Most if not all of this blog was dedicated to getting my Mom's story and end of life journey with others in the hopes that something in the posts would be helpful. I'm adding this post today after a break in posting to say....it has been now SEVEN years since these blog posts brought more emotions than they do now. I can say, though with much assurance that even though the pain of Mom's tragic story is not as severe, the hurt is still here, I've just learned a more thorough way to put things in perspective. If you have read the previous posts and are now reading this one, I only want to assure you that while time may not erase a tragedy, it does have a way of helping people to manage the memory...or at least it has me. After a while of being so sad or angry or frustrated, it is possible to have a memory where the emotions are not as raw and severe as they once were. And that's a good thing. It has the potential to not be so all-consuming and allows me the freedom to live more in the present. So...I won't keep you any longer. I hope and pray the best for you if you are going through a similar situation and trust that you find peace. Or if you are facing some of the situations that I described ( as in finding a care plan) I pray that you can find the resources that will serve your loved one well and ultimately lead you in the best direction for all. May you and your loved one age well!
Very early on (because there is only a 2 year window of time to get this done), we sought out counsel. So where do you go? Why the internet, of course! But even that can prove to be both a challenge and be disappointing.
ATTEMPT for Representation #1
We looked online for lawyers who had experience in Nursing Home negligence cases and wrongful deaths to locate one here in South Mississippi. To his credit, he was at least honest with me. He was a small firm and did not have money to pay the professionals who would have to testify and while he would represent us, we would have to foot the bill for those and that it would be costly. He also was not familiar with a Hoyer lift ???????? Big red flag. So, after a lengthy phone conversation, his name was placed in file 13. So now what?
Attempt for Representation #2
Sometimes I am not sure what details I can give and what I have to keep private, but I will say this: We did find a very LARGE group that had someone meet with us downtown in Mobile and he was a part of that firm that is "_____ & _____for the people". You've probably seen their billboards...in more than one state for sure. So when we were given an appointment, we gathered what paperwork we thought we needed and had, to be honest with you, what we thought was a very good meeting. They were a large firm and had the funds to pay for all those "expert" witnesses and would do a thorough investigation themselves and get back to us. This began in the fall of 2017. After preliminary investigation we signed a contract with them (No one does this really for free) which spelled out the percentage they would take from any settlement. We, of course, would not have to pay anything out of pocket. These firms work toward settlements whether in court or out that give them almost 50% of the money. But what can you do about that...right? This rocked on with a few phone calls (mostly if not all initiated by me) where the "investigator" said all the things a family could want to hear and that there was definitely a "case" to be had. The only trouble with that in our situation was:
the firm's investigator is NOT the lawyer and he/she is very good at leading you to believe your case is receiving TOP priority
They are sometimes IMPOSSIBLE to get in touch with
In a big firm such as this first one, they have lawyers who are licensed to practice in your state and you do not get to speak to them for quite some time...at least in my case. In fact they "assign" a lawyer to you. THAT really means a bunch of nothing. You have a name. Big deal. They don't communicate much.
Almost ONE year later, I received a snail mail LETTER telling me that (even though they had said they'd take the case, and had encouraged me with hope, and I had signed their contract) he could not represent me "But that was not saying the case was not without merit and I should continue to find representation before the 2 yr limitation was up."
All this leaves you with your hopes for a fair hearing/trial/accountability dashed into the ground.
My suspicions are that when they finally got around to looking at the logistics of our case, they saw there would not be the mega dollars involved as there is in those big lawsuit cases where a huge corporation is charged or where (especially) there is faulty equipment, etc. where they can sue large corporations, The advertisement could have been "______&______ for ___ people as long as we get a huge sum of money" Law Firm. (But if there's only a small recovery amount possible, we don't have time for the people.)
ATTEMPT for Representation #3/#4
My husband at this point continued the search for another firm (licensed to practice in our state) to take the case, found one and we went through much of the same drill. Hopes lifted only to be a little cut down months later when our newly representing lawyer said it would be better to refer us to yet another lawyer that was practicing in our state. He was leaving his position in the firm and very sorry...yada, yada, yada. BUT he did recommend us to a small but capable law firm dealing with these types of cases in our state. I was, if you can imagine, now a wee bit wary of any promises of getting this done. However, they proved not only to be capable, but personable and quite knowledgeable of the case. It also seems that they found things in the paper work that worked in our favor...things that I believe the others had not uncovered. For example, I learned that the previous lawyers uncovered an arbitration clause that was in the admitting paperwork (which most likely is what caused them to shy away from the case) but unlike the previous lawyers, found the paperwork signed on the wrong date...before the nursing home documented receipt of my power of attorney. (Which made my signature on ALL their paperwork null and void) I can only comment that to have been the divine hand of God, for if they had received/documented my power of attorney first, everything would have been resolved by an arbitrator and would have limited any claims considerably. So the end of this attempt DID result in a fair and appropriate representation on behalf of my Mom and matters came to closure.
Everything in life (and in death) has a process. Some of what I intend to share with you may surprise you as it did us. The last thing I want to do is to "tax your patience" as my husband would say many times from the pulpit. Now, that most often means a lengthy version of a short intention. So, I'm not sure where this post will take me. But I'd like to focus most on what I've learned from Mom's residency and fall. But I realize that my "education" has only scratched the surface. Here is some of that education:
Home Care Tips:
Consider giving someone POA (Power of Attorney). Yes, this is a legal document. There is POA to handle finances and affairs and there is medical POA, and there is a combination of both. Consider having a family member added to bank accounts. Do this before it becomes a necessity and treat it with the utmost respect and honesty. Also, encourage your loved ones to make a will. There will be many reasons why this is a good idea in the end and will save a multitude of headaches as well....even if there does not seem to be any great "estate". I could give an example of where this could go very wrong; but also many other examples of where it makes everything go like it should. Another story for another day...perhaps.
Make your home "elder proof": grab bars, ramps if necessary, removal of trip hazards. If your loved one has Home Health Services, they will usually come to your home and go through all this with you, especially after discharge from a hospital.
