I continue to fail in my attempts at keeping the original spirit of my writings to focus on the light and humorous moments I spend with my Mom. Over the years she has been an endless provider of these stories, so I am sad that the frequency has slowed and the opportunities wane.

To add insult to injury I wade ever deeper into a society who cares for people with dementia so poorly that my patience for ineptitude has worn paper thin. In fairness I can tell you that intentions are almost always good, when dealing with people in situations where I need their assistance when it comes to managing my mother and her disease.  But I also constantly bear witness to people who are either completely obtuse, inflexible or just plain institutional in their processes.

Case in point: My Mother has a temporary handicap hanger for the car so that if nearby parking cannot be found, the caregivers or I can park in a handicap spot when accompanied by Mom. She shuffles when she walks and her balance is poor. Because of her dementia she refuses a walker, rarely will cooperate with riding in a  wheelchair and sometimes will get angry when you try to take her arm to help her remain steady. As a result, short distances when walking are important to minimize fall risks.

Unfortunately the handicap placard recently expired and a caregiver used it to park with Mom when going to get an ice cream and got a $442.00 ticket for parking in a handicap spot. My subsequent call to the city to find out why it was not just a fix it ticket was met with a reasonable response of getting it renewed and bringing proof will adjust my penalty down to a $15.00 administration fee.  But I only have 10 business days to do it.

So I picked up the renewal form at the local AAA office (love AAA) and then drove up to UCSD Senior Health with the form filled in and ready for my mother’s doctors signature, as an original is required by the DMV.  I presented the form to the receptionist who promptly told me I needed to make an appointment for my mother to see the doctor before the doctor can sign the form.

I reminded the receptionist that this was for a renewal of the previously approved handicap placard by the doctor and told her about our unfortunate ticket and the remedies I needed in place to avoid the fine, and of course to get the placard renewed. Her response back to me was an understanding smile and a repeat of the fact that I still needed to make an appointment to have my mother seen by the doctor before it could be signed.

Irritated that I spent half my morning on this errand only to have this irrational answer as my reward, I calmly asked, “Can you please explain to me WHY the doctor needs to see my mother again on this issue when she is the one who approved it in the first place?” Pleased she had the immediate answer the receptionist cheerfully responded, “Yes, to see if your mothers condition has changed.”

I looked at her for a long beat and then remarked, “She has Alzheimer’s. Her condition changes by the week but not for the better.  She is not going to be BETTER than the last time the doctor saw her.” The receptionist looked at me without comment and I asked, “Can you please see if she can just sign it without an appointment?” She answered that she would check with the nurse but she didn’t think it would be possible to make and exception.

I waited at the desk for the nurse and when she finally came up to speak with me she repeated, with more authority, verbatim the policy that the doctor had to see my mother.  When I asked if why, when they clearly knew my mother was not going to be better than she was on the last visit, we needed an appointment with the doctor she replied, “It is required by the State of California.”

Why this hit me in the gut like a hot poker I cannot say. What I wanted to say was that the State also requires the doctor not to drive faster than 65 mph on the freeways but I bet sometimes she does. I wanted to say that the State insists the doctor pay for every penny of her taxes but I would be willing to bet some creative itemizing happens so that may not always be the case. I wanted to get really mad and say ugly things because what I heard them say made me feel like they don’t really get how their bureaucracy affects my mother.

Unless you live it you don’t get what an absolute nightmare it is to try to get my Mother to the doctors office. She asks where she is going over and over again the whole time you are in the car. If you lie to her she sometimes will down deep realize that when you get to the office and then she gets very suspicious and angry. If you tell her the truth then the entire drive to the doctors office she will make you explain again and again why she is going to the doctor and then every time respond back that her husband is a doctor so she doesn’t need to go. This of course necessitates the “Your husband is dead” story which then takes on a whole life of it own!

Then you arrive at the doctors office and it is almost a guarantee she will make a scene in the waiting room and demand that you take her home because she is not sick and you have no business taking her to this place without her permission. If your appointment is running behind and there is a wait, then you have to walk her around the building, trick her into distracting conversations or do whatever you can do to keep her from trying to walk out or be distressed. All of this before you even get to the doctor.  That is a whole new circus once you are seen.

