Beep All Night Long?

It’s been a few weeks. )-:  I’m in processing mode. (-:    A nurse at Dorothy’s home suggested we bring in hospice.  Hospice?  I asked, mom is not on her last weeks? What are you talking about?  She informed me that Hospice can come in, take over and do a better job of assessing a person’s situation sometimes better than the doctors can.   With the last several weeks of “clusters”- I agreed for this change to happen.   Who Knew? 

It’s been nothing but positivity from the start- they reached out asking questions and getting the paperwork going. Lots of positive energy.  Dorothy has been seen by two folks, within 4 days, one which is the hospice nurse, the other the hospice clergy. They both reached out to me to let me know what they experienced and asked me some questions.  It’s been about three weeks now and she is doing so much better!

Dorothy is no longer in pain- I’m assuming it’s due to the pain pills she is still getting on a regular basis.  And that’s ok- the goal is no pain and keep her in constant comfort.

It seems like an endless stream of circumstances that continue to flow, and they seem to come more frequently these days.   The latest episode below-   I cannot make this stuff up-If I could I’d be a writer for a television show. LOLOL Sigh!

Paul and I went to visit mom last Saturday- and when we walked in all the residences were out of their rooms and either packed into the couches or a comfy chair or even the dining room table and chairs with their heads down on the table, everyone was asleep!  It had to be everyone as   I have not seen that may people out in the common area since I have been going. Most folks choose to stay in their rooms.

When we walked into mom’s room, we heard this BEEP!  Every 15 seconds the BEEP sounded- never stopping.  It was the smoke detector!  It needed to be reset, or a new battery or some type of maintenance completed.   I’m not saying this is the reason everyone was sleeping in the common area-where this sound could not be heard- I’m just Assuming this was the reason. I also wondered how long this had been going on.  I for one would have been batsh!+ crazy.

So, I went to find someone to let them know and to get maintenance to fix it.  I was told that the maintenance man only works Monday – Friday.  I asked if there was an emergency number for maintenance they could call- no, was the answer.  So, I went back to Dorothy’s room and started our feel better, let’s get clean routine.  After the shower, Paul and I talked about just removing the device ourselves.  We decided this was not a good idea-he suggested calling the Fire Department. Brilliant!  

So, I went back searching for a worker and asked them again if they could get the maintenance man out- or if someone there could look at it.  I was told again no, I calmy said, ok then it looks like I will have to call the Fire Department-they will figure it out.   Needless to say, the issue (in moms’ room anyway) was taken care of within 5 minutes.   They found a chair and a tall worker man, and he disconnected the smoke detector.   I’m sure they did not want to explain to upper management why the fire department was there fixing the smoke detector(s).  I’m sure the fire department would have checked everyone’s room- in hindsight, maybe it would have been better to call them in the first place.  ?

Again, I am not saying this is why —– everyone was sleeping in the common area, but I know for sure it was for Dorothy.

I waited all day Monday for a phone call from someone at the facility, I did not get one and at 4:30 I decided to call.   I spoke to one of my favorite workers there and asked her how I should handle the situation.  I told her the story and she stated that there is an emergency number for maintenance on the weekends and off hours.  I suggested that she share that information with the ones that told me they do not.   While I had her I shared a few other concerns of mine- one being when are they going to unlock the front doors so the family can have easy access back in- or at least give them the code to the locked door.   She assured me she would take care of what she could and pass on the door question- she also welcomed more calls from me of any future situations.   (Which I’m happy about, this is what she should have said).

I understand that there is a shortage of workers, I have my own opinion on why this is, but we will save that for another day. I also understand that those who work in this area are worn out, it has been along few years, and everyone is ready for change for the positive.    I also appreciate them very much.

So, Dorothy, I will continue to have your back- I will continue to be a good advocate for your last years here on earth.  I will continue to help you be heard and hopefully never have to listen to a smoke detector and its BEEP ever again for any extended period of time.