For video of where to place grab bars in the bathroom Click here
This tub seat was really useful for my Mom since she could sit on the outside of the tub, slide over (with help) inside the tub, and use a hand held shower head to bathe.
If you are fortunate enough to be able to convert part of your home into a mini "apartment" and bring some of your family's personal things; it can make them feel more "at home". We were able to take two rooms and convert one to a small "living room" with Mom's couch, bookshelves and TV and keep the other room a bedroom with her own bathroom and tiny side porch. No, it definitely was not her former house, but we were able to keep her living area comfy and "familiar". It was important.
Bed pads: disposables or washables (washables more cost up front, but definitely economical in the long run)
Raised commodes or bedside commodes Hint: IF using a bedside commode, line with the cheaper kitchen bags and place several sheets of inexpensive plain paper toweling. It is an easy, economical way to eliminate any lingering odor. Just tie and dispose daily.
Wireless doorbells and or baby monitors give you both a means to alert each other when needs arise. I attached one beside Mom's daytime chair, taped one around the rail of her bed for night-time, and put one beside the commode. Some of the wireless doorbells illuminate at night making it easier to find. Of course there are other products that serve two -way conversations as well.
Medicare will pay for many things but not everything. Many pieces of equipment are covered, but that is not always at 100%. Irregardless, you must have a doctor's prescription for them. But beware....there is an order to what is allowed when and there are limits.
Use a multi-day pill keeper. Fill it for the week. And keep records. In fact, if you can, make a medical record sheet that includes names of Rx's, strengths, quantities and times. On the back side you can do a medical history of any surgeries, or health issues. Be sure to include dates and, if you can, Physicians' names. Here is a sample:
Name: XXX
Birthday:
Address:
Health Care: United Health
Care Medicare (combined)
RX Prescriptions
For:
Dosage
Frequency
By:
New/changed
Felodipine ER
Blood Pressure
5 MG Tab
1xday
Dr. David
Losartan Potassium
Blood Pressure
100 MG tab
1xday
Dr. David
2/11/17
Hydrochlorothiazide
Blood Pressure/fluid
25 MG tab
1xday-morning
Dr. David
Gabapentin
Neuropathy
300 MG cap
1/ 2x day
Dr. David
Doxycycline
Adult acne
100 MG
1xday – as needed
Dr. David
Meloxicam
Knee pain
15MG
1xday - as needed
Dr. David
Gen. Medical Info:
Procedures/Surgeries:
Dates
Allergies: none
Tonscillectomy
1956
Dr. Hospital name
Asthma-no attacks since ~ 2003
Cyst/tumor-arm
1966
High BP
Tumor-throat/benign
1993
Tumor-Parotid/benign
1993
It actually would not hurt a thing if all of us would carry something like this around. When you go into the hospital, what do they ask you for? RX info and medical history, right? If you already have one up to date and complete, all you have to do is hand it to them. Even every time yougo to the doctor's office, they do the same thing. So not a bad idea. I always kept the one for my Mother up to date and printed on card stock and carried in her tote bag. When they started with the questions, I pulled it out and they were so amazed at the organization. Sometimes you just can't remember it all off the top of your head.
This has probably been a lot to take in. And so I'll interject a Momma story or two here
One of Momma's favorite holidays was Christmas and she LOVED to decorate her tree, her house, her yard and she equally loved to get in the car and ride around looking at everyone else's lights. I did it with my parents as a child....we did it with her as a little young family where she would giggle and ooo and ahhhh along with the me and the girls. And so, I decided one Christmas that we had not done that in a while so maybe it would be fun to take her out "to see the lights". She was EXCITED to go. We went down to what my mother had formerly named "the healthy section of Mobile" and the lights were indeed on and beautiful. But Mom seemed to not notice.
Me: Momma are those lights beautiful or what! Mom: (looking straight ahead) said, ooo they are pretty! Me: Mom are you looking at the lights? Mom: Uh huh... We then passed right in front of a yard and house full of brilliant LED lights Me: Mom...Look to the right! Mom: (jerking her head around toward the...you guessed it...left ) says uh huh Me: Mom turn to the other right! Mom: (yep...jerks her head the other way and finally sees them...I think, but .....silence...no response) Me: Mom are you ready to go home? Mom: Yeah, I think so, Brenda Sue. All those lights sure were pretty, weren't they? Me: (If you say so, Mom, I think you saw them with those eyes in the back of your head) We get home and she tells everyone what a great time she had looking at all those pretty Christmas lights. So, maybe I've been looking at them all wrong all these years. Maybe to fully enjoy them I have to look the other way.
One more story...a "chicken-potty" story. It's one of our favorites. Before moving in with us to stay, Mom had bought a house nearby. She had a few hiccups in her health and needed to go to the hospital. The doctor diagnosed her with "encephalopathy" most likely due to brain damage due to lack of oxygen before her heart surgery. Anyway, our baby daughter and her husband moved down for a period of time to stay with her. One day they took "Granny" to do her two favorite things: Get some fried chicken and go to the park to eat. She ate some of it but got full and our baby girl, Meagan, took the rest back for her to "eat later". That night:
Meagan: Granny do you want the rest of your chicken for supper? Granny: No, I don't think I want any more right now, maybe later. Next day (same question, same answer) And the next day, and the next. I came over to check on her and she whispers "Brenda Sue, we've got a problem" Me: Momma what kind of problem? Momma: Tommy ate all my chicken. Me: He ate all your chicken? Momma: Yeah, he got my chicken I was saving out of my box and he ate it. (Then the rant went on and on and on until finally....) Me: Momma if Tommy ate a piece of your chicken, don't you think changing out that potty chair everyday was worth one piece of chicken? Momma: SILENCE....nothing more was said, just a humph and then she left the room.
