My Mother has always been a sun worshipper. So much so, that providing outdoor space for her to sit and bask in sunlight is critical to her well being. As a result once she moved in with us, I made sure that we created a number of places that provided direct sun and also shade, so mom could enjoy both at her leisure.

So it was not surprising that is where I found her late in the afternoon, sitting in the full sun, feet on the ottoman with her pant legs rolled up, barefoot, eyes closed, soaking up the California rays. I sat a short distance from mom so as not to disturb her, in case she were sleeping, and started working on my laptop.

As is common during the month of May, in coastal Southern California, a marine layer will develop overnight, burn off in the early afternoon and appear again a few hours later as the sun  starts to make its way towards setting.  So right on cue, mom found herself sitting under the gathering clouds as they attempted to put an end to the sunny afternoon she was appreciating.

I heard Mom start talking, so I looked up from my work only to observe her gazing up into the sky. She was pointing towards the clouds as they shaped and shifted and exclaimed, “Look at that! Look at all the action going on up there.” She wore a big smile and said, “Isn’t that something!” I looked to the sky to see what all the fuss was about and I have to confess, found myself caught up in her delight.

It was a battle for supremacy, the clouds would build and move trying to take over the sky as the sun continued to warm the air in a final attempt to shine through. Mom made it endearing as she  cheered the sun on with shouts of encouragement. As she watched the clouds move across the sun she would say “Come on, you can do it” then witness the sun peak back out and shout “Yeah, you did it! Thank you” and clap softly with delight. Mom would close her eyes and rest her head back until the next shadow of cloud covered her face and then her solar inspirations would start all over again.

Rare are true delightful moments that her dementia brings into our lives, but occasions like these are surely examples of them. Who knows why her mind finds wonder in experiences mom might have once thought pedestrian. But on this day I was grateful to witness the wonder through her eyes.

As expected the sun began to lose its strength  and the clouds rolled into a blanket of gray to end the action. All the while with mom talking to the sun and  thanking it for every last ray and shine.

I often hear comments from my family and friends that I am an Angel or a Saint for bringing my mother into our home and providing the personal care on her behalf.  To be honest the praise often makes me uncomfortable, and certainly I feel it is exaggerated. I am far from saintly and angelic in my dealings with my mother. I am so close to the pain of losing her that my frustration and feelings of loss often can exacerbate a situation. Sometimes I think  our hired caregivers, who are less invested, react more effectively than I do with my Mom.

I mention this because I am surprised that comments of praise come almost as frequently as comments, or should I say confessions, of guilt. Many of my friends and acquaintances have a parent with dementia, or who need assistance, and a few have admitted that watching me care for my mom makes them feel ashamed, that they are not doing the same for their parent. They profess a sense of guilt or feeling selfish, that their parent is in a facility or being cared for by strangers. It is confessions like these that break my heart.

My sharing moments with my mother was intended to bring humor to a difficult time, give others in like situations a place to visit and maybe an opportunity to relate to a shared experience. But mostly I chose to write about it to shed light on the challenges families face every day as they witness a parent so dear to them disappear, bits at a time.

So in highlighting those challenges I think it is important to make certain we honor the differences as well as the similarities. Caring for an aging parent in your home, especially one with dementia, is not for everybody. Every parent’s demeanor, care needs and circumstances are different. As a result, for some who wanted to care for their parent at home, it would not only be impractical, but often put their parent at more risk to try to do so. I believe our situation is more unique than common, that we are able to have my mother with us rather than in a memory care facility. I find it strange, given the difficulty of the situation, to admit I do feel lucky that we are able to care for Mom in our home.

The other differentiator is having the fortitude to be able to actually provide the care your parent needs.  This is not intended as a judgement, that if you don’t have the strength you have a weakness.  It is a matter of composition; your make up.  Some people are good caregivers in some situations and not in others . Trying to force yourself to be all things, to meet all of life’s challenges without assistance, will guarantee a life filled with guilt and regret.

Sometimes the greatest gift you can give someone you love is humility. Having the courage to admit what is in their best interest is not the personal care you provide, but the love and intention behind making sure they receive the care they deserve.

My broken ankle has created an unintended consequence in that I believe it has put my mother in a bit of a tailspin. It seems odd to think that my mother’s memory could be affected by me breaking my ankle, but it is upsetting for her to see me hobbling around on crutches. Mom is constantly asking me what happened and so I repeat the story of my broken ankle for the 20th time in a day, only to see her face reflect a look of concern and worry.

