Thursday, April 29
The mammogram
Tuesday, April 27
Short lived
It all started with meatloaf. That dreaded meat in a pan that wants to be a loaf of bread but never will attain that status. Seriously, who decided to put meat in a pan and call it meat loaf. The very name induces vomit like sensations. I mean meat a la mode sounds better or meat pie. Anyway my mother has wanted some of this disgusting dish and so I decided to make it. Now I don't generally cook meat and have never cooked meatloaf. I tried to piece together a recipe from my mother and father and one hour later, I had a pile of meat in a loaf pan (YUCK) s it turns out, the meatloaf tasted rather horrible and I was quite embarrassed by it. My mother tried it and did not like it (real surprised I bet). This caused my mother to be extremely agitated. Dad spent the entire night being reamed out for one thing or another with catastrophic reactions occurring often. From what I remember, he upset her because he makes noises, goes on the computer, puts the trash out the wrong way, puts the mail in the wrong places (anything with a name on it MUST be shredded). And it is not just a quick comment either. For instance, Frank, why did you do that, why that, I don't understand. No stop doing it and do it right wait that is not it Iahhhhhhhhhhhhhhhhhhhhhhhhhhh help me. You're doing it on purpose. NAAOOOOOOOOOOOOstop and listen I want that there not there. The mail has our thing our ummm you make me go crazy why don't you do it right. You know what I mean and you don't do it. Screams in between and horrific name calling. And it is rapid fire-none stop endless complaining, harping, and negative insults after insults. Imagine four ceaseless hours of this. First the meal (which I must admit she had every right) then the trash and mail, then his feet which caused her to go mental. He did not wash his feet well enough for her so he rewashes and adds baby powder since soaps and other chemically strong cleanser causes an emotional outburst. Sure enough now baby powder is on the forbidden list. She completely melts down and calls me screaming hysterically about how my dad is trying to kill her how he is a bast****, an evil evil man that does it on purpose. Let me remind you this is baby powder we are talking about. After fifteen minutes of rantings, she is calm for the moment. I am sure many more of these moments occurred and I was not privy to them-thankfully for me not so for dad.
This morning, my phone rings at the wonderful hour of 6:40 and I know that it can only be my mother. Sure enough it is and she is screaming. There is nothing better than waking up from a dead sleep to the insane ramblings of an Alzheimer's mind. She is completely belligerent and making no sense. I gather that my dad must have woke up at 6:00 (dad how dare you :) and actually left for work without making breakfast having coffee or making any major noises. When he left he was respectful enough to say bye to her. I can imagine his plight this morning as he was ready to leave-should I leave or say goodbye.....I am doomed either way so i mind as well get it over with. Ever so quietly sneaking up to the door so Daisy will not go nuts barking and gently, quietly saying, Audrey I am heading to work now. BAMMMMMMMMMM let the antics begin. She basically said some very not nice things-just the kind of things that start you out on the right foot...and now for the moment, Dad is back at Grandmas.
Saturday, April 24
Irony
It has been a few days and quite a weekend. I will resume where I left off. My mother is having an extremely difficult time grasping the possibility of breast cancer. Whether it is because of the stress or not, we are seeing her short term memory beginning to go. She will repeat herself often, ask the same questions, confuse the facts...She will also forget something I told her just a few minutes earlier.
Here is the letter I had sent to Social security. Please review it and let me know what you think.
We are here today to present information regarding Audrey and her condition. White it is not argued that she demonstrates a disability, the issue is when the disability affected her life significantly enough to impair her ability to work. Due to the nature of the disease, it took many years of tests, visits, medical procedures, and scans to derive at the conclusion of Early Onset Alzheimer's Disease. According to Dr. Kenneth Langa, associate professor of internal medicine at UM in Ann Arbor, said it is not unusual for a relatively young person to have many tests before receiving a diagnosis of early onset Alzheimer's
"You'd want more evidence that that's what inf act is going on given the rarity of Alzheimer's disease in someone that you," Langa said. "On average, they would have more tests, and more expensive test, and more elaborate testing than an older patient."
