Some days moving mom from her home in Illinois to an assisted living facility (ALF) nearby seems like forever ago and other days it seems like yesterday. Many heartbreaks later, she is actually doing okay now. Mind you, ‘doing okay’ is all relative. With each morning she awakens, her mind is slipping further away. As with most Alzheimer’s patients, come about 3:00 pm the sun begins going down in her mind, slipping into an abyss of jumbled confusion and terror. Nothing makes sense at this time. Nothing. And, nothing will bring her back to reality during the sundowning. She has to ride it out. Ride it out? That sounds wrong and inhumane to think about. I know this much, if I was trapped inside my head with nothing but confusion and unrecognizable surroundings, people, happenings and no recollection of what I was just told, I would be terribly scared. I know she is scared, and I’m scared for her. When the moments of clarity, or should I say, moments when she’s as clear minded as she can be happen, she realizes to the best of her ability what is happening to her mind. She will vocalize her realization. What do I say? What can I say? I say nothing. I listen and hug her while reassuring her she’s not alone.
Lately during our visits with mom, hubby and I have noticed a dramatic difference in her attitude, her moods are leveled out the best as can be, she’s moving around better and walking with a walker to get around. After breaking her hip in March of this year, she required numerous months of rehabilitation. We were told she mostly likely would be in a wheelchair for the rest of her life. Not mom. Nope. She’s up and walking, sometimes without her walker as long as one of us is around to hold onto her.
We have also noticed her sense of humor arising out of nowhere at times. Noticing everything that needs fixed or taken care of, like the grass needing mowed in the courtyard of her assisted living facility. She was telling us she could mow it and pull the weeds. What a hoot she is.
When we visit, we make a point of taking her outside to get fresh air. Besides, it’s depressing to sit inside and see others with absolutely no quality of life and no visitors. She has a couple of friends who she hangs with and we always include them in our visits if they’re willing. It’s the highlight of their day. Of course, it takes mom some time to realize she’s not in Illinois when we visit. In fact, she wanted to walk home just the other day. Some days she thinks she drove there and is staying in a hotel. Some days she thinks she’s in a hospital. Some days she thinks we flew into ‘her’ town and asks where we are staying. This is all part of the Alzheimer’s package.
Through all off this turmoil since December 2017 when we moved her from Illinois to Florida, she has been a fighter. Sometimes literally. Mostly because she is too proud to give up. I’m so proud of her. The confusion of her location is slowly disappearing as she continues to become more involved with activities at the ALF. In fact, we have noticed that she’s helping others worse off than she is. This pleases me to to see her willingness to help others instead of focusing on herself and her own disabilities. Her entire attitude has changed for the better. This has come as a complete surprise to my husband and I. Not too long ago her mental and physical status were very bad. I cried a lot wishing none of this was happening.
Nearby, there is a small airport. While outside, she marvels at them. Pointing them out to us with each one that passes overhead. “Sometimes they even jump out of the airplanes”, she told us. “Why would anyone want to do that”, she asked. We laugh and agree they are crazy to jump out of a perfectly good airplane.
Backing up to my childhood years, mom and I didn’t have a normal mother/daughter relationship. I was always afraid of her, wondering which mom I was going to get. What she didn’t realize is I was a little girl wanting to be loved and accepted by her. I mean, I thought there were times when she loved me – just not the way I needed her to. There was a lot of mental illness going on inside of her head and no one could help her. She refused. In typical bi-polar form, she refused to take medications, refused any help and refused to admit she needed any. What I knew then, is confirmed now. My mom had mental illnesses from the time I was born.
Now, although the clouds are formed and will eventually cover her entire mind, we look to the sky and watch airplanes, paratroopers, and clouds. I’ve always loved clouds and looking at them imagining their forms to be unicorns, elephants, and other imaginary things. There isn’t a time I remember my mom slowing down, taking the time, spending quality time with me to experience these life wonders. Nowadays to my delight, she’s happy to do just that. Talk, wonder, imagine and get this, love each other.
The courtyard at the ALF where we do most of our visiting is surrounded by lovely yellow hibiscus bushes. As we sat looking to the sky, we noticed this one bloom. She kept commenting on how pretty it was. I asked her, “Do you want to walk over and see it mom”? With exuberance she replied, “yeah”! Without her walker, I held onto her while we walked and noticed she was walking without much of my assistance. I was merely there for support ‘just in case’.
