Back On First

On Wednesday, April 25^th, I woke up very excited that mom was going to be moved today.  She was not only getting a new roommate, but she is moving back to the first floor. Although the layouts of each floor are somewhat similar, mom’s comfort level is much higher on the first floor.    Mom feels the first floor is more like a home because she knows a lot of the residents on this floor.  The Community* has entertainment every week; their performance is held in the first floor dining area.  Also on Sunday morning Sam*, a good friend of mom’s, has mass in this space also.  He brings donuts and other bakery goods for the residents to enjoy.   In addition, the ice cream parlor and the outdoor garden are also on the first floor.

  

 The ice cream parlor is manned everyday by a volunteer, Henry*, from 1:30PM-2:30PM. Henry* is extremely friendly and is a good friend to staff and residents alike.  If we don’t find him talking and joking with someone in the ice cream parlor, he is there reading a good book.  He kindly tells us all about the books when we get there.  He likes to spend time at The Community*because his wife lives there.  She needs the extra attention the residents receive on the second floor. 

I arrived on time for mom and proceeded to go to her present room on the second floor neither mom nor her roommate were in their room.  As I approached the nurses’ station at the end of the hall, I glanced at the dining room where I saw mom who was waving me to come in.  There was no question that she was waiting for me. 

In talking with mom, she informed me that she was scared.  She said, “I am happy to be going to the first floor, but I am nervous thinking about my new roommate and my new room.”  I assured her that I would make her room look nice and that we would both go and meet her roommate together.  So we headed off to talk with her case worker down the hall, she escorted us to mom’s new room. 

Some of mom’s pictures were already hanging in her new room.  Dave*, who had worked on mom’s last room, took and hung her pictures exactly how we had them upstairs.  Mom’s beautiful pink, white, and mint green quilt was on her bed.  She told me to remove it because she wanted the same bedspread that her roommate had that The Community* provides to the residents who don’t bring in their own.  When I told her that she used to love that quilt, mom said, “Julienne, listen to me! I want the beds to look similar.”  Remembering what the therapist told me about how to handle mom’s dementia, I removed the quilt, folded it, and placed it on the top of mom’s closet, in case she changed her mind.  

Mom’s new roommate, Karen*, wheeled herself in the room.  Mom told me that she and Karen ate at the same table for lunch before when she was on this floor the last time.  Karen said, “Your mom is confused about her name.”  I did not initially understand what she meant.  But then I remembered that when my mom first came here five years ago with a broken hip, mom used to go by her nickname, Jill.  Now mom likes to be called by her given name which is Gilda.  Some of the staff that knew her before, still calls her Jill, but she doesn’t answer to it anymore.

Karen has lived here for several months; Karen used to live at The Community’s* Supportive Living before here, too.  We all talked for a little while. Karen told us that her last roommate lived in Chicago Heights most of her life also. Karen said her past roommate was in her 70’s and passed away.

Then mom suggested for me to take the covers off the bed so she could see each layer to make sure they had set up her bed correctly.  When I said that I am sure they had, mom said, “Julienne, why aren’t you listening to me.”  The bell rang in my head and the therapist words were once again loud and clear, “If you want to make your mom comfortable, do not argue or disagree with her. People with dementia only see things their way.  You must learn to put your feelings aside.”   

As I started to remove the sheets, mom’s alarm went off.  Mom has an alarm on her bed so that if she tries to get up the staff is alerted.  Some patients require this because they either need help walking or they get disoriented of their surroundings.  Both of these situations apply to mom right now.  Fortunately, her alarm going off has happened in her other rooms; I am fully able to turn it off.  I am usually the person who sets it off when I am present.  I forget about the alarm; I go to lean or sit on mom’s bed and the alarms sounds.  Mom is used to the alarm and knows I can turn it off.  However, it scared mom’s roommate who doesn’t have an alarm on her bed. She screamed, “Oh, my God.”  I reassured her that everything was OK.

I proceeded to take the sheets down so mom could inspect each layer.  Mom told me that her bed was missing a blue pad.  This pad is used to prevent getting the mattress wet in case there is any episode of bed wetting.   I went to talk to her aide, Diane*.  She told me that she would make sure mom’s bed would be right before she went to sleep tonight.  I explained how important it was for mom to feel comfortable with her new room right now.  She understood. 

