Easier Said Than Done

 

Yesterday when I was with mom, I started to wonder if mom’s dementia is reaching another stage.  The world between what is real and what is not keeps rearing its ugly head. 

Mom could not wait to tell me that they are doing tests on her.  When I asked mom what kind of tests, she could not explain. I tried to reassure mom that they cannot do any tests without my permission. 

As Billie* walked by I mentioned what mom had just told me that someone is doing tests on her.    

 “What kind of tests, Gilda?” Billie* asked mom.

Mom made several attempts to explain, but neither one of us could understand what mom was saying.

Billie* tried again, “Who is doing these tests?”

Mom shrugged her shoulders, “Forget it.”

“Gilda, there are no tests. Don’t worry.”

Mom repeated what Billie* said, “Don’t worry.”

“Mom, are you in any pain?” 

She shook her head no, and then said, “When is . . . going to be over?”

 “God knows; no one else does mom.”

 

 

Even though we all try to convince mom not to worry, mom has so much time to think and her mind to wander.  The only way I know to truly comfort mom is to pray with her.  What I pray for is mom’s peace of mind and the patience for us all to accept God’s plan.

Best Decision

Last Sunday when I visited she was worried, “Dana’s* mad at me.” 

“Why would you think that she is mad at you?’

“She’s . . . not . . . here.” 

“Mom, I am sure Dana* is not mad at you. She does not work on the weekend.”

Mom shrugged her shoulders.

“Mom, she will be here tomorrow you can ask her yourself. I promise you that she is not mad at you.”

“Talk . . .  t’her. . .   don’t  . . . want . . .   lose her, Julienne.”

“I will call her Monday, mom, just to make sure.”   Mom felt better knowing I would make sure Dana* was not angry with her.

***On Monday, I called Dana* while she was at The Community*. 

“Dana*, mom is worried that you are mad at her.”

“I know she said that to me.  I told her we are “Friends Forever”.

Today Wednesday I visited mom again.  “Mom, I spoke with Dana* like you asked me.  She was never mad at you.  She told me that you and she are Friends Forever.”

Mom smiled, nodded her head and repeated, “Friends Forever”.

“Mom, I know she likes you very much and she takes great care of you.”

“Oh  . . . I adore . . . her,” Mom said smiling.

“Dana* adores you too mom.”

Putting mom on hospice has been one of the best decisions that we have made for mom’s care.

Worth Reading

"I wish you enough!"© By Bob Perks

I never really thought that I'd spend as much time in airports as I do. I don't know why. I always wanted to be famous and that would mean lots of travel. But I'm not famous, yet I do see more than my share of airports.

I love them and I hate them. I love them because of the people I get to watch. But they are also the same reason why I hate airports. It all comes down to "hello" and "goodbye."I must have mentioned this a few times while writing my stories for you.

I have great difficulties with saying goodbye. Even as I write this I am experiencing that pounding sensation in my heart. If I am watching such a scene in a movie I am affected so much that I need to sit up and take a few deep breaths. So when faced with a challenge in my life I have been known to go to our local airport and watch people say goodbye. I figure nothing that is happening to me at the time could be as bad as having to say goodbye.

Watching people cling to each other, crying, and holding each other in that last embrace makes me appreciate what I have even more. Seeing them finally pull apart, extending their arms until the tips of their fingers are the last to let go, is an image that stays forefront in my mind throughout the day.

On one of my recent business trips, when I arrived at the counter to check in, the woman said, "How are you today?" I replied, "I am missing my wife already and I haven't even said goodbye."

She then looked at my ticket and began to ask, "How long will you...Oh, my God. You will only be gone three days!" We all laughed. My problem was I still had to say goodbye.

But I learn from goodbye moments, too.

Recently I overheard a father and daughter in their last moments together. They had announced her departure and standing near the security gate, they hugged and he said, "I love you. I wish you enough." She in turn said, "Daddy, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Daddy."

They kissed and she left. He walked over toward the window where I was seated. Standing there I could see he wanted and needed to cry. I tried not to intrude on his privacy, but he welcomed me in by asking, "Did you ever say goodbye to someone knowing it would be forever?"

"Yes, I have," I replied. Saying that brought back memories I had of expressing my love and appreciation for all my Dad had done for me. Recognizing that his days were limited, I took the time to tell him face to face how much he meant to me.

So I knew what this man experiencing.

