What is Love? Mom and Dementia 9/16/2019

Patience when the patient can’t do!

Dementia is a disease that you read about. You may have first hand knowledge of the disease as you listen to a friend vent about the situation. But until you live the disease day and night with a loved one, it is hard to fully comprehend the impact of this disease on the caregiver!

My ability to visit mom every day has become challenging because of work and my children’s sport’s practices/games. So far, I have been fortunate to visit her at least 3-4 times a week. The visits are progressively becoming more difficult. Mom continues too regress in language and expressing herself. She is living more in her ‘dementia’ world and struggles to enter our world. She recognizes me, but does not really know me. It rips at my soul on days. It is hard to explain my gamete of feelings. Part of it is shock that my once strong and graceful mom is a hunched over shell of the woman she once was. Her long and beautiful legs that once carried her confidently through her many transcontinental adventures are now forcing her to walk in a shuffled, hunched-over gait! Despite the change, there are glimpses of the mom I remember, especially when she smiles. Other times I stare at her while she sleeps. The peace that sleep brings, relaxes mom’s face allowing me to view my beautiful mom.

Mom is constantly hunched over.
Grandchildren and unconditional love!
Mom’s support!
Lean on me!
I won’t let go!

Physically and mentally, mom is different from the person I knew as my mom. It scares me seeing the destruction of this disease. Every time I forget something, my paranoia is real!’ Am I doomed for the same ending to my life as my mom? I don’t want that! I want to live to a ripe old age, healthy and mentally competent. I desire to acquire wisdom that my children, grandchildren and great grandchildren will benefit from. I want to maintain my dignity which includes dressing fashionably, making my children proud and my grandchildren bragging how stylish I am! At the end of my long full life, I want to happily say my prayers, go to bed, fall asleep and wake up in heaven! This would be the perfect final chapter to my life’s story! Unfortunately, I can’t write the final chapter, Only God can! He is the author to the Bible and every single detail in my life. There, He tells me not to worry (Philippians 4:6), to keep my trust in Him (Proverbs3:5) and no matter how scared I become, I cannot let go of my Faith (Deuteronomy 31:6). So how do I answer the question in my title, ‘What is love’? Easily, Love is God! God has orchestrated mom’s life and my journey for a reason that only He currently comprehends. I can’t allow my healthy life to be robbed of horrible worries. My weapon is love. I will show Love to mom until her last breath. My children will watch me give love. In return, I pray they will learn not to be afraid of dementia. This disease is real…so is life!

This is love!

Three Weeks in August Mom and the Dementia!

I love when she she chooses to smile!

I am thankful I can start this journal with a posted picture of mom smiling. The last three weeks have been hard. Mom’s stubbornness has broken me not once, but twice resulting in me handing mom over to the nurses as I my tears flowed. The first time, I barely escaped to my car before the UGLY cry started! This was not caused by anything abnormal in a dementia person, it was more of the reality combined with my exhaustion (I have returned back to work which has limited the amount of time I have to spend with mom each day.) Mom had regressed as far as talking and toileting. Two weeks ago, she began wearing diapers 24/7 due to her wetting herself many times throughout the day and then becoming extremely ornery when help was offered…..

August 15, I found mom wandering the halls. She was not agitated yet, I could see that her ‘Dementia Mind’ was definitely making the decisions for mom. As you watch the video, you will hear her heavy breathing. She is in NO pain. This is more of an anxiety type breathing. She is on a low dose of anxiety medication which has greatly altered this. I believe she was exhibiting some frustration due to the fact that her morning ‘shopping spree’ had left her with shoes that did not fit properly! Also, notice the lumps in her pants as she sits down. That is caused by having a second pair of pants on that she cannot straighten, along with two pairs of folded underwear she has shoved down her pants. Despite her discomfort, I was thankful that she looked up and smiled at me before I turned the camera off! I left shortly after. I was never able to help mom with her pants and extra underwear because she refused to sit long enough for help. I left her wandering…

Sedated!