When Diane* came in with mom’s pad, I helped her make the bed.  Mom knew Diane* from before and likes her very much.  Diane* mentioned that she was happy to make the bed by herself, but I knew mom wanted me to assist.  When mom’s bed was exactly the way she wanted, mom shook her head like she was finally satisfied.

My mom then wondered why her bed was so far away from the wall.  I explained that Dave* had gone to get the rest of her things and that she needed the extra room for her lift chair.  Just then he was back with the lift truck on his hand truck. He put the chair in the proper spot, but it appeared to have room in back of the chair.  Mom wanted the chair to be moved all the way back.  I told her that her oxygen and her floor lamp would go back there.  She said, “Where are they?”  Dave* and I smiled.  I mentioned that he was working as fast as he can.

I realized then that I should have waited to take mom to her room until everything was in place like the last time she moved.  All the movement going on in her room made her confused and frustrated.

When Dave* came back with the oxygen and the floor lamp, mom said, “Julienne, why did you bring my floor lamp here?”  (I guess she had already forgotten that I put it in her other room.)  I told her that we needed a place to hang her ‘Jesus’ sign that her girlfriend, Julie, had stitched for her before she passed.  

Mom’s room was perfect.  The aides were starting to take some of the residents into the dining room for lunch.   It was only 11:15AM, but mom wanted me to walk with her to the dining room.  She wanted to make sure she was situated before I left.  As we were walking, the attendant told mom that she would be sitting at the table she sat before.  Mom was glad to hear it; I think it gave her a little familiarity.   She knew the people already there.  

Before I left mom wanted two huge hugs, mom said, “Julienne, I wish you could just stay here all day with me for a week until I get comfortable.  I am worried.”  I told her, “Mom, you are doing great.  Take one day at a time.  You are in good hands.   I am going to be back on Friday to take you to get your hair done.”   We exchanged, “I love you with my whole heart and blew each other kisses.” 

I walked away knowing that I did everything I could for her.  I just hoped she would be happy.

Glad I Stopped By

When we moved mom last Saturday, I noticed mom did not have her own toothbrush so when I went to see mom yesterday I brought her a toothbrush, toothpaste, emery board, etc.  Thank goodness, I did.   When mom saw me, she lowered her head, put her hands over her entire face and shook her head.  I said, “Mom, what’s wrong?”  Mom said, “Julienne, you have to help me.  I can’t do this.  You must change my room.  I can’t live like this.”  What she told me made my blood boil. 

What I learned was that mom’s roommate pees all over her room.  She has the problem so many seniors face of incontinence, but she refuses to wear panties that are like an adult diaper.  When the aides tell her to wear panty diapers, she gets very angry because she doesn’t feel she needs them.   She often walks around with wet pants.  When she finally realizes that her pants are wet, she goes into their washroom and takes them off, hanging her dirty panties and pants on the railing that mom needs to hold on to.  You can imagine the smell alone is awful, but for mom to be subject to someone else’s excrements is cruel and disgusting.

Mom also shared that her roommate goes to the toilet by herself, however she sometimes misses the toilet and may pee or pooh on the seat and floor.  Of course, mom knows this because she doesn’t flush or clean up her mess.   What mom described would be a nightmare for anyone. 

She also always has a habit of closing the door to their room when she leaves.  This is a major problem because housekeeping will not go in the room if they see the door closed.    Housekeeping respects their privacy. They assume that the door is closed because someone is dressing or going to the washroom.   Their room could be passed up for cleaning. 

In addition to her roommate problem, Mom told me that the night nurse is not allowing mom to wear her own nightgown.  The night aide is making mom wear a hospital gown.  Mom said she was very cold because their hospital gown is short sleeve.  I spoke with her aide to see if my mom was wearing a hospital gown when she came to dress her this morning.  She said that mom was correct.    Now I was livid.  Why in the world would the night nurse not let my mom were her own nightgown. 

The aide was very sweet; she informed me that she would put a note on my mom’s closet to say that Gilda’s family wants her to wear her own nightgown to bed.  The aide also said that when she is working she will make sure to check their washroom. If her dirty panties and pants are hanging in the washroom, she would alert housekeeping.  She also said that she knows her roommate always closes the door to their room and will try to keep opening it and will remind her not to close it.  She said, however, she can only promise this while she is working. If I am not happy, I should definitely talk with the head of nursing.

