Living with the one you love, when the one you love has Alzheimer's

I seldom write about personal matters on this blog but I am going to make an exception. I am writing on this topic in the hopes to spread awareness and in the hopes that it will encourage others. My wife, Louella, has Alzheimer's.

Rod Williams, Louella, and J. C. Watts

She has now been diagnosed with the disease for seven years. I have not reveled this earlier because Louella is a very private person and would not want me to do so. She always had disdain for tell-all confessionals. However, everyone who knows us personally, already knows it. It is no longer a secret. For the first few years we did not let anyone know unless we just had to, but for about the last three or four years it is obvious to anyone who is around her for any time that something is wrong. If you don't know us personally, then she is still anonymous except for you now knowing her name and I feel that the benefit of me writing about this outweighs what would be her reluctance to share.


Louella and I have had a nineteen year relationship. I met her in 1992. I was underemployed at the time and I had taken a part-time job with the federal government as a field representative for the Department of Labor, gathering data for the consumer price index. After undergoing a couple of weeks of field training I was sent to Alexandria Virginia for a week of classroom training. It was there that I met Louella. She who was one of the instructors in the class. It was playing one of those silly "ice-breaker" games that resulted in us seeking each other out to become acquainted. (See, How Ayn Rand Changed My Life) After this initial meeting, I again returned to the D. C. area for more training about a month later, and our relationship deepened and it was then that I knew I was madly in love.

Louella at Becca and Johnathan Moody's wedding

For the next nine years we had a long distance relationship. We emailed and wrote letters and talked on the phone for hours every week. During this time, we probably talked more than most couples who share the same house. We also saw each other almost every other weekend. Thanks to Southwest Airline's cheap fares, the airline schedule, the proximity of Louella to the connecting transportation, the time difference, and the Federal Governments flex-time policy, this was possible.

Louella worked in a building right next to Union Station. She would leave work, walk across the side street, catch a train to the airport, fly to Nashville, and I would pick her up at the airport and we would be home in time for us to have dinner together. She would be in Nashville by about 6PM eating dinner while her coworkers who lived in the suburbs were still stuck on the interstate in traffic. On Monday morning we would reverse the process and she would go directly to her office and not be late for work.

We did this for many years. On three-day weekend, I would go visit her. We were also together for Christmas and for our vacations.

We took adventurous, wonderful vacations. We shared a passion for art and architecture and history and food and wine and having culturally enriching experiences and interacting with local people. We traveled cheap with no reservations and a loose itinerary and one suitcase each and a couple of good guide books. We stayed at Ma and Pa pensions and traveled by bus and train. Our vacations included Spain, Portugal, Italy, France, the Czech Republic, Hungary, Turkey and more. We had wonderfully romantic adventures.

It was following the events of 9-11 that we knew we did not want to be apart any longer. I think we both realized that we were not getting any younger and life is short and we wanted to be together. Louella was in a position to retire so she took early retirement, we bought a house, and Thanksgiving weekend of 2001 she moved to Nashville.

Almost from the beginning however we started having trouble. We had both lived single for a long time and at first I thought it was just a difficulty in adjusting. Louella was leaving her job and her home and her children. I thought at first she simply suffered from depression due to the change in her circumstances. Then, after being here about a year, her mother died and Louella suffered more depression.

Things were not all bad during this period however and there would be times when we were happy. More and more however, even when we were getting along, it seemed something was wrong. Louella had no interest in things that she used to enjoy. She didn't want to go to museums, or go out and party. Louella loved classical music, but even going to a classical music concert did not excite her.

After a while, I noticed that she seemed not only uninterested in things but unable to do things. Loeulla had been a go-getter. She had been adventurous and capable. Before retirement,  her job duties required her to fly into a strange city and rent a car and cold-call on numerous businesses and convince the business owner or managers to participate in the Consumer Price Index program. Now, she could not find her way across town. It took a while to admit that something was simply not right. Finally, I convinced her to go see a doctor and she did. Still it was four months later before she was eventually diagnosed. She was finally diagnosed in March 2005.

On December 3, 2006 we were married in a beautiful wedding ceremony at our home. Louella has progressively gotten worse; she has to be dressed and bathed. She can't follow the simplest of instructions. In anyone else's house, she will get lost if she goes to the bathroom. In our own home, she cannot do something as simple as put something that is on the table in the refrigerator. By herself she cannot empty or fill the dishwasher. She would put dirty dishes in the cabinet. She still knows who people are however who she sees on a regular basis.

Here are some observations and recommendations I want to share, should you find yourself in a similar circumstances.

• Don't wait to see a doctor. If you think the one you love has Alzheimer's, take them to a doctor. I think I did not want to admit that something was wrong with Louella. The signs were there but I ignored them. Depression often does accompany Alzheimer's. We lost what could have been almost three good years. The Alzheimer's can't be cured but the depression can be treated. Also, maybe by starting treatment early the progression of the disease can be slowed. Another thing that I did not know until we had treated her Alzheimer's was that Louella had cataracts and was almost blind. I knew she had no interest in anything; I didn't know she couldn't see anything. After her treatment for depression and getting her vision restored there was a remarkable improvement.

• Not everyone turns mean and dangerous and ill-tempered. If you hear some people share their experiences, you would think that when a person has Alzheimer's that their personality changes and they turn nasty and even dangerous. Some do, but that is not my experience at all. As I have described, for the couple years prior to the diagnosis, she was uninterested in life and withdrawn and sad, but she was never mean. Louella is sweet and kind and loving and pleasant. I enjoy her company. I miss the intellectual person I once knew. I miss the person that I could discuss ideas and books with, and the person who knew a lot more than I did about classical music, and oriental rugs, and art. I miss that person, but I also love the person who is with me now.

