I posted this under the string about NPH, but I didnt hear from anyone. And I know I haven't reached out to all of you again, and I am sorry!!!!! I want to!!!!

Mom fell New Years Eve, had a TIA, admitted to the hospital. The released her with orders to be up only with assistance, and to have alarms put on her bed and chair.

The problem? She has a mind of her own!!!!! She fell with my husband in the room - that wasn't good enough. Someone's hand and eye has to be on her constantly!!!!

She is at my house today, and even though she knows she is a falls risk, while I was at the computer, she walked to the other side of the house without her walker! "Well, I have to learn to get along with it!"

She did NOT comply with the alarms, she will NOT comply with being in a walker, she will NOT comply with calling for assistance when she needs it, and she won't even comply with her walker. Why? SHE KNOWS BETTER THAN EVERYONE ELSE. NO ONE IS GOING TO TELL HER WHAT TO DO. UNLESS SHE IS PUT IN RESTRAINTS, WHICH I WILL NOT ALLOW, SHE WILL GET UP, AND SHE WILL FALL.

Her judgement is too poor, and her walking is too poor. I feel that mom is a walking time bomb.

Seriously, I was just in the adjacent room to her, and she took off w/o her walker! My husband left her side just to hang up her coat, and she falls!

That is why the doc suggests alarms, but she disconnects them! I dont blame her - how demeaning and limiting.

I feel like now, its just waiting for the next fall, perhaps a minor one, perhaps a life threatening one. Unless I hire a caregiver to sit in the same room as her, eye balls attached to her, and pin her down when she has to even go the bathroom, mom will NOT be safe.

Mom is too feisty, too independent, too headstrong. Always has been. On top of that, her dementia and poor judgement. What am I to do?????????????????????????? I feel that even any precautions I put into place, will not save her. She would never tolerate a caregiver, or even me, sitting in the same room with her all the time.

My hands are tied, waiting for the shoe to drop.

Plus, my MIL has had an accident, so now she is with us, and its back to two walkers, two mom's on the fritz.

Lord have mercy, what am I do with mom???????

Thanks, Sandi,

Yes, I think it is so important to preserve these memories - for future generations, and our own family heritage. Mom still has that same spunk, and I love her for it. Who she was at age 20, is still that same girl.

I think we have to "get" those stories while they are still here, too. Yesterday mom and I were on an outting, and I got another little glimpse, revisiting her work as a maid. She came back to the farm every summer, though, to help out at home. She told me that when Daddy came, she would sleep on the sofa bed, and she would set up some quilts on the floor for him, next to her! Her mom didnt like that, but she went along with it (my Dad was about the most noble man in the world). She says they used to talk walks in the woods next to the farm, and that worried her mom, too - but they just sat on a log and talked. I never heard that story before!!!!!


I told her just yesterday, that she is that same spunky girl who ran away with the polka band. It gives her a "vision" for herself, connects her 89 year old self with that 20 year old, when she feels that "girl" is long gone.

Yes, write those stories down, even if you don't have the gift of writing.

JJ
You can be the one to take care of those memories, what a well written story! Someone has to remember. I felt sorry for her mother, getting left with all those chores.

Have you read Breaking Clean, by Judy Blount? It's a true story of ranch life that I never thought of before. You could write a book too!

My mother told her old stories so many times that we swore they were indelible. They weren't. Maybe they will all come back to me when I'm 80.

Now I just miss her existence, I wear her silly hats skiing, and want so much to just be able to hold her sweet being in my arms again. Maybe I need a job in a nursing home, I want to adopt some demented old people who can't remember being loved.
Sandi

JJ, LUV your writing style!

"They knew that although her midnight escape with the Polka Band was a mere three weeks ago, there is more to this story, and it was about to unfold that very night."

Oooooooooooo, the anticipation! You had me hanging on every word!!

So, your Mom is MILDRED????????????????? Oh wow, this is way too cool!!

Love it! Love it!

Javajunkie, why would you ask such, I did believe the story line but wanted to know if it was something one in family experienced.
I think , maybe, I had better allow all to experience better days.I can see tones changing and I do not want to enhance anything.Spring is just around the corner, the days are longer and soon nature will come alive.

Oh man, JJ - I gots goosebumps!! WHatta WONDERFUL story!! I wish you would submit it to Reader's Digest where it could warm more hearts and hopefully give some courage to folks who are chasing their dreams!!

Thanks so much for sharing it with us here!!

May, why would you ask? Yes, the whole story is utterly and totally true. Does it seem unbelievable to you?

Java junkie, great writing.Was any of this based on true facts.