The next 3 days, I went without seeing mom. (We were out of town moving our daughter back to college.). When I walked into the front office, the nurse called me aside. She wanted to let me know that mom had a rough morning. She had become aggressive with the nurse (scratching and trying to bite) and kept setting the alarms off as she tried to escape. Usually the staff is so good at helping calm a patient or redirecting them. Nothing settled her down. She was given a light sedative. I sat with her for a few minutes. It was soothing to hear her peaceful breathing and seeing her relaxed face. It comforted me in the same way that watching my sleeping children after they had a rough day. A sleeping person is able to let go of their anguish and experience a few minutes of solitude. In mom’s case, it was a few hours. She woke up pleasant and hungry. Both good things!

Mom has always enjoyed getting her hair done!
Water went down her back.

Mom has always loved getting her hair done. Today she was excited to visit Mrs. Wanda and get her hair styled. I have tried to have light bangs cut into her hair due to the fact that she insists on parting her hair down the middle causing her hair to fall in her face! Mom will wear hair clips when she isn’t playing with them or putting them in other people’s hair! Unfortunately, this hair session was a flop! Water trickled down her back, wetting her shirt during the hair wash. She could not articulate what was wrong, but became very agitated. She kept asking for a little towel. When she was given one, she would bunch it up and place it on her lap under the cap. After five minutes of trimming, she got out of the chair and said she was leaving. There was no talking her into returning..It was when her cape was removed that we saw how wet her back was. I felt awful. She was letting us know something was wrong and I did not understand! We will try again for styled hair.

Intensely studying the menu.

Showing up at AG and finding mom in a good mood set the tone for a fun outing. Mom was hungry and a restaurant sounded fun. It was a great decision! The waitress was kind and understanding. Her patience allowed mom ample time to ‘read’ the menu. (Mom loves to read. She is like a preschooler discovering the magic of sounds and letters creating words. Mom can read words and simple sentences. Her comprehension is questionable.) After reading the front menu, mom chose a salad, (with help from me). She was confused on salad dressings so I asked the waitress to bring two different kinds for her to try. Blue cheese remains her first choice. Mom tends to use her knife more like a fork. She cuts her bites meticulously, then uses her fork to push the food onto the knife. Her balance is good. She drops little. It is not worth the hassle of switching the eating utensils. It aggravates and confuses her. The red onions were a happy trigger for her. Every mouthful was followed with her proclaiming,”This is so good!” As mom’s hunger was satisfied, her restlessness became apparent. It was time to leave! The waitress quickly checked us out so we could head back to AG, mom’s security and comfort place. Upon arrival, she hugged me and Kincade and even told us she loved us. With that, she turned and independently walked through the security door happily ambling off.

Lack of Focus

Mom was not able to focus much on me or her granddaughter. When she does not look directly at me, I know that the day will be more challenging.

I’m sharing this video so you can understand what mom looks like when she can’t make eye contact. This is usually the time she wanders the most. She remained seated long enough for us to pull out the goodies in the bag. She did not understand what the nesting dolls were (though I have some beautiful ones from Russia mom picked up for me years ago when she traveled there). She barely touched the magnifying glass (she has reader glasses though they are seldom worn), because she had spotted the chocolate almonds! Candy always makes mom happy! Mom showed how smart she was by counting! Reaching #38 was an accomplishment! Notice how mom would respond with her voice, but her eyes would never focus on us? Is her dementia getting worse or is this an off day? I will let you know after visiting her this afternoon. ❤️🙏

Mom counting her almonds!

Hold on to Faith and Hope, there is a boulder in your path!

IMG_7355

Life is a journey that begins as a single moment! Every second of the day is a moment and those moments become scary when in the shape of a boulder (anything difficult that takes you out of your comfort zone)!  Are you going to keep your Faith and Hope alive by holding on, or will you take the easy way out and let go? Holding on will be challenging as you endure pain, fright and exhaustion! The alternative is to let go and crash which will hurt, make you fatigued, angry and weak! I have done both! Sometimes the lesson came after impact.  Other times, the lesson and my life’s strength came from holding on and inching forward.  Both are necessary parts of our journey needed to help us grow and gain wisdom. (Ecclesiastes 7:14)!

What does better mean? That depends on you! What are your aspirations? How do you percieve yourself?  Are you looking at your outward appearance and the way people see you, or are you looking at your inward self that is always visible to God and viewed by others through actions and heart? (1 Samuel 16:7) (Proverbs 16:2)

Crashing causes mourning, whether it is physical pain or grief caused by loss or the realization of our own sins.  Mathew 5:4 reassures as we will be comforted (Blessed are those who mourn for they will be comforted.)