It is very upsetting to her, a nightmare for me and yet no flexibility was being presented to look like I was going to avoid the inevitable. So instead of being ugly I had to accept that even in an office where people are supposed to be expert at caring for my mother, I had acknowledge that they really have no idea in how many areas they are not our partner in her care. Just people who follow the rules when it works best for them.

It reminded me of a past conversation I had with a dermatologist who was caring for my mom. He had recommended a procedure that I felt was wholly inappropriate based on the fact that she had Alzheimer’s. He agreed with me that not doing anything was also a good decision based on her circumstances. He replied, “Sometimes in a medical practice we do what we think is good medicine but not always good for the patient.” Finally I thought, someone who gets it.

However, not so on this day. So, I quietly asked the receptionist for the soonest possible appointment and she replied, “8:30 a.m. next Monday morning”. I calmly responded that with my mothers dementia mornings are difficult to get her oriented, fed and going and with San Diego Monday morning traffic on top of it, that time would not be realistic. “Ok how about Tuesday at 4:30 p.m.?” she asked. Perfect, I thought to myself, just in time for me to sit in afternoon rush hour traffic for an hour going there AND coming back with my mother saying over and over, “I don’t need to go to the doctor, my husband is a doctor! You don’t have my permission to bring me here!” But I looked at the receptionist and said, “Ok thanks, I will take it.” Then I walked out, feeling the full weight of inflexible, institutional and obtuse all in one experience.

I miss the humor too……

 

 

 

This past year with my Mom living with us, presented the expected in equal parts with the unexpected. The expected was my moms continued mental decline, the most notable unexpected, that she was still in our home by years end.  I honestly am surprised that it continued to be the right thing to do, still caring for her at home. Yes, some days throughout 2017 did feel more a challenge than others.   But on the whole, the year twisted and turned to an end the same way it began, with us caring for a person with Alzheimer’s in our home.

So I found myself on New Years Eve, my mom sitting in her chair watching TV and me watching my mother.  As I looked at her profile, wondering what she might be thinking, my thoughts raced back to a childhood memory that has always made me feel so close to my mother.

I think I must have been in kindergarten or first grade and we were living in Nogales, AZ.  I went to a Catholic school that was located up a hill behind our house. My little girl mind remembers a dark forest that separated our house from the school that we had to pass through each day as we walked to school. In reality I am sure it was a vacant lot of trees and shrubs but it frightened me to walk through it alone all the same.

In the mornings I had my older brother and sister to accompany me, but I was released from class at an earlier time and so I had to navigate the trail back to our house all alone. To this day I can remember the fear as I ran through the forest alone  (which I am sure was no longer than 100 yards). But what kept me moving was the knowledge that my mother would be waiting for me on the other side.

I can still remember the feeling of breaking out into the clear and looking down the slope to see my mom standing in the backyard waiting for me.  I would run down the hill and into her arms like I was just returning from a journey of weeks and miles. I was always so thrilled to see her standing there waiting for me to come home.

Now a curious mind might ask why my mother, who clearly knew this trek sacred the poop out of me, didn’t just walk to school to escort me home. But that would assume a different mother at the helm.  Mine was the same one who kicked us out of the house every summer day and told us to play outside until 3:00 pm.  If we came inside we had to do chores, so outside we stayed until the appointed hour.  Although I never felt coddled I always felt loved, supported and taken care of by my mother.  I know now that was a gift, one for which I am very grateful.

Back to present, I start the first day of this year as I did the last, helping my mother to the bathroom, answering her questions of “Where am I and why am I here?”, reminding her that Dad is gone and playing the name game so she can remember I am her daughter Monica. It is how we often start our mornings, all in an effort to help her feel safe and cared for as she awakens in confusion. It can get tedious and it does take some patience, but it’s part of the expected in our new world of living with a person who has dementia.

Will I end 2018 same as I started it?  Will it make sense to do this another year, to keep my mother at home with us as we try to normalize the abnormality of her disease? That of course is a question only time will answer.  But until then I plan to offer my mother that same feeling she gave me as I ran out of the forest and down the hill so many years ago. One of knowing someone will always be there with loving and open arms to calm her fears and keep her safe. It is the least I can do, and under the circumstances of a disease outside of our control, unfortunately it is the best I can do.

