Alzheimer’s Disease

Mothering my husband instead of my kids

Sue Fagalde Lick Alzheimer's caregiver, Alzheimer's Disease, childless wife of Alzheimer's, husband with Alzheimer's, left out of mom club, sisterhood of caregivers
           Perhaps I was spared caretaking in my earlier years because I was destined to do it in the later years. I’m like the last runner in the relay race, the one who takes the baton home.
           All my adult life, other women gathered to talk about their children. Having no offspring, I could only offer a few memories from my own youth or a borrowed observation about my stepchildren and slink off to hang out with the men. But when I was 52, I discovered a whole new cluster of women with whom I shared a genuine sisterhood. We could talk for hours about our joys and frustrations, offering helpful hints, trading visits over coffee.
            I had never realized this group existed, and I would never have willingly joined. I’m talking about the sisterhood of Alzheimer’s wives, women who find themselves mothering the men they had hoped would take of them. Whatever their relationship before, now they must watch their husbands as constantly as they would a child. Turn away for a moment, and he might hurt himself or wander off.
            At first, it was a matter of filling in missing words and prompting him to get dressed, take his pills, and go to his appointments. His wife served as navigator on the road and interpreter at the movies. Later she would scold him when he turned on the stove. “No! Hot!” she said. And still later, she would feed him, diaper him, and clean him like a baby. Where once there were two potential parents in the house, now there was only one.
           I had been exchanging notes on the Alzheimer’s online message board, becoming friends with women nicknamed Emmie, Twiggy, Fortune Cookie and Sooze. We had talked about doctors, diapers, depression and more. But sending e-mail messages is different from meeting face to face, as I discovered one Sunday shortly after Fred’s diagnosis.
            We three authors were sitting in the library at the historical museum selling our books when Suzy, the take-charge 50-something beside me, asked Carol, fuzzy-haired with a wide mouth and deep dimples, if her husband’s “cognitive” powers were still working.

             Cognitive. Oh, I knew that word. They use it a lot in Alzheimer’s Disease books. A few more lines and I knew they were talking about AD. When they paused, I said, “My husband has Alzheimer’s, too.” It was strange to hear myself say it out loud. Mostly we weren’t telling people yet.

            Well. I was in. Not only did Carol’s husband have it, just a little farther along than Fred, but Suzy’s mom had it, too. We talked about lawyers and homecare and tips for getting our loved ones up and dressed and out the door. Suzy tsk-tsked over how young my husband was. He seemed handsome and loving and helpful that day–until he came in to report that he had locked his keys in the truck. 
            One in 10 people over the age of 65 had Alzheimer’s Disease. The numbers were growing as the baby boomers approached senior citizen age. In every gathering, someone’s mother, father, brother or husband had AD. At last I belonged.
            It didn’t matter how old I was or whether I had ever given birth. I was welcomed into the caregivers’ club. We all loved someone who was not what he or she used to be, and we were not giving up on them, despite their imperfections, their sometimes bratty behavior and their constant demands. Just like mothers with their children, we loved them, no matter what. 

Sounds like motherhood to me

Sue Fagalde Lick Alzheimer's Disease, childlessness, dog mother, husbands with Alzheimer's disease, other ways to mother, raising puppies


Once upon a time, what seems like a lifetime ago, but actually only 4 1/2 years, I had a husband with Alzheimer’s disease and two 7-week-old puppies named Chico and Annie. This was an insane combination. I have been reading my old journals lately, and I have to tell you, this sounds exactly like someone trying to take care of twin human babies while caring for an older person with dementia. Why did we adopt these dogs? Our old dog had died, and we missed having a dog around the house. Neighbors advertised a litter of Lab-terrier pups, and they were so cute Fred suggested we get two, the black male for him, the tan female for me. It was insane and wonderful at the same time.

