BooWho

Things I want to keep in mind.

Category: Dementia

For both of us

Recently, I have been missing my mom – which is unusual because we had never been very close.  I’ve been thinking about the way she used to be — about 10 years ago when she was still delivering the mail and stopping by on a whim.   She would call fairly frequently just to fill me in on gossip or ask something about the kids.   In those days, she was a gadabout.  If she got bored, she would jump in her car and drive to some unknown point in the valley or to a neighboring town.

Every Sunday, she played the organ at the country church.  For a time, she would regularly come to our house for dinner after the service.    We had a small family discord and she stopped coming over and rarely called.  As time and her dementia progressed, we lost contact until the memory loss became a safety issue.  By then, when it was time to step in and arrange for her care, she no longer remembered the discord but the disengagement of recent years only made matters worse.  I feel deprived of the last few reasonably normal years of her life before the dementia changed her into a stranger.

As I said, we were never very close but the dementia has forced into grim reality the realization that we have lost any possible opportunity to be close. Looking back into my childhood, I wished for a mother who would talk to me, tell me things, hug me and tell me she wasn’t angry with me.  That just wasn’t meant to be and, now, it truly never will be.  Having to let go of that hope and wish is hard.   It makes me sad for both of us.

Mom remains in a memory care facility.  She has lost a lot of weight and she no longer recognizes anyone.  Her biggest pleasure is when my sister brings her cinnabons or something from McDonalds.  She still walks loops around the hall with her walker and she hasn’t fallen for a couple of months (knock on wood).  It isn’t easy going to visit her – in fact, it is very difficult.  Her face is sallow and her eyes are vacant.  She rarely makes eye contact and only grunts as a response to most questions or she repeats the question.  Somewhere in that shell is a woman who had 4 children, cooked on a wood stove, chopped wood, taught children how to read, delivered mail, played the organ and acted as eucharistic minister in her church.  She was also a woman who wanted to go to college but couldn’t because of financial constraints, a woman who loved her family but always wanted something more – a woman whose true dreams and desires will never be known.

I miss having her around and I wish that things could have been different – for both of us.

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Melting

My mother is melting.  Each and every day.  She has lost so much weight and sleeps most of the time.  My sister and I report to each other how she is on each of our visits.  We feel a glimmer of hope whenever she speaks – even if she is only repeating what we have said to her.  She does not recognize anyone anymore.  It is rare to see her smile.  Like a pile of snow in the parking lot – she is slowly melting, getting smaller and smaller – and the runoff is slowly finding its way to the river.

This disease has given us the opportunity to prepare ourselves for the inevitable.  We have been grieving for our mother for the last few years – as her view of us narrowed, our view of her expanded.  I’ve realized all of the questions that will never be answered.  I should have asked them earlier.  To be honest, I couldn’t.  The answer is there, isn’t it?  For some things, there are no answers or the answer is with the inquirer.

We prepare for the last few miles of the journey.  My mother is strong.  She always has been.  As a young woman, she moved to a foreign land (may as well have been) – far from family and friends.  She learned to cook on a wood stove and lived in squalor with her three children (eventually four).  She believed in her fairytale – someday, the prince would find and claim his kingdom and they would live happily ever after.  She cooked, cleaned, sewed, taught, sang, drove, washed, dried, mowed, raked, canned, gardened, laughed and cried throughout her very long and full life.   There are so many other things that we don’t know about her.

In her last leg of the relay, she sits in a chair with her face in her hands.  Or she lays sideways in her bed and sleeps.  We have no way of knowing if she is “thinking” or dreaming while she reclines.  What does she see and understand about where she is now?  Is she like a captive in her body, just unable to communicate?  Is she gone except for the daily routines and body functions of living?  Those are the exasperating questions for which there are no answers.  Her body just keeps going from day to day.  We stand by and watch as she melts, helpless to do anything about it.

Writing

Ahhhhh, early morning.  It is dark outside and so bright and clear inside.

When I was a young girl, I can remember rare mornings when I would awaken early.  I would tiptoe into the kitchen to find my mother sitting at the table, smoking a cigarette and writing a letter.  Of course, she would send me back to bed and I thought it was for my benefit – so that I would get more rest but, no.  I was interrupting her reverie.

Mom was a quiet woman.  She did not speak loudly or with exuberance.  If she was angry she could certainly yell but, as a general rule, she was soft spoken.  I would guess that her letters were very loud at times.

