High Cost of Dying

My savings and funds gone surviving two deaths.

Survival is costly when living is the focus.

Mom had no savings after two years in an LTC

Not of our doing, "The Church Lady"'s plan.

Typical for those who worked all their lives to live.                                                They die using all they have for their last days.

With only an eighth grade education.

Moving from home to her older's sister's apartment.

Similar to today's apartments and ghettos.

Cold water flats, coal heat,

Julia had been an RN, she let her certification lapse

Seeking more "havoc to wreak our family" she re-registered.

She would visit, control and undermine.

Revenge and spite wearing white to others, black to us.

A wolf in sheep's clothing; pretending to care

She used the entrance to our family home from our Church

Pretending to want to help, she planned total chaos

Pretending to help, she slithered into our lives

Waiting to strike when we least expected

Journey of everlasting love visiting Mom's unmarked grave.

Finally a marker displaying her name.

 

Saving for a headstone with low wages, high costs

Putting food on the table, holding on while letting go.

Dates reflecting she survived into her 100th year.

Joining people surrounding always to be near.

Grandparents and cousins, Uncles and Aunts.

Generations coming together as in life they began.

Beginning to "come out of a fog",  . 

Death of my husband. Death of my mother

Decades are passing, loss undermines.

Visits and flowers reminders of what's missing.

 

Tarnished Golden Years

Plowed the fields                                                                                                       Cleaned the toilets                                                                                                   Survived the births                                                                                                     Fought the battles

Shared the bread

Saved the water

Found the money

Paved the way

 

Treated like a commodity

Told we have little value

Pushed to leave "our space”

Shelved as “out of date”

 

Predators circle

Smelling sweet success

Family far away

 

Tricks no treats 

Circling, following, pouncing

Waiting, watching, wondering

 

Youth is blind

Middle Age wears an eye patch

Old Age is told what to see

LBD Changes The Brain

Mom's LBD reminded me of an experimental music presentation I once heard that included many dissonant chords my ear and brain had difficulty accepting.

There's an underlying relationship of notes; the arrangement, the sequence and even the sounds themselves can be sequential and logical or varied and confusing. 

Having Aphasia also makes carrying on a conversation with Mom both interesting and frustrating. 

Mom inserts sounds and gives them various meanings. 

"Haska" is one of her favorite words. 

Just when we think we understand what she's using it to describe (a specific place she's going to; a hallucinatory place she's developed in her life) she may use it in another way.

Ha Ha (not a laugh, a type of "membership" in a Haska)

Wa Wa (membership in another group, not a Haska and apparently quite contrary to the Ha Ha group). 

Fascinating when you realize there are "values" associated to words that seem random or not "actual".

They have meaning to the speaker and theres's still a level of ability to set personal values even with adjusted words.

She may use the same sound combinations in a sentence where they have another meaning and we're left guessing what new identity they've taken on. 

There was never a "dull moment". 

I smile and even laugh today; back then it was confusing and even upsetting to listen and watch; we did not understand this was her brain trying to express, sort and communicate.

Now, I realize it was a sign of the Dementia.

Words were inserted into sentences as though they belong in a specific place and have a specific meaning. It's not random; it's as though the brain is simply substituting.

I often read about other LBD people who've been highly productive, intelligent and involved in life and wonder if having an active and capable brain helps to keep Lewy Body Dementia at bay causing the long roller coaster ride until it finally totally engulfs and destroys albeit often in the very last breaths of life.

The mobile phone we had for her became unusable.

Those who live long distances from someone with Dementia, who do not have personal interaction, often blame those who caregive of many negative actions.

The phone was small. The coordination needed to hold it, trying to locate the button to "connect" or "disconnect" was gone.

My oldest son claimed we "took away" his Grandmother's phone and wouldn't let him talk with her. Far from the truth.

Time passed and even if she was in the room and the room phone was allowed to ring many times, she didn't answer. 

When daughter or I called, we thought she wasn't in her room or perhaps was too far away, in the bathroom, for example.

When you love someone, you sometimes look past what's in plain sight including mental, emotional and physical changes.

For a period of time Mom could speak on the room phone.

Watching and listening, hearing and more fully noticing various progressions or lessening of skillsets, I believe she was progressing in deterioration/loss of various processing skillsets

She'd often pick up the phone and didn't know which end to speak into and which end for her ear. 

Mom was still good at "covering up" and had the ability to laugh at herself; she sometimes realized the phone was wrong side up for listening/speaking. Then it progressed to where she did not have this recognition.

