I recently finished “Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy” by Marie Marley, PhD. It is Marie’s account of her life partner’s development of dementia, spanning 7 years but also including a lot of stories from their 30+ years together. It is a story about love and about dementia (and many of the things that those encompass).
The book starts with a story about how Marie got a call from Ed’s apartment building. He had been driving the wrong way on a busy road and a woman had brought him home. Ed was 87 and Marie was 50 at the time. She talks about how she tried to get him to stop driving, he refused, and when she started taking over all the driving and shopping, it, luckily, just phased out. Looking back, she knows it was a strong warning signal, but it would be a few more years before she acknowledged that something was wrong and got a diagnosis.
She talks about how it was getting harder to deal with him (not being dressed when he “knew” she was coming to pick him up for an appointment, drinking to excess, fluctuating emotions, putting household items in strange places or not recognizing them, etc.), but she kept on. Not realizing that it was his cognitive decline that was causing these things, but thinking it was due to old age, the drinking, his own personality quirks, or just the combination of them all. She also writes quite a bit about how Ed used to be, how he courted her, the professor he was, how many languages he spoke, how charming he was, and so on. You can definitely feel that she cares deeply for this man, the good and the bad.
The majority of the book is about his symptoms of dementia, how they unfolded, and how she eventually came to realize that he needed full-time care that she could not provide (they did not live together any longer but remained very close). In 2005, she sought out a diagnosis from Ed’s doctor, who briefly evaluated him and confirmed dementia.
One thing that struck me as abnormal, was that the doctor listened to her list of symptoms, later met with Ed, but only briefly examined him with a few questions. There was no blood testing or brain scanning or even more than one cognitive assessment. These are standard practices in ruling out a dementia diagnosis – to see if there would be any other organic cause for the symptoms. This doctor did not do that, though, and actually wrote the diagnosis of dementia in the patient chart after first visiting with Marie and before he had even seen Ed to evaluate him.
Another thing that surprised me was when Marie met with one of her friends in 2004. This friend is a geriatric social worker whose mother had died from Alzheimer’s. She was discussing Ed and the situation with this friend, who said she thought Ed was dementing. And Marie continued to use this word throughout the book – Ed’s dementing. If there were one thing I would change in this book, it would be the use of that word.
The book goes on to tell the story of Marie searching for a good nursing home for Ed, how it was to visit one where more money is spent on the entrance room than on the apartment rooms, where staff don’t have time or patience for the people living there, and has the smell of soiled pants. She then visited another nursing home, the Alois Alzheimer Center, where the people living there were using the entrance space, the rooms were more home-like, the staff was friendlier and noticeably more compassionate. This would become Ed’s new home. In the initial interview process, the Director of Admissions at the Alois Center came to Ed’s apartment for an evaluation (great practice, by the way). She interviewed him and asked a series of questions used in cognitive exams, and then asked a great question – “Ed, what would you do if you had a fire in your kitchen?”
Ed thought for a minute, got a sly grin, and then pointed to Marie and said he would “call her.” This got laughs from everyone, but it also signaled to Marie that there was no way Ed could manage in an emergency on his own and she really was making the best decision for him by finding him a nursing home.
When Ed toured the Alois Center, he loved it, exclaiming that it was Marvelous! and Wonderful! He agreed to move in within a few days. He noticed “Alzheimer” on the sign as they were leaving and was not happy with this as he didn’t have Alzheimer’s disease (understandably so). He agreed to still move in if they would change the sign 😉 After the movers had been booked, however, he said that he had never agreed to move there and absolutely would not. Another visit to the Alois Center got the same Wonderful! and Marvelous! response, but again, the movers had to be cancelled because Ed refused to move. While Ed didn’t remember previous visits at the Alois Center or agreeing with his doctor and Marie that he would move, this was especially hard on Marie. She started to get advice and plan for forceably admitting Ed to the Alois Center, which took quite the emotional toll on her. Then, one day, Marie “won” the debate about moving him somewhere safer when Ed misunderstood the conversation and asked “who’s stopping me from going there?” He moved in the next day.
The second half of the book is about Ed’s new living situation, Marie adjusting to spending less time at Ed’s apartment and running errands for him, her changing role as a care partner, and stories of Ed’s continued decline. She talks about how it was difficult for her and she started to not look forward to visiting him at the Alois Center because it was boring and a bit depressing to try to have conversation with him.
She did a smart thing and got away.
When she returned, she debated about bringing him a small stuffed chick as a present. Boy was that a good idea! Ed loved it! She was happy to see him so happy and started bringing more stuffed animals (he called all stuffed animals puppies 🙂 ), and her time with Ed became more enjoyable. She started to realize ways that they could connect and enjoy each other as Ed is now, rather than mourning for the Ed he used to be.
His fervent gratitude for the many little stuffed animals I later took him, the fun he had playing with them, and his joy with the “beep game” and other little games I subsequently invented, all made me feel joyous, too. I realized that little by little and without noticing, I had accepted his illness and I had found new ways to relate to him, ways that were genuinely satisfying for both of us. Just seeing him smile and hearing him laugh had become more than enough to make up for losing our previous relationship. My heart had changed forever.
After he moves into the Alois Center, though, she starts referring to Ed’s dementia as Alzheimer’s. And, I gotta say this doesn’t sit so well with me. First, because he never got a proper dementia work up before diagnosis, but now that she starts calling it Alzheimer’s with no further reason for doing so. No one re-evaluated him and determined it was Alzheimer’s. Perhaps it was just because he was in the Alois Alzheimer Center or because, like many people, she saw Alzheimer’s and dementia as the same thing. If you want a quick read on the difference between Alzheimer’s and dementia, please see my post on that.
She connects with a coach through her local Alzheimer’s Association. They offer a free online coaching service for care partners. She developed a wonderful, supportive relationship with that person and that seems to have made a big difference for her. This coach helped her to find information and learn about dementia, listened to her during some of the personal struggles that a care partner experiences (no longer being able to talk on the phone, feeling lonely, needing someone to talk to and share joys and sadness), and it was also helpful for her in getting his affairs in order.
Marie does many wonderful and creative things for and with Ed throughout the book. She got inventive with her role as partner after some respite and could see Ed as his was rather than how she remembered him.She based these activities on her deep knowledge of Ed’s life and what he enjoyed. She brought in a violinist to play music for Ed, she would bring in new purses and coats for him to explore the pockets and compartments, she brought him the “puppies,” she brought in her dog to visit Ed and the others who live there, her photography, played CDs with him, and many more. And this is what we all would want, right? Personalized care – someone who thinks about what we would enjoy and then participates in it with us.
There is another conversation in the book that I really liked. She was meeting with the hospice doctor and asking about how much longer Ed might live. The doctor, wisely, refused to speculate, but told her a piece of advice that really helped her. This opened her eyes as to what she can still do for Ed. And also helped her to focus on his remaining life instead of his impending death. I think this was wonderful advice, and is useful at any stage of dementia.
The caregiver’s real question should be “How do I help this person have the highest possible quality of life during the time he has left?”
It is funny and touching and just a beautiful story. You can really tell how much Marie loved Ed and that she really thought highly of him. Not only through the stories she tells of him, but also how she notes when staff or other people tell her how charming, adorable, and enjoyable he is to be around.
This book was a good and easy read for me, it is well written, personal, and an interesting story. All in all, I really enjoyed this book and would recommend it to others.