 Tom Petty- I Won’t Back Down.  ❤

Love and Light,

 Cheryl Doreen

For now, all is good…

It took another half day on the phone to get Dorothy’s pain relief situation under control.  Finally, last Tuesday, the issue was resolved. The doctors blame the pharmacy, the pharmacy blames the doctors, and the nurses’ hands are tied.  And nothing moves forward or gets done- unless you keep on top of it and follow it through.

In these types of situations, I have never cared what happened or who is at fault. My goal: either work or personal- is to get the situation fixed as soon as possible and then figure out what went wrong, figure out a solution and create a new process and procedure to keep this from happening again.  It’s not rocket science (Or maybe it is , I know nothing about rocket science.) I lean more towards common sense.

Anyway, Dorothy is feeling a little better- not totally pain free., but she does not look so distressed. I spent a few hours with her on Sunday.  She’s tired, she’s in some pain and she’s confused and sad.   But we always find something to laugh about. And it’s in these moments she is herself.  Laughing at her expense or something that Paul or I said.  For now, all is good. (-:

I am looking forward to Spring, it will bring the opportunity to have the windows open longer in her room, (fresh air is like a long hot shower- makes you feel good!) it should also bring relief to mom’s bursitis.  It will also show me a better understanding on how she will rise above this pain and how much this affects her dementia decline. 

My Girlfriend “B” lost her mom a few weeks ago- a long battle with Dementia- the last three spent in a nursing home- mostly bedridden and not knowing anyone or anything.  Ms. Betty was able to stay in her own home and was cared for by her husband and daughter for as long as possible.  Eventually, they had to let her go to the facility- sometimes Dementia gets to the point where the “professionals” need to take over, both for the demented one’s care and for the family’s well-being.

It was a rough three years.  In the end “B” was able to be with and connect one last time with her mom.  Ms. Betty remembered her daughter- which brought joy and a sense of peace and a renewed connection to them both.  Ms. Betty was also able to do the same with her husband and son. ❤

 Experiencing watching a loved one go through a long illness; one you can see they suffer in: with either pain or not knowing where or who they are: we come to understand that the end is a Blessing.  Especially when we believe in the power and the promise of God. Ms. Betty was able to go out of this world knowing the ones she loved were with her until the very end. I can only imagine the comfort that calmed all of their souls.

“How Great Thou Art” Carrie Underwoods Version- my favorite line “ Then Sings my Soul” if you think about it this line speaks volumes.

 I am hoping that all of us get the same gift of contentment with our loved ones before we pass on.

 I believe that our souls are what matter, they guide us, they support us, they light our way- every. single. day.   I also believe they give us one last moment before we fly away.

Love and Light,

Cheryl Doreen

Help me understand…….

Never a dull moment in Memory Care.   Last week Dorothy’s home was on lock down because someone tested positive for Covid 19.  So, the facility was shut down for 10 days.   During the last part of the shutdown moms Bursitis flared up.  It’s in her right lower back, hip and down the side of her leg to her knee. It’s painful! While I called several times over the last two weeks during lock down to check on mom- no one said anything about her being in pain.   I know that pain like this is quick and out of nowhere. So, I do not know how long she has been complaining. The home called the doctor, and the PA came and did an x-ray on her on Friday- no broken bones- so the doctor did nothing.  Not even pain pills to help with the pain were given. 

  ???? Really????

We learned of this Friday late morning when I called the home to check on mom. I immediately called the doctor’s office – but the answering machine came on. I left a message at 11:45- knowing that the office closes at 1:00.  I “ASS”umed that they would call me back before they closed the office as I stated it was urgent and that mom was in pain and needed some relieve.  They did not call back. I called twice after that on Friday afternoon and early evening – I did get a” live in person” every time but it was the answering service, but no call back came. Again,  I stated that this was urgent, Dorothy wa sin pain and we needed to talk to someone.   )-:

At 6:00 am on Saturday, I received a call from an unknown number- I do not sleep with the phone in my bedroom- and when I checked the phone at 7:30- the message said to call back on the number that they called in on.  The number took me straight to the answering service, who stated that “they” could not help me- no one was on call, and it was an emergency to go to the emergency room.  They called Paul as well but at 7:00 AM – and he was busy and told them he would call them right back- when he called back it his call also went to the answering service with the same response and the same response. )-: So I went “virtual” I left a few messages on the Patient Portal on the doctors website. Thinking the virtual assistant messaging might be more “logical”.