Mom's Buddy,

If you REALLY want to hear the Polka Band story, here it is! Its long, but I had so much fun writing it.

It's a little scary, putting my letter "out there." I know some people may really disagree with our decisions. (I hate disapproval, even from you guys who I've never met!!!) But I do think its best, and you guys are always so loving and supportive.

A toast - to the woman who aint no panty waist.



My Mother Ran Away with the Polka Band

It was 1937, Owosso, Michigan. Mildred was less than thrilled with life on the Farm. The hard work – plowing the 50 acre farm with a team of horses, bailing the hay, milking the cows (although it was hard work, she confesses to singing to the cows as she milked away, to soothe and relax them), gathering the eggs, working the garden, helping in the kitchen. They were poor, although she knew no other life. It was the depression, and it was “Make due,” or “Do without.” With no running water, they pumped and heated water to wash dishes and wash clothes. Even for taking a bath, water was pumped, carried, heated on the stove, and then the bathing ritual consisted of chasing everyone out of the kitchen and submerging oneself in the large aluminum tub – maybe only once during the long winter. Although Mildred was a hard worker, it was a rough life.

Now 20 years old, Mildred was also very concerned about finding a life mate. The problem was that she did not like Farmer Boys! She wanted someone with a little more class, treated her a little finer, and could offer her a life different than the one she was already living. It irked her that they never picked her up in their car, or even paid for her to get into the dance. Their idea of a date was, "Meet you here next week, Mildred?" She could see her future laid out before her: A farmer's wife...laboring from dawn till dusk...milking cows till arthritis prohibited her. With TEN kids running around shoeless.

But Mildred was not to settle for this life. It was early November, the fields were bare, and harvesting season was over. She had completed her obligation to her family for getting the summer’s produce dried, canned, or brined. It was a Saturday night like most others, and she went to the Slovenian Hall to dance and mingle, and to enjoy an escape from the routine and monotony of home and life on the farm.

What she did not know, however, was that night, the course of her life was about to be changed forever. After a few whirls around the dance floor, she cannot help but notice that the band is from Cleveland.

“Cleveland....mmmmm...." she muses to herself, wondering what adventure life might hold in the big city. Her sisters, Pauline and Mary were already in Cleveland. She could hardly believe her own impulsivity, but she was being magnetically drawn to speak to the band players. This was the chance she'd been waiting for!

"You guys from Cleveland?"
"Yep."
"Would you be willing to take me there with you?" (She could hardly believe her own ears.)
"Yeah, sure. We're leaving tonight after the dance. 11:00. Can you be ready?"
"Yes, I think I can!"

Impetuous Mildred, dashes home quicker than a bolt of lightening,

"Mother, I'm going to Cleveland! Tonight! I'm leaving with the Polka Band at 11:00!"
"Mildred! You can't!!!"
"Mother, I must! And I am going!"

She packs a solitary suitcase and puts $10.00 in her purse. Her distraught mother pleads again for her to stay, most likely remembering when she was the same age, waving good bye to her mother as she said good bye to her family, her country, bound for her dreams in America with her new husband. It was an arranged marriage for her mother as they passed through Ellis Island together. She never saw her mother again. They shed tears, they hug goodbye, and then Mildred rushes back to the Slovenian Hall before the band departs.

"I'm ready!"
"Hop in!"

Mildred's innocence and naietivity precede her, but so must her guardian angels. She's prayed for years to find the husband of her dreams and to leave the farm. These prayers must have surrounded her as she fearlessly piled into a car with 5 strange men, the Polka Band players, squished in the middle of the back seat between two of them. (Years later she shudders to think what might have happened to her, but thanks God she was treated with respect and taken to Cleveland without incident.)
They drove through the night. The sun was just rising that crisp November morning when they arrived in Cleveland. Mildred hops out of the car, and the driver held out his hand for payment for the ride.

"Ten dollars? You mean we drove you all the way to Cleveland, and that is all you have?"
"I'm sorry, sir, but that is all I have,” and she empties her purse of the only money she has, and yet a small token for the freedom and new life awaiting her!

A groggy but excited Mildred arrived at the doorstep of her sister Pauline’s house, who was older by 10 years, the sun just peeking out of its nightly slumber. Pauline came to the door, still in her nightclothes, and gasped to find her "baby" sister at her door! The two sisters embraced and the midnight ride with the polka band story was told. Pauline was ecstatic at her sister's bold decision to run away from the farm. After all, by age 20, Pauline had been married a couple of years and already had a baby! Worried that her sister might become an Old Maid, Pauline eagerly sought to help Mildred seek her “flame” and fortune in Cleveland. As all good sisters do, they went shopping for some stylish clothes, and Mildred looked in the Cleveland newspaper for available work.

