Posted by: Joey Berry on 08-02-2015

Wanda Berry is a long-term survivor of Dementia. She is approximately 15 years post-diagnosis. She was diagnosed with early onset Dementia around the year 2000.

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Posted by: Joey Berry on 08-02-2015

She experienced a gradual decline with symptoms and medications making her unable to drive safely around 2005-2006.

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Posted by: Joey Berry on 08-02-2015

A doctor in Horry County S.C. pronounced her symptoms "fairly advanced" shortly after my wife and I began as primary caregivers in 2008.


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Posted by: Joey Berry on 08-02-2015

Sometime between 2008 and 2010 my mother lost the ability to write/sign her name.

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Posted by: Joey Berry on 08-02-2015

By 2010, my mother had tried what appeared to be every conceivable combination of Dementia medications; after that point, the side effects of the medications seemed to outweigh the benefits so she largely discontinued medications specific to Dementia.

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Posted by: Joey Berry on 08-14-2015

My mother's situation was complicated by the fact that my father was her primary caregiver between 2001 through early 2008; even though they were legally divorced around October 1999.

*They lived in S.C. and it is unclear whether they remarried, became common-law married, or remain divorced...

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Posted by: Joey Berry on 04-28-2016

Happy 65th Birthday!!!
[to my mother, Wanda Berry]

You should be a national hero. I can't imagine a better mother or a tougher woman.

We know that you won't be with us more than a few more days but know that we will always love you!

Love,

Joey (and Michelle and everybody else)

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Posted by: Joey Berry on 05-03-2016

On 5-2-2016, we traveled to Conway with my mother (to defend an eviction attempt by our Landlord over a $10/month dispute).

It was very stressful preparing my mother for travel but she did get to experience a beautiful day; she felt a light breeze for the first time in months and she got to feel some direct sunlight (but at one point I leaned over her to provide shade for her face because the sun was too bright as we approached the courthouse).

My mother showed limited awareness several times and I hope she was able to enjoy parts of her final outing.

*Yesterday [after the Hospice nurse recommended calling in family] my Aunt kindly said they could have watched her [which was very nice] but they live 45 minutes away and the reality is that no other babysitter/caregiver could have been prepared to watch her for 2-6 hours; we have managed my mother's medications (including a collection of OTC medicines and vitamins) carefully for years and most medicines are administered "as needed" with a potential for my mother to slip into a horrific state if a delicate balance of scheduled medicine plus anticipatory and reactive medicines isn't maintained. We have managed to keep my mother resting peacefully over 80% of the time despite the Hospice nurse warning us weeks ago that she was likely entering a phase called "terminal restlessness" (where no amount of medicine would keep her from constant and increasing levels of discomfort). I couldn't imagine exposing my mother [or volunteer caregivers (especially family)] to a situation where her health conditions snowballed into the extreme distress that is typical in terminal restlessness.

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Posted by: Joey Berry on 05-03-2016

At noon on May 3rd, 2016, my mother passed away peacefully.

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Posted by: Joey Berry on 08-03-2015

The good:


This video is likely from late 2010 to early 2011. My mother had just finished a shower - she was absolutely not going to cooperate in getting dressed further or take one more step away from the tub - she just wanted to sing so I backed off and grabbed a camera.


5-18-2015 - My mother was in good spirits while recovering from a severe fall.

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Posted by: Joey Berry on 08-03-2015

The bad:


5-16-15 - early morning (around 5:30AM) - My mother had a bad fall after a morning bathroom visit.


5-5-15 - around midnight - My mother was restless and inconsolable.

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Posted by: Joey Berry on 08-03-2015

The ugly:


7-1-15 - My mother was screaming... Still about two hours before pain and sedation medications typically take full effect.


around 4-27-15 - My mother was belligerent and inconsolable.

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Posted by: Joey Berry on 08-02-2015

My mother entered the Hospice program in mid-April of 2015.

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Posted by: Joey Berry on 08-02-2015

Late in the night of April 7th to early morning April 8th, she had two seizures; one at the house and one in the ambulance.

I initially thought she was having a heart attack but no conclusive determination was made.

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Posted by: Joey Berry on 08-02-2015

To the best of our understanding the seizures could have been caused by two bleeds (subdural hematoma) in her brain, a small heart attack, a stroke, a reaction to a combination of medications, or simply an effect of brain degeneration from the Dementia.

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Posted by: Joey Berry on 08-02-2015

The most likely causes of the seizures were listed as the brain bleeds or the medication interactions.

