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

Let It Be

When I went to see mom this week, she was thinking it was 1920- which was weird for me- she wasn’t even alive then.   She introduced me to a few of her friends as her sister, I did not correct her.  She wanted to know where Granny was and why Granny had bought such a big house with all these rooms.   She wanted to know when Pappy was coming in from the barn.   She wanted to know why she was not at home.   She is so confused.

Last week when I was there, I asked the workers not to tell mom I was coming- I told them I thought she might be thinking I was coming to take her home and therefore she is packing up everything. They “got it” and told me they would not tell her I was coming. This week when I was there, she had only “hidden” her toothbrush and toothpaste. It was easier to manage my time with her.   We took a shower – and she helped change the bed.  She even told me to take a few things she did not need anymore.   I was shocked for a moment- then I understood, too much stuff is confusing for her.  

She also told me it was time for me to leave.  Which was also weird for me, but again I get it.  She has no idea what is going on or how long I’ve been there.   I do know that she is in a good place, a place where I don’t worry about her.  I know she has a nice bed, clean clothes and at least a shower once a week.    (-:  

I also know that Dorothy is a helper, and she is a comfort to and for her friends.  She remembers she was a nurse, and her skills are still used every day to help those who are having a rougher time than she is.  I know that from moment to moment it is different and sometimes difficult for her, and I believe that God’s Grace gives her more happy moments than sad ones.

It’s tough- those of you who go through it know it.   Just “Let it Be”.  (Beatles)

Love and Light!

Cheryl Doreen

Nothing better than milkshakes

Today when I went to see Dorothy she and Martin were in her room. Mom was sitting on the bed and Martin was in the rocking chair. They both had discusted looks on their faces. A cross between mad, sad and fed up. At first glance it almost looked like they were planning their escape.

In a cheerful voice I said “hello, kids”, with a big smile- which was not received by either with any happiness at all. The look from mom got madder and sadder. So, I went right into why don’t we go for a ride and get some Ice Cream. Why don’t we see if Martin can join us. To which mom replied, “You are going to do more than take me for a ride, you are going to take me home”. I did not respond, instead I said we need to check with the folks in charge to be sure we could take Martin out with us.

So I headed to the powers that be and asked if Martin could join mom and I for a ride and some Ice Cream. They of course had to reach out to Martins family who agreed to the outing. And I was sure to ask if Martin had any dietary restrictions.

So, the journey out of the big house begins. I was in the middle holding both of their hands. It was interesting to feel how soft and strong both their hands were. Holding their hands made me feel like a little kid again. They were not clinging on for dear life, but they were holding firm. We made it in the car safe, got settled in- it’s interesting that neither one could fasten their seatbelt. And off were, in search of Ice Cream, with Dorothy in the front and Martin in the back.

It was a beautiful day full of blue skies and clouds. We drove out of the city and into the country. Past the lake and state park, in the distance we could see the mountains. At one point mom said to me ” Cheryl, you will have to go back to the city, country folks do not have ice cream stores.” I was shocked at this because we had only talked about ice cream twice. But, then again when you tell a child you are talking them for ice cream they do not forget either. (-: I laughed at this comment and assured her we would find ice cream.

On the way up, there was small talk about what they saw, mostly Dorothy, Martin was quiet. At one point we talked about cars and I asked him directly what kind of car he like to drive when he was younger. His reply was ” any that ran”. LOLOL Not sure if he grew up with lemons- or if his was his since of humor.

We stopped at a Chick Fil A and settled on milk shakes. I thought this would be the easiest and safest treat for them. When I asked them what flavor they wanted- they knew right away, there was not telling what their options were.

On the ride back they did not say anything. LOLOL They were busy sucking on straws, we were almost back when i heard the famous slurping of the straws, they were both trying to get out the last of the shake. LOLOL, again, just like two little kids. LOL It was perfect!

They were both in a much better mood and had big happy smiles on their faces. When we were getting out of the car mom asked me if Martin lived in the big red house too. Yes, was my reply- hers was okay, good!

When we walked into the Memory Care Unit- most everyone was out – and got to see them walk in. I wondered how many of them were sad that they did not get to go, how many of them know that they were coming back in, how many of them get to go out from time to time with their loved ones.

The best thing about the afternoon- besides being able to get both of them out for an hour or so was that mom did not sing her song- not once. She talked to Martin and me from time to time but not singing. It was a good day?

Add this to the list of facts about Ice Cream making you feel better. I saw it work first had, just the other day.

Peace, Love and Light,

Cheryl Doreen

Upset and mad

Paul and I went to see mom together.  That day when we walked in Dorothy had her finger in Diamond Jim’s face- giving him a what for.    I had been in his shoes hundreds of times when I was younger, so I knew what he was experiencing.  I felt bad for him, so I went straight over to see what the issue was.   Mom was so mad, and Jim was just looking at her – not knowing what to do. 

After I greeted mom with hugs and was able to redirect her to her room where Paul was, she was still upset.  I have seen that look before and it was not a pleasant look.   She kept saying he’s the one that knows what’s going on and he’s not telling any of us.  It’s just not right!  After we got her calmed down- never ask what is going on- only redirect.  I suggested that her and Paul go out for a ride.   Paul took my que and escorted mom out of the room.   He told me later that she was upset for most of the ride.

I went out to say hello to Jim – as I usually do- he is one person that I would love to have the opportunity to talk to and here his story.    He was fine and answered a few of my questions about how he was feeling and if he was having a good day.  He asked me if I had seen his brother and I told him no, not today.   I told him I would see him later and left- just as a normal visit.

I went over to the nurse and asked her what had happened- why Dorothy was so mad at Jim.

She told me that mom had been going around to each person individually and letting them know that the bus was coming to take them out.  Dorothy thought that Jim was in charge, when she asked him what time the bus was coming, he did not answer.  Of course, he had no idea what she was asking.  And that point she got upset because she thought he was the one in charge and was keeping secrets.   This of course ticked her totally off which led to her finger in his face.    Did I mention it was the full moon?  {-:

Wow- workplace drama in Memory Care. I’m sure it is a daily occurrence. I can’t imagine what everyone goes through on a daily basis-both individually and as a collective click.

I do know that I appreciate those who have the gift to assist the demented.  God Bless them!

When we left mom, she was redirected and not in Jim face- I can’t tell you if she was in his face 45 seconds after we left or not- but when we left -she was at peace.

Love and Light,

Cheryl Doreen