Being very skilled in the home and kitchen, Mildred quickly found a job working as a maid. She was paid $6.00 a week. The mistress of the house trusted Mildred implicitly – they loved her. Although a family of “means,” they took her in as a daughter, and entrusted her with the running of the household. They especially loved her cooking! It was a Jewish family, and Mildred was coached on making kosher foods, as well as festive foods for their holidays and Sabbaths. A mere three weeks after arriving in Cleveland, she was given the enormous task of cooking TWO Thanksgiving turkeys (one for that day, another for the next). Returning home to her sister’s home exhausted, Pauline tells her sister about a gala Thanksgiving Dance in town.

“I’m too tired, Pauline! I’ve been cooking and serving dinner all day. I can’t go to a dance tonight!”
Pauline insists, “You will find someone nice! Go, Go!”

Reluctant, she does go. With tired feet, Mildred stepped into the streetcar, thoughts mulling through her mind. “I wonder if they liked my dinner today. The turkey did turn out nice, but I do hope they were pleased with the way it all turned out.” She begins to turn her mind to the dance. “I wonder who I’ll meet. These dances are so different than the ones back on the farm. Will these boys like me? Do I just look like an old farm girl?” But the angels must have been rejoicing. They knew that although her midnight escape with the Polka Band was a mere three weeks ago, there is more to this story, and it was about to unfold that very night.

While Mildred had been praying, hoping, and looking for the man of her dreams, unbeknownst to her, a certain young man had been praying the same thing. Bill Litschert, unlike Mildred, had grown up in Cleveland Heights, and he was now an aspiring young artist. He was working as an apprentice at the time, learning what was to be his lifetime profession as a Commercial Artist.

Bill and his buddy bantered back and forth where to go that Thanksgiving night. His friend wanted to go to one dance, but Bill insisted they go to a particular hall. Bill had a premonition, a revelation he believed was from God, and told his friend as much - “You will meet your bride tonight.”

Bill spotted Mildred, admiring her for quite a while before gathering up the courage to ask her to dance. She was so beautiful! He admired the way she stood – with grace and style. From the very first dance, each of them knew this “someone” was very different than the other “someone’s” that they had met before!

Ironically, the girlfriend that Mildred was supposed to meet at the hall never arrived, and she was left without a ride home. The street cars had stopped working for the night.

“Oh my, oh my! How am I going to get home? I have no money, I have no car, and I have no one to take me!”

Mildred, a proper young woman, but still bold and yet trusting, she asks Bill, “Will you drive me home?”

Once again, hopping into a car of yet another mysterious man, Bill drives her home. But unlike the ride with the polka band, this ride was magical. This ride was the first of thousands of rides, this dance the first of many dances, and the first of many magical moments that were to last forever.

GREAT letter, JJ! I hope the folks at the AL will understand where you are comin' from!

Ummm... can we hear the story about “My Mom Ran Away with the Polka Band”?

Yeah, JT! Haven't seen you post in a while! Good to hear from you! I love your quote. I've never read anything from Chesterton - any suggestions where to start? HOw about you Sandy? I like your quote, too. They both make you think. Was he a friend of CS Lewis? I am more familiar with him.

Ah, G.K. Chesterton. What a wise guy.

Our family motto has always been:

"An adventure is an inconvenience rightly considered." (G.K. Chesterton)

Not relevant here, but it usually is on a daily basis anyway.

I'm enjoying the mental image of Java Junkie's spunky mom ... wrapped in bubble wrap!

Javajunkie,
I'm so sorry for you! I think Mom's Buddy said what's on my mind best.

People fall VERY FAST and there's nothing you can do even if you are standing right next to them! I watched my mom take three bad spills when I was less than three feet away! It's just horrifying beyond words to watch and not be able to react fast enough!

Once she was going to sit down and instead threw herself backward into her swivel rocker/recliner, she missed by a little bit, it swivelled and dumped her into the corner on top of her sharp metal exercise foot bike.

I think there are a couple things you can do. Try to make sure any bladder irritation is cleared up at all times so she won't ever need to get up at night.

Be very careful about new prescriptions. Right before Mom fell and broke her hip at the ALF I had gone to her Dr and gotten something for her itchy eyes, again. So I picked it up at the pharmacy and handed it unopened to the staff. Little did I know it was an antihistamine pill, Atarax, not the ointment we usually got. She probably wouldn't have fallen on her way to the bathroom at night if she hadn't been sedated.
Not that night anyway.

