HOW I DEALT WITH THE DISEASE CALLED DEMENTIA.
First and foremost, I am not a doctor, psychiatrist, or any other professional person. I am just a guy who, in dealing with my Mother’s dementia, learned a lot. Mostly about myself, but a lot about the disease and how it affects your brain, and behavior. I also learned how to deal with the changes in my Mother’s behavior and her perception of what was going on around her.
I do want to give a little background on my Mother. She was a VERY smart person. She told me over and over again how she was the Salutatorian of her high school class and would have been the Valedictorian if she had not been shamed by the boys in her class, that boys don’t like smart girls… this was in the late 1930s. (Thank God attitudes have changed) She also said she could have had a full scholarship to the University of Missouri, Rolla, which was an engineering school. (She LOVED numbers and working with them.) Her parents would not let her attend, as none of the other children could go to college, as money did not permit it. She begged and begged to no avail, it would not be fair to send her to school and not the others. (I heard these things hundreds of times) Anyway, she was a very bright woman. She helped my Father when they bought the Hartz Mountain pet supply distributorship in St. Louis, MO. She did all the bookkeeping with help from our CPA, and she kept the inventory, ordering, billing, and accounts payable. She also got out and picked orders from inventory for the route drivers to deliver and sell. She sort of did everything but sell. That was Dad’s job and he couldn’t be beat at it. He was a stellar salesman, from the old school. He could sell anything, but keeping track of the books, and details of running the place, not for Dad, but Mom turned out to be stellar at it. So when I say she was bright, she was. Not just me being proud of my parents, I totally am to this day, but she was just that smart. NO QUESTION ABOUT IT. I never had to worry about her memory about details, money, numbers, times, etc… she was amazing. She was also the most “go along to get along” person I ever met. Nothing shook her. She took everything in stride easily, with no muss no fuss. If she had a problem, she worked it out quietly, so as not to upset anyone. She thought that getting along with the crowd was the most important thing. (this will be important later in my narrative, as her personality changed drastically as the disease took more and more hold of her brain.)
I first noticed that my Mother was “slipping”, when she started repeating the same stories over and over. Not just a couple of times, but literally hundreds of times. I just thought she was telling me stuff for the sake of conversation.
I had bought her a new car in 2008, and it seemed daunting to her to figure out the controls, even though they were very similar to the car she had. (same make and similar setup) I had to stop by her home a few times to show her the lights, seat settings, air conditioning, and the like. I chalked it up to an older lady, who needed companionship, and went on my way about it. That wasn’t really the case. She could not remember or figure out the controls, and it was very frustrating for her to have to call me to set everything up. It turns out that the disease had started slowly, and I didn’t see it because I could not bring myself to understand that she was slowly losing her memory, and cognitive skills. I was in severe denial.
My Mother made money from investments and a few private loans that she had to keep track of. She was fine with that, her math skills were great. This made me think she was just a little short of memory, not cognitive skills. So, I ignored most of the “little slips”, and went on my way. I did visit her a couple of times a week at her home, or we had her over for an evening. She played cards with her friends twice a week, so I didn’t think she was lonely, because Dad had passed in 2000. I thought she had gotten her life together pretty well and had people to see regularly.
I noticed that when she would ride with me to appointments, or just out and about, she would remark on the clouds. “These clouds here aren’t anything like the ones back in St. Louis, (our hometown when I was growing up). She would mention it a few times during the car trip, and most every time we were in the car. I told my wife and we kind of joked about it, thinking she wasn’t getting enough input from her friends, and she was just looking for something to talk about. (Looking back I would give anything to hear her talk about those dumb clouds.) I surely was in great denial.
