Mother in the Clutches of Dementia

Dementia is terrible thing. I am learning of just what it robs someone of, normalcy. Perhaps

those suffering from it, in the later stages, don’t  notice it as much but for those interacting with them, it is a flagrant reminder of a mind lost in itself in a land that seems far away, somehow misplaced and never coming back.

My biological mother was diagnosed several years ago with dementia. She joined the 47.5 million cases worldwide. Predictions are there will be 82 million in 2030 and 152 million cases in 2050.  5 Million live in the United States, Mom being one so she is not alone by any stretch.

Living in an active over 55+ community, I still come in contact with an aging population that has residents who occasionally have spouses or parents that have dementia. It is not the same as when your family member is afflicted.  I am not sure much of anything prepares you emotionally.   It is draining just to be in a conversation.  

My sister Terri has become my namesake when conversing with my mother. More often than not, I am not only called her name but all references are to her life, memories of time spent with her and reflections on her thoughts and feelings towards Terri. It is pointless to correct her so I find myself responding in Terri-like fashion.  I call my sister afterwards, tongue-in-cheek, to lessen the heartache and tell her what “she” said to Mom. She does likewise as she is frequently in the same position responding in my given name.

Some of my conversations with Mom these days are about things and people I know nothing about. She will lapse into memories and because I was raised by my father and stepmother, I do not have knowledge of a great portion of her life so have no idea of what she is talking about and she is totally unaware. Any normal verbal cues are gone when dementia hits.

Mom operates on a short fuse. She is quick to anger and to sadness. Either mood is hard to lessen or erase so I am careful to not trigger either!  Being several states away, I am dealing with emotions and dementia over the telephone most of the time so am pretty powerless to do much but listen and send things.  And the requests for items to send are becoming more frequent as she doesn’t recall what she asked for. A letter will come, two in a day asking for the same thing, the realities of dementia in black and white. Envelopes will come without hard to decipher hand-writing talking of things I know nothing of. With the affect it has on our lives, I keep it to myself as like so many others,  no one wants to talk about it though it affects millions of Americans and great numbers worldwide!

Mom is alive yet living at half-mask. What are painful are the times she is more than aware of it and makes statements about how silly and disappointed she is at what her life has become. It is then when I and everyone who has ever dealt with the dreaded disease pray there will be a cure or better treatment options in the future so that elderly do not have to suffer with losing their minds. 

This needs to be freely discussed for the  millions suffering, growing daily, and communicate the importance of early screening!  70% of cases are Alzheimer’s, a more serious form that thankfully my mother doesn't  have. 58% of all patients in the US live in lower income homes so funding is needed so financial resources for dementia are essential too. 

As I look back, it is with a grateful heart I had some wonderful memories with Mom before she was in the clutches of dementia. Now I simply embrace her in whatever way I can for as long as I can watching her mind slip away.

The Long Good-Bye to Mom

I wasn’t prepared. I had volunteered at senior facilities in my youth. During my adult years, I have sung Christmas carols, delivered care packages and even visited my ex-husband’s father when he resided there prior to his death. But never had I dealt with someone I loved being incapacitated. Then it changes. 

Some of you may recall about 7 years ago I reconnected with my biological mother after many years of separation.  With that much passage of time, there is really no way to form a

bond like many children or adult children have with a parent but it was still healing in many ways. It gave me a sense of closure to at least hear an ‘I love you’ from the person who brought me into the world. For so many years I felt unloved and forced upon my stepmother. I was part of a package deal knowing it was my father she was in love with and not me or my sister. Our dad had custody of both of us when they divorced as she had left us..

Seeing my mother and getting to know her better, it didn’t take long at all to see why we weren’t raised by her. The flaws don’t take long to come out. But there is a connection there, a love and at times, a real joy.  Moments when she is truly the mother I dreamed of having, though fleeting. Much of the time, I dealt with the reality of who she was and was forced to accept, it is what it is. 