I try to be light about it, but I can tell it upsets her each time she hears the story. Sometimes she is a bit more pragmatic in her response than others, but there is a definite difference in her confusion the past few weeks. It could of course be a more ominous sign and another shift in her cognition towards her inevitable decline. But I am not sure it isn’t the recent events that are taxing her emotionally and exacerbating her condition.

So that was the scenario on a recent evening as I found myself sitting in the backyard with my booted broken ankle/foot resting on our outdoor coffee table.  Mother would come out through the backdoor, sit and talk with us a bit, ask me about my ankle, get confused by our conversation, stand up and say, “I don’t know what you all are talking about so I am going back inside”. Then she would walk back in the house, only to come back out a few minutes later and repeat her pattern. She just could not sit still.

It is sad when she gets like this, but it can also be exasperating because you want so desperately for her to remember something that you have repeated for what feels like the 100th time. Maybe it was because I was tired and my ankle hurt, but my patience began to wear thin. To make matters worse she was getting more and more agitated as the evening wore on.

On the last loop out to the back yard Mom stood in front of me and demanded, “Does my family know where I am? When are they coming to get me?” I was unfairly annoyed at this point so I started to push her to retrieve some memory, if only for my sake, and I said, “Mom I am your family! Do you know my name?” She looked a bit embarrassed and answered “Harriot?” I said “No that was your mother.” She tried again and said “Marjie?” I replied “No Marjie is your sister.” She said with a smile “Oops, well I am thinking.”

By this time I was really pushing her and I probably said a bit too urgently “Mom! Who am I, what is my name?” An expression of relief flashed across her face as if she had just figured out what I was trying to get her to understand. With a look of acknowledgement she exclaimed, “Oooh, so you don’t remember either!”

I laughed so hard I could barely catch my breath and that made the giggles start all around; And just like, the evening took a turn for the better, even though she never did remember my name!

 

 

One of my biggest disappointments in life is never having children. I believed one day I would grow out of it, the feeling of knowing I missed out on something magical, but so far that has proven untrue. It is not as if I lament daily on the topic, but it does show up in my heart now and again. Having mother living with me has made those occasional moments of regret more frequent.

The bond I have with my mother despite her dementia, proves it is one of the constants in life on which I can always depend. I will miss sharing that in my life when my mother is gone. But today that bond is alive and well, as was recently witnessed in a series of unfortunate events that befell me, only to have my mother wanting to come to my rescue with each passing event.

It started with the news that my new job, one that I had hoped would springboard me into more opportunities into my retirement years, will be ending in a few weeks. I was understandably upset by this unexpected turn of events and it was evident to my mother.  She asked me about it so I filled her in on the gist of what was happening so she could understand my disappointment.

After hearing the overview she looked at me and said “I know you must be disappointed but something else will come along for you.  In the meantime you know you can come and live with me until you get a new job.” I laughed but was touched and thanked mom for her generosity, not wanting to spoil the moment by pointing out the obvious.

As frequently happens during times of stress, I promptly got the most miserable head cold with the accompanying severe cough and congestion. My mother hovered with each sneeze and hacking cough asking could she bring me a drink of water and reminding me to let her know how she could help. She was very sweet and thoughtful.

Then, as I was having one of the most miserable few days in recent memory, the trifecta of bad news presented itself in short order. Because as we know bad things always happen in threes! Mom was sitting enjoying the sun on the back deck. I walked passed her to the steps that lead off the deck onto a flagstone pathway in the backyard. As I stepped down my foot landed on the edge of a flagstone paver, my ankle buckled under and the full force of my weight drove it into the ground. I heard a crack reminiscent of a baseball hitting a bat, and I folded writhing in pain onto the ground.

As I rolled around on the ground, spewing profanities and grasping my ankle, my mother rushed over to help. As my frail 81 year old savior kept trying to bend over and help me up, even in my fog of pain I recognized a potential for a double disaster. I called out for her to just give me a minute and I was able to compose myself enough to stop my protestation of agony and sit up.

Although mother’s caregiver had already left for the day, as luck had it Kathy was already home from work and somewhere in the house.  However my exclamations from the backyard had not sent her running, so she was still unaware of my dilemma and  I clearly could not stand on my own.

