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The Gift of Alzheimer’s

The Gift of Alzheimer’s
The Gift of Alzheimer’s
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November 6, 2018
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Author and care partner Mary Hogan has a huge sense of humor. Despite her husband Bob’s diagnosis of Alzheimer’s in 2013, she still laughs a lot. In fact, Bob is the reason she has laughed so heartily over the years.

Mary’s latest book tells the story of a woman who develops a fantasy life as a coping mechanism as her husband’s dementia advances. Mary talked to us about her role as a caregiver — and how she is proactively preparing for the future that lies ahead.

Tell us about "Left: A Love Story," your latest book. Was there some truth mixed in with fiction?
When I originally had the idea of telling this story and talking about the symptoms of my husband’s Alzheimer’s disease, it was hard to make up a story about it. I knew the truth, but I didn’t want to say anything to mislead people. Everyone’s story is different, and everyone’s experience with dementia is unique. I wanted to respect that … I felt a sense of responsibility about telling my story.

I had the idea for a hybrid of a memoir and a novel when I was writing. I told the absolute truth about many things that happened and then invented what I needed to. I ended the book with what I envisioned my life down the road would be like, after going on my Alzheimer’s journey.

For Bob, memory issues weren’t an early sign I recognized; those issues came much further down the road. The signs I did see were in relation to things like judgment and sequencing. Bob would take two hours to do a small 20-minute task around the house, and he had issues with what came next. I’d say, “Why do you have so many tools when you only need a screwdriver’?” It was harder to evaluate at first. It wasn’t like when someone forgets the name of their grandchild. For some people, it wasn’t that obvious.

People have asked me why I didn’t suspect or assume the cause of his behavior was Alzheimer’s sooner than I did, and that’s a big “Hmmmm…” question. Only I understood that my husband wasn’t himself in the way I knew him to be, and while I did suspect cognitive impairment early on, it took me a bit longer to get Bob on board to go and get tested. And a big part of him going was just to get me to shut up!

Tell us more about what the experience of writing the book was like.
It was a coping mechanism. When Bob was first diagnosed, I was so upset and scared once I realized what was coming. It was terrifying. In New York, memory care can be $17,000 a month. I worried about losing him, losing my future — how was I going to handle this? In the early days after Bob’s diagnosis, I used to just write. It made me calmer.

Early in the book, the main character walks her dog past an apartment building. She has a crush on this beautiful building, a fantasy that everything inside of it is perfect. This happened to me. This was true. I walked past this building, crying behind my sunglasses because I was trying to figure out what to do. How could I solve this problem?

Writers often cope with stress by writing things down. It’s not exactly a journal, but it’s stories about how this fictional woman I was creating could navigate her way through something that the real me was so frightened over.

How have things changed since Bob was diagnosed?
It can be frustrating for a caregiver to have a loved one so absorbed with him or herself that they cannot see beyond that. There was an incident on an overnight flight to California. We were midway into the flight, and Bob and I had our headphones in, watching movies. Suddenly Bob screamed the top of his lungs: “What the hell? Stewardess!” Everyone on the flight wakes up, and I am trying to hush him in embarrassment. The flight attendant rushes to us and we realize that with his headphones in, he had his elbow on the sound button, all the way up. The sound was deafening! I bust out laughing; what else could I do? Bob has morphed into someone who has a strange sense of entitlement, and that is one of the hardest things to cope with. He can’t see beyond himself. Being embarrassed is something only I deal with, and I accept that.

Would you tell us more about Bob and your marriage?
Bob is 20 years older than me. His symptoms first appeared in his 70s when I was in my 50s.

Bob was an actor — a really funny guy. We have one of those marriages that makes everyone else sick. We love doing mundane things like going to Costco together and we hang out all the time. To this day, he is my best friend.

To an actor, Alzheimer’s can be a very bizarre and interesting thing. When Bob started losing the ability to retain lines, we assumed that was it; it is obviously a huge turning point for anyone when he or she has to stop working. But his agent said not to worry. People in the industry were very accommodating, even suggesting an earpiece as a potential option onstage. It was almost the opposite from what you would expect with other professions. When people hear that someone has a cognitive disease, they often are rushed out the door. Instead, his industry embraced him and tried to help him work as long as he possibly could — and he did. That was both the happiest and the saddest thing.

As wife and a care partner, I had my hesitations and doubts. Bob was hired to do a play outside of the city and I wondered what my job was. I didn’t want to tell Bob he couldn’t do something; I wanted him to try it on his own and see what came of it. He ended up having to quit the job, but I let him learn what he was capable of on his own. I didn’t want to prevent him from having any work experience, and I am so grateful that other creative people were open to the possibilities.

Bob is still very funny. We spent so many years together laughing and that’s the biggest thing that has gotten us through his diagnosis and what has come since. It will be the thing that I will miss the most.

