Part 1
Susan Suchan, 59, was told in 2006 that she likely had early-onset Alzheimer's disease; in 2013, another doctor informed her that her symptoms looked more like frontotemporal dementia (FTD). That same year, she moved in with her younger sister, Nancy, and brother-in-law, Terry. Susan also has aphasia, which affects her ability to form sentences and speak fluently. She's been active in several organizations advocating for people with Alzheimer's and dementia.

Quite a few years back, there was a small kitchen fire. The concern was I did not smell the fire, so I went to my GP to see what's wrong with the nose, which ultimately ended me up in the neurologist office. I was diagnosed with early-onset Alzheimer's. He said there was nothing to do, to just live my life.

My family started to be concerned because I was becoming someone they didn't recognize. I was the fuzzy-haired grandma that loved the grandkids, but suddenly I did not want to see them—they were annoying. I quit my job. I sold my farm, split with my life partner, and moved to the city. I bought a Harley. My children called at Christmas: "Where are you?" "I'm getting fitted for leathers. What do you want?" [Laughs] I reinvented myself, and I created a cleaning business for high-end homes.

Then I started to notice at night I would have trouble getting out of my chair. I was falling over, like there was no connection between the brain and body. I thought maybe I was overworked, or menopause, so went back to the doc and ended up taking a battery of tests.

I was really concerned when my sister, Nancy, was going with me to the results from the neuropsychologist. I thought that maybe I was just crazy in my head. I was terribly, terribly embarrassed. The doctor very somberly looked across the table and gave the diagnosis of FTD. There is no meds to stop FTD. They said life-span two to seven years, to get my affairs in order.

I tried to continue working, but driving was becoming hard. Highway was too fast; I could not process the traffic. Simple things like cleaning a room and it turning into a black box. Where did I start? Where am I? Constantly repeating myself. It was confusing. Then it was suggested moving in with family. So maybe it was another six months, then I did.

My younger sister, Nancy, and I have always been close. I remember when we were young, I thought she was mine, like my new doll. We shared a room until I left home, and we were very tightly knit.

Nancy thought a house with an open layout and no stairs would be good for me. If I needed, they could hear me.

At first, I think both of us, we were so thrilled. Then we had to have some sit-downs. Learning about one another is hard: when to hide or when to intervene, knowing if something has to do with me or if it's something personal between them. I'm not part of Nancy and Terry's 30-year-plus marriage. I don't know what their moods are, if they are just bantering or angry, and they don't know if I'm confused or I'm angry. It's not easy being the older sister and then I'm living with my younger sister, who is providing a roof over my head. What the hell? This is all ass-backward.

Life is very fast now for me. I see everyone's life just zooming! Zoom! Zoom! I can't keep up. When my sister and her husband come home and they're chattering about their jobs, and I'm trying so hard to look like I'm interested, and I can't follow them, argh! Oh, it's terribly frustrating. I could just scream.

My children are the ones that do the emotional day-to-day care partnering. My daughter Heather takes me to the doctor; she advocates for me when words do not come good to me. When I'm not in a good place, she's the one that can remind me who I am.

Nancy travels a lot for her job. She loves it and is great at what she does, and I'm so proud of her. The downside is that it leaves me as this person who's around all the time, with her husband, and I don't want to be in the role of the wife.

I need Nancy to be real with me, and she needs to realize that I am brutally honest, whether I want to be or not. When talking about the hard stuff, finding silliness in it or being able to joke is okay, because then we're laughing at the disease, we're not laughing at me, and being on that page together makes it easier.

I sense that Nancy is feeling torn between two people she cares very much about. I really do empathize with her. I think it would be better if we didn't live in the same house. It would take the third-wheel factor out; it would enable me to continue with the abilities I still have and not always have that "less than" feeling around them. Nancy and I could go back to just being sisters.

Part 2
Nancy Weber, 57, is Susan's sister. She works as a brain-injury case manager and clinical evaluator at a neurologic rehabilitation and treatment center in Tulsa.

When I went with Susan to find out the results of her neuropsych tests in 2013, she'd scored so low on the cognitive part that the doctor ended the session by saying she should begin to put her affairs in order. I just looked at my sister and said, "We are going to do this together, and it's going to be fine."

I knew Susan couldn't live alone any longer, so my husband, Terry, and I used some money we'd inherited from my in-laws to buy a two-story Cape Cod that the three of us could live in together. The plan was for Terry and me to take the upstairs and for Susan to live downstairs. The house has an open layout, so I thought that if anything happened downstairs, we'd be able to hear it. When we moved in, we decided that I was going to be the breadwinner; Terry, who's a retired chef, could stick around the house in case Susan needed anything; and Susan, who could be OCD about cleaning, would keep the bottom level of the house tidy. I thought, This is awesome! I get to live with my two best friends.

Things haven't worked out the way we expected. Susan is now hypersensitive to sound, so it really bothers her when someone is cooking or opening and closing cabinet doors in the kitchen. She does her advocacy work, but when she's home, she's in her bedroom. I want to talk and visit with her, but we know that if the door is shut, it means she wants to be left alone. When that goes on day after day, it makes us feel uncomfortable. She told me once, "It's just weird seeing you every day."

I've offered to drive Susan to go shopping or to her appointments and meetings, but she always turns me down. Terry started a Memory Café, a social group for Alzheimer's and dementia patients and caregivers, in our house, but Susan wanted to end it. She asks us to use the term care partner instead of caregiver, but most of the time we don't feel like her partners.

I travel 75 percent of the time for work, so that leaves Terry and Susan at home together. They used to be close, but now they drive each other crazy. Terry can't even cook in his own kitchen; when he wants to make a smoothie, he'll take the blender out to the garage so the noise doesn't bother Susan.

This has taken a toll on our marriage. Terry and I started seeing a counselor, and one of the first things she pointed out was that there were actually four people living in our house: me, my husband, Susan, and the dementia. She said we need to ask ourselves whether we're allowing dementia to dictate how things are going.

One night Susan told me that when people tell her they love her, she doesn't feel the same way about them—she just feels that they are familiar. Intellectually, I know now this is a symptom of her disorder, but it still hurt to hear it. It feels like everything I do annoys her. The hardest part of this degenerative brain disease is having the person you've loved your entire life gradually and insidiously stolen from you and replaced with this new person who you feel barely even likes you.

Susan and I have always been the very best of friends. Nothing will ever change how much I love my sister, no matter what. I just have to constantly remind myself that when she says or does things that are hurtful, it's the dementia talking, not her.

The Toll on Women
By 2040, the number of women with dementia will rise to an estimated 8.3 million; 11.2 million women will find themselves becoming informal caregivers.


Next Story