The brain bleeds were surprising since she hadn't hit her head but the doctors explained that bleeds are common in patients with severe Dementia because brain atrophy shrinks the brain and there is strain on the blood vessels.

The last medications that she had taken were 100mg of Seroquel and 50mg of Tramadol (around 4:15PM); my mother generally took medications "as needed" rather than on a routine. According to our notes, she started screaming around 11:00AM and the doses of the sedative (Seroquel) and the pain killer (Tramadol) were near the high end of her normal range.

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Posted by: Joey Berry on 08-02-2015

Following a little over one week of hospitalization, she was accidentally discharged to a facility (in another town) for rehabilitation without my knowledge or approval.

I did not find out she had been transferred until the following day; my wife and I picked her up later that afternoon but the staff introduced us to the Hospice program and we agreed to try in-home Hospice.

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Posted by: Joey Berry on 08-02-2015

We found the in-home Hospice program to be very helpful.

We have an in-home nurse visit once per week. The nurse checks vitals and reviews any new conditions/symptoms. She calls in most routine prescriptions (and has the doctor available for consultations). An on-call nurse is also available 24 hours per day in case of emergency.

We found the access to a nurse to be invaluable. Simply knowing someone is available is an emotional comfort and it lifts a caregiver burden. The medical benefits to my mother were also immediate. We no longer had to attempt to survive and make do until the next scheduled doctor's appointment (every 3 months); or until an emergency room visit became unavoidable.

Previously, we had to attempt to figure out any issues my mother was experiencing and have a list ready for the family doctor. Under Hospice, we could ask the nurse face-to-face, call with questions during the week (and if one of our questions was concerning we would get an in-home nurse visit), or call 24 hours for an emergency.

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Posted by: Joey Berry on 08-06-2015

My mother had a severe fall early in the morning of May 16th, 2015.

She feel straight back into the bathroom door jamb from about five feet away (hitting her head and knocking herself out).

We were told later that many older people who fall, fall straight back...

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Posted by: Joey Berry on 08-28-2015

The on-call Hospice nurse came out and examined my mother. She didn't find any signs of severe damage and we agreed to continue care in home rather than temporarily exiting the Hospice Program to have her admitted to a local hospital.

Unfortunately, her baseline deteriorated fairly rapidly during the following week until we felt a hospital admission was needed.

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Posted by: Joey Berry on 08-06-2015

My mother had a severe sudden downturn in July of 2015. Between 2008 and 2015 there were at least three instances where my mother's health was short-term impaired and I believed that she had died. Once while I held her, I thought she took her last breath.

During July of 2015 there were approximately six times that I thought that she had passed.

There were also many days when I would have estimated her life span in hours or days.

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Posted by: Joey Berry on 08-06-2015

Starting in early August [of 2015], my mother began making remarkable progress in a physical recovery. She began to eat semi-solid food and drink without aspirating. She became much more alert and formed some words. The level of alertness and speech varied from hour to hour but remained consistently above the unresponsiveness from the previous month.


8-5-2015 - My mother was more active and alert.


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Posted by: Joey Berry on 08-07-2015

The initial decline began fairly suddenly but not sharply:

Between the afternoon July 11th and July 12th, 2015, my mother just started to shut down. She seemed to lose the will to live (and her responsiveness, alertness, and physical activity leaked away like air from a balloon)...

There did not appear to be any direct cause other than long term deterioration from the Dementia.

On Friday she had been able to stand on her own and eat finger foods. By Sunday, she was largely immobile and non-responsive; almost comatose. She would not take [hardly] any food or drink; we were able to trigger reflex swallowing to get between .25-1.0 milliliter of liquid/medicine down her at a time (but she would still aspirate some)...

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Posted by: Joey Berry on 08-12-2015

Early August [of 2015] witnessed a dramatic physical recovery.

-Some minor speech.

-Some free standing (5-15 seconds).

-Some minor chewing of semi-solid foods.

Compared to the non-responsiveness, severe aspiration, and near death of July, the difference is little short of miraculous.

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Posted by: Joey Berry on 08-13-2015

It is difficult to pinpoint how/why my mother shifted from severe decline to short-term physical recovery.

Throughout July of 2015 my mother's state was extremely fragile and worrisome. She showed practically no will to live. There appeared almost no hope of a return to her old baseline. Our primary concern was to prevent her suffering.

We never stopped trying to get her to eat/drink and by the later part of July she seemed to develop some will to live; she tried to drink even though she still had difficulty and aspirated some [which was a big change from the complete non-responsiveness of early July].

*note- "tried to drink" indicates that the .1-1.0 mL dropper we used to get fluids into her mouth was not ignored or rejected; occasionally she even opened her mouth in seeming cooperation.

