Carissa does a battle with Dementia- A dementia daughters diary

Mom Diagnosed age: 55 "Likely represents Alzheimer's"
-December 2007-

Dad is diagnosed with cancer and Grandma recently passed.
Mom told Dr. Lisa Pearce in 2007 that "When my mom died I felt like she took some of me with her, including my memories." She went on to mention that dad's diagnoses made it even worse.

Nuerology reports show Memory Complaints beginning in 2004. Minor complaints like difficulty forming memory for new events or conversations. She/ we associated her issues to be with severe depression. The Dr. also didn't feel the memory issues were caused by a structural brain issue but placed her on Aricept and Zoloft. [Dr. McLaren]

My Mom Cathy had back surgery around 1994 A disoriented disc. Fragments of her vertebrae were removed.
Mom has asthma.
Mom has shown a possible allergy to IBUPROFEN.
Mom has seemingly lost her ability TASTE & SMELL. Claims it started around 1994 after surgery. It declines each year. (she can still identify bitter, sweet, salty or sour)
Mom lost her mom in 2004 & husband in 2006

Family History:
*Father Gerald McGinnis died of Lung Cancer at age 75 (He dealt with CAD at 54)
*Mother Treva Hill-McGinnis died of what they think was CAD age 80 (UTI was present)
*Mother showed some signs of Dementia (caused by UTI)
*Sister Elaine McGinnis died in a Motor Vehicle Accident
*Middle daughter seizure disorder since 9 months of age.
History of Hodgkins was mentioned.
*Everyone else reported to have died from old age.
Possible ALLERGY TO IBUPROFEN discovered.

June 3, 2006- DAD DIES
I try to recall how my sister and I knew there was something different about our mother. I personally think the #DementiaDemon entrance was during my father's dramatic exit on June 3, 2006. When my father died of cancer, part of my mom's soul left with his. I remember the mentally zoned out, glazed over eyes conversations, but assumed it was all just grieving. I felt very ill and like a contractor had installed a switch internally that allowed me to turn on and off emotion. The majority of the time I decided it was much easier to leave the emotional switch off. I was a fresh college graduate chasing big dreams and my big sister encouraged me to keep on keeping on whereas that is what my parents would both want.

Counsel and family Dr. think mom is depressed. Mom DOES NOT think she is depressed.
She is prescribed Prosac and then Zoloft but insists neither help her and doesn't take them as prescribed. Mom insists that her sadness daily and loss in appetite are due to her losing her taste and smell.

Mom reported to her Dr. that she had been experiencing difficulties with her memory for around 8 years. We, as daughters only knew about 3 years.

Her loss of taste and smell had been brought up over the last 8 years which always concerned me and I still wonder if it could be related. Her Parietal Lobe seems to be having issues [MY OPINION] An appointment for tests was scheduled.

The Parietal lobe figures out the messages you receive from the five senses of sight, touch, smell, hearing and taste. This part of the brain tells you what is part of the body and what is part of the outside world.

January 17, 2007:  MRI: Rather normal.
Pansinusitis is when all of the sinuses in the head become infected or inflamed. Usually, a sinus infection, or sinusitis, affects only one or two sinus groups. Pansinusitis may feel like a severe sinus infection but often clears up over time without treatment.

MEDS: Folnase, calcium, vitamin D

July 25, 2007: Dr. Visit: Lisa Pearce FIRST DIAGNOSES OF POSSIBLE DEMENTIA
--Osteopenia is when your bones are weaker than normal but not so far gone that they break easily, which is the hallmark of osteoporosis.---

Mom and Lisa chatted about how the memory issues were becoming problematic at work. Mom is a librarian at a College. New learning is difficult. She reported feeling more confused and lost than normal. An example was forgetting about social commitments and appointments. Another was following road map directions. She was still doing her finances on her own with little to no issues.
The Dr. reported that mom showed diminished verbal comprehension & asked her to repeat a lot of stuff. Dr. Pearce decided to do some cognitive testing.

After these intense results came back and Advair was added as a medication for mom things got REAL. A neurologist appointment was scheduled for October.

