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Alzheimer’s – Finding the Right Treatment Plan
Over the past 8 years, my family has been dealing with signs and symptoms of Alzheimer’s in my Mom who is now 86. Initially, with her forgetfulness and not recognizing someone right away, we thought, you know she is getting old; she is entitled to not being right every now and then, heaven knows we forget from time to time ourselves. But the frequency of these signs started occurring on a regular basis. My Mom was initially taken to a geriatric psychiatrist in NH where she lived. The Dr. prescribed a drug called Aricept, the one you see most of the time on TV commercials. This drug with its popularity sounded promising, but after a couple years of trying this medication, there were no significant signs of improvement. She also suffered many of the side effects associated with this medication i.e. dizziness, upset stomach, nausea, trouble eating, and sleeping disorders.
In 2005, my Mom desperately needed knee replacement surgery on her right knee. The operation was successful; however, there was a drastic change in my Mom’s memory and behavior. My Mom would hide her purse and wallet, thinking everyone wanted to steal it. She could never remember where it was hidden and would accuse family members of taking it. In addition to the stealing and hiding, she became very paranoid. She needed all the window shades drawn and the outside doors locked late in the afternoon everyday. The level of anxiety and agitation she displayed became more heightened. She would get up and down from her chair to check the windows and locks and repeat herself over and over asking everyone if the doors were locked. Just in general, she was up and down and would never stay still for any period of time. She was like the Ever Ready Bunny, i.e. she kept going and going. I was exhausted just watching her and I am 35 years younger. She had always been physically active walking and exercising. She took good care of herself eating right, baked or broiled, chicken and fish and lots of vegetables. She religiously took her vitamins and supplements every morning with a bowl of homemade oatmeal sprinkled with bran on top, a glass of half prune and half orange juice mixed together, yogurt and a cup of coffee.
My Mom was an old-fashioned cook, making everything from scratch. Her nickname was Betty, aka Betty Crocker, making sure there were three balanced meals made everyday with desserts. These meals were not your simple toast and coffee. I am talking bacon and eggs, homemade blueberry muffins, pancakes, homemade oatmeal, percolated coffee, roast beef sandwiches from the prior night’s dinner for lunch with homemade soups, homemade cookies, then homemade spaghetti sauce and spaghetti for dinner with bread, salad and more desserts, like apple or blueberry pie with ice cream. For the holidays, she out did herself making numerous cakes, pies, breads, cookies, fudge, and other various desserts along with all the main meal’s homemade items. She made enough food to feed an army, our family, friends and neighbors. If you can believe it, we were all pencil thin, the good old days for sure. This cooking exercise was my Mom’s regular routine for over 60 years until Alzheimer’s hit. At that point, she had difficulty remembering how to make a peanut butter and jelly sandwich. Also as part of my Mom’s regular routine, she cleaned, cleaned and cleaned, using Ammonia, Clorox, Pinesol, Lysol, Windex and Pledge. Did your love one use any of these products? I sometimes wonder if there is a link with these products or a combination thereof and Alzheimer’s. Or is there a correlation with the bleached sugar used in all the desserts we ate? Or the Crisco and butter?
