It’s been a little over two years since I wrote A Different Perspective, then Gone, then It Wasn’t The Kool-Aid, three previous ramblings about my mother’s Alzheimer’s care. This past weekend I was moved to write a fourth and final chapter. Click on the titles above to read them in their original order, reading this chapter last.
Today’s grief takes place at the same residential memory care facility. Same forty-five miles from the nearest large town. Same poor cell service. Same dull, dreary, rainy, weather.
The first thing I noticed in the central living room area were two more men this time for a total of four. I decided that men’s shorter life span is a blessing. As I sat, more of the surroundings sunk in. This time I was less afraid to look, listen, or touch. Men have it easier.
Get past the woman who is constantly moving. She must think she’s in charge. Always bustling around. Sometimes stopping to ask an unintelligible question. Sometimes to offer imaginary objects with arthritic hands.
Get past another woman who is constantly walking the perimeter. She must think she is the security department. Always testing the locked doors. Constantly exiting to the fenced courtyard. The alarm sounds, an obnoxious blaring wails from a keypad on the wall. Short-staffed, one of the workers has to go retrieve her and silence the alarm. Another ten minutes pass and it happens again. Over and over.
Get past two obviously recent arrivals. They both display the countenance ladies born in the 30’s or 40’s have when going out in public. Hair straight, dressed nice, shiny shoes. One carries a purse. There isn’t a thing in her purse she could need. She can’t leave. She’ll never leave again unless accompanied by staff or a loved one.
Get past my memories of black and white TV movie depictions of mental wards. The sights and sounds are very similar. But this is in color. And it’s real. Live. Right in front of me. These weren’t actors I was in the room with. Or were they… In various stages of mental decline and dementia they were all acting. Acting out physical life in different degrees of detachment from where their thoughts are, or used to be.
Get past the central living room area that could use remodeling and furniture that could use upholstering and objects from yesterday’s or last week’s activity time that still weren’t put away. All that might seem important but doesn’t matter to the memory care unit residents who are just trying to get by.
Get past the too-loud television tuned to the cartoon channel or the just barely color reruns network.
Get past the VHS tape that’s been played way to many times during movie hour. You remember VHS tapes. The picture distorts and bands crawl slowly down the screen as if the player is just about to eat the tape for the final time.
Get past the lady in the wheel chair with beach towels on her lap to soak up the phlegm spewing out of her mouth like she’s throwing up. She’s in obvious pain or fear or disconcertion but she can’t communicate her thoughts or feelings or suffering.
Get past looking at discarded ghosts and instead look at people. People who once loved, once fathered or mothered, maybe raised a family, provided for a household, possibly made great contributions to church, community, or mankind. But today, they sit. Communicating little or not at all. Comforted as best they can be by a caring staff or occasional visitor or family member. Yet, stuck forever behind the electronic door with the obnoxious blaring keypad on the wall.
Most don’t interact. It’s like being in a foreign country with no grasp of the local language and hand gestures aren’t even a satisfactory method to communicate. It’s like the longer they are captives here the thicker the individual isolation walls grow around each one of them.
As I sat there holding my mom’s hand she mostly stares down at the floor. Glancing up occasionally to look at me or my wife. Sometimes smiling back for a moment, stopping as if she is about to speak. Then like being in a crowd of strangers or being ashamed, she breaks eye contact and turns away from looking directly as us. Grasping my hand, touching my wedding ring, and occasional glances are all that are possible. She’s still gone.
Isolation. They are all here but not all there. Their time to dream dreams, set goals, or make important decisions is over. Now it’s minute by minute, hour by hour, day by day, week by week, month by month, and maybe, year by year. Over and over again. No one knows how long they will be here. But here is all they have left. Isolation. Gone.
The isolation is so real. I can see it in their eyes. Helplessness. Confusion. Uncertainty. I can hear it in their groans or attempts at communication. I can feel it as my body aches thinking of spending my days like them in a wheel chair with no way to communicate.
The isolation forecast is forever. As long as they are still here on earth this is how they will spend their days. And the longer they live the worse it will get.
Their faces reflect varying degrees of resignation, separation, and fear. Desperate for mercy. Desperate for relief. This place isn’t where they wanted to finish life. They might have put up a fight before being sentenced to this emptiness. They didn’t want the memories of their lives to turn into this. They didn’t make any life mistakes punishing them to this isolation. They didn’t set out to be prisoners in this place behind the electronic door with the blaring keypad on the wall. It just happened.