We had been increasing the "as needed" pain medicines to keep her comfortable but we backed off on medications to keep the sedation effects from interfering with any possible recovery; trying to maintain a balance between her comfort and her will to recover.

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Posted by: Joey Berry on 08-14-2015

On 8-14-2015 (around 4:45AM), a short seizure interrupted my mother's short-term recovery.

The seizure was much less severe than the two seizures from early April of this year...

My mother appeared to have largely recovered from the seizure by lunchtime (within about 6 hours).

*note- the only medicine that she had received prior to the latest seizure was Tramadol (around 11:45PM of the previous night). Since Tramadol was loosely linked with both of her seizure events it is being added to her list of "allergies".

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Posted by: Joey Berry on 08-18-2015

My mother recovered quickly from the setback (i.e. seizure) of 8-14-15.



8-17-15 - My mother was fairly alert and active following the seizure of 8-14-15.

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Posted by: Joey Berry on 08-20-2015

As of mid-August 2015, my mother had stabilized. She was not gaining rapidly or losing ground...

She was smiling more and attempting some communication. Her eating and drinking was minimal (with only non-chewed semi-solid foods); her aspiration of food and drink also minimized/stabilized.

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Posted by: Joey Berry on 08-21-2015

On 8-21-2015, my mother consistently chewed solid food for the first time in a month and a half; she ate half a banana (cut into approximately 1/4" slices).

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Posted by: Joey Berry on 08-21-2015

The recovery aspect of my mother's case appears unique. There does not seem to be a solid medical/health reason for her decline or recovery other that fluctuations related to Dementia.

Aside from severe Dementia, my mother's physical health was very good prior to the severe decline in July; it seems like her health was [just barely] good enough for her body to recover somewhat after the shutdown in July (which we assume was caused by something in her brain because of the Dementia).

*even though my mother is making an amazing short-term physical recovery, it is much clearer now that she is likely to suffer a rapid deterioration at any time (with or without an obvious cause).

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Posted by: Joey Berry on 08-25-2015

By 8-23-15 my mother had entered what I would call a recovery from the critical downturn. She was eating solid foods again and much more responsive. She was beginning to have more regular bowel movements (with aid from laxatives, et cetera)...

My mother still has late-stage Dementia which will eventually be terminal but she has returned to a more stable baseline:


8-23-15 - My mother eating watermelon.




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Posted by: Joey Berry on 08-25-2015

My mother is currently stable.

I will update this section if there is another downturn (unless it is an extremely rapid downturn and my mother passes suddenly).

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Posted by: Joey Berry on 08-31-2015

My mother remains stable.

She is eating more solid foods and communicating; she is also walking with assistance.

The primary negative is that she seems to be struggling with some sort of allergy; she has a rash that has almost turned into hives a couple of times.



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Posted by: Joey Berry on 09-06-2015

On 9-5-2015, my mother sipped liquid through a straw for the first time in several months.

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Posted by: Joey Berry on 01-09-2016

Over the past several months my mother's condition has deteriorated relatively slowly with several seizure related swings which were more severe in terms of decline and recovery. She appears to be at the threshold of completely losing the ability to communicate.

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Posted by: Joey Berry on 03-04-2016

On 3-3-16, my mother had a nice visit with family. She was fairly alert and seemed aware.

She has been sleeping much more than her "norm" for the past several days and earlier a couple of new bed sores had caused my wife to freak out a little (as there appeared to be significant blood in the diaper).

My mother's eating has varied dramatically with some aspiration of light liquids to occasional ability to handle semi-solid foods...

*Ironically, the Hospice nurse informed us that their program is stopping deliveries of Ensure for all patients without a primary diagnosis of "failure to thrive" just as nutrition is becoming a critical factor for my mother ("because they are not required to [provide nutrition when it becomes an issue unless it was always the main issue]"); we had largely refused routine deliveries of Ensure and other Hospice benefits when they weren't necessary (rather than stockpiling as some patients do). The program has deteriorated greatly from when my mother first entered it with substantial and blatant cutbacks on incontinence supplies and now nutrition assistance (with express notice that costs are a primary concern and patients are secondary). I would use their example as a model of how not to change a critical care program such as Hospice...

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Posted by: Joey Berry on 03-07-2016

On 3-6-16, I made email contact with a funeral home near my mother's family home to begin pre-arrangements.

*I had previously made contact with a funeral home local to Myrtle Beach during my mother's last severe downturn; I was considering cremation but some family members strongly preferred burial (at the same cemetery where much of her family is buried).