Unlike the traditional form of Alzheimer's ,which occurs in the elderly, the early onset type first produces symptoms prior to the age 65. Estimates indicate that only 1 out of 10 percent of Alzheimer's' patients have the early onset form and because it is relatively rare, there is often a delay in making the diagnosis, said Erin Heintz a spoke person for the Alzheimer's Association. Audrey had received the diagnosis of menopause, anxiety, depression, brain aneurysm, asthma, muscle spasms, angina, night terrors, and stress. She underwent multiple MRI's Cat Scans, Pet Scans, Ultrasounds, catherization, which a conclusion of minimal findings. It was not until 2008 that Audrey received her diagnosis, fiver years after he symptoms manifested themselves enough to cause significant difficulties.
"Imagine slowly forgetting everything you learned in life? Imagine not knowing what day, year or season it is. Imagine being angry, afraid, tormented, confused, sad and frustrated most days? Imagine being afraid to do simple tasks like taking a shower, imagine forgetting how to dress, brush your teeth, use your fork, swallow, laugh, and even talk. Imagine staying awake a night even when you are exhausted because your brain won't rest. Image forgetting everyone that was important in your life.. everyone that you ever loved. This is the world of Alzheimer's as seen through one patient. Now imagine being 51 when all this started. This is the world of Early Onset Alzheimer's.
As we discuss her case, I hope you gain an understanding of this disease and the history of Audrey, It is my hope that you will see her years of dedicated work and agree that she should be awarded this aid.
Audrey has worked her entire life; she worked as a secretary in the school systems, a paraprofessional, transcriber, and real estate agent. She received high recommendations and praise in all her jobs for her efficiency and organizational skills. She was employed from 1988-1004 as a Secretary, became a paraprofessional from 1996-2000. She worked as a real estate agent from 1997-1999 as returned to in during 2003. During the one break in her working career, she requested time off from her job in order to care for her mother. During 2000-2002, Audrey opened her home up to her mother who was diagnosed with Alzheimer's.She hired no help and worked 24 hours a day providing everything her mother needed. While it was not a paying job, it was more demanding, more exhausting, and more draining than any of the previous jobs that Audrey had obtained. It was because of her caring for her mother that she is unable to receive her benefits now. The unforeseeable result was that Audrey bestowed to her mother the last two years she would have been able to function in the work place. Upon her mother's death, Audrey tried to procure a job. She returned as a real estate agent, but realized that she could not complete the work needed. She had difficulties with the paperwork and understanding contracts. She decided to return to the school systems and applied at multiple job listings. She interviewed and did not receive a job due to her inability to control emotions and her lack of social skills.
As you examine her medical record, you see a change in Dr's notes regarding Audrey. Prior to 2002, her Drs. never mention her mental status or behaviors. In fact during 20-00-2002, which were years of extremely high stress, not once is she considered depressed, anxious, neurotic, etc. Is is not until 0003 and 2004 that her behaviors started to impede her life in all areas.
Alzheimer's is a progressive brain disorder where nerve cells in the brain start degenerating and die. A person suffering from Alzheimer's has problems with memory, judgement, and thinking. As a result, they cannot perform day to day activities which affect their social life and family life. In the rare cases of Early Onset, it is quite common to see the EOAD accompanied by mood problems. Other symptoms include confusion, restlessness, change in personality, and decreased judgment. A normal happy persons may become irritable, irrational, and possibly aggressive with very sudden mood swings. paranoia, jealousy, fear, and delusions are common. Another symptom is called myoclonus, which causes muscles twitching and spasms. This is more common in people with Early Onset than those Who develop the disease later in life. Often these illnesses are not diagnosed for a while due to their age and is often mistaken form depression.The younger the patient, the more progressive the disease and the more fraught with complications. Most people believe that Alzheimer's s displayed by memory issues and that the damage is to short term and long term memory. That is true in most cases; however, damage is done in many areas and affects many aspects of mental function, meaning the difficult cognitive abilities are damaged unevenly. As demonstrated on the PET scan, Audrey's are of damage are in the Left and Right parietal Lobes, and the frontal left lob. Impairment to these areas in the brain result in ability to plan a sequence of steps, loss of spontaneity in interacting with others, loss of flexibility in thinking, persistence of a single thought, inability to focus on a task, change in social behavior, inability to name objects,difficult with left and right, loss of awareness in surround space, difficulty with eye and hand coordination, difficult with drawing objects, and difficulty with visual attention.
