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!
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.”
Back in America
Mom and Ali arrived in Charleston, SC on June 7, 2019. It was her final destination and going to become her permanent home! Mom was wheeled into the airport looking frail, frazzled and exhausted! She was not making much sense as she tried to communicate except when I asked her if she knew who I was? Her snappy response, “Of course I do Lisa,” let me know I had insulted her! Maybe I shouldn’t have smiled, but I did! Mom was still there!
It has been two years since my sister and I had last seen mom (LeAnn). The decline in her memory and speech was shocking! Her husband had been in close contact with me. His honesty, along with my reading everything I could on Alzheimer’s, had my brain educated and prepared. Nothing could have prepared my heart!
The first night back in my home proved to be challenging. I knew the jet-lag, due to the 22 hour flight from Kuwait was playing havoc on mom’s mental state. Yet, I had to admit, there was more! Alzheimer’s was boldly introducing itself to me! Mom was agitated and kept wandering. The doors had to be monitored because she kept trying to escape! My 12 year old son asked me if he could sleep with his bedroom door locked because grandma kept barging in. That had not been her room for over 5 years, but that was the room she kept returning to! She took her frustrations out on me and Ali. (At one point she told me I was stupid!) Luckily, she had always been close with my husband, so Richard was able to provide her security.
Around 9 PM, mom was fed and ready for bed! To say I was relieved was an understatement! I needed peace and quiet to process the day! I know there will be good days mixed with bad days. Patience will be tested as tears flow! Alzheimer’s is robbing all of us of the wife, mom, daughter, sister, aunt and friend we once knew. One thing Alzheimer’s will not rob LeAnn of is the unconditional love surrounding her! She has a ‘village’ that extends worldwide! These friends and family embrace LeAnn, no matter her condition! This is not the journey I expected life to take us on, but God did! My Faith and trust are in Him, no matter the road ahead!
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