My daughter Rachel, Louella, and me

• Stop and smell the roses. Louellla delights in children at play and butterflies and birds and squirrels and flowers and airplanes and a bright moon. We have zinnias planted along the front of our yard and they attract butterflies. If we go to get in the car and there are butterflies fluttering among the zinnias, she will say, "look! look!" and she will take such joy in the butterflies. We will stop and watch them for a while. She will get excited at the birds at our bird feeder and call me to come see the birds, especially if there is brightly colored red bird. If she sees an airplane, she points it out to be and says, "Somebody is going somewhere." She takes such delight in little pleasures, it is almost like having a sweet child. She is happy and enthusiastic. I have slowed down and enjoyed the simple pleasures of life with her.

• She still has good social skills and can fake it. We will be at a party, most often a political reception or some such event, and I may be with one group of people chatting and I will see her across the room standing with other people. I have discovered most people aren't really interested in what you have to say. If you look interested and laugh when they say something funny they think you are a great conversationalist. If no one asks her a direct question, she can still pull it off. She has gotten worse and can't fake it as well as she once could, but she still loves to go and loves socializing. She smiles when introduced and shakes hands and is charming. At 70, Louella still has the advantage of being a good looking woman and I think that helps.

• Keep the person engaged. So many people with Alzheimer's are just ignored or abandoned. I still try to engage Louella. She had gotten so she can do less and less, but I still have her help me empty the dishwasher and put up the groceries. She cannot do much more than hand items to me. She "helps" me cook meals. I have her stir the dish as it cooks. She feels useful. When I am doing something, she will always ask, "Can I help?" We go places. Recently we went to the National Folk Festival and she loved the music. The next day she may not remember what we did the day before but she enjoys it while she is doing it. I also talk to her as an adult and discuss the news of the day and family and work gossip just like I would if she had all her faculties. I am not a health expert, but I think keeping her engaged and keeping her working at trying to understand has kept her mind sharper than it would otherwise be.

• Romance and love and intimacy does not end with Alzheimer's. I know a lot of people under thirty think that people over fifty do not experience these things anymore anyway, but we do. They do not end with Alzheimer's. I am still in love and so is she and that part of our life has not diminished at all.

• Don't ignore the person's wishes just because they are sick. When Louella was first diagnosed we somehow ended up under the care of a geriatric psychiatrist. At first we were going to see Dr. R every month, then he reduced the visits to every other month. Every time we would go see Dr. R, Louella would get mad and we would have at least one unpleasant day, sometimes an unpleasant couple of days.

One time, she said, "I don't like Dr. R., why do I have to go see him?" And, I stopped and thought, "why indeed"? All he would ever do is talk to her about 20 minutes and make notes. I then called my family physician and asked if he could care for Louella and if we needed the specialist. He said he would be glad to care for her and we did not need a specialist. He said he did not need to see her more often than once every six months. but to come more often if there were any changes. Louella really likes Dr. Allen and when she goes to see him she also gets a basic checkup so her medical condition is also monitored. Changing doctors has made life a lot more pleasant. Just because the patient has diminished capacity does not mean that their opinion and wishes should be ignored.

• Make sure the patient is not over medicated. When Louella was first diagnosed, she was very angry and could be uncooperative. Dr. R put her on a strong sedative. That put her in a kind of daze all the time when she was awake and made her sleep a lot more than normal. After some months, I started cutting her dosage in half and after a few more months I cut out that pill altogether. If I had not taken the initiative, Dr. R would have left her on that pill. Consult with your doctor of course, but you are the one living with the person; do not just accept that they need to be sedated all the time.

I know as time goes on things will get worse. There is no getting better. I already have to help her with her hygiene and have to dress her and if she can get lost even in familiar surroundings. Caring for her is just something I have to do but t it really is not a burden. Thankfully, I am blessed to have found a good caregiver who comes and stays with Luella during the day when I am at work. Sue Duess is a blessing.  She takes Louella places and also keeps her active and engaged. Louella just loves her and she is so kind and sweet to Louella. When we have a place to go in the evening, I come home and Sue already has Louella dressed appropriately.

My brother Tim Williams, my sister Kathleen Williams, and Louella at the Haslam inaugural ball.

I don't know what the future holds. I don't know how many more good years we will have. She could have a rapid decline at any time. I don't know if there will come a time when I can't care for her in our home. I worry about that but I am just taking life one day at a time. That is all one can do.

I wish things were different. This is not how I planned to spend the latter years of my life. I planned a lot more travel. Louella and I had talked about me also taking early retirement and us taking an extended stay in Spain. We talked about renting a house and staying six months.  I wanted to visit India and China and South America but plans can change.  One has to be flexible and not dwell on what you missed. I am just thankful we got to do what we have done. And, I am thankful that the last few years have not been so bad. I know some people have a much worse time of it caring for a loved one with this affliction than I do. Don't feel sorry for me. I just trust God to help me through this and pray that we can have good times for as long as we can and that I can accept the future changes with grace and dignity.

When Louella was first diagnosed I was devastated and I cried and felt sorry for myself and got mad at God for a while. If you get the bad news that the one you love has this condition, you may experience the same emotions. Be encouraged however, that life is not over when you get the diagnosis and there may be good years and fun times and tender times and love and happiness ahead of you even living with Alzheimer's.

It is probably too late to hope for a cure that will help Louella but I hope that a cure is found so others do not have to face this disease.

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