As I continue to live with my Mother and experience her advancing dementia, I have to be cognoscente to do my part to stay abreast of how best to manage communications with her in each stage of her condition. Much of it takes great patience and I am at times short of it by the end of the day.

I find it seems easier for the people around me to adjust to communicating with my mother through her new reality as they don’t have the history in their minds and hearts they are trying to preserve when talking with mom. I know that is where my practice needs to come in, and many times I am good at it, but just as often I am not.

Most pointedly is the circumstance surrounding the fact that my Dad died. It is the one area where I have tried to keep my mother focused on reality, that he is dead and not coming back.  It makes me uncomfortable to trick her into thinking he will be home after work or that he is on vacation.  But all of my efforts to remind her of his passing usually  prove futile, as she asks me each night where he is and when I suggest she just think about it for a minute, she will more often than not believe she just saw him earlier in the day. She cannot keep it in her mind that he died.

So I decided I would again try and live in her reality of believing Dad is still alive and told myself I would give her a plausible explanation of his absence on her next inquiry.  I came up with the story that he was on a scuba diving trip down to Mexico, as it was his favorite pastime and one she would be happy to know he was enjoying.

I had the opportunity to practice my new story the very night of my renewed commitment. That same evening I had scheduled an HVAC salesman to stop by the house to give us an estimate on installing a new air conditioning unit. As I have shared in the past, these events can be daunting as my mother interrupts the appointments with outbursts of anger at us talking about doing things to “her” house without permission, or asking questions that are nonsensical and often just being rude and saying to the salesperson “You can leave now.”

I typically intercept the newest victim out front of the house before they enter and give them the rundown on Mom. I ask their indulgence to politely ignore her or give me a minute to redirect her so as to calm the situation down. However, on this night he got to the door before I had the opportunity and so we were at the dining table and into the presentation before I had a chance.

Right on cue Mom started with her typical protestations, comments and interruptions all in an attempt to stop what we were doing, as she was confused and upset for not understanding what was happening. I gently tried to redirect her to the fact that we were just having a conversation with this gentleman and that nothing was happening to the house tonight. Mom seemed to calm down and then said “Well my husband won’t like that he is here when he gets home. Where is Pat anyway?”

So here was my chance to give her the story that would make her feel good and keep us on the same page. I chimed in with my explanation, “Dad is in Baja on a scuba diving trip.  He won’t be back for a few weeks.”  And without missing a beat my Mother looked at me with surprise and said, “You mean he isn’t dead?”

Awkward. Now the salesman is looking at me with wide eyes and I start grasping around in my brain for a reasonable explanation as to why I just lied to my demented Mother about my father being alive! Finally, I just looked at her and said apologetically “Yes Mom you are right, he IS dead. I was thinking about another guy,” and she responded “I thought so.”

I turned back to look at the salesman and said I was sorry I would explain later. He smiled and told me not to worry that his grandmother has Alzheimer’s so he completely understands. I thought to myself that I am glad he did, because on that day I think he was the only one in the room who had it figured out!

Never in my life has the need to view the world around me from a different perspective been more apparent. It is asked of me through daily news, in my professional development and my family life. None however measure up to the challenge of an alternative perspective than through the eyes of my mother.  Her dementia requires you to suspend all that was in your reasonable mind and consider another possibility.

It sounds harmless, but by its very suggestion you can see how it could be fraught with disasters, if not closely monitored. But, keeping safety in mind, the stretch has been made possible on more than a few occasions.

As a result I have learned many lessons about life by living with my mother and witnessing her dementia. So I have compiled a list of those that gave me pause and a new perspective, and those that affirmed that my understanding was correct all along:

• Nothing bad happens if you stay in your pajamas all day long
• If you smile and wave at strangers across the room in a restaurant, they almost always will smile and wave back
• Cats definitely will not eat bananas placed in their bowls, regardless if they are peeled or not
• When you tell a story that makes no sense but punctuate it with laughter at the end, your listeners will laugh along with you
• Almost no one notices if you wear two different socks out in public
• If you always wore lipstick when you went out, you always will
• Even when a person’s social filters disappear, their kindness still remains
• Dogs will drink almost any liquid out of any receptacle including coffee mugs and hiball glasses
• Music is as important to our happiness as our memories
• One of the names you will remember until the end will be your Mothers
• Your children’s happiness never stops being important to you
• Dogs and cats are kinder and gentler with the elderly
• Sleep is as critical for the elderly as it is for newborns
• Watching the wind blowing through the trees is a beautiful way to spend an afternoon
• Cats rarely accept the offer to try and eat anything new
• Dogs will accept the offer to eat anything new almost 100% of the time
• Costco is “the biggest store I have ever seen!” every time you visit
• Dogs have wishes and communicate them to some people, even if others are not able to hear them
• When requested, a peanut butter and jelly sandwich is a perfectly good meal regardless of the time of day
• Saying “Who cares! No one is looking at me” will get you the ability to wear any ensemble you create with impunity
• Plain coke tastes just like rum and coke if you believe it
• Iced tea tastes like Water
• Water is boring
• Color in your life brings happiness
• Going for a walk everyday is critical to good health
• A meal without a proper place setting, including a napkin, makes it impossible to start eating
• Insects of any kind are to be rescued for release outside and never killed
• Losing your memory doesn’t make you stupid
• Even at the height of confusion, people still know when they are being treated with disregard
• Animals are capable of training any person of any age to do their bidding
• If someone forgets your name it does not mean their love for you is forgotten