Mom never ceased to amaze me, though. I'd spend time with her, notice what I felt were changes, think they're now a fixed behavior and then on another visit, not necessarily the next, that change would not be evident.

This was one of the "masks" I've talked about with Lewy Body Dementia; off and on, sometimes fixed sometimes loose, never knowing who was really there.

Mom seemed to stare a lot more than she used to. 

Yes, she had sight challenges and the hallucinations made that condition even more challenging. 

Or, could medications Mom was receiving produce these "side effects" and we didn't realize?

She fixed her gaze more often and seemed to be staring off into space without appearing to be thinking or focusing on anything, trance like. Dementia or medications?

We've all "drifted off" from time to time on a thought or concern This is how Lewy Body Dementia can affect in later stages and so we assigned this for years to LBD when maybe we were wrong, it could have been the "Meds".

To our knowledge, she wasn't on any "drugs" that would cause this behavior and I've noticed this in other people with advanced Dementia. 

We made many "missteps". Daughter and I are remedying as we move towards "unknown" parts of aging and what is holds.

Mom remembered certain actions needed to be taken but while in the process of doing the action would reverse her actions and undo what she'd done. 

She usually remembered she's supposed to lock her wheelchair before attempting to transfer to her chair (she does this herself even though she should have assistance with the transfer).  

She'll lock the brakes, move her hands and then believe she's not locked them and unlocks them. I'm sure others afflicted with LBD have similar reactions and that's why LBD can be so dangerous and so many falls.

Hindsight is always so much clearer. Advancements in the short time since I started writing this Blog, in the field of Neurology & Lewy Body Dementia, have moved light years ahead. 

Today . . .  
I'm really happy I somehow gathered the courage to "go public" with our challenges and share the problems and the possibilities we uncovered along the way.

I look even farther forward to the additional ways I can add to more individual walks along the paths we maneuvered so precariously.

Mom loved to read and she was a life long learner. I know she would be pleased to see what we've accomplished and how we're working to resolve problems that still exist and challenges we continue to witness and encounter.

Life is a process, it's full of surprises, Mom would say. 

The best surprise: finding others who share your journey.

Originally Published December 29, 2014. 

Mom's "100thyear". She passed the prior January.    

                                                                                                                                      Originally started September 7, 2013. 

Mom was still very much with us. 

Look Behind The Curtain

Let's take a look behind the "marketing" and "tour presentation" statements for many Long Term Care facilities. 

First area of "inspection" -- DINING.

Dining As It Appears:  Walking in you'll see tables, often a TV, maybe it's a combination "community room" used for visiting musical groups or for other uses. You're told how residents are "encouraged" to come to the dining room. How the staff has been trained in "white glove individual service" and it's like dining in a nice restaurant. 

You're told, if for some reason they can't get to the dining room or would prefer to "dine in their room", this is simply accomplished by the resident calling ahead and ordering what they'd like.  And, of course, they can do that for the dining room, as well.

Picture if you will someone with poor eyesight given a list with items on it about the size of this type. The list is in columns but isn't organized, just randomly posted. 

And on any given day certain items "may not be available" so the resident, who has difficulty making decisions due to advancing Dementia or just indecisive, now has to make another choice. 

REALITY DINING:  This mulitpurpose room may be used several times a quarter for meetings and other events and closed to residents. Residents must dine in their dining room on their floor or in their room. This can be for one meal: breakfast, lunch or dinner OR it can be for an entire day.

Dining on the resident's living floor is in a small area where the residents who cannot travel the distance or do not have the mental or physical abilities to sit with others due to either behaviour or limitations are regularly dining. No conversation possible.

Sights and sounds that to the more capable person are not just distracting, they're disturbing; you get to see what it's like, how you'll be, where you're headed. That's demoralizing and can cause the "moods" to be constantly down that are regularly measured as mandated by Federal and State Rules and Regulations in LTC Facilities.

Dining begins and service ends at a set time. If you don't make it, you may have to settle for whatever might happen to be in the refrigerator on the floor and due to "cutbacks" that's possibly now limited to ice cream, bologna sandwiches and maybe some low fat milk.

Why wouldn't you make it to dining on time? Multiple reasons.
Your roommate is in the bathroom and you need to wait until she/he finishes because there are no other bathrooms set up to accommodate your need to have a bar to transfer and enough space for your wheelchair to be moved behind you safely. 

You can roll yourself in your wheelchair but you can't get out of your bed or chair without assistance and staff shortages mean you wait a minimum of half an hour or longer for help that should have taken just a few minutes.

