Wednesday, April 17, 2024

Addiction/Overdoses Long Term Care

Mom’s old Skilled Nursing Facility "loves" PNR medications!  Especially the kind that are for "pain" and "discomfort", emotional as well as physical. Many facilities love these types of medications.

There are many ways to "medicate" in LTC. Depending on when a "medication" is given, the facility can play a game "assigning" different categories in different sections of reports depending if they're "as needed" or "prescribed daily dosages".

These loopholes mean big opportunities to facilites. 

They’re a part of the infrastructure of LTC's we never really notice, don’t pay attention to and don’t realize how extensive they are as a practice.

What happens when you take narcotics? You generally get drowsy, often sleep a lot and you almost always “mellow”. Seniors often sit or lay in bed and require a lot less attention – giving the facility the ability to operate with fewer staff.

I’ve witnessed many Nurses ask: Patient A, Do you need anything for pain? Patient A, on a scale of 1 to 10, how’s that pain you’ve been having? Would you like to have a “B” that’s been prescribed for you …."
 
Meds can build up tolerance and require heavier dosages or types to gain the same effect causing other challenges.

Just like we’re being advised NOT to take antibiotics because of raising of tolerance and immunity of bugs built around frequent usage of certain kinds:THOSE PILLS CAN BE ADDICTIVE. 

Who advises the residents about this “side effect”? 

That’s the Dr’s place to answer questions and explain but he’s not there; he’s only available through the Nurse contacting his office and not able to “speak with the patient” when the Nurse calls to request “something”.

I’ve heard these same nurses on the phone to the Dr’s office saying, “Patient A could use something to calm down, she seems to be agitated, doesn’t appear to be getting enough rest.”  

I’ve had the Floor Nurse call and try to convince me Mom needed “something” to calm her down; she seemed “more agitated than usual” or “a little more difficult to work with”.

Some Seniors are traumatized by a "loss of control" and a "feeling of helplessness" with many medications.

Another side effect is dizziness which can lead to falls and that can cause broken bones or other physical damage.

With Lewy Body Dementia, there are types of antipsychotic drugs that carry the warning MAY CAUSE DEATH.

Mom's "Assigned Doctor" . . .  
Never diagnosed her with Dementia of any kind --
Never connected with us and --
Seldom came in person to actually "examine" or "interview" their "assigned patients".

I understand: Many of us have to work and do not have the funds to get "in home Nursing" -- especially when it becomes around the clock.
  
How do you handle these “offhand” requests if the floor Nurse calls and wants to get an "as needed" prescription for "mood changing" medication? 

You’ve been caught at a time when this is the farthest from your mind or daily schedule. It would be so easy to accept what you’re told, to just this once let it happen.

Long Term Cares are for many of those who need various types of medical oversight.

It's important to understand the basis on which some drugs can be given. There is no mandate the resident has to ask for it. 

The Nurse or the Licensed Medications Distributor can access the patient's need for the medication and can try to "administer" it to her/him. 

Think about it. How many aged men and women do you know who DO NOT take some medications? Very few.

BE VERY CAREFUL. This request can also include a sliding scale of levels of medication. 

We had that happen and almost lost Mom. She was limp as a rag doll from too high a dose and we were very fortunate it did not kill her -- that we were vigilent and arrived in time to take her from the facility to the ER and to have confiscated the drug before it was administered yet again by the same Licensed Medications Distributor.

CAUTION: Ask questions. Probe. Ensure safety.

Your loved one’s life may hang in the balance.

Require in writing follow up with details on the meds including name, dosage suggested, dosages administered, details on frequency and maximums and for how long. For this you will probably need a Power of Attorney.

Here are some ways we responded

 We suggested "alternative methods" provided by Teepa Snow and others who are in the forefront of care giving for Seniors and especially those with Dementia.

Questioned what was being done in the facility to provide activities and interests Mom would enjoy, occupy her mind and body, that would give her "something else" to focus on.