Prior to 2002, Audrey exhibited no major health issues or difficulties. Starting in July of 2002, she mentioned having night terrors. She would wake up screaming and would be in a state of horror. She was very tense and upon wakening, was extremely confused. From September2003 until December 2003, she underwent an MRI of the Brain and lumbar/spine, ultrasounds of the pelvic/abdomen, EEG, and nerve tests (sensory and motor) to find out what was ailing her. Her family Doctor ordered an MRI on September 11, 2003 due to a change in mental status. He again addresses it ion the 23rd of September. This is the first indication that something greater was going on. There was something affecting her memory. Nothing presented itself from her testing. She also complained of severe headaches and pain. During 2004, Audrey complained of heart problems, trouble focusing, sleeping, weird sensation in her ears, balance and coordination issues, and having a hard time doing things. She was diagnosed with asthma, but there is a debate on whether it was asthma or anxiety. She also complained of tightness in her chest. In August of 2004, she mentions that her night terrors were worsening. she had trouble focusing, severe fatigue and found her husband to be like a stranger. She continues to complain of chest pain, dizziness, and shortness of breath. her family doctor diagnosed it to be depression and anxiety. Audrey denied it and was referred for psychiatric evaluation. She underwent catherizations, EKG, Ct of the brain, and again there was very little found.
In 2005, Audrey demonstrates stiffness in joints, dizziness, chest tightening, muscle aches, fatigue, muscle spasms (myoclonua), anxiety, trouble focusing, sleep issues, fainting, disorientation, and vertigo. Her family doctor again diagnosis anxiety and depressions. Another doctor diagnosed anxiety and also referred her for evaluation. The doctor described and episode in which Audrey pretend to faint and became very distraught and confused. Yet another Doctor describes Audrey as a neurotic lady. Audrey again mentioned in a vi st to her family doctor that she is very disorganized, loses items, has difficulty with attention, extreme mood swings, accented emotions, disorganized speech, scribbles, worse memory, and issues with spelling. Although all the testing came back negative, it is now apparent to both her family and doctors that she had all the symptoms for EOAD. The fine motor deterioration, behavioral issues, social issues, judgment issues, and processing issues now make sense. IT is hard to determine at what stage she was in, but it is evident that she was impaired mentally and behaviorally. Even if she could have procured a job, it is unlikely that during the 2004-2005 year, she would have maintained the position for any significant time.
Thursday, April 22
Back to Boca
Round two came when my brother showed up for his movie night. He arrived at 3 and spent a great deal of time searching for my mother's missing money. You can imagine the state of pandemonium that ensued. Mom running around screaming and moaning at the same time completely freaking out that her money was stolen and was missing. She obviously did not like her previous hiding place and had arranged a new one. During this episode, a new development occurred. She could not remember my brother's name. Now this is not a misunderstanding due to her freaking out. At first it seemed that it was. No this was complete forgetting. She screamed at him saying listen Frank no I mean you what ever the **** your name is. After calming down she asked him his name and continued to repeat his name over a few times to let it sink in. I can only imagine the pain he must have felt at his own mother not remembering his name. It is only a matter of time when it will happen to all of us and as it happens we will toughen our skin and move on. But the firsts are always the hardest. Money is found and all is well for the moment. Then the grocery shopping. Mom overhears Dad talking to Kevin on the phone about meeting him at the store to give him the money for the food. So of course she wants to go. Dad now has to come over, pick her up, bring her to the store, wait on Kevin and her to shop, bring them home again. Mission accomplished and back home at 6:00. Now for supper-they order pizza and Dad leaves to pick it up. After waiting 45 minutes, mom is now extremely agitated yet again and I am sure Kevin is too (especially since it is now hour four with mom in a very agitated state) Dad decides to sit down to eat. Mom was starting to get agitated with his presence and it was when he was ready to leave, she had become calm (since movie night requires only Kevin, she will not start it until everything is the same as it normally is-it messes with her when other situations arise) . Ah movie night finally commences and for now there is peace. My poor dear brother-at least you have a few days break coming up.
