2019)

Following mom on her ‘wandering’ journey

Wandering in Alzheimer’s patients is caused by disorientation. Sometimes wandering occurs because the person is in search of something. Other times, the person believes they need to escape a situation. Mom has experienced all three of these reasons. She has become confused and kept returning to places familiar to her from the past. Many times she has tried to escape the house due to fear of someone killing her (hallucinations are common in Parkinson’s/Alzheimer’s patients). The journal today is going to focus on her wandering to satisfy her need to find something like a bed!

The last few times I have visited mom, she was nowhere to be found. The staff laughed and said that she enjoys hiding from me! Reality is, she ‘wanders’ into other rooms. Sometimes she is there to organize closets. Other times she crawls into a bed and falls asleep. I think she is looking for friends and then she becomes distracted by closets and beds! Mom has always loved being around people. She likes being a friend to others. Her love is sincere though her actions are not always appreciated. (Examples are when she tries to help a person using a walker by guiding the walker. She will take peoples’ trash, even if it isn’t trash! Mom likes holding hands without understanding that not all people enjoys the affection. Sometimes she wants to push wheelchairs that she is too weak to push!)

Mom’s wandering has caused a disturbance amongst the staff. The first two times she disappeared, it took around 10 minutes to find her. Each time she was in a different room. The last time mom disappeared, it took closer to 20 minutes to locate her. The staff ended up conducting a sweep of the facility. Staff members took one side of each hallway and entered all rooms. After a thorough search proved mom was not there, a pillow was put outside the door. Of course mom was not found until the very last room was searched. I was impressed with the efficiency and calmness of everyone involved. When found, she was not happy about being awakened. When she was brought to me, she was grumpy and kept walking to get away from me! Eventually she calmed down and was happy hanging out with her daughter.

The pillows outside each door indicates the room had been searched.

On the other side of the man sitting, was the room mom was found sleeping!

Mom was not happy with the nurse or me for waking her up!

Once mom was awake, she was her sweet self!
PS The bandage on my nose was from a biopsy. It ended up being basal cell which means a Mohs surgery.

Mom, Lets Exercise (7/11/19) Alzheimer’s

I got to mom shortly after breakfast. After fixing her hair, we strolled through the hallways. This sign was posted in one of the activity rooms. ‘Perfect’, I thought. Exercise from a chair!

Mom and I walked in and mom chose a seat. I pulled a chair up next to her. She was happy. While waiting for the class to begin, mom told me that her words were coming back. She was right. This morning she had been relatively coherent. It made me happy seeing her happiness.

Mom did well raising her legs simultaneously. She struggled alternating her arms. I had to place one arm on her knee while raising the other arm. Eventually she understood and could do it. After 15 minutes, I noticed that mom was beginning to ‘zone’ out and loose her enthusiasm. I asked her if she wanted to Face Time Ali. That perked her up. We walked outside and sat. I FT her husband. It took her about 2 minutes to understand that she was seeing him on the phone, but when she realized who she was talking to, her face lit up! She told him that she loved him!

When the conversation ended, I took her back inside. It was time to play Bingo. She loves this game. She was given her card and began reading it. She was very proud of herself! (I am trying to figure out how to upload videos to WP via You Tube so I can share with you.) To say I was proud of her was an understatement!

Mom was giving her chips to mark her card. Before she even touched them, she told the lady sitting with us that she could take her favorite colors. (The lady was not interested. She was ‘lost’ in the oldies music playing on the speakers.) Mom’s compassion towards her friends was evident! It is hard for me to witness when the friends don’t respond to her kindness! I understand that this disease does not always allow positive responses. I have witnessed mom and her negative responses towards kind gestures. Understanding that this is normal behavior, does not eradicate the hurt. We want kindness to be reciprocated by kindness.

When The Shoes Don’t Fit (July 6,2019)

Mom has been ‘shopping’. These are not her shoes!

Mom wanted to walk so Grant helped her stand up. As we started walking down the hall I became alarmed! Her gait was strange. She had to hold on to Grant and Lisa for support! I had her sit down so I could find a nurse. As I was explaining to her that she needed to sit because I was worried about the way she was walking, I noticed that one of the shoes had a lift! No wonder mom couldn’t walk. I told her we were taking those shoes off and walking back to her room. Instantly her gait returned to normal. Unfortunately her OCD kicked in. She did not want to walk on the carpet because her feet kept getting sandy! (OCD with Alzheimer’s can test the strongest of patience…)The three minute walk turned into a 7 minute walk, but it was a success. We made it to her room! Her face lit up like a little kid when Grant gave her a little bag of orange slices and chocolate covered almonds. (Those are happy childhood memories for me. When I was a little girl, shopping days would include going to Sears downtown. Walking through the front door, the first thing we saw was the candy counter. Mom would always get orange slices for her, chocolate covered raisins for me and Michelle and if I were really good, when we left, I was allowed a few pieces of candy corn!😋)

It is hard to walk in shoes that do not fit and have a lift!