Suggested Action: Leaving the room, standing just outside and returning after a short time.

What would a parent do with a child that didn’t want to cooperate with a direction that was for their safety and well being or in their best interest? TRY A DIFFERENT APPROACH.

Change The Environment. Take her/him something new that’s “tactile”. Touch intrigues many people.. For Mom, we involved her in being busy with folding stacks of washcloths and when they were done, take them out of the room take them apart and go back and ask if she’d like “some more” to do.

Mom needed and many Seniors need, to be active and to be positively accomplishing something. 

Sitting around playing games, putting together puzzles, cards or even TV was never their lifestyle. 

They can’t change now. Their minds are “set” and the best action to take is to honor and recognize their habits and their interests and work with them.

Frustration and boredom are catalysts for people of all ages to do and say things that are counter productive. It doesn’t take much professional training but it does take common sense to look, listen and learn from our Seniors about what values and interests make their days positive.


Wednesday, April 10, 2024

Chickens Live Better Than Seniors

Readers: We need your compassion & your support.
Recommend this Blog to three others. 
Ask them to do the same.
                
Change comes from knowledge. 
It's made one person at a time
We bring to light experience, knowledge, concern.
Thank you for shining light into darkness.

United Healthcare on their website posts: 
What is nursing home level of care?

"Nursing home care is provided mostly by licensed practical nurses and nurse aides under the supervision of a registered nurse. Care is focused on activities of daily living, like dressing, bathing and eating. This is often called "custodial care."

Many fail to see or consider the conditions within many Long Term Care Facilities often referred to as "Nursing Home Care" or "Custodial Care" leading to abnormal lives for our elderly.

Several organizations have risen up to call for more humane treatment for chickens on farms where they spend their lives in squalor. 

Humans simply turn the page or click onto another site esp when they don't have a loved one "experiencing" LTC.

Chickens and humans both react to mistreatment. 
Humane Societies and other private animal rights organizations were formed to protect animals and they're becoming more and more effective in shutting down puppy mills, rescuing abused animals and providing better living conditions overall.

When will we recognize the current Long Term Care system is stagnant, ineffective and creates living conditions we don't tolerate for animals but allow for loved ones?

Even Encylopedia Britannica Advocacy has "jumped on" the bandwagon for chickens 


This is a section from the entry on the above site. 
INSERT THE WORD "SENIOR" FOR CHICKEN:

"Chickens are sociable, intelligent animals. 
"Studies have shown that they are able to solve problems. . . 
"Their natural behavior includes living in stable groups . . .
"The chickens in a given flock know . . .recognize each other." 

The article goes on to talk about how the chickens react -- often upset, angry, fighting. How they live in the excrement and how they get sick.

I walked down halls in LTC's noticing a hint of floral or spice in the air. The purpose was to cover the smell of urine and excrement.

Report it, right? To whom? The Administrator who was overwhelmed with being short staffed, reports overdue to higher interests with large investments looking for her to reduce the bottom line and raise the level of profitability.

The One and Only RN on duty for a facility numbering well over 100 residents? The LPN whose responsibilities already exceed human capability? 

Seniors A
re Often Confined
Mentally isolated or pushed into unwanted social settings.
Have their walkers taken away.

Limited in movement by wheelchairs that function poorly;
Not fitted to their bodies or ensured adjusted when needed.

Seniors left to "GO" -- to urinate or to defecate in their paper pants that barely hold what's passed. Seniors provided with flimsy paper pants of the lowest quality simply to cut corners and provide funds.

Sitting on a toilet continuing to press a buzzer no one answers.
Short staffed, exhausted attendants, two hands and little else.

Seniors are placed in "groups" not their choosing or where they're comfortable.

All meant to contain, control, limit movement and mobility
Assigned to tables day after day and not allowed to chose where they'll sit; a placard often shows their name and that's where they're expected to sit.
Placed in areas or left in their rooms, isolated and without activity and human touch.