Memories are a funny thing.  They can provide reference, build knowledge, make us sad and bring comfort. We can try to push some out of our minds and we can hang on to those memories we want to relive. They weave us into who we are or help us make a new person out of the old, if we are so inclined. Memories can help define us or change us; it’s mostly of our choosing.

Until my mother developed dementia, I never really thought about how important memories are in making a life.  I just took for granted they would always be there,  creating the fabric of my family and my world.  I always knew I would wrap myself in those shared memories with my loves ones and they would warm and comfort me throughout my life. One day bring me happily into old age, God willing.

I am sure my mom always believed the memories she created with her husband, her four children, family and friends would bring her that same comfort. She must have imagined evenings of laughter and reminiscence, secrets revealed and wisdom shared.  I know she would have imagined that for her life because I lived those memories with her, right up until the time she could not remember anymore. Right up until today, the day my mom finally forgot who I am, forever.

To be clear, I know it didn’t really come about in just one day. My Mom has been forgetting who I am intermittently for over a year now.  Most mornings she would know my name, but by evening time I would be a face she fondly related to or a stranger she wished would leave.  But for the most part,  I could count on a moments of each day where my mother knew me, said my name and loved me still.

But in recent weeks, her dementia has taken those precious bits out of each day. They were my favorite ones, where even if she were angry with me she knew to whom she was directing her anger. She still remembered who I was in her fabric of life, even if a bit frayed around the edges.

Today I had to finally accept that will happen no more. It has been many weeks of my mother no longer knowing my name, and rarely remembering I am her daughter. She is mostly pleasant still, is usually happy to see me and on some level knows I am family or important to her. But she has stopped using my name. She stopped even asking about me, or any of her children for that matter. Dementia has picked at the fabric of her life and continues to create the unravel.

And so today I cried.  Not so much for my loss, as I have been practicing losing my mother for many years now.  But I cried for my Mother, for her loss.  How cruel a disease to have taken from her that blanket of memories she had so carefully woven throughout her life.  The ones she planned to keep, the memories she grew fond of and kept with love, to surround her as she grew old. The memories that would give her joy, spark recollections of shared experiences, provide the framework of all she had accomplished, all those she had loved and the gift of knowing all that love returned. The familiar that she could wrap around her, that would bring her comfort in her old age.

Dementia continues to unravel her life, picking away stich by stich, memory by memory and I am powerless to stop the deconstruction. All I can do is try to wrap her in the familiar, in the memories I know she loved and brought her joy and hope in that she can find warmth and comfort, even if she may never again know my name.

I had an experience a few days ago that made me know  the universe continues to guide me through this life in sometimes mysterious ways. It brought home to me the confirmation that most things we do in our lives bring us to the next place in our journey, as it was intended.  Yes, I am the perfect example of one who likes to take detours along the way (I hear my family and friends announcing!) But mostly I am convinced, each step we take is intended to follow the path we created with the guidance of our higher power, when we choose to listen.

My detours have taken me to a place where I need to refocus my passion for how I make my living, still bring me the flexibility to care for my mom and have the lifestyle I want in my retirement years. So I have decided to invest in a business with a friend of mine. It is a placement agency for seniors who are transitioning into assisted living, memory care or board and care homes.

As a placement agency you help families and seniors through the tedious and emotional process of finding a new place that is a good fit and where the senior can  live out the remainder of their life in comfort and safety. It is a process I went through with my Mom, before I decided to keep her at my home, and have helped others journey through along the way. It is particularly difficult to navigate this process when the senior has dementia, as their input is almost non-existent. The family is very easily overwhelmed with stress, guilt and worry they may not be doing the right thing for their loved one.  Because of my experiences with my mother, I really believe it is an area where I can relate, have  compassionate and be of tremendous help.