Saturday after lunch the shutdown was lifted at moms’ home, so, Paul and I went to see what was up with mom.  When we walked in Dorothy was sitting in a chair with pain all over her face.   I said “Hello mom!  How are you feeling today”?  Her immediate response was “Well Cheryl, I’m not doing good at all – my back and leg hurt so bad I can hardly stand it”.  Knowing moms demented state this confirmed to me how much pain she was in.  So, off we went to Urgent Care.  

Two hours later- (which was a record visit to an Urgent Care) we were back at the home. After talking to the doctor at urgent care and bringing him up to speed- he prescribed pain meds-enough for 5 days- and a three-day steroid. While I’m not a fan of steroids I was hoping it would help relax the inflamed area.   We gave her a pain pill before we were out of the parking lot of the pharmacy.  Looking back, I wish I would have given her two. (-:    

When we got back to the home, she felt like taking a shower-so, I helped her get clean and “feeling refreshed “– as she says. Still in pain but ready for supper and bed. (-:

I left a third message on the patient portal at the website Saturday evening.  I let them know firmly, but kindly again to help me understand why we have not heard back from them.  Is no one on emergency call?   Why were pain meds not ordered for Dorothy when she was in obvious pain? Help me understand what constitutes an emergency?  Aren’t old people are subject to emergencies all the time, and sometimes they do not require an emergency room visit.  they just need someone on call to help them get through a “weekend”. Especially with demented folks- they cannot talk for themselves, and they should not be sent to an emergency or anywhere alone.

I also let them know of the day’s events that occurred at Urgent Care, and what the doctor had prescribed and that he had given pain meds for the next 5 days. But that I still needed someone to reach out to me.

  I was off to see mom and as soon as I got there, she had just finished lunch. So, we went back to her room- I rubbed tons of cream on her and put on the hot patches.  As she was already laying down on the bed, I covered her with a blanket and told her a nap might be a good idea.  She agreed and before I was out of the room, she was asleep.  (-:   I gave the over-the-counter cream to the nurse, told her of the conversation I had with the PA and that the directive was on the way along with the pain pills.   Which would be needed if the 5 days that the urgent care was not enough.

It’s Tuesday as I sit and write this, and I am still fighting for mom to be pain free. I just got off the phone with the home and the drugs are still not there and the directive they gave for the over the counter cream was “pea size” for the area. ?   “A little dab will do you”  is not going to work  in this case. Where is the common sense?    Sigh!   Heavy Sigh!   

At 9AM on Sunday morning I got a call from the Physician’s Assistant, not the doctor.  The doctor has never seen mom, only the PA.   Anyway, she informed me that the doctor instructed her to call me direct after he read the messages I had sent.   I asked the questions and she answered them.   She said she had put in an order for the pain pills on Friday but could not guarantee when they would be delivered. Really?   The AP and I spoke for a while and got things “ironed” out. My message was clear to her- that our goal is to keep mom worry and agitated free, and out of pain and very comfortable.  Dorothy has lived an amazing life,  but, while she  may still be “living” she is at the end of her life.  She is not going to get well again, she is not going to be the person she was a few years ago, she is going to continue to go downhill from here and she needs to be able to do it in comfort, with grace and painfree.  The PA agreed and assured me mom would have her medications and the directive for “BenGay” or similar pain cream – (which I asked her if she could give a directive and that I would pick up over the counter.).  The phone call ended on a positive understanding on both sides.

I know the easy option would be for me to bring her home.  But I cannot give her 24-7 care.  I was not given that gift.  Even the nurses and caregivers at the facility get to go home after 8 hours.