My journal entries are all about the pups peeing, chewing, crying and needing to be held and loved and about how Fred needed pretty much the same thing, minus the chewing of furniture and shoes. I’d put one pup in the crate, and the other would pop out. I’d leave them alone for a minute and find them fighting, one pup trapped behind the water heater, her ear bloody. I had the vet’s phone on speed dial. I’d clean up one mess and turn around to see the other dog squatting on the carpet. I bought absorbent pads by the ton and my hands always smelled like urine. If I needed to leave, I had to find someone to care for the dogs or take them with me in the car. Fred couldn’t dog-sit. I’d say, “Put them in the laundry room,” and he would respond, “What’s the laundry room?” It was that bad.
This went on for weeks, then months. I took the dogs to training classes, doing an hour with one, then putting that one back in the car and doing it all again with the other dog. As my husband deteriorated, I had paid caregivers coming in and left them lengthy notes about what needed to be done for both the husband and the dogs. If I couldn’t get a sitter or they didn’t show up, I couldn’t go. I worried every minute until I got home, usually to a disaster of some sort. Although I tried to pretend otherwise, my work suffered. I tried to write when the husband was busy or asleep and the dogs finally conked out at night, but I was always listening for them to get up or cry out. I write about eating a pancake breakfast at church and wanting to cry because finally I could eat in peace and someone actually served my food to me.
It sounds an awful lot like being a mother. So what if I was mothering dogs and a 71-year-old husband? I did everything but give birth and breastfeed. And yes, I had already helped raise my youngest stepson, too. He lived with us from age 11 to 20. I didn’t do motherhood in the normal way, but I feel justified in claiming the title of “mom.”
How about you? Many of us weep over our loss of babies, but are there ways in which you feel you have been a mother, even though you never gave birth?

New focus for Childless by Marriage book

Sue Fagalde Lick Alzheimer's Disease, caregiving spouse without children, Childless by Marriage book, My Imaginary Daughter, Still Crazy, widow without children

As many of you know, I have been working on a book called Childless by Marriage for several years. At least four times, I have considered the manuscript finished. So far, no big publisher has accepted it, but it keeps coming close, and I have hope that that will be accepted this year. One way or another, it is going to be published.

I was out of town on a book-selling trip last November when, as I sank into a well-earned hot bath, I had a sudden realization that changed the focus of the book. I jumped out and typed for the next three hours in my bathrobe. All this time, I have been trying to leave out the fact that my husband Fred had Alzheimer’s Disease, that he spent two years in a nursing home, and that he died in April, 2011. I didn’t want to bum people out, it didn’t seem like part of the book, and, until April, I didn’t know when it would end.

But I realized in November that Fred’s illness is an important part of the story. I can’t hide it from my readers. I wound up caring for him as if he were my child. And, because we had no children together, I did it alone. Now, as a widow, it makes a huge difference that I don’t have grown children and grandchildren to turn to for help and for company.

So now the focus is more on my connection with Fred, the love that led me to give up children in order to have him, and the cruel turn that left me without either one. In essence, I chose Fred, and this is what happened. What do you think?

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A piece of good news: An excerpt from the book, a chapter called “My Imaginary Daughter,” appears in the January issue of Still Crazy, a terrific literary magazine. Click here for info.

Mothering my husband, continued

Sue Fagalde Lick Alzheimer's Disease, marrying an older man

My last post, on taking care of my husband, who has Alzheimer’s Disease, generated some great comments. Thank you to all. I don’t walk around thinking about my childless state all the time, but I couldn’t help noticing the parallels when Fred was in the hospital, the feeding, the diapers, his inability to talk.

I thought not only about how he was like a baby, but also how caring for him was similar in some ways to taking care of Annie, my dog–and I do have a lot of practice with dogs. Annie would react in panic if anyone tried to hold her down and do anything to her body. Just try clipping her nails. She can’t speak to tell me where she hurts, and she can’t understand when I tell her everything will be all right.

Sometimes I feel alone in this journey, but I’m not really. I have been in support groups, I have been in therapy, I have great friends. I exercise, and I really try to take good care of myself. For the most part, I’m on my own now. Except during crises, I only see Fred once a week for a few hours. It’s a 150-mile round trip to his nursing home.

I made that trip last week to take him to the doctor. This was not like taking care of a child, unless that child is blind and brain-damaged. I had to do all the talking and help Fred through every moment of our visit. Just getting him to lie on the table was a huge challenge. But it was a good visit. This is a new doctor for us, and he really seemed to listen and to care.