Tell us why you are so passionate about an early diagnosis of Alzheimer’s.
I would love for people to shorten the time between when a spouse or family member realizes something wrong and when a person agrees to get tested for Alzheimer’s or dementia. If that period could be shortened, it would make such a difference — the earlier the better. Even if a person turns out to have something else wrong with him or her, you can get answers.

Some people are so terrified of knowing that they won’t see a doctor at all. Encourage family members not to allow that happen. Nag and whine and cry and sweat to get the person tested. In Bob’s case, his diagnosis came early enough to let us enroll him in a clinical trial focused on exercise. If you can participate in a trial, you absolutely should.

There is a real peril to ignoring or denying the symptoms of Alzheimer’s or dementia. There was a two-year period when I was frustrated and couldn’t get anyone to be on board with me. I really feel like Bob and I lost two valuable years. There is a lot of truly compelling evidence about catching this disease as early as possible.

In what ways have you made proactive choices for Bob’s well-being and your own well-being?
We put in a new wider doorway. We outfitted the apartment with dementia-friendly bathroom fixtures that were still tasteful. We picked up rugs and taped them down so Bob won’t trip. We are very lucky to have a brownstone apartment in New York with a little yard, but it had these funky old bricks that Bob would trip on, so I have pavers come in so that it is a smooth surface, wheelchair-ready. I am looking at this reasonably — if I am going to live here by myself at some point, I will need the same things. I wanted to make changes that are attractive, practical and will last into my old age. So far, so good.

My best chance of caring for my husband until the end of his life is by staying physically strong and fit. I’ve been proactive and I’ve taken care of my own health. I want to be able to help lift him up, and help shower him. In a strange way, it makes me feel relaxed … knowing that I can partially control such an overwhelming diagnosis gives me peace. I felt helpless at the beginning; now I feel competent!
 
What would you want doctors to be aware of when someone comes into their office suspecting that someone they love has dementia?
That’s a really good question. I think some doctors don’t want to face telling their patient that he or she may have dementia. Bob’s doctor was also his friend, and my primary care doctor as well, and that is a difficult situation. I think doctors simply need to LISTEN. Listen more when a family member says something is wrong. In my experience, I don’t think that a person in the early stages of Alzheimer’s realizes they have signs of the disease as quickly as a family member or loved one would. ‘Acting weird’ can be a symptom, and the primary care doctor is often the first person to hear about it, not a neurologist.

What are Bob’s days like today? How does he keep active?
Bob has an activity scheduled each day. He attends a memory workshop, chair yoga, physical therapy, meditation class. It's important to keep him active.

Our real dog, just like the dog in my book, is very standoffish. Lucy even walks away when we try to kiss her! At eight years old, she is just starting to tolerate us. She’s a Catahoula Leopard rescue dog, very unique, all with the heavy sighs. We have learned to give her what she needs, which is exercise. Bob walks her every night.

Having a dog you have to walk is the most incredible thing. It’s a social opportunity, seeing other dog owners or dog walkers out in the world. Caring for a being other than yourself is so special. We are so lucky to have Lucy. She has helped Bob enormously, too. I’ve heard him talk to her, and I learn about how he feels about his life and his day when he talks to her. He will say things like, “I can feel my body betraying me”, “Today I feel like I can’t walk well” … things he won’t say to me. She is a great sounding board. Pets are truly wonderful for anything that may be bothering you.

Is there the silver lining in your experience with Alzheimer’s?
Oh, absolutely. At a recent book event, a man came up to me after my talk and told me that his wife had just died; he had been taking care of her for seven years after her diagnosis of Alzheimer’s. Everything he went through was so difficult and he never thought he would get through it. Looking back, he said that what she gave him was such a gift, because he became a better person of the experience.

I cried with this man, and I realized that this is how I want to feel, too. I am displaying my deep love for my husband every day. When this is over, I want to look back and say I was a good wife, that I was a good person and that I gave him everything I possibly could.

In a weird way, the gift that Alzheimer’s or any dementia gives you is the sense that you may be better than you thought you were, and you probably have more strength than you thought you had. I will carry it with me through my life.

I’m not saying it’s easy, because it isn’t. When you love someone with Alzheimer’s, you won’t get feedback you want. You won’t hear ‘thank you’ all the time. My husband tells me I’m great, but I know there will be a day not too far in future when he doesn’t see it, when he will only see his needs. I will just keep showing my love. It helps me get through the difficult times.

I hope my way of coping with all of this will also help me deal with his passing. I hope for the best and implore other caregivers to try not to judge themselves too harshly. Never judge a caregiver, especially not yourself. You are doing the best you can.

About Mary: Mary Hogan is the bestselling author of "Two Sisters" and the historical novel "The Woman in the Photo." Her latest novel, "Left: A Love Story," was published in June. Mary lives in New York with her husband, Bob, and their freckly Catahoula rescue dog, Lucy. In the acknowledgements of her latest book, Mary writes: “Bob, my love, my there kind of guy. You floor me with your resilience and ceaseless love. I am yours – in sickness and in health – for as long as we both shall live.”

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