A new development in my mother's health and some of you may misunderstand what I say. I am hoping that the message is clear and does not come off in the wrong way. When I spent the night at my mother's house on Monday, she mentioned lumps in her breast. I found two slightly large lumps in her left and two tiny ones on her right. I am trying to schedule her a mammogram prior to her hearing. After she and I talked, she had decided that if her breast cancer has returned, she will not take any treatments or do anything else. I completely agreed with her and sympathized with her. I too would rather leave with dignity than to die without my brain, my abilities, my gifts, and everything else that Alzheimer's takes away. It is my deepest prayer for her that it has returned to save her from the suffering that she knows is and will be taking place. I find it quite hard to actually verbalize this and the realization of this horrible catch 22 hits me. What a reminder of who is in control of the twists and turns in our lives. I am thankful that I have such a personal relationship with my Lord for it is He that helps me through all this. While I may not understand the pointless suffering, I must realize that I see only a glimpse of this tapestry. It may not be pointless after all, but a intricate and beautiful design. There have been so many times in my life that I did not see the reason behind the problem or blessing. It was only years later that I could exclaim Aha-now it makes sense. I wonder if I will ever have the Aha with this one....
Tuesday, April 20
Video of my mother
I spent the night at my mother's last night and it will be one of the best memories I shall ever have. It started off slightly crazy and ended wonderfully. She enjoyed playing with Mackenzie and together they watched A little Princess. At the end of the movie, Mom got rather upset because I was mean. Why am I mean you ask? Because I felt that it was time for bed at 9:30 and did not want Mackenzie to stay up and watch Bride and Prejudice. No that was not a misspelling. There is a movie called bride and prejudice I promise. While I have seen the movie (unfortunately) I do not want my three year old to see it. I could tell my mother was controlling her emotions and let me put Kenzie to bed. She was muttering and mumbling constantly coming in and out of the room to tell me that I was mean. Finally I finished reading stories and instantly my mother changed. She asked if she could snuggle with Kenzie. It was too sweet. Granted, Kenzie did not go to sleep until 10:30, but she was able to fall asleep in my mother's arms. Mom and I spent some time talking and eating and cleaning. finally our movie started. It was Stepford wives-the new version. When the movie was over, I stayed up with her until 3:30 discussing the hearing. We found out that the hearing requires mom to come and I found it scary to talk about her in front of her. I decided right then and there to mention everything that the reports state and tell her about her condition. It gave her peace and helped her feel better about herself. I think my mom becomes better in the wee morning hours. I finally drifted off to sleep at 4:30. Tired and worn out, my heart is singing a little tune. It is short lived though. My brother is currently on the phone with her as she is screaming hysterically since he Will watch my children for an hour before heading up to her house for his movie night. Ah fun times.... Here is a video to give you an idea of the mildest of explosive episodes.
Saturday, April 17
Saturday, April 10
Distraught
Thursday, April 8
For me-a relaxing day
My mother to day has not called me but twice. While she was difficult, I know not the details. I do know that she is very confused with the phone and the ac.... Time is growing short before she will have to let my dad move back in. As it is, she wants him every night and gets despondent when she does not see him. That is a good thing-as she realizes that she needs someone, she will be ok with him coming back. I feel for my dad though because I know it will not be easy. I can only pray that we get the SS in May. Speaking of which, time to go work on some letters. Night Night.
Tuesday, April 6
Broken Dentures Take 4
Sunday, April 4
Easter-another dreaded holiday
Typically my Easter is like that described above. This year however, we did not have a plan. With mom in her sporadic ways, we could not finalize any ideas. I made a ham that Jason and I do not eat, butter beans, mash potatoes, glazing, and of course the Easter baskets. We have quite the day of deliveries ahead of us so I prepare the dishes, one for Grandma, one for my mother-Gigi, one for Murray, another for Ms. W, another for our adopted great grandma, some for my dad and the remainder for my children and brother. I head over to my grandmothers to deliver the first round of food. Children in tow, the plan is to go to Ms. W and then to my grandmothers but one phone call alters it. My mother is having difficulty with the phone so a quick detour is planned. She is upset at my quickness but I reassure her that we will see her when we get together to eat. I spend some time at grandma's and off to the house to prepare for the rest of the day. Jason heads out to Ms. W and brings her some food. During this time, my mother has called numerous times to myself and my brother. She is greatly upset because my father was supposed to drop off her dog at 11:30 and he was late. She also gets upset with me for no apparent reason. She informs me that she wants the Easter baskets back from the children since we are not all getting together to eat. I continue to invite her over but she refuses to leave the house. She tells my brother that she is going to Bakeract herself (I believe it is because she saw one get bakeracted and they had lots of attention bestowed to them) Phone calls in between the deliveries-back to my grandmother's to give my dad food for him and Murray. It has been decided that we will eat our own meal since the day has become to chaotic. One more meal to deliver and back home in time for a meal and bed. Phone calls continue and she has become much calmer. In fact, again she amazes us. She decides to walk to Murrays to check on him. Dad is over there and is able to walk her home and spend some hours watching the Office. The night ends rather peacefully and I may get to sleep before 1:00. I would have been asleep two hours ago but I had to finish a huge assignment. After I submitted it, I looked at the time stamp and realized it was not due until next Sunday... This week should be a bit easier with no school work to do. Sorry so non descriptive and weak. I can tell I am tired so off to bed I go.