Wishing you all a 2018 full of your best, even in the least of circumstances.

 

 

 

Like so many others I love the Holidays.  It has always been the time of year where I can look forward to seeing family and friends, making new memories and celebrating old traditions. However I don’t move as lightly into them as I once did.

Time has a funny way of shaping perspective and it is almost always not of our choosing. Oh sure I agree we can be grateful and thankful and joyous to our hearts content. I highly recommend that practice and certainly it is within my control to celebrate in that way, and I will and I do.  But I cannot control what is missing. What time has taken away, and nothing in the world can take its place.

My dad passed away over five years ago and although we talk about him with my mother almost every day, the memory of him is all I have left. Then of course there is the obvious disappearance of the mother I once knew. I am continually amazed at the new person she has become as a result of her dementia. We are all at the mercy of its indiscriminate erosion in her brain and so her behaviors change as does her personality.

I often miss my old mother the same as I do my dad.  It is as if she has passed away as well and all I have of her are the memories. But yet here she sits, living and breathing and behaving in a way so foreign to me it is all I can do not to get angry at times.

I would be lying if I say that anger is not sometimes directed at my mom.  I have to catch myself not to attach it to her, and often with the assistance of those around me, not to blame her for this new often unattractive behavior. My educated and conscious mind knows it is her disease and completely out of her control.  Her brain has vacant spaces that keep reason, understanding, manners and memory from flowing into their appropriate places.

But the little girl in me wants my old mother back. I want her to be smart and funny and tell a good story and correct my grammar when needed. I want her to give me a review on a book she just read, tell me the history of family silver as we set the holiday table and be happy to see the house full of people and love and noise. I want that mother back to share my Holidays.

Consequently, when I dissect my anger I know it is directed at the circumstances that time has shaped for me and the control that I no longer have in my life. I am angry at the disease that has robbed me of that woman whom I so admired, but also because the holiday memories that I am making with her today are some that the old mom would, to put it lightly, be embarrassed by.

So being grateful during this Holiday Season takes on new meaning for me. It starts with remembering that deep inside her (and sometimes right on top!) lives the mother who gave me life and endless love, even to this day. That a disease can change the landscape of how I view my mother but not the universe of love and family and friends that she created.

Most importantly, I will remember that one day these memories I am creating today, even though not moments my old mother would have enjoyed, will probably give me endless hours of stories filled with laughter and tears, heartbreak and understanding, compassion and joy for a life not planned but accepted.

If I can look forward to having those memories to weave into all the others, then for today I can be newly grateful for all that I have this Holiday Season, including still having my mother with me to love and to enjoy.

HAPPY HOLIDAYS!

Today is my birthday. I have always been curious as to why we celebrate the person who was born instead of the one who gave them life in the first place, our Mothers.

No slight intended to Dads, but there is no other human experience that can equal the miracle of a mother giving birth to her child. It really is amazing when you ponder the wonder of it all.

Yet we celebrate the child, ourselves, on birthdays when the real star of the show should be our mothers.  The women who protected us in their womb for almost a year. We were comfortably cocooned in a place of blood and bone, tissue and fluid, all conspiring to knit us together into a sentient being.  It really is a work of the highest art!

But we claim that day as our own, as if coming into the world was somehow of our making. It seems a lack of recognition that we were only given the gift of life thanks to our mothers. But yet we are the ones to receive all the joy!

It is not this birthday but most that make me wonder about why I was conceived and all the details about the day I was born. I have been unsuccessful at getting much detail from my mother on that topic most of my life.

I remember one day in high school, after doing the math (counting back 9 months) and recognizing I could have been the result of a New Year’s Eve celebration. 

Always one to ask the inappropriate question, I put that one to my Mother. She looked at me with a start and said, “That is a rude question and none of your business!” Taking a different tact I apoligized and then asked her, “Ok but was I planned?” Answering like a good converted Catholic should, she looked at me and said, “Nobody plans to have kids, they just show up when they feel like it!”