AND, I bought mom a puppy (for companionship) then I continued my hop, skip and jumping life of chasing opportunities across the country and was barely ever in the hometown. Looking back, I feel I was the last to realize something had taken over my normal Mom. Or, the only one in denial. My mother and I were best friends. Mom would call daily and we traveled together often! Mother went on a job interview with me which ended up moving me to Memphis, TN. I remember her seemingly thrilled that she could drive from Missouri to Tennessee to visit me on occasional weekends. My mother's friends would encourage her to go to grief therapy after losing her husband, but she never successfully followed through. I saw and heard her depression grow in the year following my dad's loss. My mother started mentioning how she wished she could have just gone with him as opposed to being left alone to finish life on her own.

October 5, 2007- New Neurologist Dr. Joel Shenker
What type of dementia/ neurodegenerative disease does mom have?
Symptoms not likely for Frontotemporal dementia or Vascular. 

October 11,2007 BRAIN SCANS 
MRI: Showed no abnormalities in brain parenchyma.
PET scan. Possible decreased activity in the Parietal Cortices and Cingulate Gyrus through non diagnostic. Consistant with Alz.
THIS also would explain her loss of taste and smell.

The parietal lobe is at the back of the brain and is divided into two hemispheres. It functions in processing sensory information regarding the location of parts of the body as well as interpreting visual information and processing language and mathematics. The Parietal lobe figures out the messages you receive from the five senses of sight, touch, smell, hearing and taste. This part of the brain tells you what is part of the body and what is part of the outside world.

Gyrus is a fold or "bulge" in the brain. The cingulate gyrus is the curved fold covering the corpus callosum. A component of the limbic system, it is involved in processing emotions and behavior regulation. It also helps to regulate autonomic motor function.

December 7, 2007- She is taking extra vitamins like B-12 and vitamin D.
This is the closest thing to a diagnoses we have: "Likely represents Alzheimer's"

2008- RETIRES EARLY due to Memory Issues

June 9, 2008: Neurology Dr. Visit. At this time, although a PET scan had showed slightly abnormal the Dr. main concern was with depression. Mom was living on her own and didn't report any issues with memory at this appointment. My sister and I notice some oddities in her daily responses and ability to answer basic questions with confidence. Scheduled a follow up. [Dr. Joel Shenker]

It was during catch up calls with my oldest that caused sickness to take over my gut. I moved back to my hometown from Memphis, TN. I started Graduate school at William Woods University.

Feb 9, 2009: 
Neurology Dr. Visit. Mom reported she felt like the Zoloft and Aricept had been helping her memory issues and depression. We talked about whether we thought she needed Aricept or not whereas it could cause more harm than good. Her PET had showed slightly abnormal so she is going to stay on it. Scheduled her next visit in a year. [Dr. Joel Shenker]

2010- Six Years after Memory Issues became noticeable:

Feb 16, 2010: Neurology Dr. Visit.
We scheduled mom's First neurology visit in a year. I went with her on this one. The Dr. reported her as seemingly about the same mentally and still very depressed. Since her PET scan three years ago wasn't normal the Dr. had run some clinical tests but not found anything of major concern. Ruled depression and Aricept and Zoloft is what she takes. She weighed 145lbs. Dr. determined we will do another cognitive test in a year to watch for potential neurodegenerative disease. [Dr. Joel Shenker]

September 29, 2010:  Neurology Dr. Visit.
Mom called the Dr. about a sudden memory function decline she was experiencing September 28th. She was having problems focusing, balancing her check book, felt high frustration and increased depression. She was scheduled for an emergency visit. Mom showed up to the appointment alone and was later joined by Rona.
Rona didn't agree that these symptoms were sudden but mom had experienced some illness in the last three months and the mind had seemingly gotten worse during it all. [Sinus infection and C.Diff] She is on Aricept and Zoloft. Weight 125lbs. [Dr. Joel Shenker]

October 28, 2010: Neurology Dr. Visit. Minor complaints like difficulty forming memory for new events or conversations just like 2004. She/ we associated her issues to be with severe depression. The Dr. also didn't feel the memory issues were caused by a structural brain issue but kept her on Aricept and Zoloft. Weight 125lbs. [Dr. Joel Shenker]

Mom didn't have the E4 show in the test for Apo-E4.
E4 is an indication of Alz. Everyone has two copies of the APOE gene: people with E2/E2 have the lowest overall risk for Alzheimer's and those with E4/E4 have the highest risk. The other combinations of APOE—E2/E3, E2/E4, E3/E3 and E3/E4—fall in between. This means Alz doesn't seem to be the cause of her showing dementia symptoms although can't be completely ruled out.
Performing PS-1 and Tau/AB tests could be done to assist in the Alz research.