Saturday, April 3
The fall of the golden boy
Kimberly the Barber
Ahh amazing what a cup of coffee will do for the sleep deprived. Running on an hour and a half sleep right now and feeling rather well considering. Another movie night and what a horrible movie it was. For anyone interested, Kate & Leopold was another romantic movie with an attempt at a bizarre twist-one from the past and one from the future merge together and must decide what to do to make it work. I have never been one for romantic comedies and unfortunately that is all my mother thinks I like.
Yesterday was such a busy day and it did not end until 2:00 am. I awoke with the children and had an hour to run around to different doctors obtaining medical records for our upcoming hearing in May. I was successful and found the jackpot of all records. This record helps substantiate my diagnosis of extreme anxiety and depression manifesting itself prior to more obvious symptoms in my mother's Alzheimer's. I rush back home, giving my husband a few moments to gather his stuff before he heads out. After the little ones take their nap, it is off to visit Mrs. W, an 84 year old woman that has become very close to us. We spend a few hours conversing with her and get her grocery list. On our way home we stop to pick up some potatoes so I can make my mother's old favorite-Shepard's pie. I have one hour to boil potatos, fry some hamburg (which we don't eat since we stay away from pork and red meat)combine it all together with some green beans and cream corn , bake it, feed the children, and travel to my mom's for movie night. All gets accomplished and I am en route to dear mother's house.
But I digress. I begin the tedious task of reprogramming new phones that we got-her old ones have worn away because of being thrown and banged so often that they no longer work right. Dad had spent many hours searching our little town for the exact model and resorted to ordering them directly from Uniden. I make sure the speed dial is the same despite the incessant pleas from my mother to change them all. I tried that one weeks ago and she could not dial anyone. I leave it alone and distract her with my own pleas of a shower. I have not been able to get her to bath in a few weeks and it is noticeable now. Her hair is caked with some food and grim, her skin is oily. She vehemently opposes the idea of getting clean. It is only when I agree to cut her hair that she is willing to bathe.
The movie time is and always has been the best part of the night for me. We laugh, we dance, we hold hands. It is the only time when for just a few moments, my mother is my mother and I am her daughter. I would not trade that for anything. The movie finishes and I am on my way home. My night is far from over however. Four phone calls later (mind you it is 1:30 am when I leave). She is unable to work her ac and needs me to tell her how to cool her house (3 times). She calls me the fourth time to let me know she is ok now. My daughter has awoken at this point because of the phone calls and is such a silly nut. She finally drifts back to sleep-time is now 2:30. Off to bed I go and not 30 minutes later my son awakens. Why I have no idea but he always picks those nights when I am tired. He is also a silly nut and in a great mood. Only problem is he is wide wide wide awake. I leave and shut the door behind me, but unfortunately he is now able to open the door. It is not until 5:30 that I finally hit the ground and am in a deep sleep. 7:20 little girl awakes and little boy too. Looks like sleep is not the option today so up I go. My husband graciously offers to let me sleep but I have this unfortunate curse that when the children are up, I cannot sleep. Just hearing their voice makes me wide awake arggggg. We had fun going on an Easter Egg hunt and then stopped at Gigi's (my mother) to eat lunch and style her hair. She was completely oblivious to my son and was only focused on Kenzie. She was easily agitated and had a few melt downs so we headed out. Children are now asleep and I am finished