Mom said, “Please, Julienne, go and talk to her. I have been telling everyone here my problems, but they say your family must speak up.” Mom said, “I lie in bed and pray:  God please help me.”   I promised I would go and talk while she was at lunch.  I assured her that I was unhappy with her situation and would do my best to make things right.  She told me again and again that she loved me.  She kept saying, “Help me, Julienne, help me.”

I walked to the head of nursing’s office, but the door was closed. So I went next door to the social services department to speak with her case worker.  She listened as I told her what I had uncovered.  I was told that the head of nursing was on jury duty so she went with me to talk with the assistant head of nursing. 

I explained that prior to my mom moving into her new room I had gone to check it out.  I noticed her roommate’s panties and pants hanging in the washroom.  I was told that her roommate would be instructed to remove her panties and pants from the washroom and not to hang them there anymore. They told me that housekeeping would clean the washroom and there would be no problem. After relaying the current situation; I told them both these issues are not acceptable.  They agreed. 

 The assistant head of nursing promised to take care of these problems and look into a room change.  I mentioned that I was told a few days ago that the only other rooms available were in 2 East. The residents in 2 East are extremely sick and some of the residents there are on hospice.   

The admissions person offered to show me the other rooms before making a decision. There were two other rooms:  one was a room with three beds where my mom would have had the middle bed; the other room was a room with 2 beds, but the room was at the end of a long corridor in 2 East.  In my mom’s present condition, she is way too coherent to be placed with these extremely sick people.  In fact, while she was giving me the tour of 2 East tears were rolling down my cheeks.  I could not imagine my mother being there in her present state. 

The assistant head of nursing told me that she would call me before the end of her work day to let me know how they were going to handle this.  I thanked her and left.

While I walked to the car, I wondered if anything would change.  Had I done the right thing?  Would they help mom?  I had no reason to believe that they wouldn’t because they have always been fair.

 Anyone would notice from the first moment they walk into The Community* that it is a first class healthcare facility.  Our family has had the pleasure of having mom make their supportive community and this healthcare facility her home for the past five years.  They have always been there for us.  We have always been happy with their staff and their cleanliness.

All I knew is that I was glad I stopped there today.

Later that day:  The assistant head of nursing did call me to tell me she did not have an answer yet.  The staff was looking at making some room changes and would discuss them in their meeting on Tuesday morning.  I reminded her that I do not want mom in a 3 bedroom or in 2 East because I would consider that punishing mom for bringing her problems forefront.  The assistant head of nursing stated they would never want any resident or family member to feel that they were being punished.  She assured me that she would call me after the meeting tomorrow.

My frustration level was at an all time high. My anxiety permeated throughout my body.  I thought I could have a nervous breakdown.  What happens to people when they don’t have an advocate to speak for them? 

Last night, I went to bed praying that the healthcare facility would do the right thing for mom.  When I woke this morning, I realized that today is my dad’s birthday.  Guido would be 101 if he were alive.  I prayed to him to help me help mom. 

At 11:38am today, I received a call from the social worker.  She informed me that they will be moving mom to room 113 tomorrow morning.  I thanked her and told her I would be there for her move.

A thank you goes out to The Community*, to my dad, and Our Heavenly Father.

Moving Day

Yesterday was moving day for my mom.  She went to her new Room 222(for all of you that can remember there was a TV show with this name which ran from 1969 to 1974 staring Karen Valentine).  The whole day went better than I had expected.

I’ll first tell you about the day before, Friday,  I took mom to get her hair done at supportive living.  The great news is that  mom walked with her walker.  She still is on oxygen, but she is now able to walk with supervision.  She no longer uses a wheelchair at all.  Mom was very anxious; she was very worried about her move that was happening on Saturday.  She said, "I can’t believe this is happening to me?  Will I be able to accept it?"  I told her I would be with her every step of the way and that I would try to make everything as good as it can be.  She said, “I know you will, Julienne.  I see all that you are doing.” 

I just reassured that this is God’s will; we both have to deal with it the best we could.  I explained that we all  have several stages in our lives.  We may not always be happy with our next stage, but God wants us to make the most of each one. 

Mom loves getting her hair done by  Joannie*, her hair stylist.  Joannie* always goes out of her way for mom.   They both make each other laugh.

