It may be hard to imagine, but for some families, dementia has a silver lining. The diagnosis may bring families closer as members work together to solve a common challenge. It forces intimacy when bodily functions become less personal. And it can cause relatives to depend on each other for emotional support.
More often, though, dementia sparks conflict, guilt, grief, sacrifice, uncertainty—negative emotions that can affect the quality of life for the person with dementia and their loved ones. Studies show that more than most other diseases, dementia increases stress and decreases mental health and well-being in caregivers for a variety of reasons:
• Caring for someone with dementia is difficult, time-consuming, and may necessitate the caregiver leaving their job and abandoning hobbies and relationships.
• Dementia can be isolating because it’s so individual.
• The progressive and unpredictable nature of dementia makes planning difficult, increasing uncertainty and anxiety.
• Many family members experience guilt when caring for someone with dementia, wondering if they’re doing enough for their loved one.
• Adult children of people with dementia may find themselves bathing, dressing, and feeding their parents. The resulting sense of loss can cut both ways: Adult children grieve the parent they knew, and the person with dementia—depending on how lucid they are—may grieve the effect their diagnosis has on their children.
• Frustration can arise when the care recipient is unable to express gratitude.
You may be dealing with these stressors and/or others, making your experience with dementia far from any silver lining. If that’s the case, here are some ideas to help maintain your well-being and navigate the land mines of family dynamics and dementia.
Remember that what you’re experiencing is normal. All your emotions are shared by millions of loved ones around the world. You may feel alone—you’re not.
Stay flexible. Dementia is not fixed. The disease evolves and changes so what you’re handling right now may change next week. Try not to fixate on one way of doing things.
Be patient. This is easier said than done. But try to keep in mind that your loved one isn’t intentionally being difficult. The best care you can provide is a healthy dose of patience.
Ask for and offer help. If you’re in over your head, ask your family for support. Try to make your requests specific versus open-ended: “I need someone to do the grocery shopping. I need you to take mom to the doctor on Tuesday. I need coverage on Wednesday so I can take a day off.” Remember that if you need help, other family caregivers may need support as well. Check in and see how everyone is doing and what might make it easier for everyone.
Communicate. Consider weekly family meetings to discuss the latest developments and who’s handling what.
Consider an intermediary. When tensions run high in already fraught situations, the results can be explosive. Try to diffuse the situation before it gets to that point by using an intermediary to negotiate with difficult family members if disagreements about care seem insurmountable.
Hire support if necessary. Bring in professionals if you need to. Professional caregivers, housekeepers, personal assistants, and others can relieve you of the burden of care when it gets too heavy.
Take care of yourself. Studies show that caregivers who adapt to stress share two qualities: optimism and resilience. Resilience is the ability to cope effectively and adapt. Optimism is the expectation of a positive outcome in the face of adversity. Ask yourself what you can do to increase these qualities in yourself. Regular exercise? Time away? Professional support? Banish the misconception that self-care is selfish: you simply can’t take care of your loved one unless you first take care of yourself.
Caring for someone with dementia is especially hard when family dynamics are unhealthy. The most important thing you can do for your family, yourself, and your loved one is to work together and support each other. Quality of life is possible—if you know how to create it.
At Tender Rose, we work to make every day a good day for people with dementia. If you need support, get in touch.
Marin worked in the Bay Area as a travel writer before receiving her advertising degree in copywriting. As a copywriter and creative director, Marin has produced television, print, radio, collateral, digital, and guerrilla work. Current and past clients include Amazon, Booz Allen Hamilton, US Airways, McKesson, T-Mobile, HP, Boeing, Robert Half, Marriott, Ritz Carlton, Synchrony Financial (formerly part of GE), Anheuser-Busch, and many more. She has been published on AdCritic.com and in Print magazine.