Holding on to Faith and Hope keep us moving forward, even when it seems impossible.  This  builds our strength and endurance.  Faith is trusting God enough that you are willing to do the impossible (holding on) because you know nothing is impossible with God! (Luke1:37) Hope squashes despair no matter the circumstance and allowing a grip to be maintained knowing that God will renew your strength (Isaiah40:31).  These tools are essential for every moment throughout our journey.

Allowing our hearts to see God in our circumstances, even when nothing else is visible but a huge boulder, will keep us moving forward.  His love is immense meaning He can and will overcome anything we face in life if we allow Him! We have to have Faith and Hope, but these are nothing without Love! (1 Corinthians 13:13)

Table Top Activity with mom (7/20/19) Dementia

Folding. Mom tends to do a lot of this now. Usually she collects individual squares of toilet paper or Kleenex. She then folds, creases, folds and creases until she can’t fold anymore. These pieces of paper treasures are hidden in shoes, pockets, under her pillow or placed in drawers. I’m not sure what the reasoning is behind the folding. I do know the repetitiveness tends to soothe her.

Folding

If you listen closely, Mom is breathing heavy. It seems to be an anxiety reflex. After mom began folding, she tuned me and Lisa out. As she concentrated on the wash cloths the heavy breathing subsided. Besides folding, this activity encouraged sorting. It is a great activity for people struggling with dementia. (It also covers a multitude of fine motor and academic skills for teachers/parents of young children.) 😄

Mom folded everything in the basket. The timing was perfect because she was getting antsy. Luckily a friend came over and lead mom away. It was an easy departure for me and Lisa (my son’s girlfriend shares the same name as I).😁

Mom’s hands
Mom walking off with her friend.

These are the moments that we need to hold on to. The lady (purple pants) walking with mom is one of her table mates. Jane can carry on nice conversations and in the next sentence make you blush as she spews crazy cuss words. The first time I sat at the dinner table with them, I called her Jan instead of Jane! Have mercy, my first thought was that I needed to take cover! The nurses kindly calmed her down, I told her how pretty her name, ‘Jane’ was and she became my new best friend! No matter the anger that may surface, there is an even stronger force of love coming out. It may look different, but it is real! Look with your heart! It is everywhere, even when hiding behind dementia! (1 Corinthians 13:4-8)

Picture Journal (7/17/19) Grandchildren Visit Mom Dementia

Hanging all clothes on a metal hanger

Walking in to mom’s room, she was busy! She had gotten several of her roommate’s clothes, along with mom’s. Her focus was to put all of them in the middle of a metal hanger! With some coaxing and a lot of patience, mom hung one shirt of the hanger. The other clothes were returned to her roommate’s closet and mom’s clothes were placed back in her drawers.

I love her smile

Happily mom was happy with the clothes being put away. She was excited to go play with Hampton, his friend Tullulah and Kincade!

therapy
Fun and funny! My boys struggle with coloring! LOL 🙂

Today mom wanted to color! Perfect activity for all!

Compassion has no boundaries! 1 Peter3:8

While coloring, this sweet lady saw mom. She shuffled up to us and began mumbling. Mom immediately jumped up to hug her while saying, “It is ok. I will take care of you. You need to sit down.” The lady would not sit and mom would not let go. I was afraid they were going to topple over so I grabbed a nurse. She pried them apart and got the friend to follow her out of the room. The children and I cleaned up our coloring. It was time for us to go, so we took mom up front where her friends were getting ready for dinner. she hugged us all good-bye. Our exit was easy!

Picture Journal (7/14/19) Mom and her ‘son’. Dementia

Mom loving the doll baby. She claimed it was her son.
These dolls are so realistic!

Mom was happy! She was carrying around one of the dolls at AG. I loved listening to her talk about her beautiful son (she only has two daughters). She talked about how perfect he is. She was lucid and I cherished the conversation and witnessing her tenderness with the baby. A funny side note which proved that there was still some ability to think was rationally was when she told me the baby was dead. There was not sadness, only practicality as she showed me why. She lifted the baby up and down to show me that his extremities were limp! This was a matter of fact statement. Her conclusion was it was time to go feed him because he was hungry. At this point a nurse gently took the doll because mom was beginning to struggle walking while holding him She was fine. It was time to move onto something new.

