CDP, is Program and Caregiver Services Coordinator for the Senior Activity Center at the JCC. She holds a Master’s in Gerontology and Management of Aging Services from the University of Massachusetts. She is a Dementia Care Practitioner and Credentialed Professional Gerontologist. She has worked in the JCC Senior Department for the past eight years.