After her haircut, as we were leaving the supportive living facility mom saw several people  who worked there; they were so excited to see her.  They told her how much they missed her.  She cried; they cried; I cried.  If only tears could make everything alright.  I took pictures of  mom with them.  It seemed to make everyone a little happier. The three women told mom that they would go and visit her after their shift on Sunday.  Mom cried more.  It was a good feeling for me to know that the staff cares deeply about  mom.  As we know, mom has become distant from people whom she used to care deeply for due to her early stages of dementia for the past few years.  Her paranoia has made many circumstances difficult to accept for our family.  We’ve dealt with it the best we can and we thank everyone for trying to understand even when we couldn’t.

When we got back to the healthcare facility,  I checked her back in with her nurse, Darla*.  She is one of mom’s favorite nurses.  Darla* has been a godsend to our family.  She has the patience of Job.  When Sandy arrived,  I was taking a picture of mom and Darla*;  I decided to take pictures of mom and Sandy, too. Sandy, my sister from a different mother and father, was there to help me decorate mom’s new  room upstairs.  Mom was happy to see Sandy as she knows Sandy cares and is always there for her.  I told mom that  Ron and I would see her tomorrow at 9:30AM to help with her move.  She knew Sandy and I were going to decorate her room.  I told her we would try and hang her favorite pictures.  She said, “I don’t know what to expect.   Would you like me to see my new room now?”  I told her to wait till tomorrow till we have a chance to make it feel like her home.  Mom thanked Sandy and told her that she loved her.  I hugged and kissed mom.   We  blew each other kisses like we normally do when I leave.  She smiled faintly; I could tell she was anxious.  She knew Sandy and I would do everything we can to make it comfortable for her.

The Community* has been great to us and I can’t say enough about their entire staff.  When Sandy and I arrived at mom’s room, Rauol, one of the maintenance men, met us to help us hang mom’s pictures.  Thank God for Sandy as I am a Gemini; I would probably still be there trying to decide where each picture should go.  We were both amazed that we were able to hang all of my mom’s favorite oil paintings and pictures throughout her half of the room and her bathroom.  To make Mom’s room feel more like her home we also had mom's lift chair, her standing lamp, small TV and remote, and her own pillows.  When we finished, we thought the room looked very nice.

On Saturday, Ron and I got there at 9AM, Ron sat with mom while I went upstairs to her new room and organized her clothes in her closet and things in her drawers that the maintenance department had brought up there.  Ron helped mom practice getting up and down with her walker as she has a tendency to stand without putting on her brakes; she keeps getting confused. 

When mom came up there with Ron and Darla*, she looked around the room and said, “This is so much better than I thought.  You and Sandy did a great job!”  She immediately went to sit in her lift chair. 

Her roommate was there.  Mom remembered her from the supportive living facility.  Mom started talking to her, but she couldn’t hear mom at first so her roommate got up and walked over to mom.  She is 100 and  hard of hearing. They did end up talking and mom said to her, “ Aren't you the lady that dances and snaps her fingers?”  She smiled and shook her head yes.  Mom asked if she was happy there.  She answered, “Yes, they are nice here.”

Ron and I asked mom is she would like to go out for lunch to celebrate her moving to a new room.  She wanted to go to McDonald’s.  Mom enjoyed her double cheeseburger, Carmel frappe, and a few fries, but she couldn’t finish her meal or even half of her drink. 

When mom was getting out of our car to go back into the healthcare facility she said, “It will be a long time before I want to do this again.  I enjoyed it, but  it is a lot for me.  I am exhausted.”  Ron and I brought mom back in and checked her in with her nurse, Sally*.  Mom likes Sally*, too;  she had been her nurse a few weeks ago when she was on this floor before.  Mom asked Sally* if there were any activities that she could join in.  Sally* showed mom the activity board.   The next activity, an exercise class, was at 3PM.  The present time was only 12:45PM.  Mom had time to relax and watch TV beforehand.  Ron and I kissed mom and said we were ready for a nap, too. 

Mom thanked us for everything.  She said, “Pray for me that I accept this.”  We said, “You will mom, you are doing great.”

As Ron and I were leaving, Ron said he was mentally and physically exhausted.  We both agreed; the day went the best we could have expected.  :)

A Child's Wish

Every child especially a daugher is always searching for their mom's approval.  I have found it in my mom's last few chapters of her life.