Mom was too demented to remember any warnings or verbal instructions to use her walker or her cane, or that she just fell an hour ago. Bless her heart, poor thing! I miss her so terribly much now and looking back I know the mental hoops I made myself jump through trying to think of some way to make her all better, for 11 years I wracked my brain!!! I even dreamed recently that she was talking again.

Here's an old quote I suddenly remembered.
"There are many angles at which one can fall, only one at which one can stand." G.K Chesterton
It's refering to spirituality really.

Best wishes to you and your family,
Sandi

Very nicely done!

I'm a bit amazed that they don't already have an excercise class, though. The facility we're using has them for all levels (independent, assisted, skilled nursing) and I just presumed that this was the norm. Good suggestion that may benefit others!

Ok, guys. Here is a letter I finally sent the Assisted Living where my mom lives. I do feel it was the right thing. Thanks for all your support and ideas in all of this. After I gave this to the administrator, a wonderful man, he called me and told me he would have made the same decision.

Dear Jeff, Pat, and Denise,

Thank you for meeting with me last Monday, January 9, to discuss the problem of my mother’s falls. I appreciate so much the personal care and concern you all show for my mother – really, more than you can know.

As a result of that meeting, a decision was made to purchase an alarm pad in order to keep mom safe. I had come with a list of alternative ideas, but you felt strongly an alarm pad was necessary, and as I trust and respect all of your opinions - and you seemed to be so unanimous - I agreed. We presented this to mom, and she also reluctantly agreed.

As we have had time to think, talk, and pray about this decision, our entire family is really very united about NOT using the alarms. Mom does not want the alarms, and she will be very miserable and feel very restricted. My mom, as you know, is a very independent woman, and we feel strongly that her feelings and wishes must be taken into consideration.

We recognize that not using the alarm puts mom at some additional risk, adding that alarms do not guarantee she will not fall, either. But we accept this slight additional risk, and so does mom. Clearly, Mom would rather have her freedom, including the freedom to fall, then to be put under “watch” and restrictions. Her wishes are not irrational ones.

I hope that this does not put undue stress upon your caregivers and staff, and would want to know if there is any resentment about this plan, as I certainly would want to work towards a plan that would be mutually acceptable if possible.

In lieu of alarms, I would suggest the following measures to maximize mom’s safety, and would covet your expertise regarding alternative safety measures as well.

1. Per her physical therapist, the staff should continue to cue mom about proper use of her walker and walking techniques. For instance, if she is walking too far away from her walker, kindly and gently remind her.
2. Consider instituting an exercise class (an arthritis class was mentioned by her PT, or Tai Chai, or whatever is thought will benefit my mother and many other residents) to strengthen, improve balance and flexibility.
3. More frequent checks on my mother, popping in her room to make sure she is OK.
4. If it is observed that she is having a difficult time walking due to fatigue or weakness, encourage the use of the wheelchair
5. Consider walking besides her to meals and events
6. Frequent blood pressure checks – her physician has ordered this to be done 3X a week (please check to see that this is being done)

Enclosed is a story that my mom told me – a story that was only unveiled within the last few years! I titled it, “My Mom Ran Away with the Polka Band,” and really, if you choose to read it, it tells you everything you really need to know about Mildred! She is one spunky gal, determined, bold, and yes, sometimes impetuous! She was, and is, determined to live her life with courage, gusto and adventure, taking measured risks to live the life she really wants. She is my hero, in every sense of the word and I adore her.

Please let me know if this will be a plan that the Gardens is willing and able to implement. If you have concerns, I invite you to call me anytime.

Thank you again very much for your excellent care – emotional, physical, and spiritual – of all the men and women of The Gardens of Western Reserve.

Sincerely,

JJ, the only thing I can think of to get the point across to your mom is to have another meeting with docs, NH folks and family. EVERYONE needs to say "we will not accept this patient without alarms to help with her fall risk." So EVERYONE can be da bad guy... OR tell her that either she has to have the alarms OR she can wear protective gear like they wear in martial arts - foam headgear, armpads, legpads, rib pads, mouthpiece, etc. - and let her make the choice... BUT... I have absolutely no confidence that this will make any difference in her behavior! I think her judgement is impaired and she will continue to circumvent the alarms or remove protective headgear, etc. She just does not want this, period. At some point, you have to respect HER decision, however demented it may seem to thee & me!!

Our parents are all gonna die of something... falls are a very common way for the end to begin. You can take precautions, but NOTHING is foolproof. As y'all know, a fall is what put my Mom in bed for good and if it had not happened on THAT particular day, it would have happened another time and the consequences might have been even worse, 'cause she was NOT gonna cooperate with the safety stuff. So pretty much, unless you are willing to drug yo' mama into oblivion or have her tied into a bed, you cannot prevent ALL falls. There is no reason to feel guilty about this - you are doing all you can do. Sweetie, something is gonna pull the curtains on your delightful, wickedly funny mom and there is nothing you can do about that either. You have gone to extraordinary lengths to ensure your mom's care and safety but you are not a god with supernatural powers which is what it would take for anyone to do more than you already have.