So with this plan in the works my reminder came at the most unlikely of places, although not foreign to me, and that is on the back patio of a local restaurant/bar. I was there with about 40 others enjoying food and “refreshments” after a charity bowling tournament where we raised money for the Humane Society and for Elderhelp of San Diego, who in partnership with PAWS, has a program that assists seniors who need help at home caring for their animals.

As the establishment was small, we took over most of the back patio with our group. However, there was a group of six millennials, who were not part of our festivities, sitting off to the side, deep in conversation. I noticed one of the women in their party had a beautiful black lab mix puppy on her lap.  So being the dog lover I am, I walked over to ask could I pet her dog.

Their small group was very welcoming and the puppy turned out to be a Baja rescue, which drove our conversation to me also  having a Baja rescue dog. One woman in the group asked why we were such a big group gathered there, and so I told her about the charity that we bowled for was to benefit seniors who needed help to care for their animals.

I pointed out that many seniors will refuse to move from home to seek better care for themselves for fear their animals will need to be left behind. I then mentioned in passing that my mother now lives with me because she has dementia, but that when I researched care homes for her, accepting her dog Timmy was mandatory.

Suddenly the woman who had inquired about our gathering looked at me in a bit of disbelief and pointing towards her friends and said “That is why they all came with me here today.  I needed emotional support as I just literally left my Dad, who has dementia, at his new care facility not two hours ago and I am having a really hard time with it. When I left him he looked upset that I was leaving him there, even though I assured him I would be back.”

This revelation took the conversation into a whole new direction with her peppering me with questions about my mom, her dementia, our journey and ultimately into the womans guilt, fears and sadness about having to leave her Dad at the facility.  Throughout the 30 minute conversation she repeatedly asked if I thought she had done the right thing by him.

I was taken aback at how young this woman was and my heart ached for her having to face such a challenge at an age where her biggest concern should have been her newest career move or ruminations of romance and travel. Clearly it was a burden she was shouldering without a partner/husband or brothers and sisters to share the load. Gratefully she had a group of friends to share her concerns, but ultimately she was on her own.

Finally I looked her in the eyes and said, “It seems clear from our conversation that you and your Father are very close, is that right?” Tears started to well in her eyes and she replied, “Yes, we are very close.” I continued, “Then I want you to think about having a conversation with your Father before he had dementia.  I want you to think about what he would want for you at this time in your young life. What would he say to you about the decision you had to make today?”

The young woman started to cry in earnest and she answered, “He would have said I really screwed this one up kid but I don’t want you to worry about it.  I am safe and you are doing a really good job of taking care of me under the circumstances and I don’t want you to worry . Go live your life.”  I looked back at her with misty eyes and said, “Then you need to listen to your Dad and know he is going to be just fine and you are doing a good job.”

She stood up still crying and put her arms wide and asked, “I feel like I need to give you a hug is that OK?” I walked around the table and we embraced for a long moment and she whispered in my ear, “I feel like I was supposed to be here today to meet and talk with you.  Thank you.”  I pulled back and look at her and said, “I think we both were in just the right place today so thank you.  Now we both know we will be OK.”

And with that I said my goodbyes and left grateful for the gift this woman gave me of renewed confidence and a sense of being in the right place on the next leg of my journey.

 

My poor Mother had the unfortunate event of catching a cold. She woke up yesterday much more confused, barely shuffling her feet along and with a slight fever.  Because of her age and inability to properly communicate her maladies, I took the day off work and our daytime caregiver and I took mom to the doctors for blood work, xrays , etc.  I thought no harm in being proactive as this type of congestion can turn into pneumonia very quickly.

Mom was her typical uncooperative self every step of the way. The day was peppered with her constant insistence of nothing being wrong with her, to claims that I was lying  or trying to trick her when I said we were just going to the doctor to check out her cold. Needless to say the day couldn’t be over fast enough for me and I capped it with more than a little bit of wine!

So this morning I was slow to get up and face the day without a caregiver, knowing mom would be ours to manage with her illness. Gratefully Kathy got mom settled with her newspaper and morning coffee. When I finally wandered into the living room to start the day mom looked up from her chair with an expression of horror. She said to me, in a voice reminiscent of Morgan Freeman, “Something happened to my head! Listen to me!” and proceeded to demonstrate how she did indeed sound like an old man talking in a very low voice.

I have no earthly idea why this stuck me as hysterically funny. Maybe it was the frustrations of the previous day needing a release. But as she was looking to me for an explanation for this horrible new voice she was unable to change, I burst out in laughter. I laughed so hard I started to cry and had to sit down on the footstool at the end of her chair to try and contain myself.