That answer is funny to me now but at the time it was highly unsatisfactory. All the fuss and celebration that goes into our birthdays made me think I should have been part of some grander plan. 

But on this morning of the anniversary of my birth, I looked over at my Mother wondering should I even mention to her that we had occasion to celebrate? I was too young to remember that day and now she is too old to do the same. It always makes me a bit sad. No more cakes made by her hand, no beautiful cards and loving wishes. 

But then I remember to be thankful I get to have her here with me at all on our special day. I remind myself to be forever grateful that the first gift she gave me on my birthday is still with me to this day…the gift of life! That makes it a very happy birthday indeed!

If there is one thing I may be a bit over the top about, it is making sure I have properly introduced my Mother to every facet of geriatric medicine, so as to ensure she has all the resources available to her in addressing her dementia.

As a result today found us at an appointment for Mom at a brain center who specializes in helping people with early onset memory issues. I know Mom is way past that stage, but I called to ask was it appropriate for them to do an evaluation on her and double check her medication doses etc., just to be sure we are on the correct path. They were happy to oblige.

If you have never been to such a consultation, the Neurologist does not only a physical examination of the patient but also cognitive testing to see their level of memory loss, recall, word finding etc. Part of the cognitive testing was to hold up common, everyday objects so as to see if mom could properly recognize and then name each one.  Her daytime caregiver, Lety, was sitting on one side of mom and I was sitting in the chair on the other. The three of us were facing the doctor and so Lety and I were a witness to each object being shown to mom as she tried to give the correct answers.

After a few objects were shown, it was clear mom was having a difficult time with her word finding and she was not always successful in proper recognition. The final object the doctor held up was a long ballpoint pen and he said to mom, “Marion do you know what this is?” Mom was looking straight at him and asked “What?” He answered, “This long skinny thing in my hand, do you know what it is?” Mom looked at him with a wry smile and said, “I want to say it is a Dick but I am sure that can’t be right.”

To say Lety and I almost died laughing was not too far from true until mom then looked at us, and with a chuckle of her own said to the doctor, “I guess you can tell my husband has been gone for awhile now!” It was all I could do to finally find a way to breath. Gratefully Mom was laughing right along with the rest of us and how the doctor was able to get it back on track was a mystery to me. Only my witty mother could fail a test so spectacularly and still come out looking brilliant!

I had a bit of a jolt today when my partner came home and shared a conversation she had with a friend. He had shared with her that he felt “sad” for his friends (we were included in that bunch) because our lives seem so hard. He went on to describe how his is so carefree and yet many of his friends are not as lucky in life.  He was quick to point out how good his life was running and intimated ours was frought with obligation and burden. 

On hearing this, I first went to my defensive space, wondering how anyone could interpret my life in that way. Then I dashed into the door marked “guilty”, and wondered, have I posted too much that represents our caring for my Mother at home as drudgery?

In truth, reality is so far from it I am ashamed if it looks to be so. YES it is occasionally tedious, exhausting and often sad. YES it shapes each day to conform to the best way to manage our lives around Moms care. YES we miss out on much and spontaneous living is on hold for the foreseeable future.

But the trade off is the reward. The love I feel for a partner, so kind and giving in how she cares for my Mother, is one I could never have experienced had I not been a witness. 

The comfort I can offer my Mother when she is afraid and confused in the middle of the night, would not be possible where she not here with me. That is one of countless examples that makes me glad I am close by.

I am grateful the reason my Mother is with us is because, at this time in our lives, the universe makes it possible. I feel lucky that for this moment in time we can have her with us and it works.

For me personally I can find no greater joy in having the stars aligned for this to be possible, as I know this too will pass. But for today, I am grateful beyond words, as it is my privilege to spend time with and care for my Mother. Even when the times get hard, and they do, I will forever be thankful for these memories.

I believe there is no substitute for the participation of living with and caring for a loved one when the ability for reciprocity is diminished. You learn it is not a test, an obligation or a job. It is a state of being that brings a texture and depth to your life that can only be appreciated through that experience.

