When Daughter Becomes Mother

Originally posted April 8, 2013; Mom would pass January 2014

Lewy Body Dementia has been trying to destroy our family.

It's making great progress with the help of people who chose 

not to see or accept the reality of this destructive and devastating terminal disease.

Fast forward with a few steps backward. 

Spent four hours with Mom from five to nine last night.

Had a phone call around 1 PM, 

it was a Sunday, alerting me Mom had fallen in her shared bathroom at the Skilled Nursing Center (SNC).

Was working and couldn't get to her right away.

Made sure she was not injured.

Held my breath wondering what I might find when I arrived.

Falls are common with LBD as the body motor functions & mental functions do not always work together.

Her feet "stick to the floor" (which Mom blames on her "new" shoes; slippers she's worn for many months).

Her arms do not support the shift in weight from wheelchair to commode (and she definitely will not ring for help; they take too long; they're too critical).

The reality is the brain's messages do not always reach their intended functioning part while the brain believes they have and so an "accident" happens because the body generally moves to some degree but not with the support or ability it should have.

There are many reasons for her refusal including the most obvious: Mom wants to retain control of the basic parts of her life and toileting is one of the most basic. 

The diminishing ability and the frequent loss of bladder and bowel function that has been more and more prevalent is probably a sign of more significant physical changes internally.

We've noticed some patterns and try to watch for related developments/causes all without any support from the LTC.

LBD and Dementia raise the level of risk taking we tolerate or allow in our loved ones to try to give them as much "personal freedom" as possible. 

Like holding a child's hand when crossing a street eventually turning loose believing they'll be cautious or turning over the car keys for the first time. 

With a child there are so many "firsts" and so many "what if's" 

With the adult "child" going through Dementia we don't look forward, welcome or anticipate these changes. 

We're on a backward, not a forward journey.

We travel on a roller coaster. 

Speeds and distance vary, no stops along the way

Only continuing into a future of uncertainty.

Some days, even some hours, change and fluctuating abilities cause sheer exhaustion on the part of the care provider. 

You never know what "age group" you're dealing with or what

"level of ability" is actually present.

Last night Mom talked nonstop; knowing the family history so well I heard years and events mixed up, run together, totally opposite from what we'd experienced in the many years we shared together.

Mom didn't recognize me and so she talked to me as though I was someone else. She was not at all happy with "her daughter" that evening so this "person" heard about all the "bad things" her daughter did to her and continues to do to her.

Swallowing my pride, I listened, allowed her to "rant". 

My concerns are the uninformed attendants and those "examining" my Mom who don't know the real family history 

and actually believe these distortions and twists of reality. 

That's where understanding Dementia and especially Lewy Body Dementia are so important.

It was rough. 

Sitting there and having her negate our lives together.

We'd spent almost forty years as a multigenerational family. 

I know I'm supposed to "redirect" her; even when I told her who I was, she would remember for a while and then forget and we'd be "off and running" again.

As hard as it was to sit there and be verbally abused, I felt perhaps she needed to "vent" and blame me for her being somewhere she'd never wanted to be -- a Nursing Facility.

My problem has been workers in the facility and others I've encountered along this walk on the LBD pathway who listen believing what she says describes her life and our relationship.

It also doesn't help to still have to tolerate an abuser who continues to visit my Mom and who I can't stop from seeing her.

A story for another entry. 

It's a nightmare that's worse even than LBD.

Mom inserts words with no relationship to what she's talking about and when one time she realizes her mistake, laughs and covers her mistake by saying how silly she is and how she's just getting older and sometimes her mind just doesn't work as well.

She also believes she recently married a man she hasn't seen for about seventy five years who was just an acquaintance.  

Mom sleeps... a lot.  

She needs help cutting food into pieces and said last night she didn't want help because they cut it in front of her. 

Mom lets me and my daughter do it for her but someone else doing it, as she said, is too much to bear ... being not capable.

She needs clothing paired and not too much in her room or she can't make a decision on what to wear and spends the day dressing and undressing. 

This is a real challenge because she's started soiling and wetting her clothing and if I don't visit almost every day she ends up having very little to wear.

She has "tantrums" where she suddenly gets very angry.

I'm a prime target.  

She cries and "whines" about many things, then suddenly she stops and a few minutes later can be smiling. 

She's somewhat incontinent; it varies but it's becoming more and more consistent; she forgets to put on her "paper pants" and she wipes herself and then uses the toilet tissue as a washcloth on other parts of her body.

This "obsession" with washing started in the last few weeks. 

I've found her stark naked many times in her room or in the bathroom. She might have had a shower that day or not. 