I am in a fog. Minutes seem like years. I don’t know what to do. I don’t know what to say. I don’t know how to act. I feel powerless to make a difference. Caregiving is not my strong suit. This situation is not something my own wisdom, strength, or determination could fix. All I could do is extend my hand and wait to see if it was accepted.
For the past several years friends have asked me if my mother still recognized me. Over and over that was the test of how advanced her dementia was. Does she still recognize you? Last weekend I learned a new test. I did not recognize my mother. My wife picked her out immediately. I didn’t. Mom didn’t look like anything from my memories. Even as we sat down it took me several minutes to accept she could be the same mom I once knew. A masking tape label on the wheel chair with a handwritten “Lillian” was the best evidence. I had a different perspective.
My mother was the lady with the beach towels on her lap. While the hospice nurse was called and took her away to check her lungs I sat and wondered if this was a glimpse of hell. Nothing to look forward to. No break from the pain. No end to the grief. No happier times to anticipate. No way to escape sinking deeper into emptiness. Why? Why are these people here? What good could come out of this? Yes, this was hell. Hell On Earth.
Then I got past the sights and sounds of what was in front of me. I remembered I was sitting there on Palm Sunday. Palm Sunday. A great party. The day Jesus rode triumphantly into the city. Only to have the middle of the week turn into public betrayal, then punishment, then isolation, and finally a cruel death.
The memory care residents here are way past their Palm Sundays. Their earthly triumphs are over. Their minds have betrayed them. They are somewhere in the middle of the week. They are victims in a limbo-like somewhere almost-gone isolation. Minute by minute, hour by hour, day by day they sit in increasing gloom waiting to be set free. Like a permanent dark Good Friday their world seems over. Lives are fading to an end without meaning. Any hope of restoration seems a long, long, long, way off while condemned to sit and wait in emptiness.
This week started with a Palm Sunday party and quickly progressed through terror, darkness, and a Good Friday of isolation. It ends today with Easter Sunday. The assurance that whatever we encounter here on earth is temporary. We are here on earth for just a short time. But Easter is forever.
Get past being proud and taking the risk that your place in eternity will just happen. While you still can, behold. While you still can, accept grace. While you still can, make the biggest of all decisions. While you still can, choose your final ending. While you still can, choose to grasp His outstretched hand.
Good Friday is the darkest day of sacrifice. It is the day Jesus was crucified on Mount Calvary. Everyone mistook that day as the end. Three and a half years wasted. The King was just an ordinary man. All hope was lost. Isolation. Darkness. Fortunately, Easter Sunday was coming but Jesus had to go through the darkness to get us to Easter.
Easter Sunday is when the promise came together. Hope came alive. Hell was defeated. We will be restored. Transformed. But only if we accept, believe, and commit. Only if we choose to grasp His outstretched hand. Now. Before the obnoxious blaring keypad on the wall goes off for one final time.
Freedom from an eternity of isolation
Reflecting the unseen Risen Son back onto this dark earth
Just for accepting His outstretched hand
Thank you Jesus,
Forty-eight hours after a worker punched numbers into the electronic keypad to let Liz and I leave, my mother was also set free. Mom took a nap after dinner and died peacefully tucked in her bed. She made it through her Good Friday. Her Easter has arrived.
My dad died November 16, 2007, the same day as my grandfather’s (mom’s dad Roy E Garnett) birthday. My mom, Lillian Garnett Nelson died this past Tuesday, March 26, 2013, the same day as my brother in law’s (Liz’s brother Jeff Mays) birthday.
This week, partway between Palm Sunday and Easter Sunday, I got “the call” that mom’s time on earth was over. After being on the phone I walked outside to get some fresh air and my tearful eyes were greeted by a full moon rising above the trees.
Just as my mother was set free, a full moon rose over the trees to light her entry into heaven
A full moon, reflecting the unseen sun, back onto this dark earth
A full moon, candles on birthday cakes in heaven
Thank you mom, for your gracious heart, for your giving spirit, for everything.
