Wilda's World: Living With Dementia

Feb 5, 2006 (Updated Feb 6, 2006)

The Bottom Line Dementia doesn't just affect those suffering with it. It is a family disease.

Wilda's World is a dark and scary place. It is filled with thoughts she cannot express, words that she cannot say, faces she cannot see, names she cannot remember, and a family that will not forget the person she once was.

Wilda is my mother who suffers from Dementia and Macular Degeneration. The dementia erases memory and the Macular Degeneration erases sight. One's vision is such a large part of memory that without it the dementia is escalated. Imagine being 87 years old, legally blind, and not being able to remember where you are or who you are with. This is Wilda's world.

We became aware of Wilda's dementia about 5 years ago. I remember her 82nd birthday. Arriving at her home on a Monday, I found the large trash bins halfway down her long driveway. The trash would not be collected until Friday, so Wilda was a bit ahead of the game, always being the very organized person that she was! More disturbing than the trash being half done and very early, was what was found within the trash container. Imagine my shock to see my own wedding dress mixed with coffee grounds, and my large wedding hat (it was the look of the late 1970s) and 12 foot veil crumbled and crushed under the television parts that she had also torn apart that day. Wilda had a very busy birthday. Apparently she had cleaned out a jewelry box, and then emptied its' contents into the trash bin of treasures. I found diamond rings, my first charm bracelet, a Tiffany necklace and more. Poor Wilda would have been a bit poorer had I not come along to save the trash and the treasures. Of course, her visual deficiencies did not help her on that day 5 years ago, but it was the dementia that allowed her to make the poor judgments.

Shortly after that birthday, my family and I, persuaded Wilda to move to a lovely Independent Living Center. For three years she enjoyed her spacious two bedroom apartment, the weekly Happy Hours, the personal fitness trainers, the theater outings, the Ethnic dinners, picnics in the park, and more. Though Mom was not exactly Independent with her memory and sight deficiencies, we faked it with caring companions for 12 hours each day. Wilda lived large for three years and enjoyed each and every day until September 28, 2005.

The phone rang at 12:35 A.M. I was in a wine induced dreamland, and didn't quite have the skills to find the phone on the bedside table, despite the persistent ring-ring. A quick recovery allowed me to dial voice mail, which requested me to call an unknown number. It was the security of Wilda's building. Mom had fallen and was found crying for help, within her apartment. She had broken her hip. Thank goodness for midnight door checks. We will never know how long she laid on the floor in pain. She was sound asleep when her caretaker left at 9:00 P.M.

Emergency hip replacement followed the same day, and Wilda's World, as we all knew it, came to an abrupt halt. Life has changed for her and for our entire family.

If You Want To Lose Your Parent, Send Them To A Nursing Home~

Part of my mother's very expensive contract at her Independent Living Center was priority placement at their Assisted Living and Care Centers (nursing home). It was recommended that Wilda be placed in the Care Center for therapy and rehabilitation following the hip replacement. It is a beautiful facility, the best in Northwest Indiana, with none of the unpleasant scents of many nursing homes. I had no qualms about temporarily placing Wilda there.

Never judge a nursing home by its beauty or the lack of odors. My dear mother was soon on 19 different medications, leaving her in a stupor state much of the time. She became incontinent for the first time in her life. We all would have, too, if we couldn't walk due to hip replacement, 80 mgs. of Lasix, and no one offering to regularly take you to the bathroom! Wilda began to cry and plead for help in an inconsolable manner in the dark of the night. Now enter, Dr. Wiggletoe, psychiatrist (yes, that was his name). This demented woman must need more drugs! We immediately hired our own precious caretakers to, at first, be with Wilda 12 hours a day, and then 24 hours a day. The expense was outrageous but needed.

This Care Center and its' staff collectively caused a slide in my mother's condition, down a hill that I never want to travel again. Wilda entered the "home" with a smile on her face, and has rarely smiled since.

Medicare Scam or Not?