Back to the surgery, a few year’s after the surgery, I learned that being heavily sedated, i.e. under anesthesia can cause Alzheimer’s to progress more rapidly. I had also heard in more recent years that if surgery is necessary in an Alzheimer’s patient, inquire on whether or not a spinal block could suffice or if there are various levels of anesthesia, maybe a lower dosage. My Mom required a second knee replacement in 2008. This surgery advanced the Alzheimer’s to an almost uncontrollable state with full-on hallucinations and delusions, screaming fits. My Mom after surgery didn’t believe she was in a hospital or that she had been through surgery. With all the wires and monitors, she thought someone had pulled her house apart and was doing construction. She screamed that she was going to sue for wrecking her house. She yanked out her IV and next tried her catheter. While in the hospital, 24/7 nurse bed watch was required. I believe that her pain medication OxyContin attributed to her crazy uncontrollable behavior. We had never seen her in this psychotic state. That medication in my mind was not for her. After being released from the hospital and into a nursing rehabilitation center, she gained control of some of her senses but not all. A doctor at the rehabilitation facility introduced more sedating medication like Seroquel and Lorazepam. Her downtime from this surgery seemed miraculous. She was capable of walking almost instantaneously with no pain. I believe that the Alzheimer’s numbed that part of the brain in charge of pain, no brain no pain. My Mom continued on low doses of Lorazepam,.5 mg and Seroquel, 25-30 mg. These medications were used to quiet her symptoms of agitation and anxiety which occurred late in the afternoon and early evening. These symptoms later became known to us as the Alzheimer’s symptoms for sundowning. Going from light to dark triggers a reaction in the brain that causes agitation.
For the next year, my Mom’s legs strengthened, but her mind and behavior declined. The decline may be attributed to insufficient social interaction. I have been told that social interaction for Alzheimer patients is very beneficial and therapeutic, adult daycare centers specializing in Alzheimer’s is a good avenue to pursue. Seek daycares that have programs involving physical exercise, mind games, eye, hand coordination activities e.g. arts and crafts. Also, ensure that the facility has some type of security or wander band should your loved one become confused and walk away.
My Mom, on the other hand, was being watched by only one family member and received limited visitors. In March 2009, my younger brother and I became jointly responsible for my Mom’s health which at that time, I brought her to CA. I was eager to have her here, because I felt that California’s medical care surpassed that in many other states. My belief is based upon our elderly population. We have a greater population due to our weather and state size. CA also has the greatest number of doctors of any state due to size. I am also surrounded by many retirement communities.
One notable event that occurred while travelling by air from Boston to Los Angles, half-way through our flight, my Mom flipped out. What I mean is, she started screaming, swearing, kicking, hitting and pulling my hair. She got out of her seat and started aggressively charging towards first class. She thought she was at a job that she held more than twenty years ago. She wanted to speak to the bosses because she didn’t know where all the products went that they had made. With the assistance of 4 flight attendants and paging a doctor, my Mom was brought back to her seat but would not sit down; they walked her up and down the aisle to calm her. My Mom carried on for the remainder of the flight and when we started approaching Los Angeles, she would not sit down for landing. The doctor, a geriatric psychiatrist seating diagonal to us helped to seat her. We both held her down for landing. The flight attendants were going to use a straight jacket. I was never so scared or embarrassed. I thought my Mom would sleep the entire flight since I choose a direct evening flight.
After this episode and finally returning home and getting settled, I did my research to seek programs available for people with Alzheimer’s. I had the good fortune to speak with a Program Director at our local Adult Senior Daycare Center. The woman I spoke to provided me with names and telephone numbers of medical resources to contact to have my Mom evaluated. Prior to this time, no one really medically evaluated her. My Mom went to the doctor’s every several months and family members talked about her condition, but there was no real testing. The appointment time would probably last 15 minutes tops every 6 months to a year. No one ever explained anything to us or what direction we should go. There was no Alzheimer’s map. Now, the next set of events was the most valuable and sped up the finding of a successful treatment plan in a matter of a few months.
1. My Mom went to a Neurologist who ordered that a MRI, blood work, and a genetic test be performed called the Apolipoprotein E Genotype. There is a genetic marker that seems to be prevalent in most people with Alzheimer’s, it could be all patients but I don’t remember exactly. If you are tested for this marker, and have it, it doesn’t mean that you will have Alzheimer’s if I understood the Doctor’s explanation correctly, so double check if you have it done. If you have a parent with Alzheimer’s, you have a 50/50 chance of having Alzheimer’s too.
2. The Neurologist also had an Internal Medicine doctor perform an extensive memory test. This test was more intensive and longer than what is called the Folstein Mini Mental Test. The Folstein Test is a good test to try at home and as a doctor’s follow-up evaluation. I found this link below that had a good example of the Folstein test.