As I was bent over in laughter I could hear Kathy teasing me in the background “You are going to hell Monica Flynn”, but for what seemed too long for good manners, I could not contain myself.  When I was finally able to look at mom she gratefully was smiling and said with good humor, “Well I am glad you are laughing.” I apologized to her as I regained my compose and pointed out to mom that she just had a very bad cold.

Mom’s response was that she was not cold and insisted “Something is wrong in my mouth!” Well, that threw me into another fit of hysterics with Kathy shaking her head at me and patiently reassuring mom she would have her other voice back in a few days. Mom seemed to take it in that this was going to be her new voice for awhile and exclaimed, “No one is going to want to talk to me!” Then, anticipating having to explain her man voice, she said to no one in particular, “Yes, my name IS Marion I’m sorry to tell you.”

And I started in with the laughter all over again, and thankfully this time Mom joined me!

I try my best to include my mom in basic household chores when she asks if she can help.  Folding laundry is a particularly good activity as it has some problem solving properties (how to fold) and it is very good for her manual dexterity.  The bonus is mom actually enjoys it!

So having performed that task the previous day, I maybe should not have been surprised to find a small folded item on her bedside table when I peeked in to check on mom this morning.  Upon closer examination I realized it was a Readers Digest Magazine very neatly wrapped in a pair of underwear.

When during the night she created this gift I will never know, as we have become accustom to middle of the night undertakings. They include bedside lamps on their side neatly placed on the floor, collecting and stacking all the books and magazines in the room onto the dresser, and one late night endeavor of lining up all the pillows end to end, stretching from one side of the room to the other.

As I opened this small package, she so carefully wrapped, I could not help but notice  an article headline on the bottom of the magazine that read Successful People Start Their Day with…..

I set this edition aside thinking I might read it later to see what tips it gives for starting your day with promise. I am confident however it does not include unwrapping a Readers Digest Magazine from your mothers underwear as an essential habit. But maybe it will give new meaning to the phrase “Good things come in small packages!”

 

As 2016 draws to a close and the Holidays are in full swing, I am reminded of the meaning of the word Grateful. It’s synonymous with thankful, glad, appreciative, blah,blah, blah; you get the picture. It is a mantra I practice, telling myself to be grateful, not just during the holidays but everyday, as I believe I have so much more to be grateful for than many in the world.

But this holiday season gratefulness fell on it’s face on more than a few occasions and it made me wonder if we don’t put a little too much pressure on each other during this time of year to be constantly joyful.

I am not sure when the thought first struck me. It may have been when I left a family gathering of aunts, uncles and cousins, with the experience of my Mother being the only person in the room who kept asking all her relatives to reintroduce themselves at every conversation.

Or perhaps it was when Mom and I were at lunch and she asked the server for a beer. She rarely asks for or drinks beer, doesn’t really like it, but insist on ordering it she did!  As we waited for the beer to be served she asked the waitress no less than five times what happened to her drink. Each time I asked mom to be patient, that her beer was on its way, her response was loudly declaring that the drink in front of her (water) was not what she ordered, then announcing, “This thing doesn’t taste like anything!”

But of course it could just have easily struck me as I found myself in the backyard picking up dog poops only to look up to find my mother (who I believed to be in the house) marching around in the grass barely missing stepping on piles that had not yet made it onto my shovel.

 I launched myself at her, grabbing mom’s elbow and trying to steer her to safety, when mom yelled, “Let me go!” As I propelled her along I tried to gently explain to her that she almost stepped in a dog poop with her new shoes. Mom replied with the expected “Who cares I always step in dog poop!” I answered, “Well I care because I am the one who has to clean it off your shoe.”  She responded, “You won’t know because I won’t show you, I will just walk around with it on the bottom of my foot!” as she angrily stormed (well shuffled really) through the backdoor.

As I sulked around the backyard finishing my chore I ruminated about the expectation of constant joyfulness over the holidays and found myself moving into humbug thoughts of envy. Envious of not having unlimited money, so I could take off for parts unknown, leaving my mom in comfortable and competent care for as long as I needed it. Jealous of my cousins who have parents who still fill the room with treasured stories of their past. Resentful of the fellow diners who enjoyed a lunch with a reasonable companion.

As I walked back into the house I found my Mother sitting on her bed, listening to the country music I had put on for her, before I went out to my backyard chores. She was smiling and gently clapping her hands. Mom looked up at me as I walked through the door and exclaimed, “Did you hear this? Isn’t it great? Sit down and listen to this with me, they are really good!”