She may have already "washed" for that day or not. 

But stripped down, often without clothing in sight.

Sometimes I've entered, stood aside and watched as for fifteen minutes or longer she starts washing, gets distracted by something (usually it's something she talks to herself about or to her "imaginary friends") and starts all over again time after time after time until I announce my presence and interrupt the endless repetition.

Last night after finally convincing her to eat the food on her dinner tray set in her room because she'd fallen and didn't want to go to the dining room, placing the towel she wanted as a "bib" around her neck and one on her lap, I convinced her to eat.

Another Lewy Body Dementia "sign", the tremors in her hand cause many bits and pieces she finally manages to get on the soup spoon she usually uses to feed herself to fall everywhere. 

After tearing her egg salad sandwich in half and turning away to reach for something, I turn back to see her with half a sandwich in hand using it as though it were a bar of soap and rubbing it all over her other hand and arm, switching hands and doing the same to the one she'd originally used. 

What a mess!  I've learned not to "react" to these totally incorrect actions but egg salad isn't exactly easy to control as it drips and drops all over the tray, her and the floor. 

Mom didn't even realize what she'd done but when she finally felt "wet" and "sticky" she asked why and when I told her what she'd just used to "clean herself" wasn't soap but the sandwich, she laughed and just went on to eat and continue talking -- often with her mouth full of food.

Mom shouldn't dine unsupervised but the facility can't seem to understand, doesn't want to help her or is short-staffed.

 (more later about the financial gain of SNC's in not fully recording or evaluating various physcial and mental needs) because some days Mom's behaviour seems quite "normal" even if her ability to self feed is compromised.

My Mom. My amazing, self sufficient, "rock" in my life.

She who held everything together.

The pattern for becoming the woman I am. 

My "rock" through many of life's hardships.

Slowly disappearing while I'm focused on learning where this road may lead so we can both walk down it together, supporting one another as we always did.

So hard to watch; to listen to; to talk about. 

So needing to share this journey others seem to pass by.

So challenging to discuss perhaps because it's so "personal".

Specific descriptions of behaviour shocking? 

Not "polite conversation"? 

If only someone had told me exactly what could happen.

These "non polite"  and "times of hardship" situations would have been less shocking and could have been handled better. 

Mom's facility doesn't "share" this information.

I have to see it to know it's happening.

I see sharing these most challenging behaviours and experiences as a guide to living with and surviving a loved one's journey into an abyss so dark and tumultuous that any light provided slows the descent and adjusts the turmoil for those who are slowly being left behind, in the dark and without the amazing person who's shared their life and their love. 

Mom continues to teach me as she always has. 

The only difference is the child is now the mother.

Adjusting, finding ways to understand.

Believing tomorrow will bring a better day when today has drained me through work, caring for Mom and continuing adjustment to becoming a widow.

You, my readers of today and tomorrow, may know more and have medical support as the years I'm in do not provide this knowledge and give no real comfort. 

Note: July, 2024. More than ten years have passed.

Change? Not really. More complications and challenges.

Long Term Care has advanced and stagnated.

Generally, the more you pay, the better the care -- not always.

Take heed, dear readers, as even with the knowledge, there will be those among you who will not comprehend the heartbreak during and the losses along the journey until your walk begins.

Beginning The End

I saw it happening. Didn't want to believe it. 

Shared with family. Can face when not facing Mom.  

Her passage into the final stage of Lewy Body Dementia--like other stages -- slow at first, highlighted by major changes, not always visible, often seeming to reverse. 

We're not certain how far into this stage she's travelled.

As we see the "new stage" we wonder when it began. 

I think we're seeing it when we're really into it because the changes are more noticeable and seem to be more prevalent.

How far along are we on this journey with Mom?  

Are we really slipping into the final final stages?  

SNC Nurse Manager called and said she thought Mom was ready for Hospice. 

I haven't cried for a long time.

Not  since my husband's death have I really sat down, tears flowing without any ability to stop them. 

I started to cry, I was at work, 

I hid the tears until I could be alone.

We were unable to visit for two days. 

When we arrived, Mom was slumped over.

She was  almost falling out of her wheelchair. 

I'd seen other residents this way. 

She couldn't communicate. 

Just two days had passed.

Mom wasn't communicating as much; she was talking before. She was eating or could be encouraged to eat.

She held and was able to finish, both pieces of an egg salad sandwich.

Now she looks as though she's lost at least twenty pounds.

Why didn't I see this extensive weight loss? 

Was it because her clothes are the size they are?

 

Some blame goes to the Nurse Manager.