So when a friend spoke of sadness it seemed foreign to me. Sadness only visits when I miss the mom I once knew. Outside of that I feel so grateful to be able to care for my Mother. It is my gift to her for all she has given and been to me and without reservation and question ….That brings with it, happiness! 

Living in a small house with my mother can have its challenges, but they seem to magnify on Friday afternoons.  When the end of a long week begins it’s turn into a Friday evening, rest and relaxation are typically on my mind. Not so much my Mothers.

Late afternoons are the bewitching hour where she begins her decline into restlessness and increased confusion. She has new compulsive behaviors that tag along with her dementia and one that is particularly annoying to me, is her obsession of picking minute items off of the hard wood floors. Mom collects them in the palm of her hand and when she has a speck or two visible, will ask me to direct her to the trash can for their proper disposal.

I have tried to stop this behavior as it at times is accompanied with sweeping the floor with her fingers for a more satisfying pile of debris. Encouraging the use of a broom or whisk broom will not deter the project.  She prefers to do this chore by hand, literally.

In my practice to acquiesce when safety is not an issue, I decided on this day to let it go and try to ignore her as she was bent over diligently brushing her way towards the kitchen.  As expected she picked up her prized debris pile (so small that it could be comfortably pinched between thumb and forefinger) and collected it into the palm of her hand. Then she walked towards me, hand outstretched so I could see her prize, asking where was the trash can. Typically I put out my hand and say “Give it to me I will throw it out for you” but today I thought I would let her finish her task.

So as I stood at the kitchen sink, I piloted her towards the trash can with instructions of “turn left, now go right, now straight ahead” etc., until she found herself standing in front of the kitchen trash can. She looked at me and said “Now what?” I told her to step on the peddle at the bottom of the can and as she did the top opened and she began to deposit her pinch of debris into the trash.

As I watched she suddenly stopped and reached into the trash can and exclaimed “Oh look! How beautiful!  I am going to take this for me” and proceeded to pull a flowery used paper plate out of the bin. I silently cursed myself for allowing her to venture into the trash, as this is not an uncommon practice. She loves to salvage “perfectly good” trash out of the bin, try to clean it and put it out to dry.

I measure this habit a few annoying notches above the “finger sweeping” and so I urgently called out for her to put it back saying, “That is dirty trash Mom, please leave it alone!” She looked at me like I grew a third eyeball and demanded “This is beautiful and I want to take it for myself!” Weighing the option of arguing with a women who has Alzheimer’s or picking a battle more worthy of an ulcer, I responded “Well Ok Mom, it is yours to take.”

Mom happily took her paper plate to the kitchen sink to wash it. She then summarily marched her flower printed paper treasure into her room and placed it in a prominent position, propped up against her dresser mirror for display.

Moms Friday night gave her a new treasure. Mine gave me a reason to have a giant margarita!

Bathroom humor is part of growing older. You don’t need to have dementia to experience irregularities and incontinence issues creep into your life as a result of a  health and fitness issues. There is no shame in it but often people laugh about it or else they would cry.  I believe it helps deal with the frustrations of such a condition.

It is typically a topic I avoid in my blogs as it is not a big issue at our home and it quite frankly is one that makes me a bit fearful.  I am able to manage so much of my mother’s new behaviors as a result of her dementia, but many a person who have lived through my experiences have told me that was their turning point.  When their loved one began to exhibit profound issues around incontinence, it took them to a level of care they could not tolerate or manage at home. I don’t want that day to come.

So, for want of a better term, I am a bit pee and poop paranoid and tend to get anxious if we have any episodes. I am always waiting for it to become a thing! So I found myself in such a state very early in the morning a few days ago. Someone woke up and on their way to the bathroom and stepped in a puddle of pee. I quickly jumped into action with bleach, paper towels, latex gloves and followed the trail back to my mother’s bedroom.

I had to turn on the light in my mother’s room and it woke mom, who understandably wanted to know what was going on. Irritated, and unsuccessfully trying not to show it, I told her to put a pillow over her eyes because I needed the light on to clean up a mess. “What mess?” she asked in an uninterested tone, lying there with a pillow over the top half of her face. “There is pee all over the floor and I need to clean it up”, I answered with more than a bit of exasperation. Clearly her anxiety level about the situation was not rising to level of mine.

