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!
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!
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!
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!
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)
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)
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.
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.