Grief, Guilt, Toleration & Reality.

Grief, Guilt, Toleration & Reality

I have been struggling the last several months with all three of these words.

Grief: The pain of mind produced by loss, misfortune, injury, or evils of any kind; sorrow, regret.

Guilt: Remorse caused by feeling responsible for some offense.

Toleration: The act of tolerating; the allowance of that which is not wholly approved.

Reality: Actual being or existence of anything; truth; fact; in distinction from mere appearance.

We all go through waves of these words at times.  Sometimes there are just a few “matters” that haunt us and other times there are a multitude of “matters” that finally disturb us to the point where we need to surrender all the emotions in order to pick up and move forward. 

Ok, I know you all know the meaning of these words- I just had to type them so they are here for me when I need them.  

The experienced while watching Dorothy go through this disease is sometimes overcome with thoughts of guilt- guilt that I cannot do more that I am- or can I? 

  Should I take her in and take care of her 24-7.

Should I live my life to help her live the rest of her days out?  

Grief follows – with the fact that she is sick, and she is not going to get better at all. 

She will never be who she was in mind. 

The dragging on of her life seems so unfair.  

The Toleration and Reality finally ground me again so I can get back to normal.

The toleration that this —is the way it is, and I cannot change it or fix it in any way.        

The Reality that it’s okay. This is the way it is. This will pass. I am doing all that I am capable of.

The Way It Is- Bruce Hornsby & the Range

I was rereading my posts- to see if I could find anything that I’d said before -to help bring me back up from my hole I was stuck in- and I found this.   I like it, so I’m going to share again.

Acceptance=the willingness to tolerate a difficult or unpleasant situation (Webster)

We need to dig deep for this first step- most times, what’s hard to accept certain situations -that life has thrown our way.

Faith = the substance of things hoped for, the evidence of things not seen (Hebrews 11:1)

We need this to understand that there are things we cannot feel, touch, or see- but they exist.

We all have this- I feel my faith through my intuition- I just know it to be so.

Strength = the emotional or mental qualities necessary in dealing with situations or events that are distressing or difficult. (Webster)

We need to have this to continue to stay grounded and be prepared. I believe if you will stand in the “superhero pose” (feet apart, hands on hips, shoulders back, head held high) right before you need your strength the most- it’s always there for you.

It’s heartbreaking -dealing with a terminal ill loved one.  They seem to have lost Acceptance, Faith, and Strength.  The caregivers/family members still carry it– till the end.  

It will be okay.

Love & Light,

Cheryl Doreen

Another Fall

I got a call Friday night that mom had fallen.  They don’t know what happened or when it happened.  Because they are not with her 24/7- they are only there when needed.    They wanted to call 911 and send her to the hospital via ambulance.   My stance is still the same.  No, don’t send her, I’ll be there as soon as I can.  I don’t understand how they think that it’s okay to send a dementated person to the emergency room by themselves and expect anything good to come out of it.   – See post from last January when they sent her to out to emergency room during Covid for an upset stomach.   )-:

I was there within 30 minutes- Dorothy was in her room with a “care giver” sitting up and they were talking.  They did take her vitals, and all was good.   She had a large bump on the back of her head and some bleeding.  She had dried blood in her hair which made it look worse than it was.    I asked if they had given her a pain pill, which they had not, I ask them to give her one which they did right away. 

I helped mom to the bed, laid her face down and not having any first aid kit with me- I used what was available.   Warm water and paper towels. There was some “bed pads “that I put on her pillow to keep it from getting wet and I tried to clean up the cut to see what was happening.   I asked the care giver if they had a first aid kit, and he went to see.   A nurse came back with him with some sterile spray and some gauze squares.  I told the nurse that I would deal with mom, because I know they are not allowed to do so.  I got her cleaned up and decided that she did not need to go to the hospital.  The nurse had called Hospice – mom is under their care- and the Hospice nurse was a few hours out- at this time it was 9:30 P M.   I expressed to the Hospice Nurse that there was no need to come tonight and asked if she would come the next morning at 8:00. 

The entire time Dorothy kept saying her head, neck and back hurt and wanted to know what happened.  She had no idea she fell, even after telling her numerous times.   The pain pill was kicking in, I helped her in her PJs and put her to bed.   She was asleep within a few minutes of the PJ’s going on.

I had to sign a few papers stating I declined for Dorothy to go to the Emergency Room and that I took full responsibility.   I had to write down my conversation with the Hospice Nurse and sign that as well.     On the way home I spoke with God and told him I knew that it was up to him, either Dorothy died that night due to a brain bleed or she would not. Either way I’d be okay with whatever the outcome was.

