Another call today concerning Dorothy – from the hospice nurse. Mom might have had a heart attack- or maybe another mini stroke- something is going on with her and she is on the decline. They will keep a close eye on her the next week and see if she rebounds or not.
Two days ago I went to visit her and she was asleep at 10:00 AM- I did not disturb her. It’s obvious that she is slowing down and getting more confused and just “off”- sleeping more- and sort of living in slow motion. I spent several hours with mom yesterday and it was a great visit. We sat in her room with our chairs facing the the great outdoors. I thought to myself that I needed to go get some winter flowers and put them outside her window- so there is some color to her muted view. Our conversation was upbeat- every time she wanted to cry or be sad- I redirected her to a totally different question- which diverted the tears. I know she is scared and feels alone and totally confused. As her sister- as she thinks I am – it’s my job to help her feel safe, loved and comforted. When we parted she was happy at the lunch table with a big smile on her face. I did the best I could and I feel fine.
It will be interesting how this episode will play out. Will she recover like she did with the mini strokes a few months back? Or will she spiral further? All I can do is pray for Mercy and Grace. As she once told me ” Cheryl, there are things worse than death”. And the older I get- and the more I watch her go through this journey- the more I totally understand what she meant -by these words of wisdom.
The tears they come and they go. I know it’s a roller coaster and I try not to dwell on the sadness of it all. It is hard not to- not to just break down daily. But, then again to breakdown and recover makes you stronger- no pain no gain.
Most of us have lost a parent, partner, child, sibling or grandparent- a guardian who loved us totally and unconditionally. Someone who was there for us no matter what the circumstance. Someone we always knew we could turn to for the truth- no matter what. One thing for sure— watching them suffer and watching their light grow dimmer with each passing day is not for weaklings. Not everyone can do this- and some of us can only do it with certain people. And that is ok, no-one has the right to judge you- especially yourself on yourself- and remember it’s all part of the plan. We live and we die- all differently and in our own time.
Part of the Plan- Dan Fogelberg
I have these moments all steady and strong
I’m feeling so holy and humble
The next thing I know, I’m all worried and weak
And I feel myself starting to crumble
The meanings get lost, and the teachings get tossed
And you don’t know what you’re gonna do next
You wait for the sun but it never quite comes
Some kind of message comes through to you
Some kind of message comes through
And it says to you
Love when you can
Cry when you have to
Be who you must
That’s a part of the plan
Await your arrival
With simple survival and
One day, we’ll all understand
One day, we’ll all understand
One day, we’ll all understand
Love and Light,
I’ve watched you since I was born mom – and I’m still watching you.
I watched you- when I was little- to learn how to do things- communicate, walk, cook, clean, think, process, garden, and make the best blackberry jam ever. (-:
I watched how you reacted to certain situations, and when you chose not to react.
I watched you love us -and comfort us when we were broken. Fight for us when you thought we needed protection.
I’ve watched you adjust and re-adjust, raise 4 babies, and make it work – sew, cook, be a wife, in the PTA, a girl scout leader, a boy scout leader, hold down a job outside the home and be the best you could be.
I watched you be a wonderful nurse to all of your children then in the working world to care and support.
I watched you punish us to make us better humans.
I’ve watched you help us with broken hearts or egos, give suggestions and opinions, lend a helping hand- and I’ve watched you reject helping hands.
I’ve watched you care deeply, lose the love of your life, and put your life back together afterwards and work hard for what you accomplished. I’ve watched you be successful throughout your life.
I’ve watched you watch your children leave the nest, then embrace grandchildren and great-grandchildren.
I’ve watched you love, laugh, and dance. I watched you create and delegate, prosper and grow. I watched you pray and believe, be disappointed and deceived.
I’ve watched you for over 66 years. And I’m still watching you.
These days, I’m watching you slowly forget – you don’t remember dad anymore, you don’t remember two of your sons, you don’t remember where you are, you don’t remember what day, week, month, year it is. You can’t remember our conversation we had 15 seconds ago; you can’t remember I was there a few minutes after I leave. I’m watching you not remember anything and some days it’s painful. Some days you don’t know who I am. I’m watching and learning.
I’m watching you make things up, sometimes you believe them and sometimes I think you say them just to talk.