Or many other challenges faced every day by residents trying to adjust and adhere to schedules while they cope with limitations and deterioration.

Table Service isn't just one to one, it's one at a time and each person is asked what they want but no "written orders" are taken so the server heads back to "adjust" the order and wait to have it ladled out. She/he then walks slowly over to the person and delivers it and moves on. 

Fast food we may not want it to be but faster service would be easier on the residents who often wait over an hour before their turn to be served.

Assistance with anything in the dining room? The lady who broke her back has to ask repeatedly for her dish ring so it won't move while she works to feed herself. IF she wants assistance, she must be fed at the dining area on her residential floor, no accommodation in this dining room. 

Guess it doesn't "look good" to those who might be visiting. Besides, they only have so many "allocated" feeders so they'd have to pay an additional cost. You can always provide it yourself, of course, anything that you'd "like" to have, and pay independently.

REALITY IN-ROOM DINING:  Served from what's been brought to the upstairs dining room you may be served first or last. It's just like downstairs: one person scoops out for one resident at a time. Snails move faster. Then, one staff member takes one dish to one person either in their room or in the upstairs dining area.

Now, all this time, upstairs and down, residents are really lucky if that particular meal someone is kind enough to ask them if they'd like something to drink. They often wait from the time the arrive or are brought into a dining area for service to begin and for their "turn" to finally come to get some form of drink or food -- and seldom are they given within a short period of time of one another.

Room trays are assembled from a "ticket" that's been put together and sometimes the food is "preassembled" and usually very cold and very "tough". It's usually been sitting (goodness knows for how long and where) since someone assembled it downstairs to go up with the carts. It often arrives as long as thirty minutes after everyone's been assembled in the dining area by staff members. 

Many of those who "dine" upstairs on the floor where they live have been started to be assembled at least an hour before dinner's officially scheduled. Some have been sitting in the area almost all day long. Maybe they've been checked on and maybe not; maybe they've been changed, maybe not. Who keeps track? 

DINING ON SPECIAL OCCASIONS.  The facility posts an "Invitation" for friends and family to "join the festivities" and lists a menu with a set cost per person. This Invitation is limited to being posted in one of the two elevators so if you happen not to get that elevator, you don't know about this "opportunity".

Added staff appears for service. There's even someone acting as maitre'de to escort "families" to their seats. Tables are set up specifically for "reservations". It's not at all like everyday but visitors see and believe it is.

Missing are tables or areas for "singles" or "groups" of residents who don't have someone joining them for this "special meal" They're expected to "eat upstairs" -- either in their room or with the people who need supervision and assistance. 

Happy Holiday!

As mentioned about this past Christmas dining, name tent tags on the tables was a nice choice as were the tablecloths but adding "and family" and not having tent tags for residents who wanted to eat in the dining room but did not have a "place at a table" was upsetting.

QUALITY OF FOOD.  Prepared ahead most food is cold to lukewarm. Sometimes "water bath" serving containers are used, sometimes not. Everything is prepared alike; few seasonings and very little salt. But they're heavy on the sugar in the sweets!

Variety is limited. One choice of entree per meal. One set "menu" per meal. You can try to substitute but if it's "forgotten", too bad. And, you have to make sure you call at least two hours before the scheduled time which means you need to call by 5:30 AM for breakfast; kitchen staff isn't around to "take your order" the evening before; the person who does that is gone for the day before service begins.

COVERS TO PROTECT CLOTHING. Need a covering for your clothing because your arthritic hands have difficulty balancing the regular fork and spoon? Even though you use one every meal, no one thinks to put it at "your place". Every day your name is put at a certain place and although you've eaten there forever, no one thinks to provide this benefit for your arrival.

Covers have a nice pocket in the front to catch dropped food but they have a snap in the back even someone with capable hands and good eyes has difficulty closing. I tried. It took several attempts. Ladies with any hair length are greatly inconvenienced because they can't hold up their hair while trying to manipulate and place those small snap and closure in just the right configuration.

DISHES AND UTENSILS.If you want to use "special utensils", there has to be a "special order" for those. So, you struggle to balance food in a small bowled spoon with a very narrow handle you can barely hold onto. Grasping a slender handle on the fork they place in front of you is difficult but it's even more frustrating because you constantly drop food as you try, unsuccessfully, to balance it from the plate to your mouth.

Glasses!  Who in the world provides glasses filled to the top with liquid and expects a Senior to be able to ensure it gets to their lips and down their throat without spilling half the contents?  And a glass so small it's barely capable of holding 3 or 4 good sized swallows.