Having a husband with Alzheimer’s (and other diseases that take people away a little at a time) is hard. But I’m glad I can take care of Fred. I have to remember everything he gave me over our years together. Everything I have and much of what I have been able to accomplish over the last 25 years I owe to him.

Marrying an older man brings an added risk that he will become ill or die long before you do. I knew that going in. It would be nice to have children to help me and to help him, but I don’t. Instead, I have good friends.

Bringing things back to childlessness, I was in an online group for a while, but most of the members seemed to be older than I am, and they spent a lot of time talking about their children and grandchildren. When they started posting tons of photos,I bailed. Whatever we do, we’re still the ones without kids.

Mothering My Husband

Sue Fagalde Lick Alzheimer's Disease, maternal skills, mothering husband

My husband has Alzheimer’s Disease. He has lived in nursing homes for almost two years now. Over the New Year’s weekend, he was in the hospital. He had problems with his bladder and was having seizures. He spent much of the time in a deep sleep, but when he was awake, I found myself on constant guard to keep him from throwing off his clothes—lost that battle—and climbing out of the bed–almost. His hands shook so badly I had to feed him.

I had to speak for him to the doctors and nurses, struggling to interpret his garbled sounds and gestures and transmit basic information to which he no longer has access. I had to explain over and over why he could not answer their questions, why he needed extra help.

He has been wearing diapers—call them adult protective garments, Depends or whatever; they are diapers–At the hospital, a nurse installed a catheter, a tube that drains his urine into a plastic bag. He screamed and fought as if he were being killed. He did not understand what this was or why he needed it. He also screamed when the nurse poked a needle into his hand for the IV and another nurse placed sticky tabs on his hairy chest to hook up a heart monitor.

He did not understand any of it. I stood close by, trying to reassure him and trying to keep him from dismantling the medical gear. When I said he would feel better soon, he did not understand any more than a baby (or my dog). All he knew was that he was scared and hurting and he wanted to go home.

Standing by his bed for those difficult hours, exhausted and hungry, I sometimes wondered if this would be any easier if I had had some practice with children. At least I would know how to spoon applesauce into his mouth without getting it all over. I might be more comfortable checking his diaper to see if he has soiled it. I might be better at finding words of comfort and reassurance.

There are certain things mothers seem to know, and I don’t. I never expected to use mothering skills on my husband, but that’s the way it is.

Have you experienced times when you needed to dig out those maternal instincts? Please share.

Now it’s just Annie and me

Sue Fagalde Lick Alzheimer's Disease, Annie and Chico, childlessness

My family has boiled down to just my dog Annie and me. Think of us as a cautionary tale for those considering marrying an older man and not having children. Someday he might be gone, and there is a chance his children–if he has them–will no longer consider you part of the family. Or perhaps you and Mr. Right moved far away and now you don’t have the means to move back to where they live.

Last week, I told about how I need to give my other dog, Chico, away. I have not found a home for him yet. He is still in the kennel. But I do have lots of people looking, so I’m hopeful. I really don’t feel that I can bring him back to the house. He’s too much for me to handle alone. When I started this particular dog-journey, I had Fred here to help. For those who haven’t been following along, my husband is in a nursing home with Alzheimer’s Disease. Who could have predicted that when we got married almost 25 years ago?

Meanwhile, Annie and I have really bonded. Through an artic freeze and through the current barrage of rain and wind, we have spent most of our time together. We walk together, we eat together, we sleep together. When I cry, she licks my face. When she wakes me up in the middle of the night, I stagger down the hall to let her out. Sometimes she just wants company. I understand. We have both lost our partners. I no longer feel like her mother; we’re companions, housemates. We take care of each other. With luck, we’ll grow old together.

At least I’m not the weird old lady with a dozen cats. I’m too allergic to them!

Dirty Dog Day

Sue Fagalde Lick Alzheimer's Disease, Chico and Annie

Those who are following my saga know that my husband Fred has Alzheimer’s Disease and moved to a care home almost two weeks ago. We have no children together, just our dogs Chico and Annie, who turned one year old last Monday. It’s a pretty lonely house these days.