Overworked aides and short staffing numbers cannot provide adequate attention or assistance.
Close your eyes, now envision:  
Twelve people want to attend an activity on the first floor.
They're on the third floor. 
The two elevators accommodate two wheelchairs each and that's close quarters.
 The "activity" is half an hour in length. 
There are four attendants on the floor; one is needed for each 10 rooms and there are over 20. 

Who goes, who stays, who is privileged and who left behind?
Easy answer from personal experience:
A resident who has a visitor who can help them .
A resident who can move their wheelchair quickly, reach the button to summon the elevator, get on without crashing into someone or another chair already in place
Be capable of moving both forward and backward without running over someone's feet or bumping into walls or objects.
Is this how you want to live? 
It hurt to see and hear and know my hands were tied trying to survive a life of basic survival outside those doors

It hasn't changed and to make matters worse, our "younger generations" are screaming at our "older and oldest" :

Get Out Of Your Homes! We Want And Need Them, You Don't!

Administrators and Executives can have large salaries and even benefits including private club memberships where they "supposedly" mingle to get more "donations" and "funds".

QUESTION:  Where's the outcry? Where's the uproar? Where are we as a society when we protect our animals and children but not our Seniors?

What do our practices show about us as the supposed leading Nation on earth economically?

If we cannot provide for and protect the most vulnerable


If we do not act and respond effectively and completely to their needs


If we fail to provide for them -- what will happen to the rest of us 
when we reach their age and stage of life?


Life is precious in all its stages. 
Work for change. 
Stop the current movement wanting to displace Seniors demanding they "move out" and "move on". 

Monday, April 8, 2024

Middle Class or Survival Class

Made it through.  Another Anniversary. 
I thought the first couple, the first few would be the most difficult. 

I believe the intensity is more today because life is returning to the Normal of being able to live, as daughter describes it, as a member of the Middle Class rather than the Survival Class.

When we were struggling, existing day to day, with destruction on all sides rather than support or consideration.....

When where we were was so different from what we had, what we gave to our sons, what we provided for other family members....


When some family members chose to harm and hurt and walk away....


When we were "sub-normal" because we refused to do what we were told and so deserved whatever we got or didn't get in life...


We'd always been self sufficient....providing for ourselves....giving to others....sharing and caring...

He was there, my husband was there, when we lived a "normal" life. 

We were moving into, through, beyond the "interim" TOGETHER

We were a family. A Multigenerational Family. 

A family who reached out to others, involved in building businesses and a home, working in the community, active in our Church. 

We traveled. We entertained family and friends. 

We were just like you who read these words living a life we worked hard to create with challenges, opportunities and rewards.


The America we'd dreamed about and told was "our place" as we moved through life supporting and sustaining one another.

Last night we decided to have dinner out. Some do it frequently even "ordering delivery" but for us it wasn't in the budget.

Not even a stop at a fast food place could be considered. 
We'd moved from the "haves" to the "have nots".
There was no real end in sight.
For so long, hand to mouth, no potential change, just future "hope".

My life was a widowed  working older adult and daughter's life moving from early adulthood into full fledged, fully responsible 
twenty-something as a  co-provider and sustainer.

She didn't get the "perks" her brothers received. 
She  had "responsibilities" and she never asked  
Thrust into the world, not transitioned as they had been.
Before her time, in ways far below what her brothers' were provided. 

Like going down a drain, from a large entry to twisting turning world. So different from the life husband and I built and sustained together.
 
Before he and Mom entered into the last chapters of each of their lives together and eventually with one surviving the other, for a while.

I'd suggested the "dining out" to move beyond the preceding days where what I did brought to mind too many reminders, experiences.

No longer just memories of times past. Reminders of never to be experienced or created NEW memories with him, my husband, my friend, my mother, my friend.

I was picking daughter up from work; she's usually in a car pool  and occasionally we drive sharing one another's company.

Each goes about our days as we climb and scale the mountain of shouldering together what once was in the hands of four people is now in the hands of two. 