I finished my visit and went home. Now our son in law, amongst other things, lined Momma's potty chair with a kitchen garbage bag every night, put some paper towel in the bottom of it, and set it near her bed where she would not have to walk far at night to go to the bathroom...she could still walk then, but it often wore her out. That next morning I get a call:
Meagan: (laughing almost hysterically) Mom, the potty chair is NOT worth it. Me: What? Meagan: Well, I heard her telling you that Tommy ate her chicken, but really it was me the other night. I kept asking her if she wanted it and she kept telling me no, so I thought I'd eat it before it went bad. Then this morning when Tommy went into the bedroom to clean the potty chair, he found it empty....moved over into the corner of the bedroom and some of Granny's things stacked on top. So <giggle> I guess it's not worth it! (How in the world she moved that by herself, I will never know...but we all know that a clean potty chair is NOT worth one left over piece of chicken)
I know...I know; but here's the last one for this post. And really it's a pretty good trick to get someone to swallow their medicine, so here's the last Momma story for today .
Now you have to keep in mind that Mom had dementia. At the beginning it was really, really bad. Mom imagined all sorts of people having parties at the house and people coming to her door, including a home visit or two from the doctor....NOT ! Also the dementia had a way of making her appear to be agitated at things. One day when our baby girl was still helping my mother at her house (mostly cleaning and cooking and transporting), she called, quite upset. "Granny refuses to take her medicine and I don't know what to do." So after a while my husband and I both went to the house. And the moment I walked in the door, I asked her if she had a problem, to which she retorted, "I don't know YOU tell me." Anyway you can see how that conversation was headed. So we just talked a while. Then I told her that Meagan said she would not take her medicine and that we were going to have to take it. To my amazement, I got the medicine, put some in her little cup and she put them in her mouth. (Mom was a WHOLE lot better than me with taking multiple pills). And I gave her a sip of water. But we had more to take and she hadn't swallowed, just held it all in like a bubble. With an attitude a mile long, she just stared at me and it wasn't one of those "not at home" stares. She was staring me down, daring me to make her swallow. I really did not know what to do next. I KNEW the pills she had in her mouth were bitter, but she would not swallow, would not take any more water...nothing. My dear husband did not miss a beat. He always said he was not her favorite (but she asked about him until the last day I saw her) but they were sometimes like oil and water....This was one of those times where I was glad, because he made a statement about something he knew she didn't like and since she had such a 'tude, she had to swallow (without thinking) to give him a piece of her mind. I quickly took the cue and gave her the other pills which...she did put in her mouth and did take a sip of water, but again did not swallow ...But she listened as my dear sweet husband argued with her...again. She could not stand it! So she swallowed hard and came back with another retort. Well...the tongue was then loosed and she gave him some more of her mind...he just smiled...and I don't think she ever figured it out. BUT she also never refused to take her medicine again, either.
Everyone who places their loved ones in a nursing home, does not have the same motive or reason for doing so. Neither I nor you should self proclaim ourselves as judge and jury. I only have observations. My observations are summed up in these statements:
Some nursing facilities are top notch, smell and look clean, have caring and capable staff....and some do not. (It is not a bad thing to look up reviews and ratings)
Some people admit themselves...for a variety of reasons.
Some family members do not want the responsibility, nor feel adequate to be a caregiver at home.
Some residents have no family members or loved ones to step up to the plate.
Some people do not have the means or space to take in another.
Some people put forth enormous effort to care for their loved ones themselves at home only to come to a point where more medical care than they are able to provide is necessary.
Visiting a resident is fairly easy, but leaving a resident who is crying and begging for the visitor to take them home can be more than some can bear.
Nursing home residents can succumb to depression; but so can loved ones being cared for at home. Their lives are changing, they are no longing feeling in control and most importantly they loose their purpose in life (at least in their minds). And yes, some caregivers may fall pray to depression as well.
Only one who has been a caregiver themselves can possibly understand how demanding and difficult being the sole caregiver in a home can be.
Having brothers and sisters does not always equal help either at home or at a nursing home. And being an only child can be especially "interesting".
It can be a challenge to listen to a complaint from your loved one knowing they also have dementia and reality is not always present. It pays to check them out.
It is very easy to feel that a visit is not noticed and therefore not important. And just like the person who stopped going to church; it all starts with one missed time.
It is also easy to find ways to make your loved one feel important and loved.
In a dementia situation, there is NEVER a time to argue the truth. But the Lord can give you ways to answer questions and react that are honest and loving. Sometimes silence is your friend. (Why continually remind someone of the death of their spouse they forgot only to see them grieve time and time again. And why is it so important to be "right"?) They live in a world that is often frightening, because they know things are not right and then later, they actually live in that world that does not make any sense)
Let me take a break and share a story or two or more of daughter-fail and successes from several repeated conversations.
Mom: Brenda Sue, I'm really worried about your Dad. He hasn't come to see me. Do you know where he is? (asked every time I come to visit.....for MANY visits)
Me: I'm sure he would if he could.
Mom: Yeah...I guess so, but I sure wish he'd stop by. I'd really like to see him.
Mom: (eyes glistening from tears) I just don't know why Riley (my Dad) hasn't come to see me.
Me: (Lord, how can I answer her? truth?) Mom, Dad had lung cancer, remember? you took care of him for several years.
Mom: I did? So...is he dead?
Me: Silence (total daughter-fail...if I tell her, she will cry and grieve and probably grieve every time she asks and I say he died. what to do?) 'Lord pleeze give me words to say'
Mom: Well tell him to stop by when he gets a chance.
Me: Ok, Mom I will when I see him.
then finally....a Godsend answer...
Mom: Brenda Sue, I'm really worried about your Dad. He hasn't come to see me. Do you know where he is?
Me: Mom, where do YOU think he is?
Mom: (with confidence) Well, you know he's off fighting in that war (WWII)
Me: (with gratitude for God's open door) Hmm....do they let soldiers come home very often?
Mom: Why no...not unless someone dies and I'm not dead yet!
Me: Hmmmm. Mom I am certain if he was able to come see you he would.
Mom: I guess so, that's probably why he hasn't come.
Me: (phew!)
(Now, I referred to this story in one of my previous posts on this blog, but this was a more complete version...so pardon me if I complete it...again, because it was so sweet)
Mom: Well, Brenda Sue, you just missed him.
Me: Missed who?
Mom: Your Daddy came by to see me today.
Me: (after much pause and mind racing around to figure out how she could come to that conclusion) He did???
Mom: Yeah, he came in and visited for a while. He's put on a little weight though.