One day I went to see her, and she told me that she went in her car to see a friend. It was a short hop to the mobile home park where her friend lived. She said that the guard at the gated community had stopped her as per normal at this property. When she started to go through, a man stepped in front of her and she ran over his foot! I quickly went through the litany of how is he, was it bad, how is the car, etc. I looked over the car, no scratches, etc. She told me the man was ok, and he was apologetic for walking in front of her, but she was VERY worried that he may sue, or that the police would come to get her and throw her in jail because she just drove away after the guard told her to. I reassured her that all was well, it was probably just a touch of his foot, and if he said he was ok, then he probably was. I went round and round with her about how it happened, when, etc. There was no evidence that anyone was hurt, I was positive that if there was any injury, the guard would have called police, paramedics, and the like. I ended up calling the Mesa, AZ. police and there had been no report of a problem on that day anywhere near there, and that seemed to comfort her a bit, but the next time I saw her, she started it all over again. It shook me that she would not let that incident go. She harped on it over and over for about three weeks, till she finally seemed to forget about it. When she let it go, so did I, but it seemed like a problem of repeating things again and again. Another sign of the disease getting a hold of her that I dismissed as “getting older and more worrisome”.
Then came the day that broke my heart, because it was absolute proof that something was really wrong. My Mother called me one afternoon to tell me she had a problem….. I figured it was the proverbial electronic issues, or something that needed fixing in the home. It wasn’t. I went to her home, (thankfully only about 6 miles from my home), and asked what she needed. She said that she could not remember where the post office was. I said, “Mom, you go there every other day, are you kidding me?” She wasn’t. I got her into her car and took her there. She remembered when we got there, went right to her p.o. box, no problem. Then she told me something that really worried me. She said that she had gone to get fuel for her car, and when she left the gas station, she turned the wrong way. She said it took her over twenty minutes to get home. The gas station was caddy corner across the street from her condo complex! That scared me… what if she got lost, etc. She proceeded to tell me that she was afraid to drive anymore, as she just wasn’t sure of herself, she gave me her car keys and asked me to sell the car.
I took her year old car, with a whopping sixteen hundred miles on it, and after driving it for a couple of months, I sold it. In the meantime, she told me since she could not drive and get around, she wanted to find an “assisted living” home for her to live in. I told her I would have my housekeeper stop in on her three times a week, help her go shopping, etc, but she didn’t want that. She had to be with people. I found out later this was her “safety mechanism”. She wanted to be around people, but what she really wanted was the security to have someone close to her to help if she needed something.
We investigated a few of the local assisted living institutes and found a great one near my home. She had a 2 bed 2 bath apartment, we put a lot of junk into storage, and moved her in…. she was very happy for about 2 months.
I would go over and have lunch with her a couple of times a week and take my kids over now and then. They had every amenity you could think of on the property. Mom started to deteriorate from day one. Unbeknownst to me, moving is the second most stressful thing a person can do, second only to losing a loved one. When a person with Alzheimer’s or dementia is stressed, it sets them back a LOT! She suddenly had problems with doing the normal stuff she had been doing, taking medicine, doing laundry, eating, etc. She stopped cooking and had trouble finding the lunch/dinner area. I drew maps, told her over and over, but it couldn’t get through. I was afraid she wouldn’t eat right and enlisted the aid of a mostly blind resident to go with her, and they would eat together, Mom would see for her, and she would guide Mom. That was ok for a short time, about 3 months, then Mom would forget who she was supposed to meet, or how to get to the lunch/dinner room. She would not go on outings, to stores, concerts, etc. She was afraid she would get lost, or miss the bus home. I had to get the staff to help her with medicine and food, which they did, for a price…. but that was ok if it worked. It did for a short time.
Then came the day I dreaded…….. I got a call from the assisted living nurse, Mom had fallen and broken a hip. I rushed to the hospital, it seemed that she had stepped off the sidewalk and gone down. The hip had to be replaced.