Two who stand together while many question and even ridicule this choice, this belief, we are better together than we could possibly be each on our own.

Asked her to choose a place. Coping with challenges and responsibilities with deadlines while going through the prospect of another anniversary alone, another realization of the separation, the last times spent together and daughter's loss of father and Grandma.

Reminding myself how fortunate I had been and for how long doesn't take away the pain of the loss, of the missing the continuation of those times.

Did we have a "perfect" marriage? 
Were we "perfect" together or as a family, as parents? 
Of course not. 

People don't have insertable programs or updates we receive to ensure what we say and do are always totally correct and in the everyone's full and best interest.

As before, it's an ocean, this life, with ebbs, flows, rises and falls, storms and amazing sunrises and sunsets both far out and close in.

Daughter and I had been doing more "cleaning out". 

That and her going through her own individual personal and professional life adjustments were taking a toll that was visible. 

New opportunities. New possibilities. 
Decisions to make. Choices. 
Deadlines. Responsibilites

You'd think after this long a time (several years -- going on seven for husband/father and four with Mom/Grandma) -- we'd have exhausted the possibilities of removing, sharing, picking through and providing to others for their use.

(Update from original writing: Husband since 2011; Mom, 2014.)

Reality is we cope with daily life that has been often moving forward through basic survival from day to day and not knowing where we would be in days and sometimes just in hours. 

Jobs for both were minimal and we had low financial means.

We'd experienced a water problem in our basement.  
Our attempts to try to resolve the weed problem outside in the front of our house and using a thick covering of mulch meant accumulation of rain water and overflow came inside.

Daughter and I consoled one another....we'd been wanting to do more "sorting through" and "getting rid of"; this was a prime opportunity. 

We didn't like the circumstances but sometimes it's what's needed and necessary -- that "push" when we'd felt we couldn't sustain another "self push".

Clothing from years past had been put in boxes and in our attempts to clean and clear out areas, we'd put the boxes on the unfinished basement floor.  

You guessed it ... the cardboard absorbed the water and we had to decide -- pitch or keep and if keep, we'd have to wash and re store.

Another "purging" yet so much accumulation; hard to recall we'd had a fire several years ago that wiped out so many memories.

Life and death, laughter and tears. memories created to be remembered and then lost as years took their toll.

It was the joy of being together that today has the greatest value even as we move, daughter and I, into years ahead not knowing exactly where we're going -- only where we've been.

Saturday, April 6, 2024

Poor Design & Function LTC Rooms

Long Term Care Facilities/Nursing Homes obsolete in room design and function.

Set up for residents with high physical function or no need to access various areas.

We made adjustments to our home to accommodate Mom's progressive age advancement and her physical needs.

While some rennovations are costly, others can be done with simple adjustments.

Long Term Care Facilities I've visited and where Mom lived expected the resident to adjust to whatever surroundings they were given with very little consideration for their needs, especially in the "common" or "public" areas.

NOTE:  This blog does not address those "high end" and "elegant" facilities where money buys new everything. We write about the average, the most prevalent and the many that are perhaps at least 40 plus years old and showing it. 

Mom's facility had a "face lift" on the very public, very pricey, Rehab Floor, a "showcase" for obtaining future business.

Even here, though, whoever designed the place had in mind people far younger and more capable. 

Elegant, dark colors predominate. 
Each room with a large flat screen TV. 

Few lights, though, and the bathrooms although a little more modern, were still small.

Someone with limitations could use it but anyone with more advanced needs would have great difficulties.

The rooms are all one person to a space in this "privileged area". 

Rooms on the "regular floors" accommodate two usually or one if you pay "a premium".

Doesn't matter what they "contract" as that is where they will stay.

Most hospitals in the US have changed from wards and multi person rooms because of the spread of disease and the trauma for anyone who becomes "capable" seeing the distress of another human being.

How long has it been since a renovation has been done at your loved one's facility?

How old is the building? How old are the furnishings? 

How long ago was the bathroom redone?