I have no proof nor will I pursue proof of a Medicare scam at this nursing facility, but you can be the judge. The facts are that Wilda needed physical therapy. She received the therapy for about four weeks, which was two months shy of the surgeon's order for a 3 month course of therapy. Without therapy Wilda was put into the 'self pay" column of care facility. The PT was halted for reasons of Wilda's dementia. Then after two weeks the staff decided to try it again. Surprise! Now she was just three days out of the Medicare "window of time" for payment of therapy and skilled services. In order to get Medicare to pay for anything, we would have to admit Wilda to a hospital for three days. She was not physically ill. I do feel that the scam here is that when a patient is labeled as "self pay," the nursing facility certainly receives a higher payment than they do from Medicare. In this instance, our cost was over $8,500 a month plus our own personal 24 hour caregivers.

Rescuing Wilda~

Three weeks ago, I decided to rescue my Mother from the incompetent doctors and uncaring staff at The Care Center. She has been with me ever since. I knew immediately that I could not care for her myself, and still have a life, so a live-in companion was hired immediately. Her name is Maria, and she is my angel. If any reader is ever faced with caring for an aging parent, I highly suggest that you look for help. Many agencies are quite expensive, up to $250 a day for overnight duty. I was given a lead to a private agency that charges $100 a day, with two nights off every 2nd weekend. I pay Maria for her days off, as well. She earns every cent.

I will add that even with help, I am almost always on "Wilda Watch." Because Maria is up at least half of the night, I usually take the early morning hours. Sweet, wonderful Wilda is really a two man woman. It takes two of us to give her the tender loving care that she deserves. Being home all day, I have the added stress of always being available and never alone. Honestly, I still haven't got use to all of my new found company.

The Deficits of Dementia~

Dementia has many phases and presents itself in different forms. I am not a dementia expert, just someone that has lived through four parents suffering from it. Wilda has almost no short term memory left at all. Her long term memory isn't great, but if you nudge her, you can get the names and information you want from her.

An example of the short term memory loss is happening as I type, with Wilda by my side. To keep her busy I have put a pile paperwork in her arms, as she sits in her wheelchair. I have also provided a large envelope to her. The instructions were short and easy: "Please put the papers in the large envelope." With repeated requests, Wilda could not get the job done. Finally, I said: "Thank You, Mom, Good job!" She felt proud that had helped me.

Dementia patients often forget what common things are called or what they are used for. As an example, I might ask Wilda to sit down on the toilet, and she will pick up a glass and say "here?" (No, Mom, please not there!) Or she might ask if she has both shoes on, while she pulls on her earlobes looking for earrings.

Obsessions are often common with dementia patients. My mother is obsessed with crying and her teeth. I cannot count how many times the false teeth are put in and then taken out. Unpleasant to say the least. She is often cold, so she has several cuddly fleece throws that we put on her. I cannot count how many times she asks what the throw blanket is. The blanket being loose in her lap actually disturbs her, as she just can't remember what it is, and why she is wearing it.

A Day In The Life~

If you are wondering why I have not written a review at Epinions in such a long time, the following might give you a clue. It has been 16 hours since Wilda awakened screaming and crying. She has not stopped today. God love her poor tortured soul. This is not my mother, but an elderly woman possessed by a disease called dementia. A day in Wilda's World is a real challenge. It usually begins at midnight.

Midnight Awake and screaming "Help Me, Father, Help Me!" This usually goes on until about 6:00 A.M. If we are lucky, she might go back to sleep for about an hour. All I can say, is thank goodness for the caretaker, St. Maria and a drug called Lexapro! Last evening, for instance, I was awake with Wilda from midnight until 5:30 A.M. when Maria relieved me. During that time, she fell out of bed, was up to the bathroom three times, knocked a large canvas photograph off the wall, and cried continually. It was quite an evening.

7:00 A.M. Up and at 'em, when Wilda remembers how to walk with her walker. Sometimes she can and other times, she just can't get the instructions together. It is more of a dementia issue rather than a physical issue. Toileting, face wash, teeth in, etc.

7:30 A.M. Ruby is in the kitchen, where I seem to spend most of my life now, making three square meals and a couple of snacks, for my new boarders. I like to pamper my guests, whether Wilda realizes it or not, she gets her meals served on a silver platter.