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Posted by: Joey Berry on 03-13-2016

My mother and I are both recovering from a week-long cold/flu. I'm still having trouble clearing out congestion so I can only imagine how difficult things are for her.

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Posted by: Joey Berry on 03-14-2016

On 3-14-16, we received a demand for payment of a "past due" balance of $50 from the new apartment manager. This was slightly confusing as we promptly pay rent based on the rate agreed with the old apartment manager.

It was partially not a surprise because I had recently asked for a rent receipt so I could prove rent for my mother's SNAP renewal and the Resident Ledger showed lots of adjustments and irregularities (and it did not appear to have ever been adjusted to properly account for our agreed rent amount).

To clear up the issue, I went by the Leasing Office to let the manager know that we pay our rent in full each month and there is no deficiency; I made it clear I had no intention of paying extra.

She indicated that I would pay an additional $10 per month (and $50 in back rent); I said she would have to evict us to get any extra and she said "start packing".

My wife went by the office a short time later to get another copy of the Resident Ledger and the manager indicated that I am no longer allowed in the Leasing Office.

In short, the new manager appears willing to evict a 64 year old Hospice patient (and her caregivers) over $50 which is not owed AND she refuses to engage in further discussions. My wife says that she has been extremely stressed all day with a clear effect on my mother's day-to-day care.

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Posted by: Joey Berry on 03-17-2016

On 3-16-16 at approximately 9:30PM, my mother appeared to have a fairly intense absence seizure. She went completely limp and vacant for about 30-60 seconds. We gave her liquid Ativan almost immediately (per Hospice nurse recommendations) & increased her oxygen to maximum (for about 20 minutes).

Unlike previous seizure events, she did not hyperventilate or void her bladder/bowels. She did turn extremely pale and her breathing became undetectable for a while.

We eventually got her back into her bed and she swiftly went to sleep.

*This was well past the tenth time that I briefly thought she had passed in my arms.

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Posted by: Joey Berry on 03-27-2016

My mother has had a pretty exceptional week. She is eating and drinking much better with limited signs of awareness.

She is also being much more vocal with almost incessant moaning/humming at times (with an occasional expletive)...

*While I had severe doubts at the beginning of last month that she would make it until the end of this month, her physical health has rallied to the point where I now think she may live to see her 65th birthday (on April 28th).

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Posted by: Joey Berry on 03-27-2016

Our landlord continues to demand an unjustified/unsupported increase in rent (with seven months remaining on the last renewed contract).

They are now offering to conditionally waive the previously demanded retroactive increase (with pressure for me to effectively concede current non-resident status which is false & could be used as a lever to bully my mother, my wife, and myself).

Obviously, I will guard the rights of my mother, my wife, and myself (and insist on the landlord fulfilling the previously ratified contract without any conditional concessions).

Unfortunately being reminded of my mother's health issues and the previous manager's agreements (plus the burden on the landlord to prove rental rates) has had no effect on the current manager or the Corporate owners (as both were contacted). The lack of compassion or even basic humanity is astounding. At least it is now clear that the initial bullying attempts were not accidental or outside of routine practice on all tenants (which severely inflames my desire to challenge this injustice).

*I will likely post any additional updates about the rental/eviction concerns in the Legal Issues Section.

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Posted by: Joey Berry on 04-03-2016

I posted an update on the Landlord's bullying and eviction tactics under Financial Issues. I plan to switch to posting under Legal Issues once some sort of legal action is initiated by us or by the apartment management.

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Posted by: Joey Berry on 04-03-2016

Last week we were able to confirm a UTI and obtain a prescription (with Diflucan to follow as a preventative for probable yeast infections caused by the antibiotics). My mother is currently on day 6 of Bactrim.

She continues to show much greater physical strength, awareness, and appetite than a few weeks ago.

*I am now fairly confident that my mother will live to see her 65th birthday unless there is a dramatic event (like a severe seizure or stroke).

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Posted by: Joey Berry on 04-04-2016

On 4-4-16 around 2:45PM, my mother had a fairly substantial seizure with the more typical jerking and labored breathing (in contrast to the more recent absence seizures).

*We gave her .5mL Ativan and an Aspirin consistent with previous medical advice.

**My mother had a splotchy rash over her chest that we first noticed during the seizure.

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Posted by: Joey Berry on 04-08-2016

My mother has been substantially more alert and interactive over the last few days. She even seemed to try to kiss me as I kissed her on the head earlier.

Right now she is somewhat distressed and restless but we hope it is due to mainly to the laxative we gave her earlier.