She said Mom was holding at the same weight as always.

Just a few weeks ago.

Truth or fiction. We relied on whatever we were told.

Could Mom have lost that much weight without our seeing it happen? 

Yes, we'd both been busy.

I now had a full time job.

My daughter had a very busy part time job.

We weren't stopping by every day. 

She was eating we were told

She ate well even when we weren't there to feed her.

False, misleading, deceptive; not reality.

Meant to "pacify" members of "the family".

They "could" feed her?  It was obvious they were short staffed.

If loved ones weren't there, a "resident" was often "on their own.

Mom and others could be seen using their fingers.

Not able to use a fork or spoon.

From potatoes and gravy to veggies like corn or peas -- driven by the need to eat.

Tears come to my eyes even years later when I'm re-reading and feel so guilty, like I abandoned my Mom, even if I was working two jobs, trying to survive, desperately believing we would be together, the three women in the family -- again. 

Hospice. It's such a final step. No matter what they tell you about people going "off" Hospice.

At Mom's age, this is most probably not going to happen. 

I don't like the limitations. 

If we accept Hospice we can't take her or send her to the hospital for an infection.

Mom and so many others have had UTI's.

I see UTI's as not something that has to be a part of growing older and incontinence. Am I being realistic?

If those who are responsible for her care checked her more frequently and didn't let her sit in her excrement or urine, I don't think UTI's would be so frequent.

I see how short staffed they are; I hear the men and women beg for someone to take care of their needs. 

I hear an LPN tell someone to "be quiet" and "I'll get to you".

Twenty minutes later she's still distributing medications and no one has helped the person who called out.

If Mom's Caregivers at the SNC watched her as closely as we did, they'd see the changes, catch the eye and other infections. 

Most of all, they'd monitor her illnesses/infections as a medical facility, which in Missouri a Skilled Nursing Center is, alert the Dr in charge the medication did not work.

We can't not try to help her. 

Mom's wishes have always been to seek medical help for infections. 

We'll make the decision and take her to the hospital -- even though she'd just been about ten days ago.

I'm walking the road with Mom and I'm not that far behind where she's travelled even though Mom had me later in life. 

I'm afraid for her. I'm afraid for me. I'm afraid for you.

Changing Generations

Just Yesterday, High School and College Graduations, Speeches and Awards, Dreams and Desires.

Where will they be ten years from now?                                                       Graduates believing they can define their lives and segment?

Filling spaces others left or moved on. Wiser? Encouraged? Disillusioned?

The AI Clock has been ticking and taking.

How adaptable are these "graduates" with some experience?

Still pursuing "more" education, certifications, internships.

Perhaps a few years of experience, finding their skillsets once cutting edge are bordering on obsolescence?

Keeping Up With The AI "Joneses" will be far more challenging than keeping up with the humans.

How many burned out? How many just gave up?

Trying to use what's now obsolete education and training that used to be a building block but now is simply a series of platforms leading to a place where jumping off occurs.

(History repeats itself when AI went from a dream to prototypes to every school, library, business and almost all homes.)

ADAPTATION NEVER ENDS.

Boomers were stuck in a continual need to change to increase income, to move to gain better possibilities and to realize acquiring and adding from household items to children, was a major decision more complex than additional costs.

Today, seen by many as "affluent" who were actually only moving into a slightly higher socio economic class when they moved from an apartment to their first small home, added family members and possibly moved again with a slight upgrade. 

Then, for some, the "biggie" -- buying that "forever home".

IT'S THE ONE THEIR SECOND GENERATION REPLACEMENTS ENVY AND WANT "TURNED OVER".

This "Generation" is often the same ones whose parents pushed their parents -- The Boomers -- for "family vacations" where the "well funded and invested" Grandparents footed the bill for them and their parents.

Now, they have been entitled for decades, got an education, went into the job market, decided they could get a "hustle" and made some good money -- for a while. 

Whoops! Not really a business person. The shining light of so much coming in overshadowed the glare of what lay in the shadows of "reality" business organization and development.

GEN X. What a name for a group of humans!

Is that "X" marks the spot where we fell asleep at the wheel of life and so many passed us we could barely catch up let alone get ahead?

At least previous Generational Titles were a little more creative!

That's the challenge, really; change takes decades but what it does is often bypass some generations, setting aside others.

Grief Wears Many Faces

Grief wears many faces -- the everyday, the horrific loss, the time past and the faces presented to the world in each human encounter experienced today, tomorrow, everyday.

Death is one form of Grief. It seems to be the most challenging because there is no hope in the here and now for change. 