So, I will continue to carry the flag for Dorothy and help her in anyway that I can.  As I type this, I have sent a text to the PA- waiting on a reply. I am also waiting on a reply from the pharmacy which is in Alabama- which the request for help must be made online on the portal- they do not take phone calls. ???   But I am of full hope that this issue will be taken care of today. (-:      

It’s unbelievable. !@#$%%^&*()  What do people do –who do not have anyone fighting for them?  Why is the system at this stage of life not geared towards common since and comfort for those who need it most? 

Someone please help me understand that.

Continued Love & Light,

Cheryl Doreen

Random Phone Call(s)

Sometimes, some of the nurses at the facility will let the residence use their phone so they can call their loved ones. I will answer the call if I know the number and I have gotten into the habit of putting all the nurses’ numbers in my phone, when I get these calls- so I don’t just blow it off as “spam”.

I did not recognize this number, so I let it go to voice mail.  When I listened to it, it was mom in a cheery voice- it went like this:

“Hello Cheryl, you know my name and my number, and I am calling to tell you that we are going to be in Germantown. I don’t know how long, maybe just a day or longer. Let me see if I can find out”.  There is silence for a few moments- and I can hear her asking someone how long are we going to be in Germantown?.   She comes back to the phone and continues “welp- anyway we are going be there, and if you have the opportunity to look out the window – look out the window and see if you can see us driving by”. Love you, By!  Click.  I can only assume her and her friends are the we, which makes me smile.

I’m sure the conversation would have been different if I would have answered the phone- with “why am I here?  I want to go to Germantown. I don’t need to be in a place like this. Who put me here”?  On and on and on she would go and only get herself frustrated and all worked up.   Instead, she was talking into thin air and wanted to let me know that she was okay.   The moment of anxiety had passed.  She was going to be ok.    

When I went to see mom one of the nurses- Joyce, came up to me and asked me if I got moms message.  I said yes, and I thanked her.  She said I’m so sorry I hope it did not bother you, I stopped her right there and gave her a hug and told her I welcome all phone calls from mom.    

I can handle all of them.  She might not like the answers I give her, but I will always talk to her.

Joyce was so happy – and I know why- most of the folks that are in Memory Care and or Assisted Living are dropped off and not seen by their loved ones very often or at all.   And the nurses know who important it is for the family to come and visit their loved ones.   The resident needs to know they are not forgotten.

Do what you can.

Peace & Love & Light,

Cheryl Doreen

putting it out there

I just want to put this out there-something I have found that helps me “deal” with the dementia devil that has taken over my mom, Dorothy. I remember what she told me about her childhood and since she lives there – in her mind these days- that’s what I ask her about. This is the era she asks me questions about. Most of the time she has no idea she had a life between the ages of 12 and her current state. It’s very interesting to me that she remembers the time in her life when she was little in detail and those who loved her, Granny, Pappy and Delores. It is also very interesting to me that she remembers her great grandsons and her granddaughter. Two totally different ends of her lifeline. These are the people she talks about, these are her people.

Figure out what era of their life do they “live in”, do some research on what was “cool” back then for them. I’m sure they shared some stories with you over the years of their “glory” days. A favorite toy? were they a highschool Jock? a Dancer? a Music/ artists? Did they have a favorite Movie? What was the town, school area they grew up in? Maybe some of it will allow you to connect with them on that level- their world as they know it. Maybe the spark will be brighter in their eyes, maybe they will tell you a story or two- over and over and over again. Maybe not- but it’s worth a try.

Hang in there!

Peace & Love,

Cheryl Doreen

Good Day!

Dorothy had no idea it was Christmas, but I brought her home anyway.   It was a good day.  She sat at the kitchen table, ate lasagna and garlic bread, drank sprite, and seemed to be content.   I didn’t have any idea what to get her for Christmas, so I decided on a stuffed animal. When she opened it, she was as happy as any toddler would be.   She hugged it and looked at it and told us how soft it was.   She did not name it- but she held on to it for quite a while.   Soon enough she asked where she got the bear.  (-:   I could have taken it from her, put it back in the bag and let her open it all afternoon, but I chose not to. 