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Posted by: Joey Berry on 04-14-2016

On Tuesday (4-12-16), the Hospice nurse visited with my mother and advised that she is likely entering a phase called terminal restlessness.

On Wednesday (4-13-16), the Hospice program attempted to start an end-of-life comfort phase with more/longer nursing visits, social worker visits, etc. We didn't know about the plan until the nurse surprised us with a visit and fortunately we had my mother in a fairly comforted state (which is supposed to be difficult to impossible with full terminal restlessness). After talking with the nurse, it looks like we are going to delay the comfort phase until at least next week.


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Posted by: Joey Berry on 04-17-2016

Yesterday I picked up some groceries at the local supermarket. I noticed that the milk expires on May 4th and the thought that the milk will likely outlast my mother struck me fairly strongly.

Right now my mother is resting peacefully but it looks like she is very close to what the nurse called terminal restlessness and I expect her to deteriorate rapidly very soon.

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Posted by: Joey Berry on 04-21-2016

My mother's recent butterfly shaped bed sore (likely an early stage Kennedy Ulcer) is actually stable to improving. If it doesn't worsen substantially, the Hospice nurse may revoke the intense Comfort Care Program for now; the "terminal restlessness" has been under much better control lately but my mother's food and liquid intake has been very limited so I expect her to decline rapidly soon unless there is a dramatic change.

*Additionally, my mother has rapidly changed to a near seizure state several times lately and a sudden seizure/stroke (or heart failure) wouldn't be completely unexpected.

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Posted by: Joey Berry on 05-02-2016

Shortly after we returned from Conway, the Hospice nurse stopped by the apartment. She almost immediately reactivated the "Comfort" program and she indicated that my mother likely has less than 24 hours...

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Posted by: Joey Berry on 08-06-2015

My wife and I have tracked medications, diet, and health/behavior changes for a while. We will try to provide some of that information ASAP.

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Posted by: Joey Berry on 09-03-2015

Tips:

-One of the hardest lessons we learned as Dementia caregivers was that it is impossible to make circumstances fit with our normal impulses and routines; we had to re-adjust all of our habits to best fit with my mother's current condition to make life easier on us (and better for her).

-Health problems complicate the mental issues with Dementia; we struggled for the first 6 months to 1 year until we developed a procedure to look for illness, infections, or side effects whenever there was a substantial change in behavior; most of the time the primary problem turned out to be a sinus, UTI, or yeast infection (or a side effect of a new medication).

*We will try to share additional tips under "Reply" below.

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Posted by: Joey Berry on 08-08-2015

My mother and father were symbolic of the American Dream. My mother grew up on a small farm. She met my father when they both worked at a local factory. They married and had two children. My father joined the Air Force. Four years later, my father returned to the general workforce. He had several jobs and partnership(s) related to industrial mechanical/boiler work. He eventually started his own company.

At the peak, my parents were likely worth between $5 million and $20 million (with the value of the company being the brunt of that valuation).

My mother and father divorced near the beginning of her Dementia but, except for a short stint with my sister, he remained her primary caregiver until 2008.

When we began caring for my mother in 2008, she had effectively zero assets, was on Medicaid, and received a disability check for around than $800 per month.

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Posted by: iDrafted on 08-13-2015

For several years my mother stayed at my father's house in South Carolina. We did not have a rent payment to manage so we were able to develop a short-term sustainable budget.

*day-to-day needs were addressed. However, the budget was not long-term sustainable as it did not address clothing, furniture, transportation replacement costs or major medical/dental or other one time expenses...

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Posted by: Joey Berry on 04-03-2016

The landlord continues to demand a retroactive rent increase without providing us documentation that we ever agreed to her proposed rent. We continue to refuse (and defend my mother's rights and the rights of all tenants).

She has telegraphed a desire to evict my mother and her caregivers (i.e. my wife and myself). The position taken by the apartment only make sense to us as a tactic to circumvent fair housing laws - it would be difficult to imagine better (and less demanding tenants) so our recent requests for a service animal and proof of rent (for the renewal of my mother's SNAP benefits) appear to be the only likely triggers for the apartment manager's actions.

The manager has confirmed to us that her positions are consistent with Corporate Policy; it appears she is taking illegal actions related to the contract to avoid the appearance of illegal actions related to fair housing law - while telegraphing a sincere belief that any/all of her actions are proper (which would create of broad class of possible victims).

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Posted by: Joey Berry on 04-06-2016

Yesterday was a bad day for financial issues as DSS sent a letter denying SNAP benefit renewal (claiming they have not received some paperwork - since the paperwork was sent and we had about the same issue two years ago which DSS didn't correct it until we filed for a formal Fair Hearing, the poor communication within DSS is a good example of why Libertarians promote social over government solutions).