Now her condition has worsened significantly as her health has not only deteriorated but

dementia has kicked in. As the last year or two has gone by, it seems as if everything has accelerated.  Maybe it didn’t progress that quickly, when I look back at all the things that have been going on the past four years but, in not knowing her, I had no idea what was normal and what was not in her behavior. There were falls, unexplained lapses in memory, outbursts of anger, odd behaviors out of left field, that left my sister and I calling Adult Services frantic with worry for her well-being. She was placed over a year and a half ago in an independent living center for her own good. She is watched over and provided her meals. Best of all, all of her medications are administered which helps not compromise as much her heart condition and ensure her meds are taken properly. We had hoped this would help stop the downward progression we have seen.  It hasn't though but she has been much safer. 

I sit here now, full of a heavy heart as we are at the stage I never wanted to see happen. When I pick up the phone, I am never quite sure who will be on the end of the phone anymore. I have only my mother and my sister that I am closely connected too and communicate with regularly on somewhat of a biweekly basis and now my mom is losing it, losing touch with reality. It is as if she is partially dead to me but still alive. 

As my husband tries to comfort me, he can’t quit comprehend as his mother died with her mind intact. My mom will call sometimes sobbing in sadness,  full of a heavy heart

inconsolable like a child. The next call may be her happy full of joy laughing at hearing my voice and in midstream angry at me over something simple like I didn’t call her back over some message she never left or bad-mouthing my sister only forgetting who she is talking to and saying my name.  And the reverse happens when she talks to my sister. She has forgotten how to be happy. 

The ability to discern truth from fiction is hard for her.  Her brain doesn’t comprehend it clearly anymore at times. I am so grateful I had the time to reconnect before this dissension.  As my sister and I share stories of a trip or two we have taken her on, we laugh with glee over the funny moments and then stop in silence with where we are now.  We remind each other we are indeed blessed with those memories but yet are faced with the fact there will not be anymore of those for us with our mother. She is a skeleton of who she was.  

It is refreshing to have each other to share this experience with. There were periods in our lives when we weren't as close. Thank God we are now so that this isn't something either of us has to experience alone. Mom use to tell us she knew her mind was starting to go and was scared. She use to say she was a sorry excuse for a mother and didn't deserve us, both of us being there for her now, as she was losing it and closer to the end. She would apologize over and over again for everything that she wasn't. We let her know as God forgives we forgave her a long time ago. Hate has no place in this world but our relationship would always be different because we are different. I think she got it, she stopped saying it.  Now she doesn’t say it at all anymore. She actually doesn't say nearly as much. She is more like a self-centered child with a mind that is not nearly as reflective as her age.  I am glad. I don’t want her suffering or realizing her physical condition. 

Wow, is it different when it is someone you know, someone you care for, your own parent.  The best advice I get is from my friends, to try to not react to anything she says. So when I get yelled at, cried at, begged for something impossible to deliver or whatever, I am learning to simply 'be', listen and respond simply. I must keep my emotions on a shelf, at least while on the phone or with her. No, I wasn’t prepared for this. And yet, I am glad I wasn’t. It would have hurt too much to know in advance. 

Thank you God for a few moments with my mom to hear I love you.  As her mind goes and one day she leaves this place and goes home to you, I will have some memories shared. I will have had hugs with arms that held me as mothers do to their daughters when they are growing to give them strength and courage.  My time has given her peace to know I have forgiven her for her transgressions. And most of all, I have been able to heal from the pain. God bless my mother inside with what she needs to finish her time here.

Savor Your Loves

Wistful week, reflective moments. While sitting outside with Charley last night, a neighbor walked by with her little dog. She wanted to greet him and he began barking his head off. As she pulled back on the lead, backing off from him in fear, her doggie lurched forward fearless of the dog outweighing him by well over 90 lbs.  Thus began our conversation and the fears we face in life.

Maria was her name. Her husband was diagnosed with dementia 5 years ago. It was not that gut wrenching to her and the family at first as she had lived a rich full life with him and thought it would be a slow long progression downhill. She was fully committed to taking care of him herself, as so many are.  Over the years, the dementia progressed and went somewhere over the line into Alzheimer’s and many thought she was nuts for taking care of him herself.

Maria had baby gates put up so he would not leave the house in the middle of the night. Living in a gated community surrounded by concerned neighbors helped.  She slept on one side of a barricade to keep a constant vigil on him the last two years incase he awakened and needed her. Those years were full of late night walks when he felt he was called to duty by the police force and needed to patrol the streets again.  When driving her car, to him everyone looked like a potential criminal and should be arrested. She would have to have him sit on his hands so he would not grab the steering wheel and pull over to make an arrest like he had for some 30+ years on the police force.  