8:00 A.M. Cut, crush, mix, stir, the 9 medications. Some dementia patients forget how to swallow, especially pills. Wilda is one of them. She does not, however, have trouble swallowing food.

8:00 A.M.-Noon Entertaining Wilda. It isn't easy since she cannot see worth a darn. We try to keep her busy with blocks, poker chips, folding towels, etc. During this time, I also do Wilda's hair and make up. She gets the full beauty regime each day. If Mom is left alone even for a minute, the crying begins. Every other day, this time period also includes shower time, which is a real challenge. My home is not handicapped accessible, but I have purchased all of the needed equipment. In the shower Wilda and I go, as I must get in with her to get the job done. This is quite a sight, but it is one of Wilda's few pleasures left.

Noon Lunchtime! Back in the kitchen with another meal. On a good day, Maria might take Wilda for a wheelchair stroll outside. I fuss with her hair and makeup, put on the mink coat, and off she goes. She always looks better than she is. These are usually enjoyable times, except when Wilda decides to pop out the false teeth on The Magnificent Mile of Chicago!

1:00-4:00 P.M. More entertaining of Wilda, and more crying and screaming.

4:00-6:00 P.M.Sundown! People with dementia often suffer from Sundowning Syndrome. As the sun begins to set, she gets more anxious each minute. Some patients get aggressive, and I am thankful that Wilda does not. A classic symptom is running hands through one's hair. Wilda destroys her hairdo each day, and by the time the sun sets, she is looking quite a sight! Alot of hand holding goes on during this time, just to reassure Mom that she is okay. We try music therapy to create a relaxing mood, but it doesn't seem to work at all, except for keeping me calm. In fact at any given time of day or night, you might hear Sinatra or Sade crooning within the walls of my home.

6:00 P.M. - 9:00 P.M. More food, more medicine, and countdown until bedtime. These hours go amazingly quickly and are sometimes the calmest parts of the day.

9:00 P.M.-Midnight Ahhhhh quiet. Wilda snores, coughs, gags, and sleeps for about three hours.......and that is all! Then the awful sounds of "Help Me, Help Me" come wafting thru the baby monitors like a train through a tunnel. I take turns with the caretaker, in getting up at night. No matter who is up and who is down, sleep is disturbed for all in my household.

And there you have it. Each day is about the same and some are worse than others. In between all of Wilda's needs, I try to maintain some sort of normalcy in my own life, but that isn't easy. Personal maintenance such as nail and hair appointments, and exercise are difficult to fit in, when a loved one is in such need of you.

When Love Isn't Enough~

I love my mother deeply. She was the perfect mother with a strong constitution and a gentle nature. Now at this stage of her life, my love for her isn't enough. If you find yourself in the need of a caretaker for yourself or a loved one, be very careful in your selection. It takes a special person to care for someone like my own mother. You need someone with nerves of steel, the patience of a saint, and a trusty worthy background. I applaud all of you caretakers out there like my friend and fellow epinionator, Susie, http://www.epinions.com/user-susie-34668. Your job is not easy, but hopefully you will be rewarded in heaven someday.

Hope For The Future~

I have an appointment at Northwestern Memorial Hospital's Cognitive Neurology and Alzheimer's Disease Center on February 9th. I have great faith that their Neuropsychologists, Neurologists, and Social Workers will offer some sage advice and medicine adjustments that will make Wilda's World a better place for all of us to live. If you are in the Chicago area, you might find their website helpful at: www.brain.northwestern.edu. I am actually hoping that Wilda might be admitted for observation. Though, hospital stays are usually set backs for the elderly, I just can't see how Wilda can go on with life as she is now.

In about a month, my sister will take over the housing of my mother, in her newly custom built house. Maria will also live with them. Her continual support of my Mother will help with the adjustment to her new surroundings. It is my goal to have Wilda on new medication, and a less anxious person before she goes to her new home.

One final thought about caring for aging parents. When the going gets tough.........I suggest two glasses of wine. One for you and one for Mom or Dad! Thanks for listening.

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