Yesterday, it got even lonelier when Chico and Annie escaped out a gate I had left unsecure. After visiting Fred, I was just turning onto our street when my cell phone rang. My neighbor Carol wanted to tell me the dogs were out. She couldn’t catch them, she said, but she left the gate open in case they wanted to go back into the yard. Uh, no.

I parked, grabbed two leashes and a pocketful of dog treats from the house and started walking and calling. My old dog always used to come home on her own, but these guys are young and crazy. They haven’t had a walk in weeks. I was all dressed up from my visit to Fred, wearing new shoes and no jacket. The temperature was in the 40s. I walked and walked and walked, moving so quickly I got shin splints and barely felt it. Calling, “Chico, Annie, come, I’ve got cookies,” I felt that the whole neighborhood could hear me, but saw no dog of mine responding. I ran into the man who walks his basset hounds every evening before dinner. He hadn’t seen my dogs.
I had heard other dogs barking, but now I knew they were barking at the bassets.

The visit to Fred had been very difficult. At lunch, he had cried and said he wanted to come home. If you’ve ever been through this, you know how much it hurts. Now I pictured life without my dogs. I know that all those dogs on the posters are rarely found. They’re usually dead or lost forever. I pictured myself sitting in that house all alone and fought to keep my composure and keep calling.

It was cold and getting dark. I walked through a construction site, muddying my new shoes, aching for a glimpse of a black or tan dog. Even if I could have just one of them back . . . I couldn’t care for my husband, and now I had failed at caring for my dogs.

At the end of the road, I turned back toward home, thinking I’d put on a jacket and get in the car and drive farther into the wilderness area to the east. But as I came up the driveway, weakly calling the dogs’ names, I suddenly saw a yellow dog emerge from the across-the-street neighbor’s yard, soon followed by a black one. They zoomed past me to the door, tongues out, panting, filthy with mud. I grabbed them, sobbing.

What does this have to do with being childless? Nothing directly, but it’s my life because I don’t have any other relatives close by to help me or keep me company and because these dogs are the only things I ever have or ever will raise from infancy. I’ll get back to my childless research soon, but this is the life I lead right now, sitting on the deck in the dark, hugging my dirty dogs against me as they lick my face until I get up and feed them.

The phone sits silent

Sue Fagalde Lick A Cup of Comfort, Alzheimer's Disease, Phone calls from children, The Sun

“Hi Dad, how are you doing?”

Tonight, as I do every week between dinner and “Dancing with the Stars,” I will call my 86-year-old father and ask that question. God willing, his answer will be mostly positive. Yes, his leg hurts, his back hurts, he’s tired from working in the yard, and the idiots at the banks are driving him crazy, but he’s mostly okay. I always hold my breath until I hear his response, fearing—no, knowing—that one day his answer will be much more frightening or he might not answer at all. Sometimes I just listen to the sound of his voice and try to drink it in.

What does this have to do with childlessness? Simply this: I would give anything to have a son or daughter call me every week and ask how I’m doing—and really care about the answer. I may not have mentioned here that my husband has Alzheimer’s disease, but now that it has been published in The Sun and in the new book A Cup of Comfort for Families Touched by Alzheimer’s Disease, it can’t remain a secret. This is a horrible disease that takes a person away a little more every day. Increasingly, the burden of his care and the care of everything in our household falls on me. I can’t handle it all. Our family is far away. I depend on a network of friends and paid helpers, but it’s never enough. Every day is a marathon in which I fall farther behind.

People in this situation who have children can sometimes call on them to help or even take over when the caregiver can’t do any more. Even if that doesn’t happen, a simple telephone call or even an e-mail saying, “Mom, how are you doing?” would help so much. When you don’t have children, well, the phone doesn’t ring very often.

I’m sorry to be so gloomy, but that’s how I’m feeling today and why I’m doing last week’s post today. One aspect of being childless is that when your spouse gets sick, you’re on your own.
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I’m intent on finishing my book soon and getting it out next year. People need to understand what it’s like to be childless. Your encouragement helps.
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On Friday, let’s talk about Thanksgiving. Your comments and suggestions are welcome.