Me: (with wonder, gratitude and amazement at this "gift") Did ya'll have a good visit?
Mom: (broad grin) We did! Maybe you can come earlier next time and see him.
Me: I'd like that. So where is he now?
Mom: Well you know he still has to go back and fight in that war.
Me: ( I could have never been more thankful and full of joy seeing her face re-live such a wonderful "present" from the Lord. I was to be ever so thankful, because this scenario repeated itself several times afterward, not every day, not even every week, but nevertheless I was always in awe, how the Lord enabled her to see him. A vision? His spirit? A dream? Someone who reminded her of Daddy? Does it matter? No, it does not. Every time it was very real to her and a source of comfort, even a giggle or two for all of us. )
That worked out so well. But another family member, Mom's aunt and then a cousin had passed away only a year or two before. Mom had attended one funeral (Aunt Lucy's) but when her cousin passed, she was in the hospital and had me send flowers. We had spoken of both several times. Until Mom wanted me to dial their numbers so she could talk to them. Well....how in the world do you get out of that one. She was pretty up on things and my feeble efforts of busy lines was not working (does a Momma really know a lying face? ummmm I plead the 5th) But she got really agitated with me and demanded that I get them on the phone. So what to do? I made the decision to tell her the truth. Complete and utter daughter-fail.
Me: Mom, remember, we flew to Aunt Lucy's after she died and went to her funeral. You and I flew to Dallas and rented a car and...
Mom: We did WHAT? No, we didn't.
Me: okay (let me try cousin) And, Annie Bell passed away when you were in the hospital in Mobile and we couldn't go...remember? (getting in deeper)
Mom: Brenda Sue, WHY didn't you tell me? (That was before the deep sobs and repeated demands for why I kept these things from her)
(Broke my heart. There was nothing more I could say. No way out of these except the determination on my part to NEVER mention their names again and just hand her tissues and listen to her reprimand me repeatedly)
~
I've already mentioned the difference of a living will and advanced directives in my post "The Call". You can click on the titles on the right side of this page to go there if you need to. The idea of them was not new to me...just their application. I came away with the understanding that being prepared either from heart to heart conversations with loved ones before the needs arises or from legal paperwork is the best possible plan. The only downfall of such preparedness is wondering if they still feel that way or being able to produce the paperwork. I mean we don't always get sick at home.
I love to talk....I love to write...but this is probably a good place to stop for today. No matter what the circumstance for yourself or your loved one, the care, love and the process does, as the title of this blog says, begin at home!
I feel that as I tell you my Mother's story, the one I have had to keep a lid on for almost two years at this writing, that you need to be aware of something. But, before you begin reading, you need to know...I plan to tell my Mother's story as best as I can beginning with the end, and with as much passion for truth as I can. My Momma's voice needs to be heard. I want you to celebrate her life with me and wonder at how such unspeakable things can go so wrong. I want you to be educated in areas that I'm going to bet most of you reading this are not aware of. Then, afterwards I plan on going back to visit parts of her life's journey that I think may make you laugh (I know we still get a smile or two out of retelling them ourselves) There will be more than one post to this blog for sure in order for me to accomplish this. Hoping that you will want to stay with me until the end is my desire, but I understand there will be those who will not feel compelled. It's okay. For those who do, just know I have learned much as a daughter, an only child, a learn-as-you-go caregiver and even as part of the legal process. I even think some might benefit from my successes and yes, my daughter-fails. This may take a while to get into print. Hopefully someone will be blessed because of it. I do love to write! My former boss one time told me "Brenda, you could write a book.....but nobody would believe it." Well...Mrs. Casey. This is my feeble attempt to do so. A writing in the raw...mistakes and all. For all to see. Perhaps
"Momma, Momma, wake up. I think it's time." It's our daughters quietly, almost reverently, letting me know that moment that I've dreaded, no, we've all dreaded most these past couple of days...is here. It was probably my husband, too...funny how our brains can only take in so much at one time, perhaps because our hearts are breaking and nothing, absolutely nothing actually happens quite the way you imagine it.
Lifting my eyes toward the bed, I see her. I have the only extra bed in the hospital room, so my eyes focus first on waking. But I see her, eyes half closed, mouth open, chest hardly disturbing the sheets. Her sunken features making her Mrs. Claus--like expression barely recognizable, her twinkling eyes dull and mostly closed. My feet carry me to her side. I really do not want to go. Everything seems surreal, like a dream; but this is no dream. I whisper "Momma I love you" and take her fragile hand and watch. The breaths are ever so slight. Was that another? But no, all the air is still. Only a slight stirring of air and then no more. Sort of like watching that ever so brief moment of pink sky before it's beauty fades away into gray. It only takes moments. I've heard the expression, "You are only one heart beat away from eternity." True, but as the heart gets weaker and the breaths more shallow, one cannot hardly distinguish between life and death. It can be so subtle. The faces of family all standing around the bed, staring, waiting for another breath, but another breath is not to be. Did I kiss her? Could she feel my touch? Could she hear the soft farewells from family? Oh, my God, I almost didn't wake up in time! Gentle sobs and still expressions of disbelief fill the room.
All the rest remains a blur. Her nurse was called in, vitals checked. The coroner was summoned and the official death watch was over, just like that. Time/date of death: 4:32 AM on September 16, 2017. The sun wasn't even up yet. Darkness outside the window. Darkness in our hearts. Emptiness.
Everyone had been together in that County hospital room earlier that night-- my husband, our three daughters and their families. All stayed, except our baby girl and her husband. Just a few hours before they went to our house trying to find relief from an ill-timed toothache of mammoth proportions and exhaustion from the almost 900 mile trip home less than 24 hours before.
We'd all gone over everything at least a thousand times. And still, we could not help but try again and again to put together the series of events that led us to this place...to make sense out of the unbelievable. You see while my Momma was indeed 90 years old, the events that led to her death were far from natural.
Monday
Was it only Monday that Tiffany visited her Granny and painted her fingernails?
"What color would you like me to paint your nails today?"
"Oh that's a pretty color, I like that one!" Pink it is.