The long and the short of it is that getting old and feeble is not pretty and it mostly is no fun for anyone concerned. You are spending so much energy on worrying about something you cannot help that you may be missing out on some of the great sweet stuff because of this "fall" battle.

Personally, I would do all I could, then make a peace with it and never bring it up to her again. It won't do any good and will only make everyone crazy. I feel for ya!! Big giant hug to you

The alarms don't keep them from falling anyway. They just tell the attendants that they have gotten up, and in all probability by the time the attendant gets down the hall to her, she'll be on the floor already.

The only other option would be to tie them down, and who wants to live like that? Your mom sounds a bit like my MIL. She's got awareness, just poor short term memory and impaired "executive function."

I never thought of it like a hospice mode, but I guess it's a bit of that idea. I don't think that anything we do is going to make them truly happy. As my grandmother used to say as her friends started declining, "It's just a sad time of life." My MIL thinks she would be "happy" to be living in her house alone and still driving her car. (shudder) But they have given up so much: their homes, their independence, their privacy. I don't find it unreasonable to allow them to retain at least some of their dignity, at at least preserve the illusion of it for them.

Is it possible that once this issue ceases to be a power struggle, she might quit being such a pill about getting up?

We haven't had a fall in nearly a month, but I couldn't tell you why the change unless it's because she got tired of having to be picked up from the floor. Or it could be she's gotten more resigned to her new living situation and started making more friends. Or it could be her remeron has started kicking in. Her doctor thought that some of her fussiness might be anxiety and depression. Maybe a bit of all of the above.

Now she's turned her attention to complaining about the food and the fact that they've been giving her graham crackers for a snack while the "everybody else" gets "real" cookies. LOL I bought her a box of her favorite cookies the other day and we "smuggled" them into her room in the seat of her walker. In reality, the nurses know she has them because I told them, but they play along. It's okay as long as her blood sugars don't get out of whack, and for some reason it makes her easier to get along with if she thinks she's getting one over on them. Is there some little area that you can help her to "cheat" on to distract her, and make her turn her ornery streak toward something less dangerous? Might be worth a shot anyway.

Oh when she fell Christmas day I was in the room and had just gone to the dresser behind her to get a new sheet for the bed. Like you said they need eyes constantly

Java Junkie your mom sounds so much like my mom was She was an expert at disconecting the alarms and saying she didn't do it. Forget about the walker too. She was not an old lady she would tell me and refused to use it except to hang things on it. We ended up taking everything out of her room after a few falls left black eyes and nasty bumps on her head. I was finally able to get a hospital bed but in the beginging she would just get over the bars anyway. She fell Christmas morning off the camode she was strapped into. She didn't want to be on it and even though she can no longer walk somehow managed to tip it over. I wish I had answers for you. The best thing to do is to try to child proof the house as much as you can. It's an ongoing learning experience that each day, well even somedays each hour brings new challenges and solutions hopefully.'

quote:

If she falls, she falls. Extending her life by making her miserable just didn't seem right to us.

Original Random Person, I am intrigued by this comment, as it captures the feelings I have, and yet struggle with.

In that sense, I would be operating out of almost a "hospice" mode - of emphasising the quality of her life, rather than the quantity. Of making her happy, and not doing "everything" to save her and prolong her life.

Of course, I want both - for mom to be happy and safe, but she aint gonna be happy with an alarm, I will tell you that right now.

Today, she marched down to the nurses and admissions person, and told them so! "I don't want those alarms!" Althought they told ME she has patient rights (she has not been declared incompetent), they are telling HER, "You daughter says so!!!" I tell her, "They are making me the bad guys!!! The doctors say so!"

Yet, I know if I told them NO ALARMS. SEND THEM BACK - they would. It is consciously and purposefully putting mom at a higher risk for a fall, but the alarms are NO guarentee! She can get up any time, and will get up. It will drive her buggy, and to despair.

Janie, I know what you are saying, that I cant BOTH trust her judgement on it, and then say she is demented. I am not trusting her judgement - she cannot make good decisions for heself. But I can trust her wishes.

You know this decision is about as hellish as whether to have her stay at the AL - and even more so.

My husband says its just as merciful to make her happy as to try to keep her safe with alarms. It sure is a catch 22.

Anyone else out there ever use alarms?