She wrote to her parents and her sister, Dorothy, almost daily.  In return, she received letters as well.  Since mom has dementia, I can no longer ask about those bygone days, I have no way of knowing what she wrote about.  I suspect she told her sister everything – Dorothy was her one main outlet for expressing her frustration, her dreams, her disappointments.  But there is no way for me to know – their letters to each other were like a private garden meant only for the two of them.

As mom’s illness progressed, she tried to continue writing.  She would write all the things that she wanted to remember but knew that she couldn’t.  A journal was on her table, each page with scribbled notes: names of people she heard something about, places she heard about on television, some other note that lost importance hours later.  By the time we moved her into the memory care facility a year and a half ago, she could no longer sign her name.  Writing was a lost pursuit.

When visiting my mother, you will either find her lying in her bed or sitting in her chair, with her head in her hands – staring at the floor.  Her eyes are vacant and there is no recognition.  My sister and I have speculated that my mother probably does remember us but as children or at a younger age.  When we say our names, she tries to make the connection but we are strangers to her, far too old to be her children.   If one of her grandchildren come to see her, she expects to see them as little ones and to see them as adults just doesn’t make sense.  Of course, there is no way for us to ever know for sure.  She can’t tell us what she is thinking, feeling, hearing or seeing…she can’t write it either.

A prompt from Carla — Before

In June of 2015, we placed my mother in a memory care facility.

Before that, she was living in her own home.  My sisters and I took turns bringing her meals and checking on her.  She slept a lot and watched TV when she could figure out how to turn it on.  We would arrive to find her in a mess of one kind or another – half naked or with excrement on her, the couch, the floor.  The dog would eat her food and there would be a trail of wrappers and containers strewn about.  She remembered who we were, most of the time.  She didn’t offer much in the way of conversation other than answering questions.  Unable to dial the phone and sometimes, unable to remember how to answer it, she was cut off from everyone and everything.  Because she was unable to drive any longer, she spent long hours in her house looking out the window, thinking about how she needed to go somewhere.  In the end, she thought she needed to go “home” even though she was already home, and she started going out of the house, half-dressed and in disarray.  We knew the time had come to get her in a safe place.

Before that, she was retired and at home taking care of herself.  She had moments of forgetfulness and confusion but we didn’t realize it.  Our family had suffered a break and we were estranged from each other.  Her visits with us were strained and less frequent.  She worked at her church and drove herself to town to run errands.  She spent a lot of time with our younger sister.   We knew that she was having trouble with her memory and we were concerned about her ability to drive but because of the discord, we were unable to address those issues with her.  Our first try with offers of assistance were met with defensiveness and more dissonance.  She believed she was doing fine on her own.

Before that, she was working at the post office.  She had a small mail route in a small country town.  Despite her difficulty with her knees, she worked any time she was needed and enjoyed feeling useful.  Very devoted to her church, she taught catechism classes and played the organ every Sunday.  She was also a eucharistic minister and took communion to the elderly and shut-ins.   My mother was a “gallivanter”, if she was bored, she would jump in her car and go visit one of her children or grandchildren or her good friend, Evalyn (or all of the above).  Losing the ability to drive in her later years was devastating for her.  Her vehicle was her mode of escape.   She would also call to check in with us once or twice a week and if there was a function at the school, she would stop in to see if it was something that might be of interest.  She attended any function in which her grandchildren participated.  She was a widow but she still had her family, friends and church.

Before that, she was living with my dad.  She worked at the post office part-time and devoted a lot of time and energy to her church.  In regular contact with her children and grandchildren, she made every effort to attend any activity they were involved in and always brought a treat of some kind.  At this point in their lives, my parents’ relationship was difficult, at best.  They were at odds with each other over many things.  They rarely rode together in the same car to any of the family functions.  My mom had a habit of leaving without saying goodbye – suddenly you would notice that she was no longer there.  I think she often felt overshadowed by my dad and unappreciated for her efforts.  She loved spending time with her grandchildren especially when she could have them to herself.

Before that, she was working as a home health care worker, taking care of the elderly who needed assistance with cleaning and errands.  She had several clients and she was very devoted to each of them.  My mother was always a very hard worker.  Her church and her grandchildren took up most of her time.  She traveled to Texas once or twice a year to visit her family.  She also did a little traveling as part of her training for the eucharistic ministry.  I don’t know much more about this time period of her life because I was busy with my own.

Before that, I am not certain of the details of her life.  I have only snippets of memories of interactions with her.  Mom was not one to express her feelings or desires.  I have had a lot of time to think about her, about this illness and about losing her.  I’ve thought about having to help write her obituary and feeling totally inadequate to do so.  I will have to seek assistance from others if I am to do her justice in that endeavor.