"Forgive me for asking, but why is this a forever goodbye?" I asked.

"I am old and she lives much too far away. I have challenges ahead and the reality is, the next trip back would be for my funeral," he said.

"When you were saying goodbye I heard you say, "I wish you enough." May I ask what that means?"

He began to smile. "That's a wish that has been handed down from other generations. My parents used to say it to everyone." He paused for a moment and looking up as if trying to remember it in detail, he smiled even more."When we said 'I wish you enough,' we were wanting the other person to have a life filled with just enough good things to sustain them," he continued and then turning toward me he shared the following as if he
were reciting it from memory.

"I wish you enough sun to keep your attitude bright.
I wish you enough rain to appreciate the sun more.
I wish you enough happiness to keep your spirit alive.
I wish you enough pain so that the smallest joys in life appear much
bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish enough "Hello's" to get you through the final "Goodbye."

He then began to sob and walked away.

My friends, I wish you enough!

Note:  When I read this article, I thought this story was worth blogging.

Au Naturel

During my visit with mom, she asked me to make her an appointment to color her hair.  Since mom has not been able to leave the premises due to her mobility and fear for the past few months, she has no choice but to get her hair done by the only beautician they have at this location.  

I have already addressed the situation in earlier blogs that Sharon* specializes in old fashioned roller sets and putting her clients under those old fashioned dryers. Most residents have gray or white hair.  To be honest, I am not sure if there are but a handful of women if any that have their hair colored there. 

No longer is having mom’s hair done an event for us to do together.  The beautician here does not set up an actual appointment for her clients.  She informs them what day she will come for them, but they do not know what time.  Unlike the other location where the beautician does one or two people and you can enjoy their company here it is like an assembly line. At any one time there could be four or five residents waiting there.

Mom never feels special and to be honest her hair never looks like before. I am just thankful her hair is clean.  When mom used to get her hair done at the other location with me, she would get several compliments on how nice she looked.  Of course, mom always felt so proud.  Those days are over.

I assured mom that I would check with Sharon* to see if she would be able to color-treat mom’s hair this week.  Her comments were that mom’s hair is damaged and she feels too brittle to color treat her hair.  If I still want to have mom’s hair colored, she would not take any responsibility should mom’s hair fall out or break off.   In fact, she requested that should I choose to still require her to color mom’s hair that I must sign a letter stating I am holding her harmless.

My gut feeling told me that this was a no win situation.  I will just have to explain to mom that she will not be able to have her hair color treated anymore.  I am just thankful her hair is clean.   

To some woman going gray is totally acceptable, but to mom not being able to have her hair color-treated is just one more pleasure taken away.

Truth or Consequences

Months ago when I researched dementia and its symptoms, one of the scariest symptoms to me was ‘confabulation’, that is, when I understood its meaning.  Confabulation is when a person believes he or she has done or experienced things that never happened or that something has occurred to them when it had not.  Mom has experienced this problem a few months ago, but this symptom seems to have reared its ugly head again.

When visiting mom on Monday, she was disoriented.    Mom kept repeating the same thing over and over, “Did . . .  you . . . hear?” I was trying to piece together what mom was trying to tell me by asking her questions.  Finally, mom was able to tell me that someone had made her cry.  When I asked why she cried, mom said they pushed her.  I told mom that I was sorry anyone made her cry, but I am glad she told us.

I asked Dana* over so she could listen to mom’s story, too.  Dana* said that mom had told her the same thing earlier that day.  From what we made out of mom’s attempts to express herself was that the person wanted mom to go back to bed and mom did not want to.  Mom said it was time for lunch.  I guessed that mom must have meant breakfast.   When we asked mom when this happened, mom said a few days ago.

We also understood mom to say, “They  . . .  so . . . rough”.

I responded, “Mom, I wish they were all gentle with you.  I know sometimes the person may be in hurry and they may be too rough.  I do not think they mean to be.” 

Dana* said she had spoken to mom’s nurse who reported mom’s statement to the head of nursing who immediately talked with mom.  The Community* takes these accusations seriously as I would hope they would.  But they also realize mom has severe dementia. 

I was terribly upset that someone might be mistreating mom, but I also understand that this issue may never have happened.  She may have dreamed this while she was sleeping or mom may have woken up in the middle of the night disoriented and tried to get out of bed like she has in the past thinking she is late for breakfast.  We will just never know.