STRAWS. Ask for one and it's like you're asking for something that hasn't been invented yet. Do they have "special cups" similar to "tippy cups". YES.  What does it take to get one? Waiting half your meal and asking half a dozen times or more. 

Again, there is no consideration, no "remembering" what a "dining guest" likes/needs. That would be REAL service along with getting food that isn't dried out and cold, of course.

A PLACE FOR EVERYONE AND EVERYONE IN THEIR PLACE.  Yes, you can ask to sit with "someone" or in a "group" of people. But if that group isn't hospitable, you're soon looking for another place to sit. If you don't "ask", you're "assigned" and that means it's really difficult and sometimes impossible to get staff to move you or for you to move to another location.So, tables are set with "name signs" and you sit there every meal with the same people, hospitable or not.

It's not dining with whom you want and choices made each meal to dine with this person or that one.

TV IS ON WHETHER YOU WANT IT OR NOT.  Conversation? Depends on where you're seated. Close to the TV and you can barely hear yourself think but since some residents want it on, it's on. Sometimes I think it's more for the staff, especially in the "floor dining areas" so they can watch their "favorite programs" while serving the evening meal and feeding residents who take a longer time to eat.

AND TO THINK. THIS IS "DINING". THIS IS A "PLEASUREABLE EXPERIENCE" and as such is a "highlight" of your tour of the facility.

For many it's one of the few times they're social. Some days there are no activities. No events. And they don't have the strength in their aging bodies to make it up and down, up and down, up and down, more than three times in any one day.

ASSISTANCE?  At times. But because the facility is almost always short staffed, it's everyone for themselves and so many start down to the lower level dining room far in advance just to ensure they get there on time. 

Of course, those who have "challenges" in weak bladders truly have a choice -- stay on the floor and eat with those who provide no chance for conversation or socialization or take a chance they'll have an accident because there are no restrooms past their room that can accommodate their needs for entry and exit.

MOM never wanted to go into a "facility". She made me promise I wouldn't send her until she had no idea where she was going or where she was.

Well, Julia, the woman who came into our life and used Undue Influence on Mom helping her to "disconnect" from our family didn't have to "honor your mother" as I felt obliged..

Julia saw Mom's declining ability to reason as a trained Registered Nurse AND as someone who specialized in providing care giving for men and women with Dementia. She knew Mom's mental capabilities had diminished far beyond what we realized or saw. 

Julia succeeded in getting Mom and the State of Missouri Department of Health and Senior Services to "consider" and to "believe just enough" to put into action several steps that took Mom from the home and family she loved out to experience the raw, rough and hardship world of living permanently in Long Term Care.

BE EVER VIGILANT, FAMILIES.  Be ever vigilant Seniors. It may eventually be necessary as Mom and I always talked about but going before "your real time" is going where there are too few rules and regulations and too little enforcement to successfully ensure the safety and well being of one of our most precious gifts, long life.

Life Lessons Learned

Some say you can adjust, make the best of a life challenge.                                   It's like falling into the "rabbit hole" of Alice in Wonderland.

You try your best, do what you can and often "go with the flow".

Here's what I wrote as we struggled just to move day to day:

Daughter and I are both trying to find full time jobs.

We're both working part time.

Can't afford to work on Commission basis.

Need consistent income to overcome and just pay bills.

With full time jobs, we would have some security.

We've found "gigs"--always waiting for the next one "to appear".

One day out of many. We needed desperately to be different.

We both had the day off. This was unusual. 

We had enough in our "budget" for the week to use the Gas                                             we had in the tank and replace it. 

Decided to "splurge" and take a chance,                                                                         to continue to survive, move forward.

We, separately and together, felt the need to feel close.                                           That meant traveling to Mom's gravesite.

To gain strength from being "near" as we did for years.

A journey of more than 100 miles round trip,                                                         providing some peace -- now that we've returned.

It's been difficult at my work lately. 

Challenges I'm not sure I want to continue to endure.

With no other opportunities, I keep believing in tomorrow.

Like many others, we move from day to day.

We know this time provides the basis                                                                           for our keeping a roof over our heads                                                                     and food on the table.

I know I can't walk away until I find another. 

This is the typical "world of work" and I am only one of many.

There's one "challenge" I face many do not -- 

Not so easy to find work "at my age".

Mom's life was her example to me                                                                                    of personal strength and caring beyond yourself. 

She taught me to believe in my "self'. 

I'd practiced that lesson many times over when she was around.