The Landlord also called and said they wouldn't accept this month's rent payment which telegraphs their intent to evict.

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Posted by: Joey Berry on 08-08-2015

By 2008, my mother was generally not competent [due to the severity of her Dementia and/or effects of medications] to create a power of attorney or health care power of attorney [i.e. Living Will].

My father had a [suspect] power of attorney from a year or two earlier. However, when he left, the only means to obtain legal authority over my mother's healthcare and finances was to seek legal guardianship/conservatorship in South Carolina.

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Posted by: Joey Berry on 11-28-2015

The annual account for the guardianship is due soon...

*technically, I have annual accounts due for both my parents as I currently have full guardianship of my mother and limited guardianship for my father.

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Posted by: Joey Berry on 04-14-2016

It appears that the Landlord continues to push for eviction.

We have had some trouble getting an attorney to review/accept the defense and counterclaim case over the last couple of days. We are still waiting for some responses.

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Posted by: Joey Berry on 04-21-2016

4-20-2016

The Landlord is still threatening eviction...

We can't comment on specifics of the legal issues with the Landlord as it appears the matter won't be settled without court review. It took us a while to locate an attorney whose practice field was compatible with our issues (and we held off on formal contact until the Landlord would not enter discussions earlier in the day).

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Posted by: Joey Berry on 05-02-2016

The Landlord had a Rule to Vacate or Show Cause served on my mother (Wanda Berry) on April 29, 2016; the day after her 65th birthday.

Michelle said the policeman asked for my mother and my wife gave him her name & he said, "That will work".

We spent the weekend discussing the issue with a lawyer friend and preparing paperwork for the verbal hearing before the Magistrate to "show cause" why we shouldn't be evicted. On Monday, May 2, 2016, Michelle, my mother, and I traveled to Conway to defend the issue before a Magistrate. On arrival, one clerk somewhat berated us for bringing my mother (when she has two caregivers and both of us needed to defend the issue) and both clerks refused to accept counterclaims from my mother and from Michelle.

Apparently [based on the clerks' assertions] in S.C. an eviction is heard by a Civil Magistrate but it is not a Civil matter (and there is no relief for Defendants injured by the Plaintiff). In short evictions are actually a nightmarish anti-Libertarian Limbo, with all rights suspended except the right of a Landlord to harass, blackmail, extort, and/or demand anything they see fit (with a worst-case that their demands are denied)...

On the positive side, we weren't required to prove any sort of case to a Magistrate (as outlined by law); instead we were handed a blank piece of paper and told to handwrite "I request a hearing" & provide contact information plus Michelle had to sign the paper; the clerks then almost immediately gave us a hearing date one week away (after a snide remark about us having to accept whatever hearing date was available when we let them know about the National LP Convention).

Apparently from one clerk's point of view, we should have been aware that Horry County offers virtually automatic hearings rather than following state law and full fault conveys to us for having any sort of disagreement with a Landlord in the first place...

Judicial reality often conflicts with actual reality and the obtuseness of government officials whose judgment underpins the rule of law can be astounding.

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Posted by: Joey Berry on 08-02-2015

This project is in live development. Meaning that many aspects of this project serve as a test for tools and techniques that may eventually be included in the main site.

Feel free to post comments and suggestions.

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Posted by: Joey Berry on 08-02-2015

We are adapting the old discussion template to create a new project template.

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Posted by: Joey Berry on 09-08-2015

I should probably add a "Current" section to this project but for now, I will post general updates about my mother's condition to the "Other Comments" area.

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Posted by: Joey Berry on 09-08-2015

As of 9-8-15, my mother had mostly recovered from her July downturn.

The main atypical issues were constipation and a rash on her legs, arms and backside. We treated the constipation with over-the-counter Magnesium Citrate (as a last resort). The rash appeared to be an allergy rather than an external yeast infection; we began to limit medications and monitor diet until we could determine the source of the outbreak.

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Posted by: Joey Berry on 09-10-2015

As of 9-10-15, my mother was less alert, less able to communicate, more lethargic, and she was vomiting occasionally (in small amounts). She started resisting eating and drinking again.

It isn't clear whether this is the beginning of a new downturn or if she is experiencing a short-term illness or reaction...

On 9-9-15, she had a substantial bowel movement (on the potty chair - in the bathroom). She lost color in her skin-tone but she was able to walk (with assistance/guidance) back to her chair. She remained very weak/gray for several hours; she vomited a little that evening...