Paul and I went returned the next morning in different cars- not knowing what to expect.  We arrived at  7:15- mom was up, dressed and walking around.  She said that she was hungry and that her head hurt.  She told me to look at the bump on the back of her head.  How did it get there?  How did it happen?   We talked about it. She of course has no recollection.

I gave her a shower, washed her hair and her bump was much smaller and there was no more bleeding. We dressed and it was time for breakfast. We took her to the breakfast table and went back to her room.  We were waiting on the Hospice Nurse- she came and went without us knowing.  She called as soon as she left- and told us she looked at mom and she looked good- and that she had put iodine antiseptic on her cut and her vitals looked good.  She said we made the right decision by not sending her to the ER.    I told her I was sorry we missed her, we were in Dorothy’s room and were waiting for her.   No worries, glad all is okay.  

Paul and I decide to go ahead and leave, we both knew that mom would not remember us being there anyway and we agreed she’d be okay.  On the way out we notice mom asleep at the table with her fork in her hand.  Paul went ahead and left, I went over to mom and gently woke her up and encouraged her to eat.  She was so weak- they had given her a pain pill before we had gotten there. (before breakfast?)  With the pain pill, the shower, and the trauma to her body- she was exhausted.  Dorothy was so weak that she could not manage her fork.  So, I put food on it for her- handed her the fork and she ate.  She would drift off while eating and I’d bring her back by another fork full of food or a drink of juice. 

Two side notes here:

  1.  I looked around and noticed that most folks could not eat their breakfast.  They could not cut the sausage, or they struggled getting the eggs and grits on their forks.   Others were slumped over asleep. I had to wonder if this is a daily occurrence at feeding time.
  2. I found myself struggling with putting food on mom’s fork.  She was very adamant about no one feeding her.   I rationalized that I was not feeding her, I was merely putting food on her fork.  She would have to put it in her mouth she would have to drink by herself. 

She ate about 1/3 of her breakfast and I helped her back to her room.  She asked why her head and neck was hurting.   I calmy explained what happened.   When we got to her room, I helped her on her bed.  I made sure she was comfy and coved up with a blanket.  I stayed until she was asleep knowing I’d be back later in the day to check on her again.

It was a calm ride home.  I wondered how many more of these opportunities I would get to help her from a fall.   I wondered how many more falls she would have.   I wondered if she falls and breaks another hip, shoulder, arm or whatever.  What will Paul and I decide to do?   Have them fix her?  Or just let her be in pain? Let her suffer and wilt away?   Or fix her for another fall?

I did go back to see her later in the day, after dinner to see how she was.   When I walked in, she was sitting on the couch with a few of her friends watching TV.  When I walked in- she lit up like she hadn’t seen me in a long time.   She came to me with open arms and a big hug.  She said she was so happy to see me.   I returned the hug and the exchange.  We walked to her room, and we sat down.  I opened the blinds and the window.  We looked at the clouds and the beautiful blue sky.   She asked the questions, I answered them.  Most of the conversation was her song she used to sing.   We sat like that for a long time her asking questions, me answering them.  As I was sitting there I was thinking what a great memory we are making -for me to hold on to. 

 It was not Dorothy’s day to die.  She is still with us, she has more to give.  I just hope the people that are supposed to receiving her gifts are listening.   I know I am.

All I know for sure is all our days are numbered.  We will never be as young as we are now; we will probably never be as healthy as we are now.  We need to live our life as we want to live it.   We can care about other people, but we cannot live our lives for them, and we cannot let them live their lives for us.  And we cannot tell them how we think they should live their life.  We only get so many days to be joyful, happy, give and receive love, and most of all soak up this “heaven” here on earth.

Part of the Plan – Dan Fogelberg

Peace & Love,

Cheryl Doreen

Belated Mother’s Day

Mother’s Day came and went- It was good to see mom.  I remember when I was little growing up with my three brothers (explains a lot of why I’m like I am – lol) we would celebrate Mother’s Day in a carefree child’s way.  For years, we would go to church with mom – we would get up at the designated time during the Service and sing a Mother’s day song with all of the Sunday School Class.    She would be special, like all the other mothers who sat tall and proud in their Sunday best, with a corsage pinned to her dress.   Most moms of that era had at least two children- mostly more.  Mom had four of us to be proud of and four of us who showed extra special love on that day- with a homemade card and picture we drew or a plaster handprint made the week before.   