Mom remained very matter of fact as she lay there contemplating the situation and asked, ” How did it get there?” Missing my opportunity to be a kind and dutiful daughter I fell into the trap of shaming and said, “Well Mom, obviously it is in your bedroom and it is all over the floor leading to the bathroom so it must have been you.” Mom thought about that for a minute and then replied into her pillow, to no one in particular, “I wonder why I was on the floor?”

Nevermind…..

My mother was sitting outside with us enjoying the evening. We started to have a conversation that on her end degenerated into something that made no sense at all.  She jumbled her thoughts and words into a topic that was far from where we started.

After a particularly long ramble on her end mom stopped talking, looked and at me and fell silent. I looked at her and said, “Mom, I love you.” Mom responded back with a sweet smile, “I love you too, whatever your name is!” I laughed ……and was grateful for the love!

My mom has taken a step down again in her journey into dementia. I see these shifts, she will get worse, plateau and then the whole downward process takes another dip into that irretrievable place in her mind. It is sad and frustrating because each phase takes us into another more complex living situation.

Her recent slip has been an accelerated loss of word finding and comprehension. We will be having a conversation and she will ask me to repeat a simple word because she doesn’t understand what I am trying to say. Same goes for her saying something back to me as she will search for a word, knowing the one she is using is wrong and it turns into charades at times trying to get me to guess what she is trying to communicate.

But through it all the humor that has been mother’s hallmark personality trait stays constant. Here are a few gems that made me laugh and remind me that sometimes the confusion is not just on one side:

One morning Mom kept trying to get out of bed to begin her day starting at 5:00 a.m. I would wake up each time and suggest she go back to bed and try to get some more sleep (translation, I wanted more sleep) and each time she complied.  By the 4th time in one hour she attempted to start her day, I finally relented and said in exasperation “Well Mom you might as well get up since this is the 4th time you have tried in an hour.” Mom leveled a steady gaze at me and asked “How many times do people usually try?”

Mother is always cold in the mornings, so her routine is to come out into the living room rubbing her arms and saying “Chilly, chilly.” I then go retrieve a sweater for her and she puts it on gratefully and sits down to read her newspaper. One this morning Mom came out of her room rubbing her arms as usual but saying “Shitty, shitty.” I replied, “No mom you mean chilly, chilly. It is a bit cold in here.”  Mom said, “Yes it is a bit shitty in here.” I corrected her again, “I think you mean chilly, it is a little cold in this room.” She looked outside through the window in the living room, at the overcast gray sky and replied “Yes it is cold but it is also shitty out too!”

Mom will often comment about her aches and pains in the morning and ask me with great concern, “Did something happen to me?  I hurt all over.” I will gently ask her what hurts and she will answer her back or her arm, etc. I usually answer that nothing happened to her and offer to get her a Tylenol to relieve the pain. One morning she began her complaints and I again told her nothing happened to her but this time added, “And Mom you are 82 years old, so your bones do get achy.” She replied, “So what, eighty- two isn’t that old.” I looked at her and said, “Well I guess it is all relative.” She commented, “Whats my family got to do with it?”

Mom was sitting in her chair,  reached to put on her glasses and then turned to me sitting in the chair next to her and asked, “Where is that thing I like?” I knew she meant the morning newspaper, so I pointed to that mornings edition sitting right in front of her on the ottoman and answered, “Your paper is right there.”  She looked at me confused and said “My lapar?” I repeated, “No Mom your paper” and again pointed to it. She looked around the room and said with a bit more exasperation “Caper?” Now a bit frustrated I said “Mom your paper, your paper!” as I am stabbing at the air in the direction of the paper lying at her feet. Now mom is annoyed and looked at me and says a bit more loudly, “Rapper?”  With more irritation than I should have shown, I got up from my chair and grabbed the paper and placed it in her lap, and unfairly let my frustration out on this poor woman with dementia, repeating, “Paper! Paper Mom, not rapper! Gosh sometimes I think you must have a hearing problem.” She picked up the newspaper and looked up at me and said “Well clearly I am not the only one!”