3. Once all the tests results were evaluated, my Mom was placed on several prescription medications to begin the trial and error process to determine which medication(s) would work best. Medications work differently with each person. It was also explained to me that my Mom could have Lewy Body, and not Alzheimer’s. The words Lewy Body were completely foreign to me. What the heck was Lewy Body? Lewy Body has the hallucinations and sleep disorders along with other symptoms and falls into the Parkinson family. A definitive diagnosis cannot be made, unless a brain autopsy is performed upon death.
4. My Mom was initially prescribed Namenda, Exelon, COQ10 (400 mg) and a low dosage of Seroquel. The Doctor had said it would take awhile for the medications to get into her system and take affect before the result could be determined. For the next few weeks, I thought I had Dr. Jeckal and Mr. Hyde living with me. My Mom didn’t sleep, she thought my Dad was still living and she would scream “Where is he?” She thought my 50 year old brother was 6 with the Mumps and would scream “Where did he go, he is very sick with a high fever?” Ever few minutes I became a different person to her. She would ask “Where did the other person go that was just here?” You could never convince her that you were the same person. Or that her kids were all grown up. She lives in the past when she was a young girl and her Mom was still alive. My Grandmother has been dead for over 50 years. My Mom would go to my son’s room and ask him where his parents were and how could they leave him here. She told him not to eat the food it was poisoned. My Mom rarely slept, which meant I didn’t sleep. My house has lots of stairs so I was nervous my Mom would get out of bed and go roaming and maybe fall. I slept right next to her or tried. My Mom would put clothes over her pajamas when she got dressed. I became so frazzled you would have thought I was the patient. I finally called the Doctor after a couple weeks and conveyed everything to him. He said some things were symptoms of Alzheimer’s and some were side effects of the medications. Now how was I suppose to know what was what. I asked if my Mom could be checked into a facility where they could monitor the various introductions of medications and behaviors to come up with which ones would work. When he said yes, that was all I needed to hear.
5. The hospital facility has a unit that is for the sole purpose of assessing a dementia patient and deriving at a treatment plan. This unit is comprised of a team of Psychiatrists, Internal Medicine Doctors, Social Workers, Physical Therapists and Nurses. The Team works with a small group of patients in an assisted care type of environment. They have a calendar of daily events that the patients participate in. For example, there are exercises, arts and crafts, brain games and afternoon movies. The patient is observed 24/7 for a period of 2 weeks. Each week the team meets to discuss each patient’s progress and whether or not the prescribed medications are working or if medication modification is necessary.
6. A psychiatrist meets every day with each patient. The patients wear their normal street clothes and a wander bracelet for safety. During the first 3 days of treatment; it is recommended that family members do not visit. The purpose of no visitation is to assess the patient’s true behavior. This type of program is needed and should be available in every city and state throughout America in every hospital. The program only takes patients 55 years old and up. This particular Facility’s program should be used as the model to replicate everywhere.
7. At the conclusion of the 2 week stay, they were able to keep my Mom calm so she wasn’t up and down and roaming all over and would sleep through the night. My Mom even participated in some classes. She thought she was in school and asked when she was getting her report card. The combination of medication this time around consisted of Namenda, Depakote, Lorazepam, Seroquel, this dosage went from 25 milligrams to a 300 mg time released formula. Everything seemed to be going well until I brought her home. She became very anxious and didn’t know who I was. She thought that I was poisoning everything and was going to kill her and my son. When she bathed, she couldn’t believe she wasn’t turning blue. She came out of the bathroom naked. She said the audience was going to be mad at her. I immediately paged the Doctor and had spoken to him a few times prior. At this point, he said to bring her back. When we arrived at the hospital, my Mom knew something was going on and didn’t want to go into the building. She ran from me. The hospital is on a busy street so I naturally panicked. After pretending, I was leaving, I got back into the car and she eventually got in. I drove to the back of the hospital where the team was waiting.
