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)
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.
Happily mom was happy with the clothes being put away. She was excited to go play with Hampton, his friend Tullulah and Kincade!
Today mom wanted to color! Perfect activity for all!
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!
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.”
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.
Mom wanted to walk so Grant helped her stand up. As we started walking down the hall I became alarmed! Her gait was strange. She had to hold on to Grant and Lisa for support! I had her sit down so I could find a nurse. As I was explaining to her that she needed to sit because I was worried about the way she was walking, I noticed that one of the shoes had a lift! No wonder mom couldn’t walk. I told her we were taking those shoes off and walking back to her room. Instantly her gait returned to normal. Unfortunately her OCD kicked in. She did not want to walk on the carpet because her feet kept getting sandy! (OCD with Alzheimer’s can test the strongest of patience…)The three minute walk turned into a 7 minute walk, but it was a success. We made it to her room! Her face lit up like a little kid when Grant gave her a little bag of orange slices and chocolate covered almonds. (Those are happy childhood memories for me. When I was a little girl, shopping days would include going to Sears downtown. Walking through the front door, the first thing we saw was the candy counter. Mom would always get orange slices for her, chocolate covered raisins for me and Michelle and if I were really good, when we left, I was allowed a few pieces of candy corn!😋)
Riding in the car to visit mom, I had some apprehension. The ‘naughty’ reports (she had struggled the last few days, but the staff reassured me her behavior was normal and to be expected) made me nervous. As the children (today I had Grant, Lisa and Lucy) and I entered thru the front door, mom was the first person we saw. My heart sank. She looked awful (tired and unfocused). I asked the nurse how she had been. He told me she had a really good day! “Yay” I silently whispered. I knelt down in front of her and said, “Hi mom!” She refused to acknowledge me. She was fiddling with buttons on her blouse (I thought I had removed all of her clothes with buttons. I guess I missed this one). After I helped her with the buttons, she focused on my voice. It wasn’t my face that caught her attention, but Grant’s. She was so happy to see him! As Grant hugged her, I looked down and realized she had someone else’s shoes on her feet! It looked like she had been shopping! (Shopping is the term used when Alzheimer’s patients wander into other patient’s rooms and takes stuff they like.) The children and I giggled. I made a mental note to return them to the front desk.
Back in the room, mom finally had her feet clean and shoes on. We walked outside. She loved sitting and eating her candy. Suddenly, she was overtaken by emotion. She jumped up hugging each one of us. The simplicity of her love brought tears to my eyes!
After eating candy and hugging everyone, we went back inside. We helped mom complete a puzzle. She also had a good FT call with Ali and told him she loved him. It was a great visit!
The last two days when I have gone to visit mom, a staff member reports about the anger mom is beginning to exhibit. Instead of playing the role of a mom getting a bad report on a child, I am the daughter receiving this news on my mom! I was mortified! Mom had began attacking staff by scratching, pushing and cussing (yep, mom’s vocabulary may struggle unless she is mad. At that point her vocabulary makes us all blush)! My eyes welled up as Mrs. H explained that mom’s behavior is expected. She is showing her fear and frustrations the only way she knows how. Mom’s move to America, being placed in a facility and telling her husband good-bye (he flew back home for work but will continue to fly back here to see mom) has been traumatic! She is suffering from her own version of PTSD. (I understand this type of PTSD and negative behavior as a teacher. My school children lived in poverty and experienced hunger and violence. Their aggression was directed at me because they knew I would continue loving and protecting them. The children were not mad at me, they were frustrated and scared!) The insight of the staff in understanding mom has given me peace!
After waking mom up, I told her she needed to get dressed so Richard and Hampton could visit her. (The nurse had warned me I should enter the room without the guys in case she was naked again, I am glad I heeded her advise!) I pulled out some PJs so we would not have an argument over clothes. She can still button, but it is a very slow process!
When I stepped out in the hall to tell the guys it was safe to enter mom’s room, this is what I witnessed! Richard was helping one of my favorite ladies zip her jacket. Alzheimer’s robs people of so much, but they still deserve and want kindness and love! Richard shares both of these attributes freely! (Colossians3:12)
I am thankful to finally see mom smile! She was happy to see Richard and Hampton. She wanted us to take her on a walk. I could tell mom was beginning to think clearly because she would not walk in her pjs. She had to have clothes on! (Thank goodness she wanted them on instead of off!) Back into her room we went. After 20 minutes of debating and picking every single piece of lent off from her pants, she was dressed and ready to walk except her shoes were not on! This is another struggle and OCD issue. She can’t stand to have anything on the bottom of her feet! Watching her brush imaginary debris from her feet, putting her shoes on only to take them off again is a test in patience! (Ephesians4:12)
While walking, a nurse asked if we could try to get her to eat her dinner. Mom was too grumpy to eat earlier. Keeping weight on her is important. We took her into a little room and encouraged her to eat. Luckily she did not need much of that. She was starving! As she completed her meal, Ms. M brought her a coffee (brown, mom’s favorite) and a cup of ButterFingers (Ali left her favorite candy and the nurses make sure she gets some everyday). It made for a happy ending and a peaceful good-bye.