 She never really got a day “off” until we were in our teens, when we came to understand how much she sacrificed, encouraged, prayed, guided, and most importantly loved us.  We would make breakfast, lunch, and dinner and at times bake a cake for her special day.

 Over the years it has gotten simplified to a card, flowers, or a phone call.  Being a mom myself, I have experienced this same journey.  Along with loving my children, being proud of them in whatever way I can, supporting their decisions- not always understanding them and sometimes not accepting their decisions-but letting them live their journey as they wish.  Sometimes this decision leaves you out of their lives and that’s ok.    Ramble on- I guess what I’m trying to say is my mom and 4 kids, 2 of us stayed close to her while 2 chose to separate from her.   I can relate.  Early on when two of my brothers went their own way, I could not understand it and wondered why. I also wondered how mom could “carry on” without all of us.  As I grew older, wiser and saw life at different stages I understood how she did it.   You just love your children enough to let them live the life they want to live.

Anyway, lol ……. after that long release of thinking- mom and I had a wonderful 66th Mother’s Day together.   She still knows me, she still loves me, she still doesn’t remember much of anything, but she’s still my mom and I am able to remember for the both of us.

 I have a ton of special Mother’s Day celebrations memories with her, and I look forward to many more of my own Mother’s Day Celebrations.

I’m trusting everyone had a Happy Mother’s Day in their own right.

Peace & Love,

Cheryl Doreen

What’s the matter with my skin?

Dorothy was a happy camper when I went to see her this week.  She was in her room with the door locked.  I knocked and she answered, “who is it”.   I replied- “your favorite daughter”. LOL I’m the only daughter, so it makes it easy to be the favorite. She opened the door with a huge smile on her face and we had a great hug.

It as a beautiful day so I opened her windows to let in some fresh air.   And started my hunt of finding things.   She was very talkative and happy.  She helped strip the bed and was too tired to help with putting on new sheets.  Before looking through her chest of drawers, I asked her to pick out some clean clothes for her to put on after a shower.   This task keeps her occupied.       In one drawer of her chest I found several pairs shoes and slippers.   I asked her about it, and she responded, “there was no place else to put them.”  So, I asked her to see if there was any room in the closet.  She found some room and she moved the shoes.  I wondered how long it will take her to move them back after I’m gone. (-:

When my grandsons were little and looking for their shoes, I would play them the awesome BB King video about his song “One Shoe Blues” he sings and stars in it.   Check it out it’s worth 2 minutes of your day.  (-:  

I also found the remaining photos of her granny & pappy and her sister and her with her daddy.  I decided to take them home with me.  Often, they are wrapped up in a towel and placed in the drawer.  Maybe this was a good thing, maybe not.  We will see. I can always bring them back if need be.

After the shower she looked like a new woman, all sparkly and clean.  (-:     She was worn out and needed a rest.  She laid down on the bed and after a few minutes she raised up her arms in front of her.  She asked “Cheryl, what happened to my arms?  Just look at them.”  I responded with “what’s the matter with them.”  She replied, “don’t you see how crinkled they are?”   I chuckled out loud and responded well, you’ve had that skin for a long time- how many years do you think you’ve had those arms?  She replied with “well, two or three years at the most.”  Then laughed and said, “I always forget how old I am, let’s see, I think I’m 94.”  I asked her how she expected her arms to look after 94 years.  Her response was “well, I took really good care of it.” As she was still examining her skin, then said, “well I guess my skin didn’t like the way I took care of it”

I assured her she looked good for 94- she gave me a huge smile and said, okay “who’s going to put my socks and shoes on? Am I going to have to do that too?”   I laughed out loud as did she. The skin issues moved on.

Peace & Love,

Cheryl Doreen

Granny’s Vases….

Dorothy was in a good mood when I went to see her the other day, so I decided to get her out and took her home with me.  It was a beautiful spring day, the sky was blue, the trees were beginning to bloom with the color of April green.  The flowers were popping, and it was warm enough to have the car windows down.  Dorothy had no idea where she was and kept asking “where are we?  Nothing looks familiar.” Then she’d ask “how’d I get here, who else lives here in this State? I don’t remember moving here.”  It was a long ride to my house, LOLOLOL.  

Dorothy had no idea where she was, but she did see a few plates/vases that were her granny’s- which she passed down to me.   When she saw them, she asked me how Granny’s vases got here then she told me the story on how Granny got them.  It’s interesting to me that she cannot remember where she is, but she can remember the long-ago memories.  But that is where she is living these days in the long-ago past.

We had a good lunch; a sandwich, chips and a Sprite and she was ready to leave shortly after. The way back was pretty much the same as the previous ride, with mom being confused on where and why.