Your son, Jon
14 responses to “Hell On Earth, Easter Sunday, and Birthdays”
Hi Jon. Your sagà of your Mom’s journey through the agonies of Alzheimer’s took me back to the last few months of my Mom’s life. Her cancer had spread to her brain cells and I watched the awareness, the cognizance, the skills, the humor, the self-confidence, and finally my Mom disappear. Memories you never forget Jon, but look past those heart-wrenching memories and grab onto the earlier memories of happy times. Your Mom will be remembered at a Memorial Service in Texas in September, as a P.E.O. who has joined Chapter Eternal. Love and prayers.
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Thanks Barbara. We do miss your wisdom on Sunday mornings! And thanks for informing about the service in September.
Jon, words cannot express what I am feeling for you right now. The difficult leg of the journey with your mother is now behind you, and all that is left is a joyful reunion on the streets of gold, where the roses never fade. It’s difficult to fathom why, in the midst of it all. Why must so many elderly people suffer so greatly as their lives fade? Why must their loved ones suffer so greatly, not knowing what to say, what to do or what to feel? There is so much we don’t know, but so much more we do know…we know that the God who created us loves us and wants us to know Him. We know that He never allows more than we can handle. We know that He is with us, holding our hands through every difficulty (just as you are holding your mother’s hand in the beautiful photo above), if we only will let Him. There is a time to mourn. Jesus mourned for His friend Lazarus, even knowing He was going to bring him back to life! I mourn with you, and celebrate with you, too. Thanks for allowing me to read your powerful words detailing this journey, and for sharing a journey with me. My heart, thoughts and prayers remain with you and Liz. The pastor at my Mom’s funeral asked us all to look around at each other, and said, “You are the next generation. Life on this earth does not last as long as we all think it does. Make your lives count.” Without Jesus, we cannot! Let’s finish the race strongly, and honor the Man of sorrows, acquainted with grief!
In the love of our Messiah,
Thanks Garry, my Journey brother. I thought of you MANY times this past week as I was trying to force my feelings into words.
Beautiful and insightful and glorifying to our Lord. I am grateful I have not had to experience this kind of helpless heartache, but grateful more that you know the eternal transformation and life she now has in heaven and that you two have accepted Christs offer of salvation and know our lives on earth will not always be or go as we planned but that the promise of eternity in Heaven is real. Hugs to you.
Beautifully expressed, Jon. I’m sure this process of putting feelings and impressions into words has been healing therapy for your heart and soul. It certainly has blessed your readers. Thank you for not shying away from the ugliness of the dying process. It makes our hope of new life that much more precious! “O death, there is thy sting? O grave, where is thy victory?…thanks be to God, which giveth us the victory through our Lord Jesus Christ.” Blessings on you both!
Jon this is an amazing tribute to your Mom. I know how hard it is to watch them slip away from you. You keep grabbing on but, they keep drifting away. I am sure she is watching down on you with loving eyes. Her mind and body healed and she is whole again. I am sure you will never look at a Moon rise again the same way, but just know that is Lillian keeping an eye on you. We are so sorry for your loss. Love and hugs Kim
Thanks Kim! And yes, I do have a newfound liking to full moons!
Your beautifully written story was very touching, and I still have a few tears in my eyes. I am so sorry you lost your mother, but after reading the story about everything she and you experienced at that last meeting, I am somewhat relieved this chapter is over for you. I know that sounds bad, but I had a certain amount of relief when my mother passed after also going through some “hellish” experiences. Your description about her spitting up on the towel is very similar to what happened to my mother just a few days before she passed. Alzheimer’s is a cruel disease. You did an excellent job of helping people like me who don’t understand it have a better idea of what it does to people and those who love them. You and Liz will be in our prayers, as I know this is a very hard time for you.
Dear Jon & Liz
Tho I have not met you we are friends in the spirit. Your testimony of your Mom’s journey has blessed me more than I can put in words.
My son is Bruce Thayer and he shared your powerful testimony. As a lay pastoral visitor for 40+ years I have had the unfortunate experience of seeing care ctrs as you describe. BUT “The heart remembers what the mind forgets”. I’ve found a loving hug, a smile, hands gently rubbed with lotion, hair brshed are simple things that convey caring and often bring a smile.
My loving prayers are with you both.
Joyce, thanks for the kind words! I think the world of your son. I wish we lived closer to each other. Jon