Not wanting to scream her name at the top of my lungs, for fear neighbors would come running to assist as well, my only option was sending my mother into the house to retrieve Kathy.  This may sound simple but mom has a very difficult time with direction.  She can be standing in front of a roll of paper towels in the kitchen and as I try to instruct her on which white thing on the counter is the object she is looking for, mom will grab the salt shaker, a white coffee mug, etc. until her hand lands on the correct item and I say “Bingo you got it!”

But limited by my choice of trusting mom with direction or crawling on my hands and knees with her hovering to try and help me up, I chose the former.  I calmly asked mom could she please go into the house and get Kathy to come and help me. Mom asked me a few times for clarity what I wanted until she seemed to get it.  Then I watched her walk through the backdoor and heard mom call out “Kathy can you come hear please, Monica needs you!” Wow! You could have knocked me over with a feather, that is if I wasn’t already lying on the ground.  Kathy immediately came to assist me in standing up and with one supporting me on each side,  we hobbled into the house together.

New jobs will come, head colds clear and broken ankles (yes I broke it) heal with time. But one thing never changes and that is once a mother always a mother. It is nice to know even in her altered state I can still occasionally depend on mine, especially when it really counts!

 

 

 

My mom never fails to make sure that I remember she has severe dementia, even when she cannot. This reminder almost always occurs during a time when I have been lulled into thinking that maybe her memory is in a holding pattern or an even more radical belief, that she might actually be getting better! My wishful thinking is always  ceremoniously crushed by an event that jars me back into the reality of the situation and this time was no different.

I was in my contented state of “all is good”, as mom had been so interactive, was doing a great job of being comfortable in the present and was cooperative and friendly with the caregivers.  My hint that this was just one of her ebbs in the poor memory flow should have been when she started asking when she was going home.

Now in my defense I always look at that as a good thing, as it lets me now she is aware of her surroundings.  It is much easier to deal with than when she thinks the house we are in belongs to her and she proceeds to lecture me about leaving lights on and wasting HER money as a result. People with dementia are often sensitive to light so if mom had her way we would be in near darkness almost every night!

But as it turns out her asking when she was going home was a sign of increasing agitation. It played itself out in full blown anxiety when I heard mom get up and come out of her room at about 2:30 a.m.  I got up to see her standing in the hall with a small white pillow tucked under her arm like a purse.

When I asked mom what she was doing she replied very urgently “Where is my car, she is waiting for me in there!” I tried to calm her down as she started walking toward the living room with my standard “Mom you just woke up in the middle of the night.  You are here in San Diego visiting me.  It is me Monica.” This almost always works to get her oriented to where she is but this time she was having none of it.

Mom continued marching toward the living room, placing her small pillow/purse on each chair as she passed by, then picking it up all the while continuing to ask me where her car was. I reminded her that her car was in Carson City and she was in San Diego but she insisted she needed to look for it.  She walked to the front door and asked me to open it for her explaining “She is waiting for me in the car to leave!”

These are the times you flash through all sort of concerns and scenarios, i.e., neighbors seeing us standing around in the front yard in our pajamas, my mother mumbling around with a little pillow tucked under her arm. My mother bolting down the street in search of her car with me in tow wearing no shoes and, more horrifying for me, no bra! The possibility that I could not convince my mom to go back in the house and the prospect I would be wandering the streets for a time trying all manner of logic to redirect her back inside.

But, I threw caution to the wind, as she had never insisted I let her go outside at night before,  unbolted the door and followed her out to the driveway where our cars were parked. Mom tried the door on my truck only to find it was locked and then moved onto my work car. To my chagrin I had left the door unlocked and she promptly opened it and placed her pillow/purse on the passenger seat all the while mumbling that this wasn’t the car she was looking for, stating “Well this sure isn’t it.”

I stood back and watched her proceed to pick up each and every piece of trash off the floorboards and basically clean and tidy my entire car before she finally asked me to come over. Mom handed me the trash to throw away and finally she looked convinced and a bit relieved. She picked up her pillow/purse, put it under her arm, thanked me for letting her look for herself and followed me back inside.

As we walked back to her room mom seemed astounded that her car was not out front and said that I was right and apologized for waking me. I told her it was no big deal but she had a look of real  concern and said “Thank goodness you were here, I don’t know what I would have done if you weren’t.” I of course didn’t bother to repeat all of my imagined scenarios. I just laughed and told her to try and get some sleep.  I was just happy we avoided any and all of them!

 

 

 

The mind continues to be a mystery to me every day I live with my mother. Although I have learned to come to terms with much of the incongruity of a life lived with dementia, both mine and hers, I still experience moments of amazement that baffle and surprise.

