Recently I worked with a family struggling with one of life’s most demanding challenges, early-onset dementia. This version of dementia is especially alarming as it affects only two percent of cases, and symptoms can present as early as age 45. In this case, the family was preparing for a nice retirement in their 60’s when their plans got turned upside down with one simple call. The wife was informed her husband had gotten lost on his route at work. A route he never had gotten off track with previously. Other people could have been harmed as a result. He was asked to step away from his work. She was faced with the reality; something was seriously wrong with her husband. Never was dementia a thought in her mind.
At first, she could still work. Her husband was forgetful, but he always knew where he lived and could be left in the yard or near the home on a walk. It was tough. She would worry, but they made it work for a few years. As time passed, he lost his speech and the ability to be cued. He cannot sit still, doesn’t sleep much, and can’t verbally share what he needs. He gets aggravated easily and isn’t connecting to anyone nearly at all. The wife eventually quit her work to take care of him. He no longer recognizes anyone and because he doesn’t interact well with others, she is afraid he will act out. Like so many of my clients, she is confined to the home nearly 100% of the time. With little to no connection to family, she is hesitant to ask for help not to burden others.
Her family hired me to help guide them into a new phase of support in the caregiving journey. Her kids have watched their vibrant mother and grandmother begin to fade. While her commitment is honorable, she’s drained and forgetful. Like so many caregivers, she doesn’t see the situation as they do. Her needs no longer are a priority; only the needs of her loved one matter. As a primary caregiver, it’s common to lose friends because the similar interests that brought you together no longer exist. It’s typical to stop hobbies or enjoy going out to a meal, even alone. Chances are you stop nourishing yourself at all because there is little time to rest or take a break. Caregiving at this level can wreak havoc on your mind and body, completely zapping you of energy.
Restricting your entire life to caregiving, giving up social time, prayerful time, exercise, meditation, you begin to chip away the ability to balance and keep yourself healthy. Unintentional consequences begin to set in. Resentment, fatigue, and irritability are just a few of the challenges. Worst of all, you become someone who feeds them, bathes them, keeps them from hard, and retreats to a quiet corner to regain balance. You’re not longer a spouse. What good are you to your loved ones if you’re not your whole self?
Your wellbeing is just as important, if not more. Weekly daycare support from a reputable agency specializing in care for people suffering from cognitive decline is essential. They know how to support the needs of a person with daily life skill challenges. They can redirect and provide a safe environment for your loved one to be with others that share in similar circumstances. Your loved one has moments of lucidity. They know life isn’t the same for them, and they have challenges that have changed them. Their disease has stolen their personality and abilities. They, too, don’t enjoy living like a child instead of a spouse. Having a safe place to support them and provide moments of connection with similar individuals can bring down the frustration level. The program will keep them busy, helping balance the effects of sundowners and slowing them with activities that stimulate and make them more tired after an active day.
This disease can be years and years of grieving and loss. Or it can be years and years of support and balance. You will not be a better spouse or a better child for committing yourself to 24/7 care. You will not show you love them more or prove anything to anyone. Not taking care of yourself can take years off your life.
Similarly, a respite can bring a period of one to two weeks for a caregiver to take a vacation with or without the family. Maybe a much-needed beach getaway so the caregiver can sleep in, remember what it’s like to rest, and be still. It can help restore balance and reenergize. You deserve to enjoy life. Hiring assistance is at the very top of my self-care list. If you need referral suggestions, please call me for recommendations personalized to your needs. Let’s find what works best for you and your family.