Mom lives at home alone. Rona helping a lot.

April 7, 2011: Neurologist Dr. Shenker determines that mom's memory issues stem from a psychiatric problem not a neurologic disease. Joyce attended this appointment with Mother and it seemed to get tense. Mom declined Dr. Shekner's advise to seek a Psychiatrist.

October 10, 2011: Repeated 2007 Cognitive Tests:

Mom got a DEXA scan June 2011. Showing Osteopenia of lumbar spine.
July 11th Mom diagnosed with breast cancer.
Mom got a Masectomy two days after my birthday this year. July 26, 2011.

August recovery from breast cancer. Mom stayed at Churchill Assisted Living to recover then moved back home. I graduate from Graduate School with my Master's in December and considered moving to LA or Nashville eventually to chase some dreams; however, I've decided to stick around Fulton for now.

August 17, 2011- New Cancer Dr. Visit. PET scan and MRI ordered to look into the severity of mom's dementia. They are concerned about prescribing her certain meds or chemo options since she has dementia. Also ordered an Onotype DX (gives the Score that determines whether you need chemotherapy.).

August 19, 2011- Dr. Visit. Reading records, Mom didn't report any past nose bleeds in paperwork but had some very scary ones while I was living at home on 1108 Sharon Drive which was my childhood home. We moved into my GrandMother's house around the time I went to college in 2002.

September 2011- Mom started Anastrozole (is used to treat breast cancer in women after menopause.) Mom declined Chemo. 

Dec 15, 2011- Dr. Visit. CBC Lab within normal limits.
My oldest sister Rona keeps mom's pills organized for her in her weekly pill box. 


October 10, 2012: Dr. Visit. Showing significant dementia.
Has been on *Anastrozole (breast cancer drug) for a year. Weight 139 and alert but very forgetful.
*Zoloft depression drugs increased recently to 200mg.
Other medications:
*Aricept 10mg (It can treat Alzheimer's disease.)
*Multi Vitamin
*Namenda 10mg (It can treat dementia associated with Alzheimer's disease.)
*Thiamine 100mg (Vitamin b1)
*Zyrtec (Allergies)
*Nasonex 1 spray ((mometasone) is a steroid. It prevents the release of substances in the body that cause inflammation.) Causes scary nose bleeds for mom. 
*Advair 1 puff (Asthma/ COPD)
*Levocetirizine (Allergies)

October 16, 2012:
Mom experiencing a lot of abdominal pain so a CT was ordered.

October 25, 2012: Mom got a letter from the state telling her she'd need to retake the driver's test if she wanted to keep driving.

Mom is still living at home alone. Myself, Rona or mom's best friend Joyce take turns to get mother where she needs to be now that she doesn't drive.

Mom was in a facility. Losing her license was tough but losing her freedom and independence was hard to bear. Not being able to have her dog was the worst of all. I relocated to Nashville. (Lives in Ashbury Heights )

In March we started considering selling mom's old house.   In July I took mom out of Ashbury Heights Assisted Living and with me to celebrate my birthday at the Lake of the Ozarks. The Lake has always been a favorite place of ours.

Around Mother's Day 2016 my sister mentioned moving mom to a newly built facility called Valley Park North. I was still taking mother out of the facility when I was in town. We went to Lake Ozark again around my birthday. Mother was still over the moon over her dog Koala and mine Jalisco.

Valley Park North was working out well until one bad day. Early Feb mother (who is confused with dementia) woke up in the dark one night looking for the restroom. She didn't make it to the restroom and soiled herself. She called for help and was found in a poo mess. This incident happened a second time and was treated as psychotic and the mother was asked to leave the facility. They placed mom in a psych ward while we figured out what to do. They also reported this on her files which will make it hard to find her a good home in the future. I had a heartbreaking phone call with mom while she was in the psych ward.

Mom moved into Columbia Healthcare. It is paid for by the state. The atmosphere was much different than her smaller, private facilities. By May 2017, mom was NOT doing well in her newest facility. It was a skilled nursing home and not the right fit for mother but no memory care would take her now that her files mentioned some aggression and a few embarrassing issues. The worst choice we've made so far but with what felt like no other options.

