Come Back Early Today will touch you. It will make you laugh. It will make you cry. If you’re caring for a loved one with Alzheimer’s It will give you information and advice. But mostly, it will give you hope. ____________________________________________
This is the true story of an amazing 30-year relationship between a young American woman and a delightfully colorful, wickedly eccentric and considerably older Romanian gentleman who develops Alzheimer's about 25 years into their relationship.
Once I got into this book, I could not put it down. It is a roadmap to supervising the care of a loved one who has dementia. Here are the passages which I found helpful, or just enjoyed:
"“Kitty, should I take the blue shirt or the white one?” “Take the blue one.” “Oh! No! I want to take the white one,” he’d tell me. “Okay, Kitty. Then take the white one.” “No,” he’d insist. “I really want your advice.” “Well, if you want my advice dammit, take the blue one.” “But I don’t want to take the blue one.” And so it would go with every single piece of clothing that went into the suitcase."
"My brain felt like someone had put an electric mixer in it and turned it on high. I was afraid I was going to lose my mind – literally, not figuratively. Everyone was pressuring me to take Ed to Alois against his will, and I was just not quite ready to do it. I knew he had to go to a facility and soon. His life was in danger. But if I did, he’d never speak to me again; he’d be alive but dead to me. Would our love really end that way? All I did was think about my dilemma. During lunches with friends, at work, and at home. How can I do this to him? My mind was constantly churning on the Ed issue, no matter where I was, who I was with, or what I was supposed to be doing. I didn’t even pay attention during meetings at work. I sat at the large conference room table full of ‘normal’ people discussing ‘normal’ issues. I had no more interest than if they were reading the phone book aloud. All I did was think about Ed and the impasse I’d reached. That problem was the last miserable thought on my mind as I fell asleep every night and the first thought to enter my consciousness the moment I woke up each morning. I began to hate waking up. I wished I could just sleep all day."
"In my mind I repeatedly listed all the reasons I should commit Ed. And the reasons I shouldn’t. Finally, one morning over coffee in my little kitchen, I gathered the strength to do the right thing. I decided I would move Ed against his will. I set a date: August 8th. Only ten days away. I was proud of myself for making the decision. And I was scared. As moving day approached, my mental state started deteriorating. My fear that Ed would never speak to me again took on gigantic proportions. I felt like a criminal planning a shameful crime against someone I loved; against a vulnerable man who trusted me and depended on me. I was paralyzed. All I could do was eat, sleep and pace the floor. I stayed home all day; didn’t even go to work one day. And then another day and another. I sat in my little kitchen, where I’d made the decision to take Ed to the Alois Center, forehead resting on the table, my hands clasped around the back of my head. At that moment I faced the devastating truth. I was not capable of doing it. Over my own fierce objections, I canceled the move."
"At most facilities the staff members usually first try to redirect the resident’s attention. But if that doesn’t work and the outburst is strong enough and potentially dangerous to the resident or others, they may decide to give the resident a mild tranquilizer. I received several calls from the nurses at Alois to tell me he’d had yet another temper tantrum and they were going to give him an Ativan. Sometimes even the nurses seemed embarrassed, although I always told myself that they were used to this kind of behavior and knew that it was caused by the illness. Before too long, however, I would find a wonderful solution to this problem that would end most of his angry outbursts. But not before the situation got even worse."
"Ann, the Center’s social worker, had warned me. “Just when you come to terms with their state of illness,” she had said on several occasions, “they get worse.” Well – he’d just gotten worse."
"“What should I do now?” he asked plaintively. “Do whatever you want,” I answered as I waited for the door’s thirty-second delay to pass. “I don’t know what to want,” he said. I was blindsided by his remark. He seemed so lost. “Well, why don’t you just sit in this nice chair here for awhile?” He sat down obediently. “How long should I sit here, Kitty?” “Sit however long you want,” I said, turning from the door and walking back toward him. “Kitty, I don’t know how long,” he said, looking forlorn. “Okay,” I said. “You sit here thirty minutes.” “Thank you, Kitty. I will sit for thirty minutes here. What should I do then?” He looked at me as though I had the answer to all of life’s questions, including that one. My heart sank as I realized he had reached the point of needing specific instructions for what to do every moment. “Sit here in this chair for thirty minutes,” I said, kneeling in front of him. “Then go to your room. When you get there, get ready for bed. I will visit you again tomorrow.” As though he could remember all these instructions. “Oh, Kitty,” he said, “Thank you for your guidance. It r r really means so much to me.” And with that we blew each other kisses again and I left. I was completely overwhelmed by his further descent into dementia. This formerly brilliant lawyer and professor could no longer even decide how long to sit on a chair."
"Worst of all, though, were his repeated angry outbursts toward me, the staff and other residents. When he lost his temper with me, sometimes I didn’t want to visit for awhile. And sometimes I actually didn’t. Alzheimer’s patients’ behaviors often lead to tension between the patient and the primary caregiver, and it’s normal for caregivers to feel anger and resentfulness at times. I knew he couldn’t help it and I felt guilty for being mad and visiting less, but I was only human and I could only take so much of his temper. Knowing he couldn’t help it was one thing; standing there and allowing myself to be yelled at was another."