I do know that the staff at The Community*  take their positions and responsibilities seriously.  I have seen them have the patience of Job in tough situations, but I also realize that they are only human.  The residents in mom’s section can be trying and I have often thought to myself that I am so glad they have patience because I am not sure I would.

As people age their skin gets extremely thin and their bones ache and even when we try to be gentle we can hurt them.  I know I am concerned not to squeeze mom too tight when I hug her.

The problem with dementia is that sometimes the person’s reality is a far cry from what actually happened. I did thank mom for telling me what she believes happened because I want her to not be afraid to tell me anything.  I hope mom's incident never occurred or was exaggerated in her mind.

 My goal is for mom to be treated with dignity and respect; what I believe everyone deserves.

Switching Tables or Not?

On Wednesday late afternoon, I received a call from Dana*.  She wanted me to know that the aides in the lunchroom had suggested having mom move to another table for lunch where the staff would be able to assist mom during lunch to help her eat.  Mom had refused to go stating that she did not want to leave the table she always eats at because her good friend, Darlene*, sits with her.

When they insisted she move, mom said, “Call my daughter . . . see what she says to do.”  I understand that they want to put everyone who needs help eating together so the staff can help those residents and make sure they eat.  But more importantly I understand mom not wanting to leave her one place that she feels so comfortable.

Dana* mentioned that she would make sure the staff would keep mom and Dana* together all times but while they ate.  I understood that mom has lost 29 pounds since she first was admitted there and knew they were concerned that due to mom’s tremors she is not able to do a good job feeding herself.  Dana* and the staff are only doing with mom’s best interest at heart. Since mom does not talk on the phone, Dana* assured me that she would let mom know that we talked.

On Thursday, I woke up deciding that I would go over to see mom and stay to help feed mom during her lunchtime.  Mom was happy to see me.  She looked beautiful dressed in a sweater that Sandy had given her.  She was alert; her hands were clasped together in a peaceful manner on her lap and she had a nice smile on her face.

“They called . . . you?”

 “I came to help you with lunch, mom.”

“My mind’s . . .  blank, Julienne.  I  . . . don’t . . . make  . . . sense.”

“I am sure that is frustrating, mom.  They cannot help you if they do not understand what you are saying.”

“Right!” mom shook her head in agreement.

I saw that mom did not have a blanket on so I asked her if she would like the blanket that she received from Tracey and Jeff this Christmas.  She agreed.

When I laid the blanket on mom’s lap I said, “Mom, this blanket is so soft.  You will stay warm.”

“Did they make this blanket by hand?” mom has made several gorgeous Afghans and she thought her blanket might be handmade.

“Mom, they bought this blanket for you to keep you nice and toasty.”

“Oh . . . yeah.”

Mom looked so nice that I asked her if I could have someone take a photo of us together.  We have not had a new current photo of mom in way over a month because I knew she did not feel good enough to have her photo taken.  She agreed and liked this photo.

“Mom, when we go in the lunchroom you will have to show me which table they want you to sit at now.”

“I want . . .  Darlene*”.

I did not want to argue with mom so I wheeled her into the activity room.  Darlene* was sitting at their table all by herself.  I sat mom in her normal place and pulled a chair up for myself.  Darlene* was happy to see both mom and me.  I went over the selections with mom and she chose what she wanted to eat.

Mom ordered roast beef with mashed potatoes (no gravy as mom says: it runs right through her), bread, fruit cup, and cranberry juice.  The food smelled and looked delicious.   I asked mom if I could cut up her roast beef and she agreed.  She initially began to pick up the meat with her fingers until she announced that she would like to use her fork. 

Although mom’s hands and mouth shake profusely, mom never gave up using her fork.  She was able to feed herself two large portions of roast beef, half of the mashed potatoes, half of a slice of bread that I cut in small pieces and her fruit cup. 

Mom has the toughest time trying to drink her cranberry juice. She has the best success if she does not try to pick up the Styrofoam cup with the straw and rather leans over the cup and sips out of the straw.  Though sometimes mom forgets and reaches to pick the cup up.  There have been many incidents recently of mom being covered in cranberry juice due to her not being able to hold on to the cup.

While mom was eating the roast beef I said, “Mom, I bet that roast beef melts in your mouth.”

She said, “How do you know?  Did you  . . . eat some?

“Mom, when I was cutting up the pieces they broke apart so easily.  The meat looks so tender.  Are you enjoying your lunch?”

