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!
Amazing!! At 7:48 PM, my phone rang. It showed the call was coming from Ashley Gardens. My heart stopped. What had mom done now? I answered the call. It was not one of the voices who usually calls me. It was the voice of Bernadette, one of the kind souls who works there. She said that she had never heard mom ask for me, but tonight, mom asked if she could call ‘Lisa’. I began to tremble. What would mom’s reaction be? She struggles talking to Ali unless she can see him on FT.
Mom was given the phone. The conversation that ensued left me speechless. Her voice and words were that of my mom I knew years ago.. If I didn’t know better, I would have sworn that my mom was healthy!Her conversation was erratic, yet she used words and formed sentences without hesitation. I knew she was having a moment of clarity when her voice began to crack. She was scared. She said she did not want to be like this. She asked for honesty. I told her I knew she was scared. and how proud I was for her handling this situation. She said ‘Thank you’! I told her her brother and sister would be here next week along with Ali. She asked me to please not say that! My interpretation was that she was afraid that would not happen. She was afraid of her hopes being dashed. The unfortunate nature of this disease is by the time I write this journal entry, mom will have no recollection of the phone call or conversation. My prayer is that she will carry some of the warmth from our talk in her heart, even if she is unable to understand its meaning. Sometimes, the feeling of love in one’s heart is all that is needed to continue a difficult walk.
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!
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…
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 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.
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.
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. ❤️🙏
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)