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Posted by: Joey Berry on 09-12-2015

As of 9-11-15, my mother was stronger, with a better appetite, and better communication but she was also starting to show discomfort and/or distress (with very frequent verbal outbursts).

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Posted by: Joey Berry on 09-24-2015

As of 9-23-15, my mother had been slowly but steadily eroding in alertness, communication, and general strength for about a week.

We were concerned that the Morphine and Lorazepam that she was taking (fairly often but in lower than maximum prescribed doses) to control pain and anxiety were having some sort of long-term negative effect (and possibly creating an escalating cycle).

*we are currently trying a different combination of pain and anxiety medication within her existing "as needed" prescriptions (mainly using Neurontin for pain and more limited Lorazepam if possible - with the Morphine for emergency pain management).

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Posted by: Joey Berry on 10-02-2015

As of 10-1-15, easing up on some of the stronger medications has allowed my mother to regain some alertness but she is very limited in communication and her quality of life is not much improved.

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Posted by: Joey Berry on 10-05-2015

On 10-4-15, my mother got a full shower for the first time in a while; she has been getting regular sponge baths. We judged that she was stable enough to risk us getting her into the shower chair for most of the shower and hair washing; with some aid standing for full cleaning.

[Unfortunately, we mistimed a bowel movement which largely occurred during the shower...]

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Posted by: Joey Berry on 10-09-2015

As of 10-8-15, my mother has regained some alertness and she is eating better. She sometimes smiles or laughs (so there is some quality of life again) but that is still balanced by frequent outbursts/screaming or clear anxiety...

In other words her highs are higher but her lows are still pretty bad. However, things are much better than the cycle of anxiety and likely pain that she seemed to be trapped in about two weeks ago (and there is at least some hope that she can find another plateau with minimal pain/anxiety and some quality of life).

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Posted by: Joey Berry on 10-12-2015

My mother had a fairly good weekend. She has been eating relatively well. She is pretty weak and she doesn't seem to want to get stronger at this point.

We gave her a strong laxative Sunday morning so she has had some relief from constipation.

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Posted by: Joey Berry on 10-14-2015

As of early morning 10-14-15, my mother had relatively stabilized at a lower baseline (than prior to 9-8-15).

We have continued to take some video but we have posted little recently. If things deteriorate we will likely post some comments and video from the past month under the "Recovery/Decline" section (or create a new section specific to "Decline/Death").

*We still have a small hope that my mother with have a "rally" with an improved quality of life but it is looking increasingly likely that her high-end baseline doesn't allow enough quality of life to trigger her fighting nature. Of course, my mother has surprised medical personnel (and us) repeatedly over the years with rallies (and her spirit)...

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Posted by: Joey Berry on 10-20-2015

As of late 10-19-15, my mother is showing some small improvement in her quality of life; she is more responsive (but not really speaking) and she has smiled/laughed a few times over the last few days.

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Posted by: Joey Berry on 10-27-2015

As of 10-26-15, my mother had improved greatly in communication and quality of life through the week with a severe setback today involving extreme muscle rigidity and wailing...

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Posted by: Joey Berry on 11-03-2015

As of 11-3-15, my mother had (relatively) stabilized with less muscle rigidity through the week and more positive days. She has been eating (and chewing) very well for the past few days.

:)

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Posted by: Joey Berry on 11-04-2015

On 11-4-15, today my mother shocked us by eating an entire ice cream cone (with a small cake type cone). Meaning she has moved from not chewing with some aspiration to biting and chewing some foods.

She also ate some small steak pieces...

Right now she is laughing at something and seems happy which is a great day for late-stage dementia and in Hospice!

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Posted by: Joey Berry on 11-12-2015

As of 11-12-15, my mother has been doing better with less muscle rigidity. We tried natural alternatives for muscle relaxation and there seems to be some success.

We are currently increasing regular/decaf tea (for L-Theanine) and an herbal Catnip tea also seems to help; since we are from the South, the tea is usually sweet (and we generally blend the Catnip into the sweet tea for a better flavor).

*my wife hurt her back adjusting my mother the other day so day-to-day care has been complicated.

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Posted by: Joey Berry on 11-20-2015

As of 11-19-15, my mother has continued to improve slightly in terms of muscle rigidity; we ordered several different herbal or OTC products associated with joint and muscle issues and we have started to test different combinations for effectiveness.

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Posted by: Joey Berry on 11-27-2015

My mother has had a rough couple of days with increased distress and moaning. Luckily she had a pretty good Thanksgiving.