“Yes . . . pretty good.”

I showed the staff that mom ate almost all her food by herself.  I mentioned that the only thing I did was cut up mom’s meat and bread and helped her with her cranberry juice.

When mom was done eating, mom said, “How much longer . . . we . . .  do  . . . this?”

“Mom, ‘only God knows’.”

“Only . . . God.”

“Yes, mom, only God.”

When I left mom, we hugged, kissed, prayed, and blew kisses.  I was comforted by her smile as she said, “Bye, my dear daughter.”  She had never used those words with me before.  Mom was at peace today. I was thankful I was able to spend time with her.

Chronicling Our Journey

  

Last Sunday’s visit with mom was extra special.  Mom and I looked through a binder I had brought her filled with all the blogs I have written and posted.  Mom and I have discussed the blog many times throughout our journey although each and every time she refers to the blog as a book.  

In the past I have shown her the blog on my iPhone.   She loves the color of the website because shades of purple have always been her favorite colors.  She has approved every photo of herself during her journey.  Now what I presented her with is a book; she can relate to how much we have been through in the last nine months.

Mom enjoyed looking through the pages especially at the photographs.  The pictures of the hamburgers and us sitting at McDonald's seemed to make her smile the most.

 The blog started in April 2012 after mom had been admitted and diagnosed with dementia, COPD, and congestive heart failure.  Mom had already moved out of her supportive living facility and into the rehabilitation facility when I had the idea to turn my journal into a blog.  After posting each blog, I print and keep each one in a binder.  With over 120 posts, the book is over 400 pages. 

At the time I started, I had no idea if I would have enough to say to continue writing the blog, but somehow I never seem to be at a loss for words.  The time I spend with mom is a gift. I am happy to document and share our journey. Just yesterday I bought a bigger binder so I can continue to keep our journey together in one book since only God knows how long our journey will continue.

Wise Letter

 

Letter from a Mother to a Daughter*
 

“My dear girl, the day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through. If when we talk, I repeat the same thing a thousand times, don’t interrupt to say: “You said the same thing a minute ago.” Just listen, please. Try to remember the times when you were little and I would read the same story night after night until you would fall asleep. 

 

When I don’t want to take a bath, don’t be mad and don’t embarrass me. Remember when I had to run after you making excuses and trying to get you to take a shower when you were just a girl? 

When you see how ignorant I am when it comes to new technology, give me the time to learn and don’t look at me that way. Remember, honey, I patiently taught you how to do many things like eating appropriately, getting dressed, combing your hair, and dealing with life’s issues every day.

 The day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through. 

If I occasionally lose track of what we’re talking about, give me the time to remember, and if I can’t, don’t be nervous, impatient, or arrogant. Just know in your heart that the most important thing for me is to be with you.

 And when my old, tired legs don’t let me move as quickly as before, give me your hand the same way that I offered mine to you when you first walked. When those days come, don’t feel sad—just be with me, and understand me while I get to the end of my life with love. 

 I’ll cherish and thank you for the gift of time and joy we shared. With a big smile and the huge love I’ve always had for you, I just want to say, I love you, my darling daughter.”

*Essay courtesy Spring In The Air, a company known for growing/shipping the most amazing, longest lasting roses available in the US, and voted the highest rated roses by Amazon customers.
 

My personal note:   When I read this letter my eyes welled up with tears, most of us are going to grow old.  “Treat others as you would want to be treated.”  Never did an inspiration mean more to me.   Let us be kind and gentle with  our aging parents and relatives.   Hopefully we will all have someone who will help us and love us through those not so 'Golden Years'.  What I know is I will continue to take that walk with mom until her eyes close for the last time.
 

Don't Worry About Us Mom

When I saw mom today she was having a conversation with Dana*.  Instantly when mom noticed me, her face lighted up.  “You’re here.”

“Of course, mom, I wanted to spend time with you.”

Dana* said, “Your mom was just trying to tell me something about you and your brothers.”

“Worried  . . .  ‘bout everyone”

“Mom, who are you worried about?”

“You . . .  Jerome . . .  Jamie,”

“Why are you worried about us?”

“My kids  . . .  depressed with me.”

“I am not sure I understand mom.”

“I pick . . .  on all . . .  of you.”

“Mom, you do not pick on me.”

“Jerome . . .  Jamie”

“They are not upset with you either.  We all love you very much.”