How is one to know they are painting fingernails one day for a funeral just days away? That answer is pretty simple, how could you know?
Tuesday
The excitement to share some of the pictures from Ireland and Scotland, a recent bucket list retirement trip taken by my husband and myself, outweighed any need for a much needed nap. So, bright and early Tuesday with SD cards in hand, I walked into Wal-Mart with almost nothing and walked out that afternoon with a boatload of hard copy photos to share with my Mom at the nursing home. How did she get there? Everything began in 2003 with her first stroke. From there Mom lived with us until she recovered enough to purchase a house near us and sell the one in Louisiana...the one I spent the better part of my life growing up in. After that, dementia and heart disease took its toll. I kept her here at our home and cared for her everyday after work and on weekends, with help from our daughters and my husband, until she suffered her 2nd major stroke. After that and other health problems I made the decision to let others provide her much needed medical care in 2012. An adjustment for all, however I knew that I could no longer provide all she needed. You do know there are people out there who struggle with this, right? The fact is...people get sick....people judge...caregivers step in...people judge....caregivers run short on energy...people judge...caregivers feel guilty....people judge. But back to the pictures and that Tuesday...…. First order of business? A call to staff at Glen Oaks Nursing Center, the nursing home my mother called home for the last few years..
"Hi! This is Brenda. Would you have Mom dressed and ready for me to meet her in the front room? I have a LOT of pictures from our trip to share."
"Yes ma'am we will have her up and in the front room."
(I make the 20 minute drive)
"Well, Hi Momma! I see they have you dressed. Would you like to look at some pictures of Ireland with me in the front room? " (Nothing new...she's dressed, but still in her room. It's late evening)
"You have pictures of where?"
"Ireland, Mom. Skip and I went there and saw where your family used to live."
"You did?"
"We sure did and I have a bunch of pictures we can look at. Let's roll around to the front room and look at them." (I push her to the large front room asking about her morning, what she ate today...It's all pureed and not too memorable...we laugh...we talk)
"These sure are pretty. Where'd you say you've been? "
"Ireland, Mom, we went to Ireland."
"That's where some of my family came from you know," Mom reminds me.
"I know Mom. Isn't this cool that we could see the country where your great-great grandparents lived?"
"It sure is green there. You went all the way to Ireland?"
One picture after another and each time I tell her where we were and what we were doing. The eyes began to get that sleepy look and she nodded a time or two until I asked if she wanted me to take her back to her room. I'm disappointed, but for her, it's getting late even though it's still daylight.
"No! Brenda Sue, I want to keep looking at these pictures, they're so pretty. But I am a little sleepy, can't keep my eyes open."
I tried to keep her alert and awake enough to see the church where her ancestors attended in Dublin and the REALLY cool monument they have on the wall to commemorate some of our family
{another story for another time, but just because it is pretty neat to be connected to history.... click here to check out the story. My mother's family, Seagraves/also spelled Sedgraves was traced back here.}
BUT, I gave up trying to keep her awake and resolved to come back the next time a little earlier so that we could enjoy the pictures without being sleepy. Mom's dementia sometimes seemed to get in the way and then sometimes it almost seemed like almost no problem at all, although the times of not remembering details was certainly becoming more frequent, so I knew the next time just might be another brand new visit. But that would be okay. And then again, she could surprise me sometimes by remembering the slightest details like:
"Brenda Sue, that blouse looks just like one I have." And I'm thinking now how in the world does she remember a blouse that she has not worn or seen in more than 5 years? Yep, it fit me fine and I had looked at it long enough in her closet at the house, surely she would not remember it. Wrong. A smile crossed my lips and I said, " You did? Well, how about that!" Moving along....
I wish I could remember more details about that Tuesday, but I can't. When Momma got so sleepy that she couldn't keep her eyes open, I rolled her in her Geri-chair back down the main hall, turned right at the nurses' desk and asked them if her aids could come and help her get into bed. Yes they would tell them. She had been designated as a "2-person assist" so, two CNA's would come in with a Hoyer lift and transfer her just like they've been doing for the past year or so. We rolled in the room and sure 'nuff the eyes popped open.
"We're not going to finish looking at those pictures?"
"Mom, I'll come back and we'll finish looking at them later this week, ok? Someone's going to come and put you in bed so you can go back to sleep. You must be tired this evening."
"Well, I'm ready to go to bed."
"OK. they'll be here in a few minutes." This is the time everyone's going to bed, so it could be a while. I turned the Geri-chair where she could see the door and see the ever running TV, if she wanted, made sure she was comfy, kissed her and waited for her to say her usual,
"You're going so soon?" (It never mattered if I was there for hours or a few minutes) Then, as always, "Mom I love you...see you later."
"I love you too!"
"I'll bring the pictures back and we'll have some coffee and look at them when I come back."
"Oh, ok, I'd like some coffee."
"I love you."
"I love you too"
"See you later"
"I love you." Why is it that this always becomes the hardest thing to do? It is the part that makes so many stop coming to visit their loved ones. And why so often did it feel better to wait until those snores came to walk out the door? But then there were days where all the I love you's were said and the see ya later's only to walk back into the room one minute later to hear, "Well, where have you been I haven't seen you in a while." Ya never know. I just know that it was such a big, big blessing to leave without seeing or hearing any tears from that chair or that bed, especially that evening. Yet, I'm pretty certain, especially in the beginning, there were tears. I know there was Kleenex for mine waiting for me in the car. Yet, back to this part of the story, my last step out the door was
"Good night, Momma" as she called out good night to me.... one last time.
Note to reader: *Some of the links below do not work. I refer you to the "note" that is highlited in red below. I am in the process of editing this piece, by researching again. It may take me some time to complete the task. I apologize for any inconvenience this may cause. Many of the links DO work, hopefully if you will find the information that you are looking for.
The following blog entry is lengthy. I can't really apologize. It is my Mom's story, and it is also mine and it is my family's. Perhaps in the end, you will understand more the reason I am writing. I don't know if you will want to try and digest all of this in one sitting. I admire you if you do. Look for the links, click on them if you wish. But it really is okay if you start and stop, read and leave. I just hope that you come back.