I’m watching you breakdown and cry when I come to see you, other days you are happy to see me, somedays you sing your song as to where you are, how did you get here and when can you go home.
I’m watching how confused you are, how you are handling it, how you maintain. I’m, watching you get through the night only to wake up the next day not knowing where you are or how you got there.
I’m watching you fade away, not knowing what is going on. I’m watching you forget the most common of things you’ve used all your life and what they are used for.
I’m watching and I’m sorry, sorry there is nothing that can be done for you, sorry that they have not even scratched the surface of Dementia, sorry that I cannot nurse you through the end of your life any better than I am. Sorry that you feel so lonely, confused, deserted and isolated.
I’ll be watching you till the end. Then, I’ll remember watching you and wonder how I will get along without watching you.
Love you mom,
Love and Light!
It’s been a rough few weeks for me- not Dorothy. Dorothy remains the same. Locked inside a mind that is not working properly. Her spirit and heart are still good, she’s happy and positive most of the time. She cries for her Granny and her sister. She is confused and doesn’t know why she can’t go home. She knows me and lights up when I visit. She loves the shower pounding on her back and the hairdryer blowing her hair dry. She appreciates me, she tells me sometimes when she is
“with it” and these times are when I cry. And I ask Why- Why? Why is this happening to my mom?
A dear friend of mine went to a funeral the other day and the Preacher told the family that is was ok to ask “Why”, because by asking why, you are keeping the line of communication open between God and the loved one you just lost. She, like I had never heard this way of thinking. It has always been ” You can’t ask Why” – because you will get no answer. You don’t get an answer by asking Why- either. So, I’m gonna start asking Why more and see what happens to my mindset, heart and soul.
I lost my ex husband a few weeks ago- he had been sick for a few years and we all knew it was just a matter of time- but a long time out. We remained good friends after our divorce- life is short- and it is. We were hoping that the doctors and drugs would work a miracle- or at least a few more years of life for him. When his cancer spread – it was a fast decline. I was able to go see him and spend a few days with him-along with my daughter and son. It was tough and heartbreaking to see him in so much pain, to watch my children have to experience the loss of their dad. To watch his mother, brother, sister, nephews go through this sadness as well.
For me, the happiness of his end of life- was that he was surrounded by his high school sweetheart, the love of his life. His daughter was able to stay with him until the end. His mother, brother, sister and sister in law was with him every day- he was surrounded by family until his final breath. He left with no regrets. What a gift for him, to be surround with so much light and love. It was like he planned it to happen this way.
As I was driving back and forth – I thought about mom and wondered how Dorothy would want to go when it’s her time. Will mom want to go in her sleep- like she has always said? Or would she like to go surround by her family? And of course I wondered how would I want to go- when it’s my time?
Interestingly enough, when I was there to see mom the other day – she talked about dying. She told me she was ready to go. She was tired and done. So, I asked her if she was going to die before Christmas- she said she couldn’t do that- she would probably wait until her birthday in February. She wants to die on her birthday. This was interesting to me – part of me was like- how cool would that be? A full circle of your life here on earth. We will see. I just wish I could do more for her. But, I do believe I am doing what I’m supposed to be doing. And when I see her tomorrow she will probably tell me she is going to live forever. (-:
In honor of Norm ,who many, many moons ago introduced to me his favorite band- Led Zeppelin -here’s a few lyrics to their song “Stairway To Heaven”,
And as we wind on down the road
Our shadows taller than our soul
There walks a lady we all know
Who shines white light and wants to show
How everything still turns to gold
And if you listen very hard
The tune will come to you at last
When all are one and one is all, yeah
To be a rock and not to roll
And she’s buying a stairway to heaven
Rest In Peace Norm.
Lots of Love and Light,
Dorothy is on the downhill slide- and there is no way to tell when she will hit the end of this life. She continues to spend her days helping those around her however she can- with positive energy and mostly happy. She lives in her own world, when she was about 6 or 8. She is stuck there. She does not talk about her children or her grandchildren ( with the rare exception of asking about Jessica and the boys). She thinks I am her sister whenever I go see her and she wonders why I have come to see her. She talks about Pappy and how funny and smart he is and how he will always take the time to help her- unlike Granny- who makes her figure it out for herself. She wonders where her aunts and uncles are and all the children. When I take her outside she talks about not understanding why Granny & Pappy bought such a huge house. She wonders where the cows and the garden is. She talks about her day at school and the school bus ride home. She talks about whatever is on her brain at that moment.