She smiled and touched one of the lower blossoms, admiring its beauty. Such a small effort on my behalf to help her appreciate, touch, smell and admire nature brought her so much joy. I wondered at that moment where this mom was all of my life. It is clear to me now that she’s been there all along to the best of her ability. Her mind wouldn’t allow her to be anything more than she was because it was sick.
Although we’ve been through many ups and downs in our relationship, there is a bright light now. I have the mother I have always been searching for. Now that she’s on the right medications for her mental illnesses and Alzheimer’s, Alzheimer’s makes her forget to be angry, jealous, bitter and mean. There’s a new dynamic to our relationship. We laugh, we talk, we actually enjoy each other’s company. Whereas before there was always a wedge between us that was so difficult for either of us to understand or overcome. That wedge is called mental illness.
Look at her! Standing on her own just six months after breaking her hip and being wheelchair bound for over 5 months of that time. Now I’m thankful she could never sit still and was always hyperactive. That is exactly what drove her to walking. She couldn’t take whatever life she has left of remembering go by sitting down.
Making phone calls to her friends and my brother ‘back home’ while we visit fills her heart with joy and keeps her connected to what she remembers.
Sitting outside in the fresh air talking to her son, my brother, brightened her day so much on this particularly ‘good day’. In fact, her response to me for making the call for her shocked me. “Thank you for helping me”, sincerely telling me. She had never told me this to my recollection. And trust me, I would’ve remembered.
My mom has always been beautiful. Her smile is what I will always remember the most. I used to wish that I could put that smile on her face, but it wasn’t in the cards. This thought was kept to myself for the longest time. Thinking and wishing would bring too much hurt otherwise. I knew there was something wrong with her way back when, but I was helpless. To try to make her into someone I wished I’d have wasn’t possible. This realization took many, many years of adulthood and mental wounds to heal for me to realize.
Being put in the position of her sole caretaker seemed impossible at the time – a mere 9 months ago. With my own health issues, it was daunting. With barely enough energy to care for myself, I couldn’t imagine having to make all of the arrangements to move her, get her into a nice facility when she nor us could afford it out of pocket. Many hours of being put on hold, calling agencies, obtaining an elder lawyer to help with the transfer of her Medicare and Medicaid from one state to the other was a complete nightmare all by itself. For the record, it’s still not complete after all this time.
What is complete is my newfound mom’s love. Her vocalizing expressions of how proud she always was of me, how amazed she always was of my creativity and hard work, how good of a mother I am, how good of a husband my husband is, how good of a son-in-law my husband is to her, all of this and more has given me my mother. The mother I never had has appeared out of all the tragedies and ups and downs in this thing called life. Please don’t misunderstand me. Alzheimer’s is a terrible disease of the mind. It affects everyone around the afflicted person. Alzheimer’s steals the mind of the person who has it. I try hard to not think about the past and focus on the now and how I can help make her happy to the best of my ability. Now I’m able to do that. The past is the past and it cannot be changed. Only now can I do the one thing I’ve always wanted to do for her – make her happy. Perhaps this was God’s plan all along. I don’t know. What I do know is that I’m grateful to have whatever is left of her mind and soul in a loving way. My husband and I take her to lunch and she’s happy as a lark. Whereas before, none of this would’ve been good enough. I’m not happy she has Alzheimer’s and mental illnesses. I am happy that my husband and I can make her happy with the simplest of life’s offerings and that’s good enough. I am happy that she is now expressing herself to me in a loving, motherly way. I am happy I’m the one who is her soul caretaker. No matter the circumstances my wishes came true after all. I have my mother who clearly loves me and is thankful for who and what I am. Is it wrong to be thankful for her love and appreciation when she’s carried around her tragedies and illnesses all this time? Sometimes I wonder if I’m being selfish in this thinking. Then I correct myself and move forward with gratitude and the foresight to realize that this has all happened for a reason. Everything we’ve been through has brought us both love, peace and acceptance.
Hand in hand we will fight together to remain at peace and continue to love one another.
*Side note: None of this would be possible without the everlasting love and dedication of my wonderful husband. He is my rock, my world, my everything. Without him, I couldn’t have done this.
*Also, my dearest high school friends, Cheryl and Lisa were instrumental in securing all of the donations, packing, cleaning, running around, taking care of mom’s home, belongings, and my sanity. I can’t thank them enough for their unselfish friendship and love. They did all of this without me asking. They came running to my rescue when they found out what I was faced with. I’ll be forever grateful to them.