“Tell them  . . .  no . . . more . . .  argue,” mom said anxiously.

“I’ll tell them, mom.   I never think that you are arguing with me. ”

“When . . . I can’t . . . talk.”

“I know you just get frustrated when you have a difficult time talking.  Anyone would be frustrated.”

 “They say  . . .  old age.”

“We are all getting older sometimes I cannot remember what I am trying to say.”

Mom lifted her hands up and dropped them on her lap saying, “Julienne, I’m useless.” Mom lowered her head as she tried to fidget with her hands to show me.

Tears rolled down my eyes and before mom looked up I wiped them away.  “I know you might feel that way, but you are not useless.”

 “Mom, try joining everyone in the activity room?”

“I can’t  . . .  do . . .  anything,” mom said sadly.

“Mom, just be with them.  Most of the people here cannot do much.  Some cannot do anything at all.  Just be with everyone.  Try watching TV.  You might enjoy your day more by being with everyone. ”

 “Oh, Julienne, Ohhhhhh,” mom reached over to hug me. 

“I would do anything I could to help you, mom. You have to try,  too.”

Mom looked down at her feet on the footrests of the wheelchair, “These  . . . depress me.”

“Mom, if you want I can take them off for you.  Your feet are not swollen anymore.”

Mom shook her head yes so I removed the footrests.  When I did mom’s feet just dangled. 

“Do you like this way better?”  Mom shook her head again yes. 

“I am happy I could make you a little more comfortable.”

As I hugged mom again she said, “Julienne  . . . glad you came.”

“Me, too, mom.”

 “Where you going?”

“After I leave here, I am getting my hair cut.”

“Don’t be late.”

 Mom pointed to the activity room, “I want to go over there.”

“Are you going to join everyone in the activity room?” I wondered if she was going to take my advice.

“Yes,” mom shook her head smiling.

“Thank you, mom, for joining the others.”

I unlocked mom’s wheelchair so I could wheel her there when Dana* walked up and said, “Gilda, are you going to join in activities?”

Mom smiled, “Yes, I’m  . . .  gonna . . .  try.”

Dana* said, “Julienne, I’ll wheel your mom in.”

Mom said, “Yes, my daughter’s getting her hair done.”

I looked at Dana*, “I have enough time, but Mom does not want me to be late.”

I bent down to hug mom again.  “Mom, I am proud of you.”

 Mom said, “I love you with my whole heart . . . Jamie . . .  Jerome . . . too . . . all the same.  Tell them.”

“I will tell them, mom.  We all love you, too. ” Mom and I blew each other kisses.

Mom looked the best she has in a couple weeks, and yesterday she seemed to be able to talk better than she has in a while maybe because she is off the Lasics and the Theraflu.  After one month The Community* is no longer under quarantine.  Although mom has been eating better lately because they are feeding her, I was told that mom has lost over 29 pounds since she was first admitted here.

We are just taking one day at a time.  God is in control.

An Unexpected Prayer

 

 

A few days ago I met with Dana* from Hospice. I asked her if she would set up a person from St. Thomas the Apostle to visit mom regularly to give her communion and pray with her.  Mom finds comfort when we pray together so I thought she might also find comfort from receiving communion.

With this special request, I asked her to also make sure that the person knew that mom will need water with the Holy Communion as her mouth is always dry.  I also mentioned to make sure that the person puts a straw in the cup and most importantly that the person holds the cup and straw while mom drinks because her hand and mouth both shake.  Dana* said she would make the right calls and get back to me.

Tonight on my way home my phone rang, Rosalee* from hospice called.  She told me that Dana* had told her of my request.  She had contacted St. Thomas the Apostle, but has not heard back from them yet.  Rosalee* wanted me to know that she had visited mom today. 

She asked mom, “Gilda, would you like to pray with me?”

“Yes,” mom answered.

 

“Gilda, what should we pray for?”  Rosalee* asked.  Before Rosalee* told me what mom said, I could only imagine that mom would have wished for God to come for her.  Yet mom’s answer was quite different.

Mom said, “My children . . . for God  . . . take . . . care.”

I was driving home when I received this special message from hospice.  My eyes filled with water.  Mom knows she will be leaving us and she is still worried about her children.

Rosalee* said, “Julienne, is there anything I or anyone at hospice can do for you or your family?”

“You just did.  Thank you.”