When we got back to the home, we did the shower routine and she felt like a new woman.   As soon as she had finished brushing her teeth, she told me it was time for me to go– so she could go visit her friend.    

There is plenty of day-to-day life at the home for her, I suppose that just like my life- some days are easy, other days are filled with unexpected happenings.  Some days we just go with the flow and other days we want to go and hide, be by ourselves and just sit down and cry and wonder what happened, how did I get in this situation?  But most days Life is Good!

It was interesting to me that she does not sing her song much anymore.

The mind is a wonder.  And maybe I don’t need to worry about what she can’t remember and focus on what she remembers now.  Because all too soon, it too will be lost.

In My Life – John Lennon

There are places I’ll remember
All my life though some have changed
Some forever, not for better
Some have gone and some remain

All these places have their moments
With lovers and friends I still can recall
Some are dead, and some are living
In my life I’ve loved them all………………….

Love and Light,

Cheryl Doreen

They won’t let me walk to school

Dorothy called me the other day, with the help of one of the nurses. She was calm but confused. She did not even say hello- she went right into “I’m concerned because they would not let me walk to school”.   That was the last thing I thought would come out of her mouth- so I asked her if she was ok, her answer was yes.  I asked her how far it was for her to walk to school.  She thought for a moment and said, “probably too far, that makes since why they won’t let me walk by myself.”   She told me she was going to ask them if she could catch a bus or if someone could drive her.   I told her it was the weekend and there wasn’t going to be any school for a few days, so she had nothing to worry about.   Problem solved. (-:

I wonder, but I do not want to experience what she is going through. Everyone there is different in the mindset of where they are and what they are.  It’s weird.  But it’s her journey and she is where she is supposed to be.   I’m just a helper – to help smooth out the rough spots and bring attention to the things that are happening that shouldn’t be.  (In my mind anyway.)

I’m glad the weather is warming up – I will be able to take her out for an ice cream again.

School’s (almost) out for the summer- Alice Cooper-

Love & Light,

 Cheryl Doreen

Rooster

Dorothy was in good spirits yesterday when I went for a visit.

I won’t go into the issue with her bathroom sink being clogged and me having to report it.   I have questions- but will go into it with the home.   Just be aware and “on the lookout” for these situations -if your loved one is in Memory Care- and please don’t be afraid to speak up.  Speak up loudly, firm, and politely, you are your loved one’s voice at this stage of their lives.

She was happy to see me, as was I to see her.  (-:    she sat on the bed as I swapped out clean clothes for dirty ones- and did my “easter egg hunting”.  She was excited to take a shower and get “clean” as she called it.  Be on the lookout for used “day diapers” you will find them everywhere.

 After wards we went out to the dining area, sat at a table, and colored.  I had gone picked out a simple coloring book- the ones you would purchase for a two-year-old.  With just one picture per page- of a dog or a rooster or a duck.  Simple one object per page.

 She picked out a rooster- we sat, and we colored for about 20 minutes.   I- in that time colored two pages- when I looked at hers, she only managed to color just a small portion of one section of the rooster’s comb. As I watched her, she was so focused on what she was doing, it was like she had to get as close to the line of color she had just placed down before she would draw another line.  It was “perfection” not scribble, scribble as a small child does.   She finally looked at me and told me she would have to finish coloring later- it was too hard for her to do right now.

As we sat there coloring, we talked- like old times, she told me that I did not have to worry about her, that she was fine ‘here’.  She assured me that she felt safe, and she had some friends.   She asked about Jessica and the boys, she asked if Paul ever married that girl.  ???   First, I have ever heard of Paul wanting to marry someone, but I’m sure she was thinking of Paul and someone else at the same time.  But, maybe not all families have secrets.  She told me I was a good daughter for coming to see her and take care of her.  Which brought warmth to my heart and a few tears to my eyes. The point is- she was present for few minutes, she was mom. 

Her friend Martin came around the corner and she told me she had to go.   So, I packed up my colors and left. (-; not without hug.

It’s all inclusive- all of it- all the crazy stages dementia puts them through and us as well. 

Peace- Norah Jones (worth a listen at least once a week (-:  )  There’s a place that I know

                                                                                                  Where the sycamores grow

                                                                                                  And the daffodils have their fun

                                                                                                  Where the cares of the day

                                                                                                  Seem to slowly fade away

                                                                                                  In the glow of the evening sun

                                                                                                  Peace, when the day is done ….

                                                                                                   ………………

-Steven Rimmon Siler/ John R Mandeville

Love and Light,

Cheryl Doreen

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