Mom looks good!

After relinquishing the baby, mom and I were able to sit and talk. She reminisced about the past. It was extremely distorted, yet it was a conversation. She was at peace!

July 17

Parkinson’s/Dementia/ Alzheimer’s 7/21/19

Proud grandma holding her 9th grandchild 2007

I have had many people ask me how we know what mom’s actual diagnosis is Alzheimer’s (which is a disease) or Dementia (a symptom of a disease). Her actual diagnosis is Parkinson’s with Dementia. The dementia stems from Parkinson’s. The Parkinson’s Foundation states, “Most people with Parkinson’s develop dementia as a progression of their PD, rather than having both PD and Alzheimer’s.” There are differences and similarities between Dementia and Alzheimer’s. For mom, the neurologist explained that the treatment is the same. She has medication to help her Parkinson’s (Namenda), anxiety/depression (Lexapro), blood pressure (Lopressor) and behavior (Seroquel). She has not had an MRI. The doctors feel there is no need. Physical/cognitive tests along with blood work have them confident that mom’s treatment would not change, even with Alzheimer’s. Her main treatment is for the Parkinson’s. The other drugs are used to lessen the symptoms for dementia. My understanding is that the same treatment would be used for similar behaviors displayed with Alzheimer’s patients. Mom had exhibited signs of PD for several years. Her symptoms were becoming noticeable while visiting me and my sister in the states. When asked about them, mom always had a reasonable excuse. She would then fly back to Kuwait where Michelle and I were unable to monitor her. Due to large time lapses of being together, her decline was more apparent to us than those seeing her daily. Some of the Parkinson’s symptoms were the slight trembling (rolling her rt. hand-to hide this, mom started wearing clothes with pockets that she could hide her hand), commenting that she could not smell foods while cooking dinner, a tendency to occasionally drag her foot causing her to stumble-she blamed her eyesight. (We took her to the ophthalmologist, her vision was good for her age!) She began saying bizarre things along with opinionated things that were mean and made no sense. She would forget simple things. Her handwriting became smaller and shaky. I would no longer allow her to drive the children. I then would not let her drive anywhere because she would have trouble concentrating on the roads, traffic lights and forget where she was going. These signs of Parkinson’s/Dementia came on slowly. I do not know if mom had a medical diagnosis at this stage. If she did, mom was in denial. She did not share this with me. She was a good fighter and disguiser of her symptoms while in America.

Two years have elapsed since being in America. Ali shared the diagnosis made in Kuwait (Parkinson’s /Dementia) in2017. He was open about the medical findings and her care. Mom went from being a strong, independent, world traveler, classy, renowned quilter, incredible friend, modest woman, loving mom and wife to a lady that would accuse people of trying to kill her while running out the house naked! She could no longer quilt, cook or entertain her friends. Her decline was severe, luckily in Kuwait, she was surrounded by a loving husband and a group of ladies that were patient, tolerant, understanding and caring. They kept her wrapped in love. They also became a wonderful, International support line for me! (Thank you Stitch group friends! You made a difference for mom and me. Your texts and pictures are a blessing to both of us!)

LeAnn’s grandchildren

Love became the key for bringing her home. America gives her plenty of family, more importantly, her grandchildren. We wanted the grandchildren to create some more memories while she still recognized them! Since her arrival, that has been accomplished! I believed I could keep mom in my house and safely watch her. I was wrong! Mom is a wanderer. It is hard to keep her inside. Locks were not a deterrent for her! Our house is full of stairs. Her balance is good, but one stumble could present serious health challenges! Mom does not sleep well at night which is a disturbance to the household. She is like a four year old who needs activities everyday. I am off for the summer but will soon go back to teaching full time. I have young teenagers who are involved in sports. That means I am driving to and from practices every day. These were some of the reasons Ali and I decided to find a facility for mom. Finding AG has been a blessing! The staff is incredible. They keep us informed. They know mom and love her! Mom can safely wander 24/7. There are no dangers of her starting a fire because she wants to cook. There are activities for the residents morning thru evening. I trust God’s hand in finding mom’s new home! His presence in this journey, makes it easy for all of us involved to show His love to mom (and the residents residing with her). She is visited daily and loved dearly! The days are not always easy. Mom continues to have difficulty. She also has beautiful days where we see what God sees, her heart! 1 Samuel 16:7

The decision to place mom in an Alzheimer’s facility was based solely on what works for our family. For those that are facing similar decisions, my prayers are with you! There will be feelings of guilt mixed with feelings of peace. Let your heart prevail as you choose. At this stage of life, Atul Gawande, author of BEING MORTAL, says it best, “The ultimate goal is not a good death, but a good life-all the way to the end.”