It’s surprising to me that listening to her stories that have a beginning, a plot and an ending- that if I did not know her I would think she was just a little old lady telling something that happened in her life and she is perfectly normal. She sounds natural- she can come up with all the words to form a sentence that can make you believe it just happened. She can go on about a friend of hers who just had another baby and the father is thinking of taking the older kids and leaving her. He has no intention of raising another baby. I’m certain that if a writer would come and visit her for a few days in a row- they would have enough material for at least a 5 year soap opera.
I still sit and listen, agree, ask questions and sometimes give her names of people she is searching for. I laugh sometimes and sometimes I look at her and wonder what the heck is going on with this disease. Does she know all that she accomplished in her life?
For me-it is not getting any easier- it’s just that my scab is so thick that it is going to take a long time for me to heal. The other day she looked at me and knew who I was – she was very serious when she told me that I had gotten old and why did I let all those wrinkles get on my face. She proceeded to count them- out-loud! LOL One by one looking very intently at me as to not miss any. She stopped at fifteen and said “Cheryl- that’s only just from your eye to your mouth”.
All I could do was laugh and say, well – I must have over 100 if you count my entire face. She did not laugh-but looked very concerned and said- How did you get so old. BAHABAHABAHA!!!!!! not something a daughter wants to hear- especially when they look in the mirror themselves and ask- when did I start looking like my mother and when did I get all these wrinkles.
It’s been a struggle for me this summer with Dorothy- watching her steady decline. She complains of her legs hurting more often, her eyes are failing her- both in seeing and the dullness in them now, they are no longer bright lights. Her balance is worse and she either refuses or doesn’t remember to use the walker. She fell again this week. No broken bones- no sign of bruises, but I’m sure her body aches from hitting the cold, hard floor.
I truly believe this will be her end. Falling and breaking a leg, arm or hip. Her wishes state to do nothing to keep her alive. This has been tough to accept- but I am finally there. So, we- will honor her wishes and let the morphine drip keep her comfortable until she goes home -whenever that may be.
In the meantime, I will continue to be her advocate, helper, listener and her sister or daughter – whoever she thinks I need to be in the moment.
Stay strong and do only what you can do. There is a limit for all of us. And remember you are not alone.
Not Alone Anymore – Traveling Wilburys
Peace & Love,
I got the call a few Friday’s ago- Dorothy had a mini stroke or a TIA- which resolves completely within a period of time. 48 hours is the wait and see time for this type of stoke. So, I spent four days and three knights with mom in her Memory Care Room. Waiting on the end, or more TIA’s or a full recovery.
When I arrived- mom was dysfunctional. Her head was on her chest- she could not hold it up. Her arms were failing from side to side. Her speech was slurred, her eyes lifeless.
Since she was so adamant about not doing anything to keep her alive, all I did was sit with her and get her up to walk from time to time. Saturday her speech was back to normal and her head was held high- but, she was very wobbly on her feet. Hospice sent a wheelchair over for her and that is where she spend Saturday. She had her meals in her room and I would wheel her outside and we would sit and watch the butterflies and the clouds drift by . She was able to let me know that Delores and all her friends were in the room. And she wondered why she had so many people with her.
Sunday morning she wanted nothing to do with her wheelchair- so, I was close by and held on to her as we walked. We spent most of this day outside as well. During Breakfast she told me that Jesus had come to see her and she told me in detail what she had witnessed. I asked her questions and she answered matter- of – factly. She told me that she had to finish her assignment before she could go with him. I asked her what that assignment was and she let me know that she did not know- he hadn’t told her. But, she said that he did give her a real cool pencil.
She talks about school a-lot these days. She also still talks about her sister- who she thinks I am most of the time. With her comments on both days about her sister and Jesus, I thought for sure Sunday night when we went to sleep that the good Lord would take her home- but, he did not- it’s not her time.
By Monday Dorothy was her “normal” self. She was stronger in her balance and wanting to visit her friends. So, by noon I was out of there. I will share my experience with her on the inside- another time.