While under the care of Dr. Katherine Vanvoorn (at least March 2017- early Oct 2017) mom was on the following medications:

*Risperidone: Antipsychotic. It can treat schizophrenia, bipolar disorder, and irritability caused by autism.


Anxiolytic. It can treat anxiety.
*Divalproex: Anticonvulsant. It can treat seizures and bipolar disorder. It can also help prevent migraine headaches
*Donepezil (Aricept). Cognition-enhancing medication. It can treat Alzheimer's disease.
*Namenda memantine. Cognition-enhancing medication. It can treat dementia associated with Alzheimer's disease.
*Mirtazapine Antidepressant. It can treat depression.
*Risperidone Antipsychotic It can treat schizophrenia, bipolar disorder, and irritability caused by autism.

*Zyrtec for allergies
*Senna twice daily for constipation and or Docusate on top of that. 
*Ondansetron when she felt nausea due to all these meds. 

By September 28th, 2017 we found mom a new home! My sister and I moved her near me in Nashville to Vantage Point Village, Memory Care floor.

June 23, 2019- A guest of the facility ask mom "Is this your daughter?" and mother was very confused. I distracted the convo and we moved to our music walk up and down the hallway. The same guest commented "Your daughter Carissa is a beautiful girl," and mother spoke very kindly and responsive mentioning "Carissa, I haven't seen her in a long time," "She is a very sweet girl." Although heartbroken, I was flattered at the same moment. After our walk, I smelled a dirty diaper. I quickly showered mother, changed her, dried her hair and tucked her in like a sweet toddler. This was the 1st incident I have ever noticed where mom didn't make it to the restroom in time. I didn't get emotional tonight. I have my first therapy session tomorrow morning.

July 2019- Some days are better than others. Her mind is shockingly sharp somedays and makes me think she knows exactly what her situation is... while the next she seems extremely confused. Her hearing is very sensitive. She picks up every single noise around her and assumes it is directed at her so she often responds to conversations she isn't in or sounds several feet away. The sounds seem to cause her anxiety and spiral into frustration. I try to find a more private space with very few voices around to attempt any conversation. As long as I turn the music up enough to drown out all the other sounds she focuses super well on the music and has an awesome time singing and dancing around the floor. This is my favorite time with her! I have made a tradition of walking the hallway with mom to 1960's music and it has been a success. It can usually turn around any poor mood she may be stuck in.

August 2019- Mom has started to refuse showers. She gets into a physical struggle with me or the PA who attempts to help her shower. This was the 1st experience of physical freak out I have had with my mom. I stayed calm at the moment but left shaking, crying and heartbroken. I have tried a waterproof speaker, for some music fun, a loose swimsuit for less humility but the sheer thought of a shower seems to send her anxiety sky high. I pray for an answer, guidance or maybe an invention to make shower time easier for people like mom.

Sept 4th, 2019- It's been a hard few weeks. Mom's positive, kind and upbeat demeanor has changed some. My gut says it is the change in the facility atmosphere to blame, but suppose I do not know. The original facility & staff was beyond caring, always smiling and complimenting the patients when we chose this home for mom. Mom was always being greeted positively and hugs were always being given. Sadly, turn over has been huge and staffing an obvious problem. There are less positive vibes and smiles now. The few amazing employees left are so overworked they are too tired to be positive all the time. Not to mention, there are a few very verbally abusive patients on the floor. This situation makes me feel furious, almost too angry to visit. I don't want it to be this way. My main goal is to give mom the most positive and pleasant days possible whereas I have no idea what she is comprehending, feeling or when it may be her last breath. She hasn't even wanted to walk to our music lately. She has started saying "She used to like it there, but not anymore. No-one likes her there and she wants to go home to her mom." It is very hard to leave her. I pray several times a day for guidance, or financial prosperity so I can move mother into a more pleasant atmosphere OR better yet; build one for her and become the CEO of a perfect place for mom and people like her.

Dec 3, 2019- 
A letter I wrote in an update to an old friend of mom's:
Thank you. Mom's case is hard to understand. She has dementia which turns into Alz and memory failure in the end but starts with losing understanding for things- like how to operate everyday stuff, even use silverware, confused about Time/ days/ nights/ - changes communication factors so she slurs or can't put together sentences.