Death, after all, is the final frontier and not reversible.

 I met a woman who was working through her grief of a couple of years. Her "friends" keep telling her it's been long enough, she should "do other things" of course, they tell her what she shouldn't do, too.

She had a very long marriage, as she said "good pair" who made their lives together and survived decades of challenges.

Not to be minimal, but think of it as having in your life anything, human or an object, when it's "gone",  you "miss" having it. 

The degree to which you miss this object is often associated with the length of time, the value and the part it played in your life. 

Well intentioned friends and acquaintances often do not grasp the level at which the loss is experienced and for how long.

Grief has many "faces" to the world:

Some had less than good experiences in their relationship and so the "passing" may even be a relief but reflected to the world as one of their having "adjusted" so well, so quickly as they moved on. 

It's different for everyone; don't be quick to judge, to approve or disapprove; it's their life, not yours.

Some find a need to replace or restore their lives through finding another to share the time and reclaim life as they knew it.

Some bear the loss seeking solutions along the way to understand, comprehend and manage a new, yet unwanted, life beginning.

Others have been affected by more than just the death, illness, loss -- they are struggling to move forward while most people walk around these individuals, some offer support of one kind of another, most go on living their lives giving their support or encouragement when they have the time or when they come in contact with the "bereaved".

Why do we only see grief as being a "deep" feeling and if someone doesn't "display" this form of grief/sorrow, they are heartless, uncaring and unfeeling?

Some of us hide grief created by the actions taken by someone in their life that aren't associated with death but have the same effect. 

Realizing responsibilities must come before self focus.

Some cannot accept actions they took and while regretting privately actions, words or deeds, lack the courage to acknowledge and instead use this time to accelerate attacking and negating.

Children who remove the ability to talk with or visit grandchildren because they cannot resolve differences through active listening and engagement in resolution processes or take responsibility for years of abuse they did prefer to shift and create blame in another.

Parents endured behaviours from these children over many years and now the "child" uses the "ultimate weapon" -- denial of the only thing they really control access to believing they are "winning" a "battle".

How very sad to use human beings in this way. 

There are, of course, valid reasons for denying contact including physical abuse but to insert another human being into a situation where you cannot face the challenges in the relationship you've created does not resolve the situation and only adds "fuel to the fire".

Sadly, these grown "children" pick up their marbles and go home when they cannot get the other person to follow their lead, to do what they want and to give up whatever the other wants.

They are planting the seeds of a tomorrow when their children will be adults and will have the ability to question and possibly put into practice what was done to them on the real perpetrators.

They have struggled in life facing and owning their negative actions and often hide behind masks they create to hide the reality of what they've done and continue to do. 

To the world at large, these providers of grief may appear to function normally, possibly even exceeding in areas, but in reality they are deeply troubled individuals who need to face the real problems in their lives, not those they "identify" or replace what should be faced, what should be resolved.

The definition of grief that includes "trouble" and "annoyance" I would expand and add "a force that weaves into and around the life experience causing unforseen and unanticipated disruption and potentially unreclaimable losses."

INTERESTING COMPARISON:  I've been writing about the need to redefine or rexamine DEMENTIA and recognize it's not the depth of the disease, it's the impact the disease causes in all its stages.

THIS IS GRIEF'S DEFINITION AS WELL.

To believe Grief starts with death and over time subsides or goes away is as false, misleading and deceptive as believing the only kind of Dementia is Alzheimers. 

As for me, I've chosen not to accept Grief as others define the process. 

Has Grief affected me? Absolutely. 

Does Grief rule my life and control me? Definitely Not!

It's understanding where you are, where you need to be that becomes important to allowing for grief but not succumbing to it or building the forcefulness of its impact on you.

I've lived believing each day I face choices, make decisions and continue the path with those whom I love and loved, walking together even though we're apart.

Many days, many years that have followed have not been pleasant, enjoyable, welcome; many have been devastating, challenging. 

We, you and I, decide each day how we will move through that time, when we have moved forward and to what point without someone with whom we shared and may still have or may choose to place in a different perspective, a life bond.

Grief is personal. 

Grief is not the feelings of a friend, acquaintance or family member. Grief can be shared but grief is unique to all it affects.

We, you and I, can find a small speck of joy or simple positive thinking in the deepest of life's challenges.

Grief, in any form, is natural. 

You have the personal right to adjust, to find relief.

You're allowed to change your focus to a positive life movement. Society no longer dictates a specific time or dress for mourning. 

Grief. Mourning. Adjusting. Living. 

It's true life is never the same .

It's true life would never be the same any way.