Here is the tip of the century: Opiates for pain or anesthesia is a real trip for folks with Alzheimer’s or dementia. It BLOWS out their circuits. Mom had a horrible time in the hospital, (remember when I said she was the go-along to get along Queen???) She fought with the staff at the hospital, threw tissue boxes at the attendants, actually spit her dentures at a nurse trying to take her temperature, it was her, (and my) nightmare. I tried to joke about that, but it was me just making the best of things. We got her hip replaced, I was with her at the hospital for about seven days straight, with breaks for sleep, food, etc. She was totally angry, upset, and hard to manage the whole time. It was hard for me because of lack of sleep, and seeing my mother acting like a maniac, screaming, crying, etc., even though there wasn’t a lot going on, but the medicine totally whacked her out of reality. Eventually, after about 4 weeks in the rehabilitation facility, she was released to go home. We moved her, again, more stressed, to a place where she was inside all day. There were other people there in the same condition. She seemed to like it, and felt secure.
The facility took Mom on excursions, they went on a small converted motor home-like bus and she would go now and then, because they wouldn’t stop, or let people off, just a ride for Christmas lights, or sightseeing. She liked that, but when she got back, she couldn’t remember which apartment was hers, but it worked out, the staff was GREAT. I was very happy with the staff, no theft, no abuse, or anything bad, at all. (lucky, I think).
Whenever I went to see her, I would put on my happy face, turn on the part of me that thinks I am a comedian, and ramp up the energy level to try to be “up” for her sake. I ended up entertaining the residents that could hear, or understand at all. That was ok, as I think they needed a little laugh. I would do impressions, jokes I stole, whatever I could to get the group of about 12 laughing, or at least awake and listening. The facility had an activities director, who was a complete wonder, she had well of patience that I don’t know how she could refill, but she did. I guess it takes a special person to work in a place like that, I know I couldn’t do it. I would leave there after a couple of hours a day just totally spent, frustrated, and sad. The director of the facility was a joy and a HUGE help to me. Hats off to you, Trudy, you know who you are!
I am not sure how people can just deposit a loved one in a home-like that, and not visit, or seem to care at all. I know it happened, The director told me that she saw me there more than any other resident’s family, ever. I don’t know how the families can be so cold. I realize that it is hard to be there with all the residents in the wrong reality, wandering around, some not being able to talk, or express themselves, but it was my Mother, and I could not abandon her. I want to believe in my heart that my being there so much helped her, as she lasted about eight years from when she was diagnosed. That is longer than most folks last, most with Alzheimer’s or Dementia only last about five years max.
I took a small dorm-size fridge/freezer to my Mom so she could have her beloved Pepsi or snacks without a problem. One day she asked me what that piece of furniture was. She had no idea. But she did drink the sodas and eat the chocolates, and snacks I brought. Some of the soda got spilled and she didn’t clean it out of the tiny fridge. So I did, but she swore she didn’t spill it. It was the disease making her revert to a child-like state of mind. After a while, she didn’t drink the Pepsi, and I stopped bringing it.
Her biggest threat was a turtle-pecan cluster blizzard from Dairy Queen, across the street. She ate those, no problem till the bitter end.
I used to take her to a local Chinese food restaurant for lunch on Saturdays or Sundays, and she loved it, every time, there was too much food, “Look at these portions, who can eat all this!” I could…. I had to box up the leftovers, which was a lot, and take it the home. I finally told the staff to keep it for a day, if she didn’t want it to toss it, as it just stunk up the community fridge it was in, and she would not remember it was there. In most cases, when something didn’t work or fit right, she didn’t remember it in a few days anyway. That is one of the blessings of the disease, she did not remember the hospital stay or the broken hip after a couple of days back home, she said her hip hurt a bit, but I would tell her about it and she would deny it ever happened. I had taken her in for cataract surgery twice, within 2 months, we got her eyesight to 20/20 without glasses, but she still had glaucoma. I showed her a picture of her a few years back, and she did’t know who it was. I told her, “it’s you!”, she replied, I never wore glasses. I could not convince her she did. That is the good part. Near the end, she hated her medication, especially her eye drops for Glaucoma. She was certain the staff was trying to poison her. Then accused me of it, too…. that broke my heart. You have to take it all with an understanding that the disease is the problem, not your loved one. The director and I decided she was ninety-two years old, why should we fight her to take medicine that wouldn’t make a difference, except for the long haul, when there wasn’t going to be a “long haul”.