We had a good day, and Dorothy was ready to go home after about four hours. So, back we went.   Five days later, I got a call from the staff- saying someone had Covid and that they were on lock down for ten days.   They told me that the entire facility would be tested the next day to see who had the virus.  I asked her what they would do if everyone had it.   She said “nothing! there is nothing we can do- except monitor them for breathing issues.  There is no cure- no vaccine that will stop the virus and we will just have to ride this pandemic out”.

I would call and check on mom daily and ask how the “old folks” were- everyone was fine and as far as I know none of the residence got Covid- it must have been a nurse who had it.  When I was able to go back in and see mom we did the same routine- me searching for dirty clothes and her comb and toothbrush.  (-:    I found everything except her toothbrush.  After a shower, hair wash and blow dry. I asked her if she wanted to go with me to get a new toothbrush.  She informed me that she had a toothbrush and did not need a new one- but I could take her to lunch.  (-:

We went to the store first for toothbrushes- and then to O’Charley’s for lunch.   As you know from previous posts- a hamburger is her choice every time.   So, that’s what she had.  I ordered her a cup of Potato Soup instead of fries,  because she loves it.   And she informed me when it came that she had never seen soup like “this”.  LOLOL     She gobbled it up along with half of her hamburger and she was in hog heaven. (-:

On the ride home Dorothy enjoyed looking at the sky and the clouds, she asked me a few questions about her life- again-  like “what happened to me Cheryl?”   or, Is Granny dead?  Is Deloris dead?    “Oh no- Deloris is not dead Cheryl, she just came to see me last week”.  (-: 

Mom also informed me that she was going to live to be 200.    

When we got back to the home, I took her back to her room and made sure her coat and scarf were hung up.   LOLOL,  She kept calling her scarf a neck warmer- it’s not a scarf Cheryl- that’s something different.  Which she is correct- a scarf is something you would cover your head up with when you left the house – to keep your hair in place – so when you got to where you were going- your hair would look like it did when you left your house.  (-:

As she walked me to the door she ran into Poppa- a new resident- who when he saw her stood up and he grabbed moms’ arm and down the hall they went walking arm in arm. As they began walking, she informed me that Pappa was her walking partner.   And just like that- she found a purpose and she was gone. 

Love and Light,

Cheryl Doreen

I’ll take it

The last few times I went to visit Dorothy, it took her a little time to remember who I was.  At first, she thought I was her sister.  She even introduced me as her sister.   It’s ok, I just smiled and played along.   After a little bit she remembered that I was Cheryl.   When she “remembers” she always asks about Jessica- Jessica is her link to her (lost) real life.  Then she remembers the boys and then she asks about them-repeatedly. Where it used to bother me— now, I enjoy it. I understand that now when she asks, I know that she is herself.

I took her out one evening to see the Christmas lights- and at one point she was “here”, she said “Cheryl, I appreciate you taking the time to come and get me and take me out to see the lights”. I’ll take it. (-:

All I could say was “your welcome, mom”.    

It’s tough inside the walls of memory care. But it’s also safe and in mom’s case she is where she needs to be.   I appreciate the nurses and other care givers. For most of them, it is their calling. And for the most part they are very upbeat and kind- to those they have charge over.     

If you can, go see your loved one.  Sooner or later, they will “remember” and it’s a good feeling – for both of you.  Enjoy those times.

Love and Light,

Cheryl Doreen

Another hurdle

Yesterday was a tough day for me.  I went to see mom and she did not know who I was. OUCH!

She was walking and hanging out with friends when I got there. I took her clothes into her room and came back out and watched her.   It looked to me that she and her friends were looking for a door that would lead them to freedom.   They of course did not find it.  One of the nurses came up and was talking to me- then she “yelled” for Dorothy to come over- it’s always a big deal when anyone in the home gets a visitor.   Mom started walking towards me- unaware of who I was, I could see it all over her face.   As she got closer, she did the “I know I know you” but I can’t remember.    Ouch!   It was all I could do to keep from crying. Soon she was face to face with me and said the same thing “I know I know you” -all I could do was hug her and hold on.  I could not speak because my voice would break.   When we pulled apart, she said- “you’re Cheryl”.  Which was a relief to me, and I wished I had kept my sunglasses on. 