She began to lose her independence. That is how it started 10 years ago.
Then Her vision turned blurry and no eye dr could fix it. Her memory is still intact- her thoughts are just cut short so she knows she recognizes people, places and things then cries bc she can't follow through on the thoughts. The hardest part is that at times she seems to completely comprehend what has happened to her and gets very very depressed.
I have been researching anything and everything that might help. A well known, Dr. Bredesen, has some cool research and results I am looking into trying on mom.

She is currently on a finger food only diet because of the no silverware situation. It is hard to get her to eat anything healthy and good for the mind but thankfully she doesn't want sugar (soda and candy) like she used to. She has help dressing and showering but can still put on her own shoes. She can also still use the restroom herself BUT needs help finding it. She won't brush her teeth or let anyone else do it. Music is a major therapy for mom and is all she usually needs to turn a frown upside down. She easily walks over 7 miles a day up and down the facility hallway and is tiny now- weighs 120 or less. She and I walk together all the time and had practiced the wedding march- so I wanted to try the real deal with her by me on my wedding day.

I've tried to get her out of the facility some but over the last year, the success has declined. She gets very uncomfortable leaving (maybe bc she can't see super well? and it is scary?). Stairs are rough so we avoid those. She gets really agitated trying to bend and sit into a car seat. However, usually, once we get those things out of the way the rest of the adventure seems enjoyable.

Her sense of hearing seems to be intense. It may overwhelm her and cause anxiety. She hears and responds to every noise or conversation in the building. Unfortunately, there is a patient with very mean, negative and hurtful yelling outbursts that have changed mom's demeanor. Mom reacts as if she is being bullied, cries and asks if she is going to get in trouble a lot. Other patients living in mom's home react the same way to the scoldings. I have tried to get that patient relocated with no luck.

I feel she slipped into a deeper phase of dementia right before the wedding. Labor day weekend I noticed an increased sense of fear and agitation. (Common part of dementia also). She reaches for my hand often now, as though she is scared and needs consoling. She did not do well at the wedding and didn't seem to recall any of it afterward. However, she seems to recognize me, my name and Robbie's name in some way. She also seems to recognize a lot of the other names we bring up yet doesn't react the same in person.

I read her greeting cards from friends and family and she tends to nod and respond with " o, how sweet." I'll show her the church directory and see how she reacts. I believe she would recall people better if she could see clearly.

I am grateful mom still opens her arms for a hug and tends to light up when she gets sight of me. She tried to "vent" and I listen, console and agree however she is very hard to understand. I tuck her in as often as possible and get an "I love you too," out of her every now and then.

December 15, 2019-
Yesterday, Mom was very talkative although not much of what she was venting was understandable. After reading the book "The End of Alz," I am eager (but overwhelmed) about experimenting with the mind-diet. I am currently trying to organize my plan. Mom is only able to eat finger foods and her meals are provided by the home she lives in. We are lucky to get her to eat at all most days but the stuff she is eating is not healthy, to say the least. She mainly eats hamburgers and grilled cheese. I am trying to learn how to make healthy granola bars, cookies and such that could be available for snacking. Replacing the home's sweet tea with water or a daily greens smoothie, as well as other tricky recipes that I could provide for mom's daily meals to fuel her mind properly.

During this visit, my mother and her roommate's daughter chatted some and the topic of having daughters and mom did, in fact, seem to recall that "Carissa was her youngest," which was great to hear ...but also heartbreaking considering I was sitting right by her and she obviously didn't comprehend that I was the Carissa she was chatting about it.

My mind remains distracted until I drive to mom's home and check on her in person now. I find it hard to rest unless I personally tucked mother into her bed at night. I've also noticed that some nights when I can't sleep; the nurses will mention on a next visit about how my mother spent the same sleepless night pacing the hallways. I feel an oddly weird soul connection with her. I have to do something. It is not physically or emotionally possible for me to just "let it be."

PS: Thank God for Julie and her hubby Ray (who dance with mom a lot). Julie is the daughter of mom's roommate.

Jan 1 and 2, 2020-
Walking the hallway is the only pass-time mother has. She communicates she is bored. Taking her outside has been complicated. She can't see well so the ground has to be flat, she hates to be too cold or too hot, she seems rather scared. Jan 1st I was video chatting New year's wishes with a friend on a phone app when mom muttered: "I just want to die."
This is not uncommon and has been going on since my dad passed in 2006; however, the ill wishes upon herself have been less over the last few years. She also has had a cough for a while that she can't seem to kick.