When a parent has dementia, there are so many layers of loss.  You lose that person that you have relied on all of your life.  The one MAINSTAY we all have, our mother.  You also lose the opportunity to repair or rebuild a broken relationship – or to create one where there wasn’t one before.  You have to give up on that dream.  And far worse, you see this person slowly disappear and you still remember who and what they were…before that.

Early morning musing

I have been waking up really early in the morning and not being able to return to restful sleep. This morning, it was 4:45. (It has been as early as 3am!) I normally wait until at least 5 am to actually get up. Once I wake up, my mind turns on and it is useless trying to go back to sleep. This morning, my thoughts went to my mother and this blog so I may as well put those thoughts to paper.

My mother has declined to the point of not speaking – or at least not much. In recent months, she has been repeating back whatever she hears – although not always. If you ask her how she is – she will say, “I’m good”. It takes her a minute to respond but she will respond. She doesn’t recognize anyone though – not really. And now, even if I tell her who I am, there is no recognition of the name or my status as her daughter.

It has been difficult to visit her at the memory care facility, with a one-sided conversation and no feedback or reaction. She lies in her bed most of the day unless she is hungry, then she will wander down the hall to the kitchen area. Some days, she will be sitting in her chair just staring or dozing. She has lost a lot of weight and is getting pretty thin. If she were her old self, she would be thrilled. She struggled with her weight all of her life.

I try to remember the last time we were able to have a real conversation. I can’t pull up a specific time or date – she used to call a couple times a week just to check in. She would share some gossip she had heard or talk about something at her church. Even on our best days, we didn’t have a lot to talk about. Naturally, I now wish we had been able to talk more.

When she had her knee replacement, we took turns staying with her. We had to make sure she ate, took her meds and that she did her exercises. I think that period of time was the most we had ever talked. We were trapped in her house and neither of us could leave. And she was “medicated” so she was a little more talkative. Our conversations were about family – about my kids, my siblings, my dad. She wasn’t one to open herself up. I think she believed that as my mother, she couldn’t show any signs of weakness or need. That was how she lived her life – just powering through, on her own, no matter how she felt or what she wanted for herself. There was a lot of stored up resentment and that’s what most of us felt from her. As children, we learned to avoid anything that would remotely cause a conflict. Consequently, a lot of the time, that meant avoiding her altogether.

What that means for me now is that I have a hard time visiting her. It isn’t just that she doesn’t know me or talk to me, it is the years of not being able to talk to her prior to this odd dementia. Trying to establish a relationship with a stranger behind a wall of my own making. Heartbreaking.

I know that there will come a day when she passes. Will it be soon? No way of predicting. I also know that she loved all of us in her way, the best way she could. She took care of us and she would have done anything for us. The times she couldn’t give us what we needed were because those were the same times she couldn’t get what she needed. I understand.

Mother’s Day

I almost walked past her. She was sitting on the couch in the common room with her back to the door. The more this disease advances, the less she looks like my mother. Her face no longer shows emotion, no recognition, no smile, no anger; just an expression of bewilderment.

Her hair is longer than it has ever been and it is curly. Depending on the day and who is working at the home, it can either be braided or it can look wild and disheveled. On this day, someone has taken the time to put a french plait in the front and the back lies quietly at her shoulders. It looks very pretty and very normal.

I say hello and tell her who I am. She repeats, word for word, what I say. I ask her how she is doing today and she responds with her usual, “Good”. I tell her that tomorrow is Mother’s Day and that I have brought her a card. She has no reaction. I open the card and hand it to her – she looks at it, opens it slowly but does not read it. I didn’t expect her to. I tell her I am going to put the card in her room and that I will be right back. I walk down the hall to her room, sign her white board, do a sweep of the room, flush the toilet and put the card on her table. As I am returning to the common room, she is up and moving, heading to her room. As we walk slowly down the hall, I tell her my news; the same news I’ve told her on my last two visits. She looks at me as if I have two heads.

Once she is settled in her room, I tell her again that tomorrow is Mother’s day. I thank her for all she has done for me and tell her that I love her. My original plan had been to thank her for specific things – for sewing beautiful dresses, for sending me to college, for making sure I had braces and straight teeth, for teaching me to be kind, for being such a loving grandmother to my kids…but looking at her expressionless face just knocked the wind out of me. We say goodbye and I walk to my car. The emptiness is brutal.