   We walked into her room, and I started talking to her with “Mom, blah blah, blah”.  She looked at me and asked me why I was calling her mom.   OUCH again!   I did not reply- I just re asked the question.   The longer I was there the more she remembered who I was.  We called Rosebud and she and Grams had a good phone conversation.  She adores and loves Rosebud- and it’s funny that she is pretty much “here” when she is talking to her.

 We had a good visit and a shower; Dorothy blow dried her hair, and I clipped her toenails. Just like going to the Spa.(-:     She was worn out by the time we were done.   She asked me a few of the questions she always does- and we went round and round for a while.    Finally, she said, let’s go see what happening outside.  I took this as my cue to leave- she walked me to the door that leads to freedom and she gave me a big hug,  she said goodbye, and then she sat down next to her friend and started talking.  

She was happy when I left.  I on the other hand sat in the car for a few minutes and cried my heart out.   I knew this day was coming-and I thought I was prepared for it.  I was wrong, I wasn’t.  I did all the right things- not make a big deal out of it in front of her, agree with all that she says, etc., still I was crushed. But, I accepted this part of the journey she is going through and thought of all the happy, fun memories we have shared as mother and daughter.

I called my sister chick Brenda -whose mom is in the final stages of Dementia- she is not eating, and her body is rejecting her food intake.   Brenda had to make the decision to not put her on a feeding tube.   She is a couple stages in front of me, I wanted to ask her how she coped.   She coped the same way I did; you just do it.  My heart goes out to her and her family and to everyone who is experiencing this terrible disease.   All I can do is ask for Grace for Dorothy and all the others.

Love & Light,

Cheryl Doreen

How old am I?

Dorothy was in a good mood today. Paul and I went early in the day, and she was with her lady friends. Usually, mom is sitting somewhere and unhappy when we pop in. But today, she was hanging with the ladies.  One was carrying a huge purse, and the other was in a beautiful turquoise outfit with some fantastic jewelry.  All three were deep in discussion with whatever the topic of the moment was.  Mom broke away and came into her room to hang with Paul and me.  

It was nice to see her room was not “packed up”; she was not waiting on us to come and take her home.  So, my suggestion to the workers worked. (-:

We visited for a bit; she did not say much about going home; at this point, she told us about her friends and all that they had going on.   She asked me how old she was and – I asked her how old do you think you are?  She said 110, and she also said she was ready to go to heaven.  She is tired of just sitting and rocking.

I helped her with a shower, and in the shower, she must have asked me a dozen times when she was going home.  I answered the same every time.  “Mom, you won’t’ be going home for a while. You need to stay here where you are safe and have your friends.”  She told me that she liked it “here,” but these were not her people.   She misses the farm and the cows and the fields.  I get that- if I grew up on a farm, I would be missing that life also.

The shower wore her out, and as we were sitting around talking, she asked me how old she was. I answered with, – how old do you think you are?  Again, she said 110 and repeated that she was ready to go to heaven.

She asked Paul a few questions about work and asked me about the boys; she then turned to Paul and said, “Paul, how old am I? “Paul replied, I don’t know mom, how old do you feel?   She said to him as serious as anything, well, don’t you have your winkydink with you.   Oh my gosh!  I rolled, laughing so hard.   Paul was looking at her in wonder- as in What are you saying?    Then mom started laughing, and we all had a good laugh for a moment or two.   I asked through tears- “mom, what is a winkydink?   She looked at Paul and said, you know- it’s a metal circle thing with numbers on it. And it helps you build things- all the old men carry one.   She was so matter of fact about this.     BAHAHAHAHA   Oh my gosh!  

We must have been having too much fun because one of the nurses came in and asked if we were okay. Of course, we said we were, and we never gave away the reason for our laughter.   Soon after it was time for lunch. 

All three of us walked out of the room with happy faces and big smiles.   And if I ever want to know how old I am, I’ll just find and ask an old man to get his winkydink out and tell me.   BAHAHAHAH.   

Embrace the good days. (-:

Love and Light,

Cheryl Doreen