Great Visit! (7/14/19) Alzheimer’s

Today was a perfect visit! Mom was not hiding. I found her immediately in the party room where the residents had eaten birthday cake. When mom saw me in the doorway, she immediately jumped up and hugged me. She then took me over to meet a friend. She tried to introduce me but kept calling me the names of her sisters. Mom’s friend didn’t mind. He was not focused on us! It was sweet how mom kept trying to pull him into our conversation. Luckily, a family friend who resides there, Ms. Ellie walked over. She let mom hug her and they both talked. There was no real conversation, but both ladies were happy babbling!

I had brought a Reese Cup for mom. She loves sweets! I told her she would receive it once in the room. Walking became a challenge. Not because of her gait or being uncooperative. The problem was, mom started taking off her clothes! I insisted she keep them on or I would keep the candy. She partially obliged. We reached her room and only mom’s outer shirt and bra were off!

Mom first took off her top shirt. Maybe she was hot?
Mom refused to walk until her bra was off! Really?!?!

We made it back to her room with the rest of her clothes on. I was proud of her! She sat down on the bed and opened the candy!

Happiness!
Mom is a neat eater! She was using the paper to try to catch her crumbs.

After finishing the first piece of chocolate, mom had to wash her hands. She would not eat the second one because her hands were dirty! Mom has always had OCD with cleanliness. That remains a dominant trait!

While mom was washing her hands, I contemplated on eating her chocolate. Would she remember it was there? LOL, I did NOT and would NOT do that to mom! She may easily forget some things, but never her candy!

Mom washed her hands and promptly returned. She grabbed her Reese Cup and went out to the hall where she heard voices. Mom being the social butterfly, was talking by the time I reached the group. It was a man, wife and their dad. They all knew mom. The daughter’s name was Mary Ann. She had spent several evenings with mom while visiting her dad. The first time she meet mom was several nights ago. Mom had been having an emotional evening. Mary Ann went to sit with her. Mary Ann shared with me that while sitting with mom, she felt prompted to go get a book from the bookshelf. Mary Ann grabbed one and took it to mom. Mom immediately calmed down and started talking as she touched and turned the pages. Without knowing anything about mom, Mary Ann had grabbed a fabric book. Mom was a renowned quilter and expert on fabrics before Alzheimer’s robbed her of the ability to continue. The book filled with fabric and Mary Ann’s kindness gave mom instant peace! I am thankful for this new friend who listened to the whispering in her heart! God sends His angels in many forms! (Psalms 86:12, Psalms 9:1, Galatians 5:22-23)

Outing With Mom(7/13/19) Alzheimer’s

Yesterday Kincade and I picked mom up for an outing. Our first stop was Chick Filet. Mom loves ice-cream so I bought her a cookies and cream milkshake. Our second stop was Barnes and Noble because Kincade needed a new Bible and mom wanted something to read. Before going in the store, I told mom that she had to leave her milkshake in the car. She obliged!

Mom loved the store, especially the messy clearance table! She spent the entire visit stacking everything nice and neat! (1Corinthians14:33) She finally left the table because she had to go to the bathroom. Outings with mom is like having a toddler who is in the process of being potty trained! When mom says she needs to go, everything else is put on hold until she makes it to the bathroom! Yesterday she did well! She went into the stall and knew what to do without help from me. There have been times that I have taken her in and she stares at the toilet telling me she does not know what she to do! After the bathroom break, mom decided she needed to go to the car immediately! It scared me! I did not know what was wrong. I gave Kincade my credit card to buy our purchases and got mom to the car. Come to find out, NOTHING was wrong. She wanted her milkshake! The day’s outing was short, but I was exhausted by the time I checked mom back into AG! (Psalm 73:26)

Mom discovered clutter in my car!
Mom kept herself occupied by trying to organize the glove compartment box!
Mom’s reality is that a shiny door handle becomes a fascination!