Chances are the facility has a face lift in the "public areas" but the rooms and the areas used by residents are the last to see any "redo" or upgrades"

THE SHOWER ROOM. This is a separate location usually located down the hall from the rooms. 

Look as closely as you look at your own bath/shower area. 
Don't just give it a quick "once over".

ASK when it was last renovated. Chances are you'll see by the tile, the grouting, the layout and design, the area used to "bathe" or "shower" will tell the story. 

Think of what happens in your home with usage; you have to clean constantly. HOW OFTEN IS THIS AREA CLEANED? 

Mom looked forward to her shower(s); sometimes she received more than one a week. 

Times were at the convenience of the Aides and since they were understaffed, some residents received showers well past the time they'd regularly "go to bed/go to sleep". 

BUT, IF THEY WANTED THEIR SHOWER, they accommodated. They waited. And often, they were disappointed. One Aide given too many showers and too many other responsibilities just couldn't manage everything.

THE BATHROOM -- one facility per resident room for one person at a time. If your roommate "has to go" you have to wait. 

In Mom's facility, there were restrooms in the hall. You had to walk the length of the corridor where your room was located (those at the end were really walking far) and halfway down the side hall to get there. 

These restrooms were "handicap" BUT the size of the stalls were too small to have a wheelchair enter inside and very small for turning around from entering to trying to actually use the commode for its intended purpose. 

ENTRY AND EXIT IN RESIDENT ROOM BATHROOM.  

With a walker it was a challenge; with a wheelchair, you had to be a really excellent driver and manipulator. 

The door would swing closed on its hinges if you didn't place the upright rectangular (about 12 inches long by 6 inches wide) trash can AGAINST THE DOOR.  

And it had to be placed "just right" to hold the door open. 

If you happened to move it, the door could close -- against you and if in a wheelchair, the weight of the door and its size meant a struggle and possible injury.

I often wondered why Mom and other people had black and blue arms or cuts and abrasions on their legs -- that may be the reason.

Using the toilet in the room.

Height.  Adding on a higher seat and side bars was common. 

What wasn't common was any other bar or railing on the walls to assist with turning the body or allowing someone to stand and move "into" the opening of the high sided rails attached to the toilet seat. 

Condition. Don't look too closely. 

No amount of scrubbing can get rid of all the built up residue and areas that are in need of constant repair but should be replaced. 

When was the last time the toilet was replaced?  

Remember, theses are rooms with two residents and the "going rate" is as much as $5,000 or more per person per month.

CLEANLINESS.  We scrubbed Mom's many a time. 

We'd ask and it was another one of those "housekeeping has to do it and they're busy somewhere.

Meanwhile, Mom has to go or her roommate had to go and that wasn't going to happen on our watch with "remnants and remainders" contaminating the seat and surround.

TOILET TISSUE HOLDER: Two. Sounds great, right? 

Inevitably the closest one would be empty and the other one would be just far enough away that a resident had to lean forward (you guessed it, causing them to possibly get off balance and fall forward and onto the floor).

Paper the quality of writing paper. Seniors are known for having hemorrhoids and this aggravates and irritates and causes bleeding and infection.

But that's to be expected, right? 
Those irritations and infections are just "growing older".
No. They do not have to be with good  peri-anal care.

CALL LIGHT.  If you're lucky, someone has attached a string that stretches horizontally and within reach of the toilet. 

If not, no string and the "light switch" is too far to reach, again, without putting yourself way off balance and falling. 

No matter how soon you put the light on, inevitably, due to the lack of adequate numbers of Aides on duty, you'll wait at least 10 -15 minutes or longer. 

You'll "tell yourself" you can take care of this "basic need" and before long, another FALL happens and it's onto a hard, unforgiving floor capable of causing cuts and bruises and breaks.

WASH BASIN.  No adjustment here for anyone in a wheelchair.

Installed at a height for someone standing, anyone in a wheelchair has to try to move it at an angle.