Did you leave already?
Ohhh, you are still here! (I'm glad you are)
Well... I'd like to take the time to thank you. And, I trust you will come away with at least one piece of new information and say that you are glad someone took the time to share. Some things may seem a bit blunt or out of character, if you know me. As I write this, it has been TWO years and 5 months... It is time to unpack the events, and I'm ready! So here we go, continuing with my Mom's story....
On Wednesday nights my husband and I are almost always in church. I mean my husband being the pastor and all. It's where we should be. It's where all faithful believers should want to be. Ours happens to be 72 miles from our house. I know you don't mind me asking, but Lord, do we always have to serve you so far away? Silence. That's what I thought.
The usual service has my preacher-husband standing behind the pulpit of a small town Baptist church with his Bible, with his notes (sometimes) but never with his cell phone. That would be me, the one with the phone turned on silent...mostly. Leather and paper or digital device. Either way I have the Word with me and I've only glanced a time or two at the screen to be sucked into the Google, Messenger, Email, Social Media World. Seriously only a time or two...well, maybe when my sweet husband mentions something that makes my eyebrow arch. Then I HAVE to check the "fact" out. But you get the picture. In church. With phone nearby.
Sometime after the song books were put away (yes, we still sing out of song books and hymnals and someone still walks to the piano), and the Bibles/Bible apps were opened, I heard the vibrate feature on my phone. Quick. Look. Message. Do I open it? In church? Yes I do. And I see a message from a daughter urgently telling me to call the nurse at the Nursing Center. Has she had another stroke? Did she have a heart attack? Did she need something? What in the world...so I do what any loving daughter would do and because it sounded so urgent...I went outside to call. The message had been clear..."Call NOW!" And so I did. What I heard next was just the beginning of a nightmare, only to later become stark reality. I made the call.
I came trembling back inside, scribbled something on a piece of paper and walked up to the pulpit. How else do you interrupt a pastor in the middle of teaching? Eventually I wrote down notes and located official reports, but I did not have that luxury at the beginning. I hope that none of you reading this have had an experience where news is sudden, doesn't make sense and is totally unthinkable. But I would bet some of you have. After all, unexpected events, injuries and accidents happen all the time...just not to us. No, always to someone else. And one can never fully prepare for the unexpected.
So, the note said something like " Mom fell... taking her to ER in ambulance!"
Without missing a beat, my husband let everyone know that we would not be finishing the study. They had prayer for her, for us, and we gathered our things and were on our way. The next hour was spent trying to sort through what happened. I called the nursing home and spoke to the nurse on duty and she relayed to me that my mother had fallen and hit her head. The ambulance service was there and they were evaluating her and taking her to the ER. Little pieces of information were shared and I began calling some of the family. Conversations only led to more questions and fear. I fully expected to find a Mom hurting, but who would be quite upset at the whole ordeal.
Always keep in mind that emergencies take time. It takes time for ambulances to come from their dispatch locations, it takes time to get initial information and it takes time to evaluate, transport and give a report to the attending ER physician(s). What sometimes feels like an eternity to the patient or the family, in reality, is some pretty fast work, if you ask me. It just doesn't feel that way. Word to the wise...somewhere in the back of your mind (if something tragic happens to your loved one) write down all the information you can while it is fresh. Get reports as soon as they become available and keep them in a safe place. It is difficult to recall everything weeks, months, years later. So much information is given in an emergency situation, that it's just plain hard to keep it all straight. Official reports will help you from exaggerating or undervaluing the situation. They ARE available to you as the patient and to designated folks like those who have medical power of attorney and such. However, just like a hospital surgery, if you do not have legal right to the information, HIPPA laws will bring you to a stop sign. So, if you want to read yourself or have designated family members have access on your behalf (ie: power of attorney) those things must be in place when everything is fine, before you or your loved one suffers injury. If you are conscious, you can certainly give verbal consent to medical staff, etc. to discuss matters with specific people. If you are unconscious....well....there's a problem. Mom and I had made those provisions some time before this day, so everything was in place for me. Be aware, however, most often you have to ASK for reports. And quite frankly, you may have to go get them yourself.
Back to the call or I should say calls...
We are still in the truck, flashers on... headed southeast. The first family there was to be our ex-son in law and we hoped he could tell us more. But more calls only led us to more questions! So confusing. He told us over the phone that she was bleeding and they were doing scans, but that they couldn't tell him anything. (HIPPA laws at work) It was all so overwhelming.
"Did she break any bones? her hip? is she okay? Did you talk to her?"
The answers trickled in,
"Not sure, but the ER doctor said this was a bad fall. He'll tell you what he finds, are ya'll almost here? Hurry..."
"What happened, do you know?"
"Just that she fell. I went in there with her in the ER room, she squeezed my hand, but didn't speak, her head is bleeding and they took her back to do a scan or X rays, and they'll have to tell you what happened."
While, my Mom lay there, already the wheels of government law had begun to turn.
Any nursing home facility in the state of Mississippi must, when residents are injured, report the incident to the State Department of Health and to the State Attorney General's office. Actually the State Health Department gets involved to investigate the incident. And as a result of that investigation, and possibly others, a report on the state level was compiled and subsequently made public. Medicare.gov has the most concise and complete source of information obtained in their investigations. I will get back to the story in a bit. But first there are some links that will help you to understand what was going on and they speak for themselves.
The FULL PUBLIC REPORT may be found at: Click HEREOR
Note: You are certainly welcome to read the whole 26 page report, however if you ONLY want to get to the main sections,
*Additional Note as of October 20, 2021 See below
OR
scroll down to p. 15 and also p. 21 - 23. (look at the bottom right corners to locate page numbers. Each violation had to be addressed in the report and that is why much of the report is repetitive.
Asking you to "go here" or "click there" takes you to various public links may "tax your patience" as my husband has often said from the pulpit.