Riding in the car to visit mom, I had some apprehension. The ‘naughty’ reports (she had struggled the last few days, but the staff reassured me her behavior was normal and to be expected) made me nervous. As the children (today I had Grant, Lisa and Lucy) and I entered thru the front door, mom was the first person we saw. My heart sank. She looked awful (tired and unfocused). I asked the nurse how she had been. He told me she had a really good day! “Yay” I silently whispered. I knelt down in front of her and said, “Hi mom!” She refused to acknowledge me. She was fiddling with buttons on her blouse (I thought I had removed all of her clothes with buttons. I guess I missed this one). After I helped her with the buttons, she focused on my voice. It wasn’t my face that caught her attention, but Grant’s. She was so happy to see him! As Grant hugged her, I looked down and realized she had someone else’s shoes on her feet! It looked like she had been shopping! (Shopping is the term used when Alzheimer’s patients wander into other patient’s rooms and takes stuff they like.) The children and I giggled. I made a mental note to return them to the front desk.

Mom’s happiness causes her to jump up and start hugging

Back in the room, mom finally had her feet clean and shoes on. We walked outside. She loved sitting and eating her candy. Suddenly, she was overtaken by emotion. She jumped up hugging each one of us. The simplicity of her love brought tears to my eyes!

After eating candy and hugging everyone, we went back inside. We helped mom complete a puzzle. She also had a good FT call with Ali and told him she loved him. It was a great visit!

Reality July 3, 2019 (Alzheimer)

**A day of fighting with the nurses about wearing clothes in the hallways left mom exhausted!**

The last two days when I have gone to visit mom, a staff member reports about the anger mom is beginning to exhibit. Instead of playing the role of a mom getting a bad report on a child, I am the daughter receiving this news on my mom! I was mortified! Mom had began attacking staff by scratching, pushing and cussing (yep, mom’s vocabulary may struggle unless she is mad. At that point her vocabulary makes us all blush)! My eyes welled up as Mrs. H explained that mom’s behavior is expected. She is showing her fear and frustrations the only way she knows how. Mom’s move to America, being placed in a facility and telling her husband good-bye (he flew back home for work but will continue to fly back here to see mom) has been traumatic! She is suffering from her own version of PTSD. (I understand this type of PTSD and negative behavior as a teacher. My school children lived in poverty and experienced hunger and violence. Their aggression was directed at me because they knew I would continue loving and protecting them. The children were not mad at me, they were frustrated and scared!) The insight of the staff in understanding mom has given me peace!

After waking mom up, I told her she needed to get dressed so Richard and Hampton could visit her. (The nurse had warned me I should enter the room without the guys in case she was naked again, I am glad I heeded her advise!) I pulled out some PJs so we would not have an argument over clothes. She can still button, but it is a very slow process!

***The smallest acts of kindness can be felt by all***

When I stepped out in the hall to tell the guys it was safe to enter mom’s room, this is what I witnessed! Richard was helping one of my favorite ladies zip her jacket. Alzheimer’s robs people of so much, but they still deserve and want kindness and love! Richard shares both of these attributes freely! (Colossians3:12)

I am thankful to finally see mom smile! She was happy to see Richard and Hampton. She wanted us to take her on a walk. I could tell mom was beginning to think clearly because she would not walk in her pjs. She had to have clothes on! (Thank goodness she wanted them on instead of off!) Back into her room we went. After 20 minutes of debating and picking every single piece of lent off from her pants, she was dressed and ready to walk except her shoes were not on! This is another struggle and OCD issue. She can’t stand to have anything on the bottom of her feet! Watching her brush imaginary debris from her feet, putting her shoes on only to take them off again is a test in patience! (Ephesians4:12)

While walking, a nurse asked if we could try to get her to eat her dinner. Mom was too grumpy to eat earlier. Keeping weight on her is important. We took her into a little room and encouraged her to eat. Luckily she did not need much of that. She was starving! As she completed her meal, Ms. M brought her a coffee (brown, mom’s favorite) and a cup of ButterFingers (Ali left her favorite candy and the nurses make sure she gets some everyday). It made for a happy ending and a peaceful good-bye.

Dining with mom

My writing is never meant to insult or hurt anyone with Alzheimer’s. I am showing unedited honesty mixed with love. There will be many tears, frustration and even anger. Don’t worry, there is going to be a lot of laughter also. If you can’t find humor, you will only live with pain! I want everyone following us to walk away with a merry heart amidst the sorrow. (Proverbs 17:22) I will share it all from my eyes and the eyes of family and friends.