Death Is Only A Dream- The Stanley Brothers
Sadly we sing and with tremulous breath
As we stand by the mystical stream
In the valley and by the dark river of death
And yet ’tis no more than a dream
Only a dream, only a dream
Of glory beyond the dark stream
How peaceful the slumber, how happy the waking
Where death is only a dream
Why should we weep when the weary ones rest
In the bosom of Jesus supreme
In the mansions of glory prepared for the blessed
For death is no more than a dream………………………
It’s not time for Dorothy to dream.
Peace, Love & Light,
I was headed up mom’s- to talk to someone in “charge”. I like to let them know I am paying attention and I ask for clarification every now and then on how this or that is supposed to be handled. Mostly, the cleaning schedule and food choices. When I got a call from the nurse that mom had her earring post back– stuck in her ear and they could not get it out.
When I arrived, mom was in her room- unmaking the bed. She had stuff arranged everywhere and she was in full dementia mode. I greeted her with “hello mom” and a big hug. Then asked her what she was doing and if she needed help. She said she was packing up- I told her that today was not the day she was going home. She looked at me with certainty and stated that she knew that and that the divorce would be final in the morning. So, I asked her if she was happy about it. ” Well of course I am- he’s a no-good man who just chases women”.
My dad died back in ’81 still married to mom- and as far as I knew they were happy. She remarried a man and supported him through chiropractic school- they moved to Texas and opened a practice. After a few years she caught him cheating with someone in the office. She filed for divorce. I wonder if that was where her mind was at those moments in time. I’ll never know.
Anyway, I got her settled down and I tried to see if I could remove her earring- nope. She is a tough lady but the pain was too much. So- off we went to the Urgent Care. What a delightful experience we had at the Wellstar Urgent Care Center on Cobb Parkway North -in Acworth. The ENTIRE staff was excellent! It as such a wonderful experience, if I need Urgent Care- I will travel there. The check in ladies were very pleasant, the nurse was the best ever with mom! and Dr. Z was so relaxed, and calm and treated her just like a child- and honesty that is a compliment. We were there a total of 30 minutes.
She had no idea what had happened 30 seconds after the procedure – or even where we were when we were walking out. But, she did smile and wave good bye to everyone and everyone returned the wave and the smile. It was such a God Wink!
On the way home she was confused and talked randomly about Granny- I just answered as she would want me to at the “time of her mind” she was in. It’s ok, in 15 seconds she doesn’t remember anyway- so why get her more confused or upset in 10 seconds with a “correct” answer?
Note to self and to those of you out there. Take the earrings out of moms ears-add it to the things to do list.
Gretchen Wilson- The Earring Song (-:
Peace, Love & Light,
Dorothy has been slowly crossing over to the next level – Stage 4. Stage 4 – weird- exit left is the only thing left. That -and the final dropping of the curtain. Dorothy has been a blessed woman, she’s been loved, she has loved , she has had many joys and accomplishments and I’m grateful that I got to travel through this life with her.
These days she has no interest in going outside anymore. Sometimes she does not even feel like getting out of her chair and walking me to the door. She’s tired and getting worn down. But, even in her confusion- she is giving help to those in greater need than she. I wonder what her last act of kindness will be.
All I know for sure– that these days– even in the moment –she is not sure what is going on. She will be talking about something and in mid sentence forget what she was talking about. She will laugh at herself and just say ” oh well”!
She also rambles about things that are weird- to her they are not- but to the listener they are way out there. Where does she come up with this stuff? Was it actually reality at some point in her life? Is it from a book that she read in the past? Is it a movie or TV show that she watched? Or is it her creative Imagination? I will never know.
I am content that she is not mad or unhappy- she’s just confused. And I can deal with that.
I hug her, I care for her, I listen to her, I tell her I love her, I accept her as she is- these are the things I can do.
Sweet Child of Mine – Guns & Roses
She’s got a smile that it seems to me
Reminds me of childhood memories
Where everything was as fresh as the bright blue sky
Now and then when I see her face
She takes me away to that special place
And if I stare too long, I’d probably break down and cry
Whoa, oh, oh
Sweet child MOM o’ mine
Whoa, oh, oh, oh
Sweet MOM of mine
I pray that God shows her Grace and Mercy.
Love, Light and Peace,
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,
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:
- 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.
- 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,