Jan 2nd when I approached her she seemed timid and told me she feels like someone is gonna get her. She has mentioned being "scared," over the last month. She also said, "I can't do this." I turned on Spotify 1960's playlist for music therapy and kicked the fear out of her mind for a while.

Some sentences were clear and correct today. Her communication on most days is very rocky. It's 2020 and I am more curious than ever to understand more about what type of dementia she has and what phase she is in. I also still have a major interest in Dr. Bredesen's RECODE protocol although figuring out how to get started has been very overwhelming. It also appears to be rather pricey. Part of the RECODE concept includes a mind healthy diet plan which I would like to start prepping for mom. Her rent includes her meals but those options provided aren't mind-healthy; not to mention mother can only eat finger foods.

Helpful Website:
Dr. Bredesen RECODE:

After researching on dementia care central website I am guessing mother may be in stage 6 of 7 noted dementia stages. I do not feel clear about what type of dementia she is suffering from but Lewy Bodies is the closest so far. I am also going to re-evaluate her medications again.
I feel torn. If mother is truly suffering from the mid-late stage of dementia, which can not be cured but acclaimed to have options to reverse symptoms or slow down progression- is taking reversal or slowing steps and adding years on mom's quite horrific current life good or bad?
I feel desperate for a miracle. I feel desperate to have my mom back for at least 10 more years; heck even one more day. I pray daily about guidance for myself and for her to be at peace. For God to eliminate her sadness and fear no matter what that means.

Jan 3, 2020: Mother was walking the hallways when I arrived. It was dinner time so I encouraged her to sit and eat. I brought her some Mind-Healthy finger foods to add to her provided meal. The verbally aggressive resident was awake and vibrant with rants which may have been one reason mother was very anxious and avoiding dinner. Fortunately, the problematic resident left the dining room space and wandered the hallways looking for an unlocked room to lay down in.
Unfortunately, I believe the unlocked room may have been mothers. When we went into mom's room preparing for bed, the bed had been urinated in.
Mother may have accidents from time to time, but nothing that I have been made aware of. I do know locating the restroom is hard for her. I asked the staff on duty if anyone had seen the bed wet earlier in the day, changed or noticed mother being wet. Mother had reportedly not even been in her room since her wake up call. If she and her bed were wet at wake up call, the staff would have already changed the sheets (we hope).
So the guess is a roaming resident found mom's room unlocked, laid down for a while, wet the bed, woke up and left without anyone noticing. The staff stripped the bed and I laid down whatever bedding I could find mix-matched in the closet so mother didn't have to wait a few more hours to lie down since all sets of sheets were currently in the laundry.
Our evening was blessed hugely by mom's roommate. Dot prayed with mom and preached a positive message of peace and love. It was fantastic.
Then we all tucked in as usual and rested for the night.

Jan 5, 2020:
Somedays I am emotional from the moment I wake up. Once the flood gates open, it is hard to get them closed. Sang with the church choir, listened to the gospel but it didn't settle my anxious soul. I was quick to start a fight with Robbie and forgot my boiling eggs which ended up in a small kitchen explosion and mental break down.
The only place I wanted to go was moms. I am still deeply attached to mom. The attachment scares me quite honestly. However, I do not like to visit mom if I am feeling weak or tearful. She is already depressed over her fate and my sadness just inflates hers. Today I went anyway. Mom was already in tears upon my arrival. I don't know if we both happened to be in a similar mood or if we can just sense one another from afar. We both just sit, held hands, cried and listened to the preacher sing and play acoustic. When mom noticed I really broke the flood gates she immediately rubbed my arm and started trying to support and cheer me up. It was a magical moment. She decided to dance and sing to make me laugh which was a success. Mom is a bright light for everyone there. She is suffering and being drug into a dark, depressing and scary place she doesn't understand yet she still offers love to every single person around her. Even Lisa, the mean one who bullies mom daily with verbal abuse. Mom is and raised me to be a Child of God. Together we can get through this.
As the preacher ended his music and sermon he came over to chat with us. He prayed a prayer of healing over mom. My tears finally dried up for the day and I got to tuck mom in, always leaving my last words "I love you."