Yesterday (7/2/19) I got to join mom and her friends for dinner. Mom may struggle with language and memory, but her creative gene still rules! Mom had been given mandarin oranges for dessert (She is down to 115 lbs. and is sitting in the dining room where nurses closely monitor the amount of food she is eating. We do not want her loosing any more weight!). She decided orange juice would be better. She was not waiting for anyone to bring her some. Instead she mixed the oranges with her left over water and happily ‘drank’ every bite even after complaining that the oranges were ‘gross’!

Our dinner companions were fun in their own right! The lady to my right felt that shoes were not important! I tend to agree! 🙂 PS: The picture looks awful. Except for the toenail, her feet were fine. She was using her toes to scratch her bottom foot!

After eating, mom enjoys walking. I took her outside for some fresh air. We sat down so I could show her pictures that her friends from all over the world have been sending (Thank you Patricia and Donna). Mom’s frustration in recognizing the ladies, but not being able to say their names became apparent. I turned the pictures off and took a selfie! Mom was much happier because she recognized herself and kept saying, ‘That is me!”

***Frustration in recognizing friends*** but not knowing their names!

***Happiness is recognizing herself in a photo!***

The White Moth

It was early morning. We were gathered around the ICU bed of a man I knew. He was a husband, dad and friend! The group consisted of 4 children (teenagers-adults), his mom, step-father, mother in law, wife (who is my best friend) and me. The nurses had exited after removing all life support. The room seemed to shrink as breaths were held, prayers whispered and tears flowed all while listening to the Holter Monitor beep.

The rhythmic beeps were trancelike. My thoughts were jumbled. The sound meant life, yet we all knew there was no longer a quality life. Dale’s organs had shut down. The bleeding on the brain had destroyed all functions. The fluids in his abdomen were full of toxins which caused his belly to swell to three times its size. The build-up of pressure was too much, causing the toxic fluid to burst out of his abdomen cavity into the rest of his body! These were the facts. Yet the beats of Dale’s heart were the sound of Hope. I know there is a God who can perform miracles humans cannot comprehend (Mathew 19:26) I believed this even as the beats slowed! I watched the monitor. The contrast between spikes and dips were no longer! The flat line sounded the alarm which was quickly unplugged! The silence became a deafening roar inside of me as I struggled with emotions I did not understand while holding the hand of my friend, while her other hand was firmly wrapped in in her husband’s hand as his heart beat one last time!

God’s love is profound! He proved this, by choosing not to wake Dale up in the hospital. Instead, He allowed Dale to wake up in His loving arms forever removed from illness, pain and hurt! Was God being selfish taking Dale for Himself, when Dale’s family is left in pain, grief and finishing life without a husband and dad? No! Faith gives me peace knowing that God’s course is better, even when hurt, anger and grief blind us to His loving plan (Ecclesiastes 3:1,11). I cannot tell you the plan, but I do know that this family has come together as a unit. The children, along with Michele, have shown strength that a few days ago, they never knew existed! God’s light has shone brightly through a community that came together embracing Michele in an outpouring of love and support! This love does not immediately eradicate the late night anger, fear and tears that are needed to begin the healing process, but it will act as a layer of protection hopefully taking away a little of the sting called grief!

Allowing your heart to see instead of your eyes will show you His love even in the darkest moments. That is what happened to Michele. After Dale had passed, while we were still standing in the room talking, crying and laughing over precious memories, Michele randomly asked where the white moth went? What a weird question I silently thought, or was it? As Michele talked about watching Dale during his transition from human life, a tiny white moth appeared. She kept trying to brush it away from her husband’s face but the moth lingered. I became intrigued since no one else witnessed a moth or any other critter in ICU. Later that night, when I was finally able to crawl into my bed, I googled the spirituality/symbolism of a white moth. There were thousands of entries on this subject (Who would have ever thought?) Some were dark while others were positive!) I only focused on the very first sentence I read. My tears flowed as I whispered my thanks for His gift to my beautiful friend. That first sentence stated that purity is seen in the color white, while a pure and cleansed soul is represented in a white moth! Michele physically saw God’s love with her eyes, because she looked with her heart! (Ephesians1:18)!

The Journey Begins

Welcome to my journal blog. As you read my entries, you will enter into the days I share with my husband, children, parents (understanding and living with my mom’s diagnosis of Alzheimer’s) dogs, family, friends and work. Through my writings you will experience my good, bad, challenging, exciting, frustrating, joyous, sad and angry. No matter the adjective used, when seen with your heart, there is always His love to experience. Find a comfy chair or location and join me on my journey called life!

The real voyage of discovery consists not in seeking new landscapes but in having new eyes. – Marcel Proust