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Posted by: Joey Berry on 11-28-2015

One of my father's brothers has had some severe health issues lately. My mother's condition makes it difficult for any or all of us to travel but we hope to visit soon.

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Posted by: Joey Berry on 12-06-2015

As of 12-5-15, my mother has had about a week of restlessness during the day with very frequent high-volume bladder voiding throughout the day and night.

There appears to be some overall long-term reduction in muscle rigidity but no combination of food/medicine/supplement has been found to give her consistent relief.

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Posted by: Joey Berry on 12-14-2015

As of 12-13-15, my mother has had some deterioration in responsiveness and appetite but her overall health seems slightly improved over last week and she is currently taking very little medicine.

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Posted by: Joey Berry on 12-20-2015

As of 12-20-15, my mother's condition is slightly improved as far as general health and quality of life are concerned. The 60 day Hospice review allowed us to request a muscle relaxer which (in low doses) seems to be providing some relief for her muscle rigidity (and possibly joint pain) especially when combined with very low doses of Ativan.

Her appetite and chewing/swallowing have also improved from last week.

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Posted by: Joey Berry on 12-28-2015

As of 12-27-15, my mother's condition is improving slightly from last week with non-verbal and semi-verbal communication being much more interactive. Just when I thought we were beyond the point of direct interaction, my mother surprises me...

My mother actually kissed me on 12-26-15 as I helped her after being changed; at first I jerked away as she also occasionally bites...

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Posted by: Joey Berry on 12-31-2015

On 12-28-15, around 10:15AM my mother had [what we believe was] a small seizure which makes it about her sixth this year. This was the first seizure where we did not witness the jerking phase; we began to aid her during the labored breathing phase that has typically followed jerking and limpness (with bladder and/or bowel release). The short-term impact of this seizure appears minimal with no obvious direct impairment as of 12-30-15.

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Posted by: Joey Berry on 01-03-2016

On 1-3-16 (around 6:15AM), my mother clearly said "thank you" in a positive manner. This was amazing as she has been largely non-vocal or sub-vocal for weeks; with an occasional "uh-huh" as about the closest thing to communication.

*My mother had fairly consistently retained a mild expletive that she used during one-way outbursts but her two-way communications had become almost completely devoid of words.

**On 1-2-16, at one point it sounded like she said, "I got it"; her phrase was startling as a change from nothing and basic grunts but it was difficult to consider it as little more than an outburst at the time (even though the phrase was somewhat apt to the interactions at the time).

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Posted by: Joey Berry on 01-16-2016

As of 1-15-16, my mother remains largely non-verbal with some sub-verbal communication (largely an occasional "uh-huh").

My mother's general health appears to be on a fairly steady decline.

My mother's general medical complications have somewhat improved since a muscle relaxer has been added to her prescriptions; we had found only very limited success relieving her extreme muscle rigidity with natural and herbal remedies. Luckily the Hospice nurse practitioner who performed the 60 day Hospice recertification was able to get us a prescription (where the regular nurse had effectively advised that there was nothing to be done - except possibly drastically increase heavy duty pain medications).

*Previously, my mother was suffering from increasing muscle rigidity which appeared to aggravate joint and other pain in a rapidly increasing cycle; now her day-to-day quality of life is much improved.

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Posted by: Joey Berry on 01-25-2016

Late on 1-23-16, we verified my mother had a UTI with two home urinalysis reagent test strips (Cybow brand @ only $15.99 per 100 - we had previously used some more expensive brands but these seem just as good).

We contacted the on call Hospice nurse early on Sunday (1-24-16) and we picked up the antibiotics that afternoon.

Since infections usually cause a fairly noticeable and swift short-term deterioration in my mother's mental capacity, I'm curious how the treatment will affect her baseline.


*We normally follow a course of antibiotics with Diflucan (Fluconazole) as a preventative against yeast infections; we forgot to ask the on call nurse for the Diflucan so we will try to get a prescription through the regular nurse before the seven day course of antibiotics is finished.

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Posted by: Joey Berry on 01-30-2016

As of 1-29-16, my mother has been increasingly restless but much more vocal (with words are primarily gibberish) for the past week.

We have arranged for a prescription for Diflucan to follow her course of antibiotics; the prescription is ready and I plan to pick it up on Saturday [1-30-16].

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Posted by: Joey Berry on 02-03-2016

On 2-2-16, we adopted an "assistance animal" for my mother from the local animal shelter. The cat was named "Wellington" which was soon upgraded to [Marshal] Dillon "Beef Wellington" Berry; Dillon for short.

Within an hour of introducing Dillon to the house, he discovered my mother and they began to bond.

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