The day finally came, when diapers, speech and body functions were making it impossible to care for her beloved husband any longer so she was forced to put him in an assisted living center. Within days, he suffered 3 strokes, and within 2 weeks he was dead. She said, perhaps the way he wanted it. He preferred being at home with her. So now, he is waiting in heaven for her return, this time to greet her with his faculties all back in check.

Bob died May 17^th, 18 days ago. Here we were, standing in the street, just beyond my driveway, talking at the sun was going down as if it was any other day. And yet, the conversation was heavy in some ways. I listened as she shared. When she learned I have a great deal of experience being around folks dying of cancer, she asked me questions. We discussed these together as it is more important she come to her own conclusions than mine.

Amazing how, in one conversation, you both can get a renewed faith in God, yourself and human resilience from others you barely know.  Bonds are formed that quickly, by a human connection. We can change each other’s life that quickly and leave an indelible mark on each other in life.  And life is short-lived.  Life is a cycle and there is no denying part of life is dying. And then returning home.

Today, I was in a melancholy mood. As we sat waiting for the vet to see our dog, a man pulled out front with his car, right outside the front door. He came around to the passenger side and gently lifted his dog, a golden retriever mix out of the front seat gently laying her, on her front legs on the pavement. Someone opened the door and he picked his dog back up placing it inside and holding her.

Everyone watched and yet did not watch. The room was silent, the dog was silent, the man was motionless, his face was expressionless yet it was clear what was to come. The dog was in bad shape. No one said a word, not any of the dogs, or the office staff. We all sat there praying he was called back first, praying our dog wouldn’t ever be in that spot and yet knowing surely they all would, one day.

He was called back, and just as gently lifted his dog up and went into the room. You could have heard a pin drop. When he left, the door slowly opened. I caught a glimpse of his beloved pet lying on the soft blanket the vet had laying on a cushion to help make the floor softer. How thoughtful for the last bed the doggie would lay on. I couldn’t bear to give the doggie but a glance because I wanted to think in my mind of that gorgeous dog, jumping, barking, licking kids’ faces and such, as dogs are meant to do. 

The man’s eyes caught mine, just for a split second, and then we both looked away from each other. He had been crying. He quickly wiped away a tear. And walked out of there ever so quickly, back to his car and then just sat there. I know a piece of his heart was breaking just as Maria was at the loss of her husband. 

The cycle of life is hard to comprehend at times but teaches all of us about the mysteries of faith. Why it is important to savor the times we have with loved ones and not take them for granted. He started up his car and pulled away. He will start a new chapter.  Maria said to me she is redoing parts of her house as she must rebuild her life, alone. We are given another day to live. Until we aren’t, embrace your life and those you love, fully and completely. 

Old Age Has Sprung

She put on her apron and surveyed the area from her spot up on the hill by an old oak tree. It was spring and the church was having their annual family fun day, complete with an afternoon of games for the kids and a picnic dinner. The event, Spring has Sprung, was always held when the flowers were in full bloom.

Suzie was thrilled her mom had remembered to bring her easel and canvas so she could paint this year. She was too old to want to play with the younger children, being close to graduating now. She marveled at the gamut of colors on the hillside, so many shades of blues, yellows, reds and pales pinks as far as the eye could see. She could not even imagine how, with her limited colors of paints she could begin to capture all the colors before her on that blank canvas. But she knew she would have fun trying. And with that, she picked up her brush and began dabbling.

Suzie set to work, working diligently, with no comprehension whatsoever of the time she spent working on the painting. When she was immersed in painting, time stood still. This was a special place for her. She brought blots of color to life on that blank canvas with her skillful deft movements of the artist brush, just a flick here and there with her wrist and presto, form took place and the fleck of paint became life like. She slowly but surely caught the beauty of her surrounding that day in a way she was never able to capture before on any other spring day she had attempted. Perhaps, at some level, maybe she knew she would never return here. After this year, when she went away to college, she would never again return, as going to college would be followed with career days, then marriage and children and then the days of church festivals here in her hometown would be long gone and forgotten.