Consider this: the waste can is right beside you and you have Dementia, so, it's really fun to try to figure out. 

Washing your hands is challenging because the spigot isn't very long and the handles for the hot and cold water -- two separate handles -- are quite a stretch and you have to lean forward when there's little space to accomplish this "acrobatic feat".

SOAP DISPENSER.  Located high on the wall, to the side and on the back wall with no room to get to it by moving your walker or chair.

It's leaning and a possible fall. But, who takes notice? 

They find you on the floor and it's never noted the challenge with the design and layout of the bathroom is the contributor to the accident. 

THE MIRROR. Someone did think to put it on a slant but obviously didn't sit in a wheelchair while determining the slant as it barely lets you see the top of your forehead, not your entire face and front of your body. 

THE MIRRORED STORAGE CABINET WITH TWO COMPARTMENTS SIDE BY SIDE located to your right as you sit in front of the wash basin.

The only place you can store your toothbrush, toothpaste, denture cleaner, deodorant, etc. 

UNLESS... like we did, we gave Mom a three drawer plastic unit that went between the toilet and the wash basin. 

ONLY ONE COULD BE ACCOMMODATED IN THE SPACE SO, FIRST COME, FIRST SERVED and the other person, no matter what their limitations, had to "make do". 

The cabinet to put your toothbrush, toothpaste, comb, brush etc was also at a height to accommodate someone who could stand. 

If the room is for two, are there two medicine cabinets? 

Remember, these are people usually with changing mental capacity -- how are they supposed to be able to differentiate between "their" cabinet and the one used by their roommate?

The small and difficult to "grasp" with arthritis mini knobs are challenging to get your fingers on and the glass shelves provide an accident just waiting to happen. 

NOW, CONSIDER THIS.  

Each side is labeled according to the bed location: "A" and "B".

No name, just that. 

WE'RE DEALING WITH PEOPLE WHO HAVE DEMENTIA!

People "sharing" items they should not have to share but because the facility is old, outmoded and totally unsafe, it's what there is to use. 

Someone "using" another person's toothbrush or even dentures simply because there's no real separation of place that someone with advancing Dementia can always adjust to. 

And people with Dementia can't always determine what's "theirs" and what belongs to someone else.

THE CLOSET -- a fixed bar far too high for anyone in a wheelchair to reach without the possibility of getting off balance and falling. 

Mom tried using a hanger to pull her clothing down. 

She wanted to be "independent" and to at least get her clothing but what usually happened was more on the floor inside the closet and outside and when she did try to reach for them.

It caused another fall. 

Of course, the facility didn't tell us that was how it happened; while Mom was still able, she could tell us.

Accordian style doors. A shelf up high and a floor down below. 

It was up to the resident to make any "adjustments" or "additions" and most don't have the money, the ability, or the family for this. 

Try to get your shoes off the floor underneath a rack of clothes from a wheelchair or balancing with a walker. 

THE DESK complete with chair without side arms. 

Show me, please, someone in these facilities capable of using this type of chair. 

When Mom lived with us, as Mom's balance and range of motion/movement declined and became challenging, we made sure wherever we went, and especially when looking for Adult Day Care, there were chairs with not too soft seats and definitely had usable side arms for pushing down on and aiding in lifting a body up.

THE CHEST OF DRAWERS -- inexpensive when first purchased, now definitely showing age and wear although not falling apart as in some facilities, drawers aren't "locked in" and can fall out if pulled out too far.

THE BED -- dare you to try to sleep on the mattress that's thin, hard and made out of material, along with the pillows, that takes some time go get used to using for the purpose of sleep. 

NO WAY TO ADJUST THE BED'S HEIGHT by raising or lowering by the patient -- whoops! "resident". 

Yes, that's right, these beds residents lay on night after night are "hospital type" beds. How quickly did you want out of "that type" of bed when hospitalized. Think about spending years there.

