My father was diagnosed with Wernicke–Korsakoff syndrome, a form of dementia resulting from chronic alcohol abuse. My dad, who worked hard his entire life, raised a family and built a strong reputation in his community, spent the last 10 years of his life succumbing to this terrible disease that befalls so many. After the official dementia diagnosis, I was appointed his guardian and my family and I made the excruciating decision to place him in an assisted living facility. This past year, I’ve experienced everything from anger to guilt, from optimism to despair.
Since becoming one of my dad’s caregivers, the people I’ve leaned on the most are my friends. Somehow, my friends just get it. I don’t need to tell them what questions to ask, when to ask them or when to leave me alone. In the beginning, however, my husband and some other close family members had to be reminded how to react to the very fragile and stressed side of me. I am happy to report that after a few meetings of the mind and heart, my own circle of caregivers, including husband and family, is right on track. I decided to write this article to provide some tips to the wonderful people who are caring for caregivers.
The Do’s and Don’ts
DO LISTEN – It may seem like a simple concept; but for some people, the idea of listening can be a hard job. Once, early on in my dad’s journey, I returned home from one of the worst days of my life. The day involved a neurologist, an escape attempt by my father and a deputy sheriff. You get the picture.
When I walked into my house that evening, I was distraught and grief-stricken. My poor husband had no idea how to react to me. When I tried to describe the day, his response was, “Well, you’re home now. Don’t worry about it.” He then proceeded to watch TV. After a little yelling and a lot of crying on my part, we came to an understanding. A word of advice to those caring for caregivers: when your loved one is stressed or wants to talk about their day, just listen. Stop what you’re doing and give them your full attention. You don’t even have to speak. A hug every once in a while wouldn’t hurt either!
DON’T OFFER UNSOLICITED ADVICE – This is another toughie for the folks who love and care about caregivers. It’s hard because you hate to see your loved one in pain. Each time the caregiver in your life comes to you with another problem or unpleasant situation, you try to fix it. It’s very common and well-intentioned. In my case, a few family members were very eager to give unsolicited advice.
During his first memory care unit experience, my father was involved in an altercation with another resident. As with most of these cases, there were about five sides to the story. In the end, however, it was my father who was discharged from the facility. We all believed, including me, my aunt and the ombudsman I had enlisted for help, that my father had been treated unfairly. In the one or two hours my aunt and I had to make vital decisions about my father’s immediate care, I’m sure we made a few mistakes and in hindsight, probably would have done things a little differently. However, we did the best we knew how under the circumstances. But that didn’t stop a few family members from telling us exactly what we had done wrong. If you’re caring for a caregiver, stop before you offer advice. Remember, chances are the caregiver in your life has never had a dress rehearsal for this role. They’re doing the best they can and will ask you if they need your advice.
DO GIVE THEM THEIR SPACE – Space, the “vital” frontier. When you’re given the enormous responsibility of caring for someone else, you feel like you’re in a fishbowl. Family members, doctors, bill collectors, you name it are constantly in need of something. Occasionally, I need time and space to recharge my batteries. Whether it’s a nap, time with friends, a massage or a weekend away, caregivers need to take the time to care about themselves. When the caregiver in your life says they need a break, don’t hesitate – pack a suitcase, make reservations for a weekend away, or just follow their lead. Time and space away from the duties and responsibilities of caregiving is essential to avoiding burnout.
DON’T GIVE THEM A GUILT TRIP – I live in the South and down here, guilt is something we pass down through generations, like broaches and pound cake recipes. Before I became my dad’s caregiver, my husband and I spent a lot of free time together. We don’t have children, so we had the luxury of spending the weekends hiking, gardening or doing a whole lot of nothing. When my dad was diagnosed with dementia, my home life and much of my work life was sucked away. I had to spend days on end with my dad and family visiting assisted living facilities, meeting with lawyers, and talking to social workers. When I was at home, I was either on the phone talking to my dad, talking about my dad or doing paperwork. My husband quickly felt abandoned. He got in the habit of making me feel guilty any time I spent attending to my dad’s needs. I explained that this only made my highly stressful situation worse and it only made me resent him. He eventually came to understand that this was my choice and the only way for us to be a functional, happy family was for him to support me. Again, the tough parts are only temporary and it’s a lot easier if you support the caregiver in your life.
DO HAVE EMPATHY – As Atticus Finch said in the wonderful novel To Kill a Mockingbird, “You never really understand a person until you consider things from his point of view—until you climb into his skin and walk around in it.” If your caregiver’s family member doesn’t already live with you, make a point to accompany them to visit their loved one from time to time. This will give you a glimpse into their world and what they are going through. In my case, my dad lives two and a half hours away. It takes every ounce of energy I have to get in the car, drive to see him, spend time with him and then drive another two and a half hours back home. Doing it alone can be downright drudgery. It’s nice to have my husband along so that I can vent, cry or even laugh. This has also really helped him see what I go through and why I sometimes need that two hour nap when I get home!
DON’T JUDGE – No matter what your loved one’s relationship is to the person they’re caring for, remember, it’s their choice to be the caregiver. In my case, my husband didn’t understand why I wanted to take on the responsibility of becoming my father’s guardian. My father and I weren’t very close when I was growing up. Add this to the fact that his dementia was most likely brought on by alcoholism and my husband had a couple of handy rationales as to why I should wash my hands of the whole thing. I had to explain to my husband that the past doesn’t matter and I wouldn’t be able to forgive myself if I didn’t do everything in my power to make the rest of my dad’s life comfortable. So, no matter the circumstances, leave the judgment out of it, accept your loved one’s choice and support them in any decision they make.
DO LAUGH – It’s been said that laughter is the closest distance between two people. No truer words have been spoken, especially when it comes to caregiving. Laughter is the main thing that has gotten me through this past year. My aunt and I have a saying, “If we didn’t laugh, we’d cry.” Even though there have been a few times when we never thought we’d ever see another ray of sunshine, my aunt and I have somehow been able to find humor, and sometimes in the most bizarre, morbid places. When I try to explain some of the perversely funny things I’ve seen and heard since taking over my dad’s care, some of my friends and family look at me as if I have two heads. I want to say to them, “Hey, lighten up! It’s okay to laugh.” So, loosen up and follow your loved ones’ lead. If they’re laughing, join in. It’s contagious and that’s a sickness everyone can afford to catch.