Jan 7, 2020:I left town for a few days to go back to the hometown of Fulton, MO for a baby's funeral. Needless to say, I was a ticking time bomb of emotions when I arrived back in town tonight to visit mom. She was in the hallway in a posed position with her hand on one hip talking to someone, or something, that was not there to my eye.
I Googled hallucinations and dementia which is rather common. Mother's are clearly becoming more and more noticeable and frequent. She seems to have both audio and visual hallucinations now. This is the first time I noticed them keeping her awake into the wee hours of the night. This experience made me want to re-evaluate her medications. Maybe there are some changes we can make to help.

Jan 9, 2020: Mother is still having conversations with people and voices that appear to be hallucinations. She seemed to have an overall decent day. Her medications and diet will be re-evaluated.

Jan 12, 2020:
Mom's Medication List:
*Daily Vitamin (morning)
*Geri-kot Tablet (night) for constipation
*Clonazepam (half 8am and half at noon) Sedative/ It can treat seizures, panic disorder, and anxiety.
*Quetiapine fumarate (morning and night) Antipsychotic\It can treat schizophrenia, bipolar disorder, and depression.


Anxiolytic. It can treat anxiety. (three times a day)

*Donepezil (Aricept). Cognition-enhancing medication. It can treat Alzheimer's disease. (bedtime)
*CBD oil

Feb 24th, 2020: I got a call around 6pm letting me know Mother had fallen and was in rough shape. The PRN on duty had called an ambulance. A similar ordeal took place in April of last year. I'll always recall due to the fact it was the night I got engaged. It was an intense drive with no answers to the hospital. I was especially on edge due to getting asked "Is she D-N-R?"  (Do Not Resuscitate).
Once I arrived they wouldn't let me see her while she was in exam and CT which required me to sit and envision how confused and scared she must be. The initial witness said in both incidents it looked liked mother seized and lost control of her bladder as she fell. In both incidents no proof of seizure could be found on CT. Both incidents were considered Vasovagal syncopes possibly caused by "Severe dehydration." 
Mother hated the IV and was panicked on and off throughout the overnight stay. Mother was very passionate about her IV hurting in the crease of her elbow and when no one would help adjust or relocate she consistently tried to rip it out herself. I drained my phone streaming Elvis tunes but it did seem to soothe her some however, it was short lived. I was thrilled to see her facial reaction to Robbie being around. He was a fantastic supporter of both her and I. Eventually, we transported mom from ER to Outpatient and I finally got them to take out the IV she insisted hurt and relocate it. Once this process was over, she finally slept. We returned to Vantage Pointe the next morning around 11am. 

Feb 25th, 2020: Seemingly disappointed to be alive and back in her space to repeat misery. She skipped lunch and just wanted to sleep. I felt the same. 

March 1, 2020:
Last week was a tough week for mother and for me. Emotionally, I am broken. Physically, I am tired. I am also feeling extra anger and frustration over the fact that all this is even taking place. It is a very helpless, confused and hopeless feeling.
Mother is still refusing to eat and drink. I don't feel like it either so do I blame her? I did get her to drink some Pedialyte. 
She is walking around but obviously getting too weak to walk. She is still only 67. I am buying her a rolling walker to see if she will use it or if it will help her continue to walk the hallways.

I am going to try to get another opinion on mom's situation.
Are we handling it and medicating her correctly or should we try something else. Do we even have the correct diagnoses? Is there anyway to learn more about the cause or learn more about what happened to mom?
Some people have suggested things like ElectroShock Therapy or Hypnosis. I have been hesitant.

Wow! A tornado hit Nashville right after my last visit. Power outages, homes destroyed.
I will not be returning to my office in downtown Nashville. We will be working from home.

Right after the tornado, we learned of Covid-19.
A historic pandemic and shut-down has begun. I have been told my only option to see mother will be Facetime call attempts which is difficult for mother to comprehend. I don't have words or I'd blog about how tough this situation is on both of us. 

Still in shut-down/ quarantine. 
I have attempted Facetime with Mother. It is not going well. She is becoming more depressed but the staff reports her as overall- doing well. 

Still in shut-down/ quarantine. 

I have attempted Facetime with Mother. It is not going well. She is becoming more depressed but the staff reports her as overall- doing well. I am severely depressed myself. I am adding a new puppy to my life to see if that adds some Joy. Attempting self-care. 