Mom had a fracture in her neck and laying in the bed was very painful; she slept every night in the chair we brought from home, the chair we'd bought for her (the one I insisted she have several years before, yes, me the "abusive" daughter called so by the "new friend', Julia, who really provided nothing but took everything she could from Mom and from us).


THE CALL LIGHT  The mandated light supposed to be connected to the wall and connected to the system that alerts the Nurses and the Aides to a resident's need for attention. 

IT'S ALWAYS SUPPOSED TO BE WITHIN REACH.  

We often found it detached and laying in a circular pattern on the bed. Now, Mom couldn't remove it because of how it was attached to the wall and where it was attached. 

But there it was, disconnected and obviously useless in time of need. The question was: Who done it?

THE TELEPHONE You have to remember to dial "9" to get an outside line. Try that one on someone who has Dementia! 

It has the numbers to press but it's an older model phone and there are no adjustments to turn up the volume (something really needed by most residents who suffer some form of hearing loss). 

The numbers are way too small but you're supposed to be able to locate them by "memory" -- again, fun for someone with Dementia. 

You can supply your own, of course.

THE WALLS  -- Any space to hang or display besides just plain old open wall space? 

Most probably this "unit" is bare bones. 

The resident can "display" what they'd like but there's nothing to accommodate any display of anything. 

And, because most rooms have the furnishings (low level dresser and desk) two pieces for each room resident, along one wall, it's a challenge to keep "your" things separate from "the other persons'".

LOCKED DRAWER OR SAFE?  Not in "average" units.

Everything is out there and "up for grabs" and with many advanced Dementia patients, chances are things will "walk" and may never reappear.

FALLS ARE INCREASING. 
RESIDENTS ARE BEING BLAMED.
 
When you point a finger in one direction 
There are four pointing back at you. 

FACILITY OPERATORS TAKE NOTE!

Saturday, March 30, 2024

Personality Change With LBD

Lewy Body Dementia is a very clever disease.
It seems to "wait in the wings", on "the sidelines", giving direction and coaching in the beginning.

As the disease progresses, it begins to become the lead player, replacing the person with its own persona.

Taking over. Becoming someone "different" to the world. 
Being seen in its full regalia, finally, 
by those who care give, those who care about, and those who have the responsibility they've taken on as "Care Giver".

A fellow traveler walking alongside and sometimes running to catch up with the changes, the differences, the needs of Lewy Body Dementia.

Life is Reality when you are fully involved; it's unreal when you choose to put yourself in another place and time.

You, there! 
Who sit in judgment, believe you "know what's best" . . .  
Hand out, reaching in other pockets, always "in need".
Turning your back when others could use your support.

Where are you? On the sidelines? Living far away? 
How often do you visit, make time to stay with a person with Dementia and provide a "break' to the caregiver to sleep, read, go somewhere to walk, exercise or have lunch with a friend.

Tearing apart, blaming, accusing, believing "they" are the cause and not a medical condition with no side path just a road of unknown length and challenges.

Questioning even criticizing telling the person trying night and day to cope, to manage, to ensure safety and well being . . . 

You DEMAND and you ASSERT from your safe and separated "living arrangements". You may even "make a trip" to visit shunning spending time finding ways to really help, maybe delivering a "special photo album" but never coming alongside or offering "respite" by ensuring a break for the real caregiver(s).

Separating yourself rather than coming alongside?
It's far easier to push and shove the "caregiver" around and  always finding fault than to actually participate and give support.

It's never right, never enough and always used to strike out when support and consideration, appreciation are needed.

For years you've turned your back or at least "let another or others" do all the "dirty work" involved in caregiving, walking away, only reaching out when you believed there was "something you could get", you punished anyone who would not give in to your "me centered" demands.

You tear apart the primary "caregiver". Refuse to recognize a person can have Dementia and has had it for some time.

You can't recognize real Elder Abuse -- it's far easier to blame a family member than an "outsider".

You demand and accuse -- so you can feel "excused".

Reality Checklist:

Those who care give for a family member with Dementia face daily mental and physical challenges, illnesses and afflictions.