"He diagnosed Ed with depression and obsessive-compulsive disorder. He initially prescribed Desyrel for Ed’s depression and Luvox for his obsessive-compulsive disorder. Soon he added Zyprexa to help stop Ed’s periodic psychotic episodes. He also prescribed Aricept for his dementia. I have to admit I was concerned about the Zyprexa. Based on my own research I’d learned that Zyprexa wasn’t really recommended for elderly dementia patients because it was associated with an increased risk of stroke and death in that population. I had to give that serious thought. Were the possible side effects prohibitive, or should I opt for a chance at a better quality of life? Ed was 92 years old. How much longer could he possibly live anyway? It was an agonizing decision, but in the end I decided to go for a chance at a better quality of life rather than a potentially longer life disturbed by the type of frightening delusions and hallucinations he’d been having. I sat back and waited to see what would happen. I carefully observed Ed’s every behavior and daily mood, waiting to see whether those medications would help. I waited. And waited. And waited some more. Finally, after about three weeks it paid off. Ed still had delusions but they were much less frequent and less intense. Most surprisingly, his obsessive-compulsive behaviors completely stopped. No more torn newspaper strips, no more folded napkins, no more rituals of any kind. Furthermore, he began sleeping more at night and napping less during the day. His angry outbursts decreased dramatically, although he’d still have an occasional fit. His appetite improved as well. He’d been seriously underweight all his life. He was 5’8” and had weighed only 102 pounds when he entered the Alois Center. But during one of my visits some time after he’d started the medications a nurse came in and asked me to buy him some larger pants. He was up to 113. And a few months later the request was repeated. He was up to 124. I was delighted. The most I’d ever known him to weigh was 125, and that was when he’d temporarily gained weight when he quit smoking. The most dramatic change, however, was his overall mood. In a word, Ed was transformed, and fantastically so."
"Clearly Ed was far more at peace than before. Right or wrong, I attributed those remarkable changes to the medications that doctor had prescribed. I never met the man, but in my mind he significantly changed Ed’s life and our relationship. To me he was the most important health care professional ever involved in Ed’s care either before or after he entered the Alois Center."
"I found another article stating that the psychological toll of caring for a demented loved one was so great that most caregivers were actually relieved when the person died. I felt overwhelmed."
"One day I couldn’t bear it any longer. I thought it might be less sad to stop reading about grief and start studying caregiver stress. After all, even though Ed was in a facility, I was still one of his caregivers. I found several articles online. One said that many caregivers feel more depressed while caring for a family member with Alzheimer’s than they do after the person dies. Another stated that placing a loved one with Alzheimer’s in a nursing home is no panacea for the guilt and depression many caregivers feel. I was wrong. The articles about caregiver stress were just as sad as the ones about grief."
"Reading about Alzheimer’s helped me understand what was happening to Ed, while also helping me make sense of what was happening to me. According to the Alzheimer’s Association website, the burden on caregivers is so great that taking care of their loved ones significantly increases their emotional stress and endangers their own physical and mental health. I understood that all too well. I was distressed, depressed, and confused."
"One morning I realized I was actually looking forward to visiting Ed. A profound change had taken place in me. I no longer felt bored, dejected, unloved and unloving during my visits. I enjoyed them and left feeling emotionally satisfied. It was clear I’d had a dramatic change of heart. And what was more, I could pinpoint the day it started. It was the day when, on a whim, I took Ed the miniature chick he’d so proudly named The Little Yellow One."
"“How’s he doing today?” I asked, expecting the worst. “Oh, he’s fine,” she said with a little laugh. “He’s stopped asking to go home.” “He what?” I asked, stupefied. “Yeah. He’s already forgotten he was moved and he’s settled into his new room as though nothing’s changed. He’s in a real good mood this morning,” she said, eyes twinkling. “Go in and see for yourself!” I stopped in my tracks and let her statements sink in. “So I’m the only one who’s still suffering,” I said. “Yes. It’s often like that. Residents usually adjust to changes more easily than their loved ones do.”"
"Pat started to correct him, as she would have done with her mom, but I motioned for her to let it go. I’d mentioned to her that it was often wise not to correct demented people when they said something wrong, but to try to connect with them on their level."
Too many years one has to spend to find his identity but it takes a tick of the leg on the clock to kill what one has earned all his life. How many hearts it would break, or how many times a heart can afford to be broken? The fearful thoughts of the withering mind and body must be haunting. The pains of being in such a desperate stage of lost is unimaginable for us bystanders. Never is it fair for us scale it disregards to the greatest empathy one could offer.
We need and we need to be needed. The painful physical and cognitive deterioration put one in the stage of dire need and deprive him of any chances to be of any value but a burden to anyone around. Is it the worst form of illnesses that the mankind has to endure? I cast no doubt. We are dying physically since the day of birth, that the soul is what we try with our life efforts to nurture. Sheer physical existence- differ us from animals in any possible way?