I looked at her face full of real joy, and I smiled, suddenly feeling embarrassed I ever took the time to be resentful, envious or jealous.  Like she always does, she showed me that parts of the mother I miss so much, still exist.  And if I am patient, they show up often enough to make me grateful Mom is still with me. It’s not constant joy, but it will have to be enough this Holiday season. I will be grateful for what I can get!

 

 

I took some time to look back on the recent posts of this summer and the theme is not in keeping with what I was trying to accomplish when I originally started this blog.  I was hoping to stay focused on the lighter and more humorous moments with my mother. To share her sense of humor and keep her personality alive, if only in bits and pieces.

But it seems that task of late is a more difficult one. Rare are the really funny moments with my mom, even though her wit still shows up throughout the day, it feels less frequent. Mom seems to be having a harder time keeping her thoughts organized and focused. She continues to fade before my eyes.

Mornings are always my favorite time of the day however because it is when mom’s memory is the best and she is most like her old self. She is cheerful, appreciative and easy to be around for the first three or four hours of the day (unless you are trying to get her into the shower!).

But dementia is nothing if not predictable and so I should not have been surprised when I had a first with mom this morning. As I was blow drying my hair, getting ready for work, she walked into the bathroom and said I should leave, that she didn’t need me today.  I turned off the blow dryer, turned towards her and asked “Mom do you know who I am?” She looked at me with suspicion and said “Marion?” I replied “No you are Marion and I just called you Mom so who would that make me?” I took off my glasses hoping it might help her in recognizing me but Mother just looked at me for a long while. Finally she said “No I don’t remember you I am sorry” and looking a bit embarrassed turned to walk towards the living room to sit and watch TV.

And just like that my favorite time of the day with my mother, the space I could always look forward to being one we shared in recognition, faded away. My morning of memories just one more thing I can no longer count on thanks to dementia.

Tomorrow morning may be different and the morning after that as well, but in the end it is another beginning to the end of something I hold dear.Like I said, this wasn’t what I was hoping to focus on when I started this blog, but avoiding it is out of my control.

 

We spend a lifetime collecting things that surround us in our homes and our lives. They remind us of our travels, fill a collection or create an heirloom as they are passed down through the family. Our parents are no different as they created the surroundings of their homes to reflect a life lived.

If we are lucky our parents have told a story about a special figurine, a favorite silver tray or a dresser that was passed down through the generations. But cataloging the history of our own lifetime treasures can be difficult enough, without trying to remember those of our parents as well.

Maybe it would be easier were you an only child, the sole recipient of the stories and the history of their treasures. But when parents have many children, some stories are shared with one and not the others. Their history is told in pieces and when your parents pass it is knitted together by the children or the family, to create a story of their lives and the importance of the things that surrounded them.

So, as I begin the task of starting to sort my mothers home, to sift through a lifetime of memories and collections, I am at a bit of a loss. For my mother has not passed and her treasures are still in her home. The history is there waiting to be remembered and shared. But mom cannot breath life into them anymore. I am not able to call her and ask about a table or a carving or where we got a certain shell that sits prominently displayed in a cabinet. She lives but her memory is missing, her stories gone, her adventures lost and with it, the history of her treasures.

I look around me and know some of what is important to save but forget the significance of others. So I call and text photos to my sister and brother and begin to slowly piece the picture of my parents lives back together again. Trying to remember what was passed down to my parents from my grandparents, if a figurine that sits on a bookshelf is worth keeping and if a dresser next to her bed was a family heirloom.

And in the midst of it I feel robbed. It is as if a thief came in and stole much of what mattered from our lives. Because in the end if we can’t cobble together a history, many of her treasures, the things that brought her joy, are reduced to being just stuff. Our family history, the stories waiting to be shared in the things that surrounded us, lost forever to dementia.

I took my Mom to a local Costco the other day that is located across the street from a cemetery. I am not sure who manages the cemetery but much of the grass is brown and dying. Mom is always a good one for observation and the accompanying editorial comments and this day was no exception.

As we parked the car facing the street that looks across to the cemetery, Mom pointed to the wide expanse of lawn and said “Someone should be taking better care of that grass over there. It looks like it is all dying!” I agreed and commented “Yes, you would think they would want to do a better job, considering it is a cemetery and people go their to visit their loved ones.”

Mom changed her tone upon hearing my concern and said “Oh that is a cemetery? I didn’t know that, now it makes sense.” I looked over at her with a smile, almost afraid to hear her answer, and asked “And why is that?” Mom answered me as if it were the most natural conclusion you could make, ” Well because the grass know’s it is the end and so they are just saying goodbye!” Now how could I have missed that one?!