8. My Mom stayed another 2 weeks. During this time she was given a drug called GEODON, 40 mg. After seeing her on this drug, I thought she was cured. She was acting normal, and coherent, and spoke logically. I couldn’t believe it. This drug along with the prior medications in 4 seemed to do the trick. My Mom acted normal with me during the remainder of her stay with me in CA. In the middle of August 2009, I transported her to St. Louis to stay with my brother. We share her jointly. I stayed in St. Louis for 2 weeks to ensure the transition would go smoothly.
Another noteworthy event was the flight to St. Louis. My Mom started to act somewhat crazy. She wanted scissors to cut her seat belt so she could get out. She kept fidgeting trying to get it to release. I had placed her in a window seat and made her stay seated until we landed. I tried my best to keep her distracted. Thank God we were close to landing. I think there is something that happens with the brain at high altitudes or under the condition of being in a compressed air environment. I asked the doctors, but no one could answer. Maybe the oxygen supply becomes thinner like when you climb a mountain. I believe there is a direct link with the brain and a person with Alzheimer’s behavior so don’t transport someone alone, like I did and if you can travel by ground do so.
9. Since my Mom has been in St. Louis and under my brother’s care, she was approved as a candidate for a trial research drug program for Eli Lilly. It is approximately a 2 year program. The test medication has gone through many prior test trial programs. The programs have seen much success with the drug. This drug attacks the plaque in the brain and breaks it down. The plaque build-up is what expert believe causes Alzheimer’s. My Mom receives an infusion every month. We don’t know for sure if she is the patient receiving the actual medication or the placebo, but we believe that she is getting the drug. After the infusion, she becomes very alert and sometimes wakes up during the night. Since being on this trial program though my Mom has lost over 40 pounds and has more or less stopped eating sufficient meals. She is consuming protein shakes which contain 25 grams of protein along with other vitamins and minerals, bananas, berries, vegetable powder, ice cream or yogurt. She drinks these twice a day along with drinking a couple Ensures. We are not sure if her lack of appetite is due to the medication, progression of the disease, or a change in her environment. Her Doctor is okay with her current weight. She keeps asking “When am I going home, my Mother is looking for me.” My Mom has incontinence and constipation and needs full assistance bathing and dressing. She has fallen a few times due to not always using a walker to steady her gait.
In conclusion, is there any real cure? No. Is there a treatment plan that can work? Yes, however, depending if you take the one doctor one drug at a time approach it may take a lifetime to find out what works and doesn’t work and you may end up in the hospital from stress and fatigue. I recommend the team facility approach to expedite results. If Alzheimer’s runs in you family, make sure to get a Durable Power of Attorney for Health and Finance and a Will and Living Will put in place early while you are still deemed competent for your health and finance. Also specify your wishes for facility placement should your care become too overwhelming for your family or caregiver. If you have assets, you may wish to gift them early to your heirs, the rule is 5 years or more so they are not taken for payment to get into a facility. There are also rules to qualify for Medicaid. If you are over the threshold but cannot pay 100% of a facility’s monthly amount, Medicaid may kick in the difference which falls under paying for the Medically Needy. Medicaid has monthly income and asset thresholds. Check with your state to find out how much those thresholds are. You can normally find this information online.
I have a survey that I created to see if there is any correlation with a person’s environment, foods they ate, cleaning fluids or chemicals they may have been exposed to. I am not a doctor or in the medical field, but I feel that if I could see all the data, I may be able to determine if there are any correlations with everyone, what is the common denominator. Doctors are working on curing Alzheimer’s and not what is causing it. If you would like to participate with this survey, please email me at [email protected] Or if you have any questions or comments, please feel free to email me. As always, let’s thank our everyday Heroes, our military, firefighters, police force and especially our doctors, nurses, paramedics, caregivers, etc. Thank you!!!! Hero Cards, Inc. ( http://www.herocardsinc.com )
For more information on Alzheimer’s, please go to the Alzheimer’s Association website.
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