The state of Mississippi has changed their access policy toward this particular public record and the link to the public record I made reference to is NO LONGER valid. Neither can any other source lead a person to the record itself. If I was to guess, I would guess that anticipated lawsuits related to COVID 19 may have caused the government to re-think their accessibility. I am not sure. But the change did coincide with the Pandemic and given all the knowledge of how nursing homes were put in very precarious places at the beginning of the 2019-2020 Covid-19 pandemic, I think I may be right. However, there is no printed statement to that effect. I am BEYOND upset at the inability to now link you to any part of the report. In the future I may copy the appropriate pages for you to read and include them. I am SO SORRY that I cannot do this today. As of this date the link below does still work to the Nursing Home ratings. Hopefully that link will remain useable.
So continue on......
You may be wondering if there is any way to check out a nursing home yourself and you can. Here is one link to Medicare's ratings/evaluation and specific information of not only the facility my mother was in, but also others in the state. Go ahead...check out the link below:.
(You may Click HERE to view Medicare's updated public ratings of not only my mother's Nursing Center, but others in Mississippi as well.) If you can't go now, do bookmark it and revisit the site later. There is a LOT of information out there and most of it is a wee bit difficult to wade through. I didn't check this out for other states, but I would bet you could substitute another state there in the search bar if you were interested.
and/or substitute a state abbreviation on the end to find Medicare's ratings in the state you choose.
Once there you have the option to look for specific nursing facilities in that state by name or zip code. If they receive medicaid, they will be listed. There you have access to a medicare rating (the more stars, the better quality care reported); but you may be interested to note the date...it may be 1 - 2 years old since last update. But you also have access to contact info, ownership, a google map, nursing home info (including the number of complaints, incidents and ratings), fire and health reports/deficiencies and much much more. If you are currently considering a facility for yourself or a loved one, it would be worth the effort to check it out. Do understand that these facilities, by law, are required to make efforts to resolve any issues found by the state inspection departments and what could have been a problem last year, could be totally resolved this year. Looking for patterns might be more helpful or at least help you ask more informed questions when looking for a quality facility. It might surprise you highly to see the ratings...so brace yourself. It just bothers me that these reports are not the first things that appear in your search engines when you open up a nursing home website. But they are there. Your welcome :D
I want to stop here and say thank you to those of you who took the extra time to click on the links given and at least scan through the information. I will also say, some reports reflect only parts of the whole picture. You have to really dig to find specific information. I have indeed done a LOT of "footwork" to provide you with the information here, but certainly there's more available to those even more industrious than I.
Moving along
.
In the report you may have read about certain equipment commonly used. For those of you unfamiliar with them, I have included the images/information below:
(photo of green Geri-chair (similar to the chair mentioned in the report) with padded seat and back, recline-able, on four rollers, with removable tray.
Also mentioned in the report is a VANDER lift. (Hoyer)
The video below gives a general idea of what is meant by a Hoyer lift and transference. I realize this is most likely not the exact model used by my Mom. And since I personally did not attend a training session, the demo may not be exactly the same as was given to the CNA's during their training. But it should give you a good idea of the principle of transference via a lift.
Take a moment to stop here and view the video below...you never know when a loved one or even you may be placed in this position. This should give a clear idea. (Click on the arrow in the middle of the video/ image below and turn on volume to watch/listen to this manufacturer's demo of how to properly use a lift to transfer an adult safely)
I know models vary slightly but the general process remains the same.
Hi! Welcome back!
As you could see, or as you already knew, it would be nearly if not completely impossible to "fall" out of the lift when all is in working order and the staff is using safety protocol. Now with all this said and demonstrated AND the information competing for brain space .... let's get back to the ER where my mother is.
We arrive. Mom is back from a scan and so, so pitiful.
"Mom, I am so sorry you fell! Where do you hurt? Can you hear me? What happened?"
But I was speaking to one who is only moaning and staring. I kiss her, I hold her hand, I watch as my husband has prayer with her and gently touches and holds her other hand. Eyes open, pain evident, but NO cognitive responses. Vomit slowly seeps out the side of her mouth.
"HEY, we need some help in here? " A nurse promptly appears.
Since information had come in with gaps of understanding of the whole situation (partially from shock, partially because some of it did not make sense to me) I just stood there trying to make the pieces fit together. The ER doctor, Dr. Hall, MD, came in with somber face, yet gentle and compassionate, to let us know that this was a dire situation. He invites my husband and me to step around the corner while the nurse is gently cleaning Mom up and keeping her somewhat elevated so as to not aspirate.
My husband and I heard: "Come see the results of the scan. Your mother fell from quite a distance apparently directly on her head and has (at this point, I'm only thinking concussion) three brain bleeds, see them here? And she also has a fractured skull." (Remember there is no report yet to skim through at this time, only the stark images that stare as much at me as I stare at them.)
A WHAT?
For any of you out there who have experienced traumatic and unexpected news in any medical situation, you know what I'm about to say...I hear the voice, I know he's talking to me, but I'm having a really hard time absorbing the information...all I can do is stare at the images on the screen until slowly the magnitude of the situation begins to take shape....I DO see the three areas he refers to as brain bleeds and then... the unmistakable fracture line. A fracture! Dr. Hall's prognosis is dire, but he remains focused on giving a snippet of positive along side the huge dose of unthinkable.
"Sometimes these bleeds resolve themselves. We'll know more as the night progresses. She has had a TREMENDOUSLY SERIOUS injury."
About the only thing I can think of to ask at that point is if she also has any other broken bones. He tells me they can order x-rays. They've just come back from a scan of her head, neck and upper chest.
"Is she in a lot of pain?" I ask.
I realize now that there are questions and then there are absurd questions, but he answered me as gently as he could.
He just said, "We can control the pain."
There....mind racing....heart doing the same...and prayer, oh the prayer. I almost can't think. But think I must, for now the questions directed toward me come.
I am asked if there is a living will or who has power of attorney to make decisions on behalf of my mother.
Decisions have to be made and made quickly.