I drive away feeling grateful that I am a mother too and that this is not my only view of this holiday. I am thankful for my children, for their strength, character and kindness. They are generous, caring people. They are creating lives that mean something. I am so proud of them.

While it is difficult to see my mom in this condition, it reminds me that I need to live as best I can, while I can. I still have a lot to accomplish, to learn and to give.

One memory…

If you could keep one memory, what would it be?

I don’t think I could choose…

  • I have four kids – each of their births is a remarkable memory. It was the first time I got to see their lovely faces.
  • My children are a joy to me, they have full lives. They are accomplishing so many things and I couldn’t choose just one proud moment. As I look back, they are all proud moments.
  • The day I met my husband is a great memory, those blue eyes and that strong chin – smiling back at me with a knowing expression. Love at first sight is not a myth.
  • Witnessing the birth of my grandson, Jack. Phenomenal.
  • My wedding on a hot day in July, surrounded by family and friends – feeling such joy.
  • Every day with a grandchild is a glut of precious memories. The funny things they say, their smiles, laughs and tears. You wish you could just hold onto them forever.

There are so many memories that I could never choose one. And in surveying all of the possible memories, I am reminded of my mother who can no longer grasp all of the precious memories she once stored.

She doesn’t remember meeting my dad. Or the births of her children. She doesn’t remember her friends or family. There may be fleeting moments where names come to mind or a brief glimpse of a place or a face flash through. She has photos on her wall of those she loves. She KNOWS they are “hers” but, often, she doesn’t recall a name or what the relationship is – just that they are there as a reminder of where she belongs. It is heart wrenching for us because we know what she’s lost, what we’ve lost. She has no idea.

If there is one memory of her that I would like to hold onto, it is when she was in her early sixties. We were at her house, sitting at the kitchen table. We were playing a game of some kind and something made her start laughing. She laughed so hard that she cried and could hardly breath. The rest of us joined her in her laughter, how could you not? It was a rare occurrence when she would let herself show that much pleasure and joy.

I worry a lot about dementia. It is my desire to hold on to all of my memories as best I can. In the end, it is a crapshoot as to whether I will develop memory loss. For now, I will cherish every moment I am given.

Retirement AND dementia?????

As the sun slowly beams light over each peak and ravine, I realize how lucky I am. I feel the warmth of each shaft as it feeds my soul. The sky is clear and blue and wide open. All is quiet. Even the cows are watching the sunrise with reverence.

One of the best aspects of retirement is having TIME. In the morning, I sit at my computer and watch my neighbors drive by on their way to work. I am in my pajamas drinking my third cup of coffee, so grateful… There are days when there are no plans or projects and it feels a little decadent – not having any specific commitment to DO anything. I avoid ever using the “B” word (bored) because there is ALWAYS SOMETHING to do. Walking, writing, cleaning, painting projects, house maintenance of one kind or another.

Recently, I have found that my biggest challenge is maintaining contact with the outside world. I like having this time to myself, I like being alone. I prefer my own company. I don’t know if it is a phase or if it is “normal” – after all what’s normal? I’ve always lived inside my own head but when you work 40 hours a week, or when you have a family, you are forced to engage. I have found that all of the quiet time makes it difficult for me to communicate when I am with someone.

The problem is two fold: first, I don’t have a lot to talk about given that I am not doing much and, second, I have a hard time finding the words to express myself. This causes great angst as my greatest fear is developing dementia. I constantly worry that it is looming overhead – stealing my memory and thoughts and ability to speak. When I write, I can take my time and have a thesaurus available to find the words that sit at the edge of my grasp. I still feel anxious that I can’t think of them on my own but it isn’t as burdensome as when I am trying to have an intelligent conversation and I pause for five seconds trying to unearth a word or phrase while my audience offers suggestions and sympathy. Its horrifying to me.

Naturally, my thoughts turn to my mother. I suspect she felt the same fears when she started to notice the loss of clear thought streams. She started keeping a journal next to her so that she could write thoughts, ideas and news down, in the hopes of not LOSING them. She was in her 70’s when I noticed this difficulty in her speech. I am only 57! Did she notice it sooner? Was she in her 50’s when it began? I can’t ask her.

Most of my peers tell me that they have difficulty with their memories also. Perhaps we are all experiencing the same fears and losses. Since I feel such anxiety, do I AVOID contact in order to avoid having to speak? I wonder…

A dear friend and cousin sent me a book, “100 Simple Things You Can Do To Prevent Alzheimer’s and Age-Related Memory Loss” by Jean Carper. I shall read it faithfully!

