Caring for an elderly loved one afflicted with Alzheimer's disease (one form of dementia) is often one of the most difficult journeys a family will ever have to take. However, with a little insight the road can be more bearable. And by implementing some creative behavioral techniques to reduce caregiver stress, the experience can become quite rewarding. I have learned these lessons the hard way when I cared for my elderly parents for several years, both with health problems and the beginning of dementia. My father could become extremely difficult -- OK, "challenging" -- while my mother remained as sweet and lovely as she'd always been. 1. Live in Their RealityI remember one day when the senior shuttle brought them home from the adult day care center they loved going to daily and Mom said proudly, "Guess what? Dad got a part-time job today!" "He did! That's wonderful -- what are you doing, Dad?" "Well, I'm taking care of Clark Gable's horses," he grinned from ear to ear. Mom nodded, "Yes, so we have to go shopping for hay tomorrow, honey." My initial instinct was to correct the facts, saying that those horses were long past dead, but instead, I realized that it was kinder to validate what they believed was true and to live happily in their reality of the moment.
"Wow, Dad, what an honor. I am so proud of you," I said as I kissed him and he beamed. By the next day they had forgotten all about Clark and his horses, but I just can't tell you how much enjoyment they got from believing it was true the day before. I was so glad that I had curbed my desire to be accurate and that I didn't spoil a harmless fantasy for them. 2. Emotional Shifting and DistractionThen there were the times when my once-adoring father would get so nasty, screaming and yelling profanities at me, and I'd sob my heart out thinking I'd lost his love forever. He'd yell, "You've never done anything for me. All you want is my money, you bitch!" Finally, I realized that I simply needed to take an emotional shift and refuse to let his comments bother me. I developed a "shield" that his insults bounced off of, and learned to calmly distract and redirect him to something, anything, else he was interested in just to get his mind off his broken-record tirade. I'd say, "I'm sorry you're upset. Say, did you hear they're going to go to the moon again? Let's turn on the news -- there's going to be a big report about it tonight." Or, "We got a letter from Aunt Rose today. Wait until you hear what's happening with her!" Or, "Oh my gosh, the laundry is dry already -- here, help me fold it and put it away before it wrinkles." Or, "It's going to be your anniversary soon. How did you meet Mom, again?"
When my father refused to take a shower and screamed in my face, "I just took one yesterday!" ( it had been a week), there was no way to convince him otherwise. Instead of arguing and trying to reason with him, I'd simply agree and offer a reward. "Really? It seems longer. I was hoping you could do me a big favor and take a shower anyway, as I want the day care staff to know that I am taking excellent care of you at home and making sure you are clean. They might not let you come back to the center if you aren't. Tell you what -- if you take a nice warm shower, I'll serve your favorite dessert tonight!"
I'd make the bathroom like a steam room, heat up his seat in the shower, and put the towels and his robe in the dryer so they'd be nice and warm for him when he got out. He'd grumble and swear a blue streak at me, but then he'd finally go take his shower. Afterward, I'd overboard reward him with hugs and kisses of thanks, and serve him his favorite dessert, vanilla ice cream on anything.
4. Reverse the Question
Sometimes my father would drive me crazy asking what time the shuttle was coming to take them to the day care in the morning. After answering, "9 o'clock," numerous times, I learned to turn the question around and say, "Gee, Dad, I forget now. What time do you think they're coming?" It was so interesting, as oftentimes he'd say, "9 o'clock?" I realized that sometimes he was just trying to make conversation, but at other times he really didn't remember. I'd write the answer on a flash card, so the next time he'd ask I'd say, "I think the answer to that is right there on your card." He could read, and soon he learned to look at the card, get his answer and stop asking. I eventually developed a hit parade of flash cards of his top 20 questions!
5. Validate FeelingsOne day my mother and I were having a meaningful conversation and I was so happy that she was so lucid, when suddenly she burst into tears and cried, "My father killed my mother!" "What? Nooo, Grandpa died when I was a baby. I never even met him. Grammy lived to be 97 and took care of herself nearly to the end of her life. She was a Daughter of the American Revolution and a suffragette when she was young. She was a too tough of a cookie to let that happen. He didn't kill her, Mom. I'm sure he's in heaven with Grammy." "Well, he most certainly is not. He is in hell!" She was so angry and adamant that instead of arguing, I started asking her questions about her childhood, six sisters, and living out on the old homestead near Billings, Mont. Since her long-term memory was still quite good (as are most patient's with early-stage Alzheimer's), she related numerous stories about her abusive father and about how much she had hated him. She went on and on, but after she got it all out, she was suddenly much calmer. Many professionals believe that this process may help someone with dementia release pent-up anger and bring some degree of closure to unresolved issues of a lifetime. 6. ReminiscenceI always encouraged my parents to talk about the old days and reminisce, as they loved to tell their stories, most of which I had heard many times before. And even though some of the facts were now a little bit distorted, it did them a world of good to go back and relive the highlights of their lives. I'd prompt them with questions like, "Where were you the day Pearl Harbor was attacked?" and "How did you propose to Mom?" and "What was it like the day I was born?" and "What do you know about your mother's mother and father?"
7. AcceptanceI cried often that first year watching my parents' decline, until I realized that every generation since the beginning of time has had to go through the heartache of losing their loved ones who came before. I was not unique, and yes, it was simply my turn. I finally accepted the situation and resolved to make the best of a very tough time, for my parents as well as for myself. I finally had everything managed perfectly, but a few years later . . . my parents passed, still in their own home with full-time care, just a few months apart. I am proud to say I gave them the best end-of-life I possibly could, but you can't imagine what I'd give now to hear their stories again. If you are lucky enough to have your loved ones reach old age, enjoy them now, honor them now (even the challenging ones), and be sure to record their stories to pass down to generations to come. And when you resolve to consistently and calmly practice these behavioral techniques, when your caregiving journey is finally over you'll be proud of how you managed your turn. Caregiver Resolutions1. Don't argue the facts -- validate feelings, agree, and live in the reality of their moment.2. Don't use logic or reason -- find a diversion, a distraction, focus on something they like.3. Don't try to force -- suggest and offer rewards.4. Don't command -- ask for their help.5. Don't say, "remember" -- reminisce about the old days.6. Don't say, "I told you!" -- repeat the answer a few times, then turn it around and ask them the same question. Use flash cards.7. Don't let hurtful comments upset you -- calmly change the subject.8. Don't be condescending -- encourage and praise.9. Don't be negative -- be positive and reassure them of your love, your continued support and their safety.10. Don't focus on the decline -- live in the moment, savor the time and the life that is still there.
Jacqueline Marcell is the author of Elder Rage, or Take My Father ... Please! How to Survive Caring for Aging Parents (Impressive Press, 2001), a Book-of-the-Month Club selection, being considered for a feature film. Endorsements include Hugh Downs, Regis Philbin, Dr. Dean Edell and the National Adult Day Services Association, which honored her with their Media Award. Also a recent breast cancer survivor, Jacqueline encourages caregivers to closely monitor their own health. She also hosts an Internet radio program heard worldwide on www.wsradio.com/copingwithcaregiving. For more information, see www.ElderRage.com.
Source: Health & Wellness