Suzie decided this time she would do more than sign her painting, she would name it, aptly name it the after annual event. She bent down and picked up her pen she used for calligraphy and started writing on the base of the image when she felt, rather than saw her younger sister’s presence behind her. Without turning she said, “Sissy, come out from behind that tree, I know you are there. You can look at my picture. It is almost done now anyways. Tell me what you think.”

Sissy came out, quickly actually and for once was not interested in the least in the picture. She talked quickly in a flurry of activity and Suzie had a hard time following her quick flow of chatter. She launched into a recounting of what she had overhead her momma and her aunt talking about over tea by the kitchen where the women were preparing the meal. She said it was about Grandma Tressa. They had not seen Grandma in ages and did not know why. Every time they asked what had happened they were told it was best to not bring it up around daddy as it upset him and that it was best to forget Grandma Tressa. But neither sister understood it because when they asked momma if she had died they were told no. What on earth had happened to her that was so horrible no one could talk about it or see her?

Finally Sissy blurted out the final comment she heard, “Grandma Tressa is in a home Suzie. They said her memory is totally gone now and she remembers nothing at all. It is best that she be left that way alone and be undisturbed.” They both looked at each other and hugged holding back their tears. Somehow the thought of their grandmother being alone, with or without her memory was too hard to bear. They told each other, in hushed tones, no matter what happened to either of them, if their memories ever failed them, they would never abandon each other like that, no matter what. For who knows for sure that one’s mind is ever truly gone. What if momma was wrong and grandma did remember some things and wondered why no one came to see her anymore?

Off Sissy ran to go chase some boy she was fond off and Suzzy when back to finishing the title of her painting. She stood back and looked at her final finished piece with admiration. All of the sudden, she felt someone shaking her shoulder. Gently at first, then more rigorously. Then she heard a slight muffled sound saying her name which steadily grew louder saying repeatedly Ms. Suzie. She yelled “Quit shaking me, you are going to knock me over and bump my painting’ but the voice paid her no attention. Finally she realized her eyes were glued shut and she opened them. As she did, she realized someone was peering down over her and she was lying flat down, on a bed. The woman over top of her had a nurse’s outfit on and the place smelled like a hospital, no actually more like an old folk’s home.

Now the voice, the nurse was saying’s. Suzie, you are getting harder and harder to wake up sweetie. I am sorry if I frighten you but I need you to take your medicine now. You always seem to forget to take it.” Suzie held out her hand instinctively for the pills to be placed in her palm. As she did so, she gazed down at the pills. Funny, she could not help but notice, for some reason, the gamut of colors the pills were, shades of pales colors, similar to the colors one would use to paint walls in a new home or to use to paint colors in a picture of pale sea shells. What a nice thought that was to her.

The nurse fluffed her pillow and told Suzie what day of the week it was and then asked her if she needed anything to drink. She half responded and muttered something back. As she went to lay back on her pillow, she saw a picture straight ahead from her. She asked the nurse “Where did that picture come from?” The nurse simply said “Someone mailed that to you and asked us to put it up directly across from your bed and so we hung it there while you were sleeping. Do you like it?” Suzzy said not a word as she stared at the picture. She simply leaned back on her pillow and let a tear slip out of her right eye.

The nurse closed the door quietly and Suzie stared at that picture with her fuzzy memory. She could barely read that inscription on the base of the image, Spring Has Sprung and she closed her eyes. She recalled bits and pieces of that day with joy. She saw the color, and could not help but smile at the thought of it. She thought she even felt that presence again, at one point, of her sister near her, just like in the old days. When she opened her eyes, realizing it was just a dream and time had slipped away, she was over come with a sense of sadness. She knew the memory would pass and one day, the memory of what the picture stood for might be gone. Who could help her remember when no one was there anymore in her life that knew about the festivals?

She decided it is best to put her mind on other thoughts when she again felt that prescence in the room again. Now she noticed, out of the corner of her eye, someone in the room. The stranger moved closer to her. It was a woman bearing an uncanny resemblance to her, but a few years younger and in much better health. She was smiling down at her and just sat on the bed with no hesitation and said simply said “I could never stay away from your beautiful paintings for long Suzy, remember?”