If nothing else, feeling the fear and knowing that dementia is a possibility is proof positive that NOW is the time to write, live and enjoy all the things I can see, hear and feel. Time to hold on to the things I love and let go of the things I don’t.

Not throwing in the towel yet

Have you ever been deep in thought and suddenly wondered how you arrived at this topic? In your mind, you backtrack through your train of thought, until you reach the originating notion. This is also how you find your way to the offending thought, whenever you find yourself in a depression sequence.

In recent days, I’ve been thinking about dementia, aging, even dying. What brought this on – why would I ruminate over something so sad and unavoidable? (The aging part, at least, is unavoidable. Oh, and the dying.) I’ve realized that I have a tendency towards displacement or is it internalizing? For example, I visit my mother and I see how much she is declining and I begin to think that I am declining as well. I notice that I am having more and more difficulty expressing myself, finding the phrase or word that I want to say. Inside my head, I begin to panic. I see my mother’s face and hear her voice from two or three years ago and think, “Oh no! It’s happening to me too!”

When I find a clear and quiet place, I can sort through the reality. I am not my mother and my trajectory of decline is not in her jet stream. I don’t have dementia – I have normal memory function for someone my age. I don’t have to like it but there it is (and that scenario is much better than the alternative!)

I’ve also realized that part of the reason that I have difficulty talking is that I don’t talk very much. I am alone a lot and most of my communication is in my own head. When I am with friends or family, I realize that I don’t have much to talk about – since I retired, I don’t have the usual “things at work” to discuss. I tend to listen more, I always have. Best way to combat that is to read, write and talk more. Try to learn something new. Expand the thinking process and expound on it. More importantly, stop ruminating about the bleak possibilities.

We do not fear the unknown. We fear what we think we know about the unknown.    Teal Swan

Winning

Dementia really scares me. Is it hereditary? What are the chances that I will get dementia? Some days, I worry that it has already begun.

I have always had a great memory. Small details were my forte – dates, times, places. In my 20’s and 30’s, I never needed to write anything down. Appointments for me or my kids, I wouldn’t even need to put on the calendar, I could JUST remember! Now – if I don’t write it down, it is gone. I have to write down passwords, appointments, phone numbers. Of course, having a smart phone doesn’t help. It remembers everything that I used to remember all on my own! (Thank goodness!)

I have never been very good at remembering names, but now? I’m horrible – even the names of people I SHOULD know (second cousins)! Is this a sign of things to come? There are also times when I have trouble finding the right word. It isn’t a matter of needing a thesaurus – it is a matter of being mid-sentence and losing a SIMPLE word to describe what I’m trying to say! I forget parts of conversations. I forget doing things. Is this the beginnings of dementia or just your standard aging? I don’t know but I am afraid, very afraid.

What can be done about it? I can work harder at remembering – or can I? Some things I can – if I make the effort, I can remember phone numbers and dates. I just have to say it out loud a few times. I can work on focusing a little more. (I’m sure my mom thought the same thing in her early days of dementia…)

IF it is inevitable, then I really need to start enjoying myself now, don’t I?

If I get dementia, dear friends and family, please don’t despair. I knew it was possible – I had an inkling that it was coming. I hereby give you permission to put me in a memory care facility when the time comes. Put me in “undergarments” (better known as adult diapers) if I need them. I pray that in my final days I will still have my laughter and a good sense of humor. If my personality changes and I get mean – don’t put up with it. I don’t want that to be your last memory of me. You have my permission to NOT come to visit if it is too hard. Short visits are perfectly fine – I won’t remember if you’ve been there 5 minutes or 20. Eventually, I won’t remember if you have been there at all.

Wow. Just the thought of it is very sad, isn’t it? Horrifying, more like, for me anyway.

To quote Andy Dufresne in Shawshank Redemption, “Get busy livin’ or get busy dyin’.” I think we all face that fogbank at one time or another. The one that makes us realize things aren’t going to go on forever. We are mortal. We begin a review of our lives, kind of like reviewing for a final exam. We realize the important things we don’t know and all the useless things we do know. If we are wise, we begin to let go of that string – the one that can tangle up our feet and cause us to trip. We stop looking for that big lotto win, the perfect goal, the glory road. We will look to the smaller victories, silly things like a good day with a grandchild, a nice conversation with your child, an old friend or a sibling. The good days of warmth and comfort. The winning is in the day to day living.