They stand alone while standing beside and walking along their loved one's winding, steep, and ever changing paths.

Struggling through the present into the unknown of the future,
there is no specific direction and often no markers or guideposts that apply.

You who attack, you who blame and strike out verbally cannot accept there are life changes you cannot control. 

You hold everyone but yourself responsible and accountable to a standard beyond their ability to provide.


You refuse to accept change, believe you can erase the present while not seeing the future if you discredit the past.

You refuse to listen, to become involved or want to take over "from a distance" because your time is so valuable.

It's "their" challenge, "their" problem . . .  if any problems really do exist, you tell yourself.


You twist and turn reality without spending real time with the person who needs the care, without being supportive choosing to attack, criticize and blame.

You visit,  for a short time. You leave. You may be close by or hundreds of miles away from the day to day and the constant fluctuations of a disease you will not recognize or believe is there and another lives daily with the ever changing 
challenges.

You do not tend constantly to the person's physical and emotional needs and the few telephone conversations you have you write off any "challenges" to poor transmission, the person's "hearing", or any one of a number of possible excuses.


You see the past, not the present. 

You cannot cope with reality. 

You create what you need, what you can accept.

Love is blind, so they say. So is fear of loss.


All forms of Dementia including Lewy Body Dementia wear many masks, playing many parts as it moves through the brain and the body causing challenges and removing abilities.

As a society, We do not "connect the dots". We see TIA's, high blood pressure, falls and other "signs" as not being a part of the process of LBD and other Dementia. 

Wake up, get up, take action, advocate, above all realize 
Dementias, especially those less known like LBD, are a
thief in the night we allow to ravage & control when we do not recognize their abilities to tear people, families apart.


Wednesday, March 27, 2024

Family Life Multi Gen Style

 A Penny For Your Thoughts

Old saying, let's up the ante in the first part of the 21st century.

Come on, you can add your two cents worth.

Oops, another faux pas. What's your time worth these days.

Use that as a ruler and measure your current age by your anticipated "end date". 

It's for perspective. It's reality.

Lifestyles vary and continue to change shape through decades.

Living Together: accepted; a common practice. Think "Friends".


Cohabiting without marriage:  a commonality with "the event" being seen as a social rather than "sacred" joining together.


'Weddings" beyond personalized into the "zone" once reserved for specific socio-economic classes or celebrities.


Ceremonies everywhere your heart desires and usually aiming to "outdo" or "one up" to show "waiting was worth it".


Multi-gen families are seen by many as being a practice of low-income families or immigrants who can't afford to live otherwise.


"Roomies" can be male/female/similar ages but NEVER should they be an actual family unit of kids, parents, grandparents.

 

Not for everyone; multi-generational cohabitation requires giving, taking, sharing and caring.


Short-sighted, self-serving, lost opportunities and possibilities say some, more responsibilities shouldered, more "mouths" to feed and unnecessary challenges in "today's world".

 

Listening, learning, sharing, caring, giving, receiving,

understanding growth, development and most of all, aging.


We built an inclusive family with three generations under one roof for four decades.


No lifestyle has guarantees. Life is what you make it.

 

Moving from Chicago to Philadelphia to St Louis (two different locations).


We recognized value, understood inclusion, worked through differences and learned valuable lessons.


From one infant, adding two more along the way, several jobs, a few businesses.

 

What about privacy, intimacy, who makes decisions and who is “in charge”?


Few differences from "regular life"; you reap what you sow.


You learn consideration of others, recognizing and accepting differences.

 

Growth and development, learning to accept and understand change and decline.


Not a “built in babysitter” or someone to “break the tie” in a disagreement.


All ages and stages, all capabilities and capacities from birth until end of time.


It takes a village used to be a common saying. 

 

Understanding one another starts in the home where memories are made.


When we have direct ongoing contact, we learn first-hand.


More multi-gen families might be the answer to halting generational distancing.


We build bridges to connect, not ditches to separate.