(I was always confused about this one as I have signed directives before, and even at this very hospital for other visits and procedures, but the answer is actually 'No, we don't have an official, legal directive on file.' So once again, each situation is read and an answer and initials are required. You do know that there are about 7 - 9 things you have to sign off on, right? No, of course, you probably have no need to know these things. But you need to know....now...when things are going well...you need to know. There are basically two document choices:
1. Living Wills: Are written, legal instructions regarding your preferences for medical care if you are unable to make decisions for yourself. (But must be on file at the medical facility and/or on your person and/or able to be seen by medical personnel they are only worth something if they can be read...note to self)
And
2. Advanced Directives:A form filled out by you and/or your legal representative at a medical facility to guide choices for doctors and caregivers if you're terminally ill, seriously injured, in a coma, in the late stages of dementia or near the end of life.
Here is a link to a sample of an Advanced Directive form used in Mississippi (I did learn that each state has their own requirements)
I admit my struggle with this. There is absolutely no question as to what my mother's wishes were on artificial means to keep her alive; as she made that abundantly clear on multiple occasions; but I got stuck on one that addressed nutrition and the other that addressed medications. The form above is a sample of one that is used in Mississippi.
Scarey, huh? This is serious stuff. We never think we need to know, but, yes, we need to know.
For me, the fear was that I was signing permission to withhold water and food and was giving permission to take her off of all medications. (Reading these things now in the calmness of my sunroom and reading them with a loved one lying only a few feet away and looking at possible death are two very, very different things.) Also, you see, my mother's condition was deteriorating and the medical staff needed to know what to do. If nothing is signed or approved, the medical staff WILL do everything known to the medical field to keep one alive: including but not limited to CPR (which, in an elderly person, most often breaks their ribs). One by one, I signed permission until all was worked through prayerfully. I will stop here to say, for those who do not know me, I am an only child. There is no one else to feel the weight of the legality of it all...the final-ness. Yes, I was and am blessed with an extremely supportive and prayerful husband, three grown daughters and their families. And that by itself is worthy of all praise and gratitude, but at the end of the day...I...alone had to sign my signature, and that's a very heavy weight to bear. I honestly felt as though I was signing away my mother to starve to death and withhold all the medicines that she normally takes. It took a while to process; but basically we did not prolong her life with a feeding tube and we did not have any artificial means added to prolong life. However, she was not conscious to eat or drink. It really felt like a "catch 22". My confidence in that decision was held fast by my faith in God to lead me to do the right thing and her voice in my head that said, "Brenda Sue, don't you ever let them put one of those feeding tubes in me if I'm dying." The other directive with the medication was tougher until I asked them to explain and once I realized that they were speaking of medications that would keep her vitals going for a time even when her body was shutting down...I felt peace. I do understand there are times when one would not hesitate....and then there are other times.
I also need to stop briefly here and speak to feeding tubes. There are some pretty good reasons to have them in certain situations. However, if you ever find yourself having to make this decision only on the basis of swallowing problems/fear of aspiration...which often is deadly...If THAT is your only consideration, just know that a feeding tube to the stomach does not eliminate the possibility of the contents of the stomach coming back up to cause aspiration in the lungs. Aspiration is when you breath in food/liquids into your airway which wind up in the lungs, causing all sorts of problems. So basically you CAN vomit and breathe that back into your lungs. Just saying...if aspiration is your ONLY concern. It can still happen. Ask questions...weigh all options and their possible outcomes. Then make your best choice, whatever that is.
Back to the ER. We stayed a while and then left the room to go out to where our former son in law was sitting and tried to put pieces together before we began to call family. We had not been out very long before...
A nurse came and said, "Mrs. Holland, excuse me...the doctor needs to see you."
Could there be more? What else? Is she gone? Mind is still on fast track...and getting nowhere.
Mom had an option to make her feel more comfortable by giving her a certain medication. And I gave permission for its one-time use. So just because you sign a form, does not mean you are taking away all measures of making your loved one (OR yourself if you sign these measures before) comfortable. I know each situation is probably VERY different, but just felt you needed to hear that.
And I can't tell you today if it eventually worked or not, I mean, how does a non-medical person measure that? Vitals tell medical professionals much more that we can see visibly and Mom appeared more restful to me, so I'd like to think "mission accomplished". That was the other thing..legitimate questions were asked of most every staff member when we were given new information and it seemed like they were never fully addressed. I'm not saying that nothing was explained; but I am saying that often their explanation only served to open more questions. In every medical facility there are medical questions and there are paperwork questions a family has. There are staff members who are very patient and considerate and then there are those who should really rethink their career choices. For the most part Mom's caregivers diligently cared for her and respected our private time and attempted to answer our questions. I may explain a couple of snags later, but nowhere in this blog is my sole intention to be vindictive. But I figure someone out there might benefit from our experiences....the good....the not so good.
At some point in all this, calls were made to our grown children to relay the severity of it all and they came from near and far . From Hattiesburg...from Louisiana...from Virginia....
~
One
more random piece of information to interject here…this may sound silly, but a resident can only be “admitted”
to one place at a time. If you are
admitted as a resident in a nursing home, you CANNOT (at the same time) be
admitted to a hospital. And there is, of
course, paperwork to address that. Now,
technically that could open up a whole can of worms and questions. Do you have to clear out the nursing home room if you are
discharged from it? Can you go back when
you leave the hospital? This is an
insurance matter. (Mom also had previous hospital stays where she was treated and released). So the basic rule of thumb seemed to be unless there is a
full house at the nursing home, most of the time you can return to your same room without having to
move things out. But if your stay is
lengthy, you may be expected to make other arrangements. Technically once my Mom was admitted into a
hospital she was discharged from the nursing home…and vice-versa.
~
You may have come to the place where you are wanting to ask "exactly what happened in the nursing home?" So I put the full report link again here to p. 15 and also p. 21 - 23. (I believe if you go to these 3 or 4 pages, all your questions about what happened will be addressed) So, if you didn't before, but want to now, please go to:
Otherwise, skip the repeated link and keep on going.
......But all papers signed, evaluations complete, it was time to move her out of the ER. The doctor graciously said he would move her to a room, instead of ICU, where we could be with her. At that point....we knew the unspoken words.....
.....And
then he did speak, “It would surprise me if she made it through the night.”Confirmation is not always assuring…
(photo of green Geri-chair (similar to the chair mentioned in the report) with padded seat and back, recline-able, on four rollers, with removable tray.