Dementia is a cruel disease!
KJ and I went to visit mom at her facility, only to be greeted at the door with a ‘bad’ report! The field trip bus returned early after mom tried to escape from the bus (she kept telling M,the bus driver, she wanted outside). When mom was told ‘no’ she began hitting and kicking! Mom was put into a seatbelt which she was able to pull her legs through and escape! The bus had to stop on the road to restrain mom and buckle her again. Mom was given her milkshake because M knew she was hungry since she did not eat much lunch. (Hunger is a trigger for mom!) Mom proceeded to throw her milkshake causing an ice cream explosion!!! Mom had just returned to AG and was sitting on the couch when KJ and I arrived. She was sitting in a deep trance. It took about 2 minutes for her to ‘snap’ out of it and make eye contact with me. She immediately began crying telling me she was sorry and she doesn’t want to be sick (It is horrific to be trapped in your mind while having moments of lucidity understanding you are trapped)! We walked down the hallway and sat. She proceeded to tell me (her language has greatly diminished yet there is clarity in her broken words and sentences) that she was hitting people on the bus because she wanted off (Mom loves the outdoors. She also is a wanderer, especially when agitated). She knew she had thrown her milkshake. She kept apologizing.
M came to talk to me. She was kind. She felt there were triggers:
-mom needed bathroom
-when told NO mom felt confined and threatened
-mom was hungry
-mom kept saying something was burning her???(maybe sun streaming through window)
After talking to M and mom, I asked mom if she were hungry. She said YES. I told her I would take her to the restaurant but she had to let me change her clothes. She cooperated!!! Soon she was at the restaurant and very happy! She loved walking outside and starring at the water. She recognized the grandkids and she ate and ate!!! (Her favorite last night were the Bobby fries and salad😂🤣). I drove her back to AG. She quietly got into her pajamas and let me put her to bed. It was a peaceful ending to a challenging day! John 14:27 (Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid.) I continue to battle fear as I watch my mom live with this disease. I get scared every time I forget something, am I doomed to the same fate? The fear can be terrifying! I choose not to allow the ‘What ifs’ to paralyze me. Instead, I hold on to Faith, Hope and Love! (1 Corinthians 13:13) His Love will never abandon mom while the same Love will give me the strength to move forward when all I want to do is hide!
When mom joined Ashley Gardens, the staff was excited to hear that she was a renowned quilter. There were several other residents that used to sew and quilt and the staff had planned a field trip to a quilting show. I was excited to be asked to accompany them as a chaperone!
Several months later, the day of the show arrived. I was way more excited than mom. When I got to AG, she was agitated as she ate her bacon, eggs, grits and cinnamon roll. I asked what was wrong? She looked at her plate and said that everything was awful! I chuckled while agreeing. Poor mom! After eating Richard’s homemade grits and cinnamon rolls, her breakfast was very bland! When she ate all that she could (cinnamon roll and bacon) I got her to walk to her room so I could shower her and dress her in something cute. I got her to her room. That was the only part of my plan that I succeeded in. She refused to shower (I really wanted to wash her hair). I was able to convince her to put pants on, but not the ones I wanted her to wear. Oh well, just like when my kids were little, there are some battles not worth fighting. This was a special day and I did not want mom upset!
We got the residents loaded on the bus and started driving. Mariah was our driver and made the drive entertaining with her fun conversations with the ladies. I laughed when one of them acted like the typical ‘back-seat’ driver! Have mercy! I have to admit, I am glad I do not have to worry about running into her on the roads! Upon arriving at the coliseum, Janet and I unloaded the bus, took ladies inside and waited for Mariah, who was parking the bus. Inside, mom became distracted and very quiet. She moved around a lot, but would not focus. Mariah would ask her something about a pattern or color. Mom had very few responses, but the ones she had were profound! The three I recall were when she looked at one quilt and clearly said, ‘That took a lot of work!’ Another quilt, she commented on how the colors worked well together. One area, she chose her favorite quilt because she liked the design! I loved that she was making connections. The connections were real, which I soon realized were too real! About an hour into the exhibit, mom began crying. The somber mood lasted the rest of the trip. We rejoined the group and mom was given some anxiety medicine to calm her down. Mariah comforted me explaining that mom’s behavior was normal and expected when experiencing something that was once such a major part of her life The quilting show triggered memories. This was an art she excelled in, whether it was in her quilting masterpieces or the exhibits she would help coordinate. The realization of these memories became overwhelming. The memories of her accomplishments were also her living nightmare of what she can longer do!
It was time to leave. The ladies were hungry and getting tired. We did Chick Filet ‘to go’ so we could go picnic at a park close to AG. Everyone got to sit in the shade at picnic tables. It was pleasant. At this point, mom hardly spoke. I did not force a conversation. I gave her a hug, then left her to her thoughts as I walked around to taking pictures. I needed a few minutes to let my emotions run through my head. I had a tiny pity party as I realized mom’s quilting talent (which she inherited from her mom) was ending with her. Even if Michelle and I had the time to learn to quilt, the experience would never be taught through our mom! Seeing the quilts made me appreciate the talent and time mom shared making quilts for her two daughters and her 9 grandchildren! I now comprehend the love mom poured into the quilts as her way of wrapping us in her love even with the Atlantic Ocean separating us!
Faith, Hope and Love, but the greatest is Love! (1 Corinthians 13:13) I encountered the power of this verse again today doing nothing more than looking through the layer of dementia and seeing/experiencing the beauty of these people with my heart!
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.
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!
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.
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).😁
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)
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.
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!
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!)
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.”