I can NOT stop thinking about the fact mom may not actually have dementia. I have spoken with Yasmeen Neal Ph.D. (Nashville Neuro, PLLC) who agrees mother's timeline of symptoms don't fit together. Due to our growing curiousity on whether or not mother is dealing with a psychiatric issue or imbalance of some sort, Yasmeen is referring us to Dr. Newhouse is the  Director of the Center for Cognitive Medicine in the Department of Psychiatry at Vanderbilt University Medical Center.

I also still feel a gut instinct to follow Dr. Breseden's lead and get mother's labs done for vitamin and hormone levels if not able to try the entire protocol. Today [ May 17, 2020] I am still unable to see mother but I watched an interview with Dr. Jacob Teitelbaum and contacted his office. I am seeking a metabolic/ holistic Dr. in my area who can help me try to fix my Mother. 

MAY 18th, 2020!!!!! 
I got a call today announcing that I get to visit mother Thursday!
I am so excited and relieved!
Our visits are only 30 minutes but I am thrilled. 
I will be taking her a special drink that contains pedialyte, high vitamin D, Coconut and MCT oil! 

May 21st, 2020:
I was able to mask up and visit Mom today for 30 Minutes! 
I was shattered upon entry whereas mom didn't flinch at the sight of me like she tends to do. She seemed angry/ frustrated. She did not seem to recognize me or my name. I don't give up easily so I turned on some music, gave her some space but followed her around as she walked. I always remind her she is awesome, my favorite person and best friend. That reminder tends to make her crack a smile and even say "well, thank you." I took her my special mind drink I had created on May 18th and she drank over half! Eventually, she eased up and enjoyed some of the songs as we walked together. It was very difficult for me to leave her, per usual. I picked up her mail on the way out and cried out of overwhelm. It was a huge stack of medical bills from her February hospital visit. 

May 23-25th: I felt like I was breaking down mentally and emotionally so I grabbed a bag and hit the highway to Florida alone for the weekend to reset. Attempting self-care. 

June 1, 2020- My 2nd visit post-Covid shut-down. This visit was much better than the last. Mother's face lit up and she greeted me with a smile. She was bored and communicated that to me. I suggested we walk to music and she was all for it. After walking to a few songs, I offered her my special mind drink and she drank the whole thing. She said it was good. I noticed she walked into the activity room and has gotten into a routine of sitting in a specific chair along the wall. The chair had been moved and I could see her confusion as she looked for the chair. I moved one into space and she immediately sat in it for a rest. The activity room was hot and she communicated that it was too hot for her to sit in and then she wanted to lay down and take a nap. After a 15 minute nap, she was back up and asked to use the restroom. She got slightly confused about having two layers (pants and underwear) but used the restroom well on her own still. She was very talkative at this point. Some made sense and some did not. The big heart squeezer was that she verbalized "I love you," and also said, "You're a good kid." 
(enter tears here)

June 15- Neuro St. Thomas Brett Parker- Virtual Dr Visit. Mom said " I love you too!"
Dr. Brett Parker, MD, is a board certified neurologist. He provides general neurology with a focus on neuromuscular medicine to adults. Dr. Parker has a special clinical interest in neuromuscular medicine. He aims to provide his patients with holistic and compassionate care that treats not only the illness but the person.

June 22, 2020-
Just returned from Fulton. Niece Jessica's high school graduation. Long talk with mom. 

July 13th, 2020- Psych Vandy virtual with Paul Newhouse. 
WHO? Dr. Newhouse is the  Director of the Center for Cognitive Medicine in the Department of Psychiatry at Vanderbilt University Medical Center. He is also Jim Turner Professor of Cognitive Disorders at Vanderbilt University School of Medicine and Professor of Psychiatry, Pharmacology, and Medicine.
"Mutation testing would require a referral through our genetic testing service. While this can certainly be arranged, I do not recall that there was a strong family history of dementia which would suggest one of the familial Alzheimer's disease genes was present, although perhaps I was incorrect here. I do recall that the testing for the common risk gene, APOe genetic testing, was uninformative (low risk). I believe that we discussed further scans or spinal tap as being unlikely to be helpful to her at this late stage of illness as it would not change her care or therapeutic management.
  • One thing that might be informative is to have an autopsy done of her brain when she passes away. This will help establish the underlying disease(s).


Popular Posts