Now let me back up a bit. There are a hundred stories from the time Mom was diagnosed till the time she passed on. I don’t want you to think it was all sad, gloomy, and frustrating. There were good days, laughter, love, etc. She did very well for a long time, with bouts of problems here and there. She always knew me and told me she loved me every visit, until about 2 months before she passed.
Then, one evening around nine o’clock, I got a call from the facility. This was another moment I dreaded. Near the end of the seventh year, they called and said Mom had fallen, and the paramedics were on the way. I rushed there and beat the fire truck. Mom was down, and couldn’t get up, I tried to help, but as it turned out her other hip was broken. To the hospital we went, again, this time as last my Wife was my salvation, helping me get time off my watch, etc. Again a hip was broken, the other one and they didn’t think they could fix it, as she was now 92 years old, and anesthesia was going to stress her system, maybe even kill her. They said it was a small fracture, and she would heal it, just stay off it as best as possible. By this time Mom was in adult diapers, not wanting her medicine, would NOT shower, but she, “washed up”. The hospital staff was great, and they wanted to send her to rehabilitation again. I told them to take her back to her home facility, they can do the rehab there, and not to waste time and her stress level going to the rehab facility. So that is what happened. That was a very hard decision to make, and as an only child, I was the only one to make it on her behalf, that was hard for me, but I didn’t have other siblings to argue with over which plan of care was best.
We sent her back to her “home”, but once again the anesthesia, pain medications, and other drugs really put her in a much worse frame of mind. She had forgotten her apartment, where it was, etc.
She was not wanting her medications, food, participation in activities, etc. The pain medications helped the pain but hurt her memory and attitude. It was a very hard time.
After that, she went downhill very fast, the last six months were terrible. the drugs, pain in her hip, and stress from all the above took its toll faster than just the disease alone. She began to ask how we were related, I would say, “well, I call you Mom all the time, does that ring a bell?” She would say no. That was devastating to me, and her. On the other hand, she always seemed to brighten up when I came into the room where she was, and ALWAYS would tell me she loved me when I would leave. She always knew we were related or connected somehow. She would confuse me with my father, (a huge compliment to me) or a cousin, or her brother. She usually would participate with the group when they did crafts and activities, but after the second hip break, she withdrew from that and just sat and watched. Soon, though, she lost her dentures, I found them under her bed, how they got there I will never know. Her world seemed to narrow down to naps, not wanting to eat, not taking medications, ( I told the staff not to fight her on these), and sleeping more than normal.
One day Trudy, the director called me into her office, and had, “the talk” with me. She told me Mom was in the final stages of life. It could be within the next week or so. I understood as I could see it happening. However, the “talk” was surely hard but necessary to hear.
I began to see Mom drifting away more and more. I went to see her one day, bringing her favorite Dairy Queen Blizzard. She was sleeping, I woke her, and she didn’t understand I had brought her favorite treat, she just wanted to nap. I stayed for about 2 hours, hoping she would come around. I finally put the Blizzard in the freezer and left.
I went to see her for the next few days, but she wouldn’t wake up, except to nod and smile at me and tell me she loved me.
On Saturday, my wife, Shelly, and I went by, and she was in bed at about noon. Trudy told me she hadn’t eaten anything in 2 days, do we want to start to keep her alive with “intensive” measures, feeding tubes, ventilators, etc. Mom had told me, years ago that that was not what she wanted, ever. So we said no. The home kept her comfortable, with morphine, etc. She was comfortable, but we all knew the end was near.
About three days later, Shelly and I were visiting, just sitting in her room, talking to her, even though she was unconscious, and Shelly told me to tell her it was all right to move on. Maybe she would just let go. That was the hardest thing I ever had to do.