Cancer patient can scream and complain about their pain of the growing tumor. HIV carriers can come out the closet and seek consolation and empathy from others in the name of their mishaps. But how could one cross his heart that he could fairly and passionately nurse a Alzheimer's patience whom is no longer who he once was and now wrecks havocs on the ones loving him the most. The merciless illness does the patient no justice that he could not even give a legit reasons for anyone to be around but giving the every reason for everyone to leave. Hearts are broken and will never be mended. The soul and love have gone, how can it be retrieved? The enormous doubts and tensions grow in the family and friends must be hard to stand.
We dishonor life.
Even we are physically sound and mentally well, we live to work for survival without any appreciation for the essence of the blessing we are enjoying everyday. We impose the same policy upon the sufferer by merely providing basic survival assistance to the elderly without addressing the real needs of their souls.
We deem life a burden.
How dare we.
Love is a practice. Living is an art. The way we love- is not merely in saying but in actions. The complete devotion and trust give ground for the souls to thrive. It could be hard along all the way as we learn. But it is worth it, as it lets you see the best in human.
It is good to be here. It is good to be breathing. It is good to love. It is good to be loved.
Remember- You will always live in the hearts of the ones loving you, forever and for ever. And I will love you until the of the time. I will, with all my heart. Everything will be fine. Love your life as much as I love yours. Presence gives forlorn comforts, it is the trust and freedom given that matters.
I was given this book by another site in ebook form in exchange for a review.
Since I've had volunteer experience with special training in caring for dementia/Alzheimers patients, I appreciated what this book had to offer. I got caught up in it at the start and found it to be informative, funny, sad, touching, and always interesting. Dr. Marley did a great job, from the onset until the finale, of relating what it is like to deal with a person who had dementia. She showed us it was not an easy job, but there were ways to deal/cope with it to make things better for the patient as well as the caregiver.
The relationship this author had with Ed, her life partner, is shared with us and we soon come to realize that this was a very loving relationship. Her commitment to him as he progressed through the different stages of Alzheimers was amazing. She had to change also as she learned new ways to deal with him.
This book could be used as a guide in dealing with dementia/Alzheimers patients. It's that good!!
I wanted to read this story because I am one of the caregivers for my Grandma who has dementia. I could really relate to this story. It isn't just a touching read, it is also a teaching tool. I recommend this book to anyone who has a friend of family member suffering from dementia or Alzheimer's. This beautiful story will show you that you are not alone in your struggles. Indeed the pages are filled with a roller coaster of emotions - happiness, sadness, regret, and hope. One moment I was crying and the next minute laughing.
I only have two minor complaints. The story started a little slow and it jumped around a lot. It took me a while to get used to the author's style. There would be an incident in present day and then mention of an incident in the past.
A charming memoir of a decades-long friendship between intellectual (and Romanian refugee) Ed and musicologist/grant-writer Marie, set against the backdrop of Ed's progressing Alzheimers. Not an advice book - though full of good ideas and educational situations - this is instead a book that lays bare the reality of watching a dear friend go through the stages of dementia: the difficulties of knowing how to react, the pain that confusion can bring, and ultimately, the realization that living in the moment is the key to a joyful existence for them both. The writing style is a bit conventional in places, but never amateurish, and the compelling nature of the characters, and the story being told, is more than enough to compensate. Recommended.
I first discovered this book after I read an article on the Huffington Post website written by Dr Marley. Dementia and Alzheimer's are things that have affected my family and it is a secret fear of mine. I also like autobiographies, so I went ahead and bought the e-book and began reading immediately. Dr Marley describes her life with her partner of 30 years, Dr Edward Theodoru and how his dementia affected their last years together. It moved me and brought me to tears several times. It was not a sad book, rather, it was a book that conveys to the reader that love and happiness is possible, even when you think things can't get worse.
"Come Back Early Today" is a beautiful true story of a man and woman and their special relationship. It is written by Dr. Marie Marley, and she tells us about her journey with her lifelong companion, Ed, who is diagnosed with dementia. I really enjoyed the book, and although it was really sad in parts, the author balanced it by sharing her joyful experiences as well. I appreciated all the detail and I could see and feel her heart and soul as I turned the pages. A captivating and heartwarming memoir about the personal experiences of lives affected by dementia.
I googled books that might help me be a better friend to a dear friend with Alzheimer's. This book sounded perfect. The author had PhD in psychology and helped her longtime partner during his years coping with this terrible disease. The author's degree is in musicology which is obvious when you read the book. The book was beautifully written but was more about how the disease was affecting her rather than how to help her partner. I am glad I read it though. There may have been a page or two of suggestions of how to help.
An amazing book that enables the reader to view the world of the carer of an alzheimer sufferer, allowing empathy but not sorrow. Mixture of laughter and fear as it was read a must read for those working with or living with a sufferer of this disease. Thoroughly enjoyed.
This heartbreaking tale of a Nan's descent into Alzheimer's is poignantly told by his ex-lover and long time friend. I liked the book and found the story sad but filled with bright spots including the way that the fascinating life of the man losing his faculties, is explored c