I leaned over her, hugged and kissed her, and told her that everything was fine, that my children loved her, Shelly and I loved her, I told her all the arrangements were made, the business items she always stressed over were taken care of, and that she could leave us knowing that she had done everything and that all was well. I told her to find Dad, and be happy till we could be together again in Heaven.
Shelly and I went to have lunch, when we came back there was no change in her, she was in bed, sleeping, but her breathing was shallow, and I could tell we were close to the end. Shelly was doing some work on her phone, and I was reading a book on mine. We just sat, chatted, and listened to Mom breathe. About an hour later, Mom stopped breathing. I was tempted to call the paramedics. I thought for a second and decided not to. She left us peacefully. I called Trudy, thank God for her, she was there and came in to check. She agreed and called the funeral home. I had gotten the arrangements all set a week or so earlier.
I am positive that Mom went from this world comfortable, and she knew we loved her, I know she loved us. It was peaceful, and I know she lived a great, inspiring, and long life. I hope I can be like her and my Dad,
We had a nice, small graveside service after the family had a chance to view it alone, it was solemn, dignified, and just what she would have wanted.
I hate to admit the feeling I had only a little while later. I was feeling like a weight was lifted off me. I felt a little lost, as I didn’t have to go to home to see her, what do I do with my extra time, etc. I felt very guilty for feeling that sense of relief that she was gone to her reward, and I didn’t have to be at her side all the time, even though Trudy told me that I was there more than any other relative had for as long as she could remember. I still felt that no matter how much I did, it wasn’t enough…etc., etc. I went to the home the next week to collect mom’s things, and to direct the people at Sunshine Acres charity for orphans, as to what to take and what not to take. Trudy helped me a lot with my feelings of not doing enough, and being relieved that Mom was gone. I thank her for all her help.
I am not the most religious person, I have my faults, but I also have my faith. I know in my heart she is in a better realm, happy and healthy, hopefully with Dad, as they were a dynamic couple.
I do hope that some of this narrative helps you understand the world that the dementia patient lives in. It must be awful. It would be frightening, confusing, etc. I feel like I did all I could to help my Mother through the maze it presented to her. If you have someone you love that is in this strange arena, please find patience, calm, and do what the professionals tell you. I was helped by some of the best in the business, doctors, nurses, and the staff at the assisted living home. I thank my wife for her patience, especially near the end of Mom’s life, she put up with my sorrow, grief, guilt, etc. She was my rock.
The key to dealing with this is to find a way to find your own peace and comfort so that you can deal with the madness of this disease. If you come to terms with it, knowing it will win eventually, then you will be all right. That is the hard part.
Get all the help you need, don’t be a stubborn person, that won’t work. I tried. It drove me nuts and made my life hell. GET HELP. Have time to get away from the grind of it, take an hour, day, week, whatever you need to stay sane yourself. The one thing that gave me comfort, when I lost my temper, yelled or stormed out of a room, was that Mom would not remember it in exactly 30 seconds. It was true. She didn’t, so I felt that God protected her from my rant about, “Why aren’t you eating” , or “Why aren’t you taking your medicine?”. I am still trying to deal with the guilt of some of the times when I lost my cool, and left, or said harsh things. PLEASE, get help so you don’t have to deal with the guilt later. That is important! It has been over 3 years for me since Mom has passed, and I still have problems with the guilt of my frustration with Mom. I loved her so much I just couldn’t understand why she was so hard to deal with. It was the damned disease. That is all, it wasn’t my mother, it was the damned disease.
Please remember that above all, when your loved one is difficult to deal with, or does things they normally wouldn’t do, it is just the damned disease, not your loved one. Don’t take your frustrations out on them.
If you like this story, come listen to me on SKY 7 digital radio. You can hear me on “Only Classic Rock”, playing Classic Rock 7 days a week from Noon to three pm Arizona time. Listen in, you may hear some of my “Dean-isms.”
The Dean of Rock & Roll