I had an astounding moment on a recent night a few days after I returned from a vacation where I had a much needed week away from the continuous care of my mom. The caregivers told us that she had a lot of confusion while we were gone but that in general Mom did pretty well. She seemed OK to me but a bit agitated upon our return and was getting up more during the night than usual.

I try my best not to give Mom any extra medications but the doctor gave me names of a few over the counter sleep aids that are safe for her to take on occasion.  On this particular night I was tired from mom getting up so frequently the evening before, so I asked did she want a sleeping pill, she thankfully said yes, and I gave her one in anticipation of a restful nights sleep.

A few hours into the night I heard a voice coming from her room  and assumed she was once again talking in her sleep. I never heard her do this when I was a child but in her dementia she does it occasionally.  It is always nonsensical and scattered. But this time the cadence sounded like it had a rhythm of logic and so I sat up in bed and leaned in, to eavesdrop on her conversation.

It sounded like she was having a conversation with a person to whom she was very familiar. As I started to listen she said “Well no I am not up in Carson right now. I have been gone now for awhile.” Silence as I am assuming her “person” was responding and mom replied “You know Pat isn’t with me anymore. He has been gone for quite awhile now.” There was a pause and then mom replied “Yes I have been down in San Diego visiting Monica for a few months, but I hope to get back up home when the weather warms up.” Silence again and then Mom said “Well it was good to talk to you dear, and I miss you and hope to see you when I get back” Pause then “Oh thanks for calling, bye now.”

I was so stunned by the clarity of her voice, the complete accuracy of her information and most of all because it was like my mom had come back from the abyss and was sitting right there in the next room. My old mom, the lucid mother I remember. I was a bit in shock.

I rushed into her room and called in “Are you alright Mom?” She sat up and as I turned on the light she looked at me a bit dazed and confused. I said “You were talking in your sleep.” She looked at me and said “Yes I just have been because I was just on the phone with Marilyn Hines.”  I replied that I heard the conversation and she said “Oh am so so sorry to wake you, how embarrassing.” I laughed and said “Don’t be embarrassed Mom” hopefully waiting for my lucid mom to hang around a bit longer.

She proceed to get up and walk into the bathroom and I sat on the end of her bed waiting for her return. Mom walked back in looked at me and said “Where am I?” My heart sank a bit and I said, “You are in San Diego visiting me.” Mom looked at me and said “What is the matter with me that I don’t remember that?”, and just like that she was gone to me again.

I agonized for a few days about the fact that somewhere in her subconscious she is learning new things and storing them for retrieval. But storing them in a mind where the conscious self can rarely retrieve then or keep them in order. It is heartbreaking to think she still has the ability but not the access and there seems nothing I can do to help her reach that place. It seems so cruel on so many levels.

My mom is 81 years old and the chance that science will come far enough to unlock her mental mysteries and help her access her subconscious memories is the future that she probably won’t live to see.  Who know, maybe I will?

In our new life, I rarely move through a day feeling as if the efforts I have made for my mother, the place we have carved out for her and the painstakingly organized care choices that have been orchestrated on her behalf, have created one moment of happiness for mom. It is not a comment born from resentment but one from living a life in constant contradiction.

It is counter-intuitive for us as human beings, at least healthy and thoughtful ones, to perform duties for the benefit of someone we love, that does not bear the fruits of happiness.  We strive to evolve in our lives and to make decisions for those  we love that brings happiness into the equation. At the very least, part of the time.

But when, like in our life, dementia walks in, it often robs the person who endures it of the simplest gleam of happiness, even in the most obvious of loving situations. My mothers once healthy mind would have been grateful and thankful for everything her children have done to care for her in this condition. But of course that mother I knew is lost inside this place of constant confusion so her mind is suspicious of actions and intent around every effort that is made in her direction.

It is difficult to watch  mom’s pinched expressions of concern, anger and frustration at not being able to decipher the motivations around all the activity that surrounds her. It is clear she still has enough on the ball to know her life has forever changed. She can’t quite grasp how, but is not happy about it. She seems lessened by the experience, so the laughter, the joy and the appreciation, for now anyway, are easily overwhelmed in her new journey. Heartbreaking to think she may never adjust. But we still work hard to keep her life positive in hopes she eventually will.

So that was my frame of mind today as I had yet another crabby making situation to force upon my mother. It was time for the long term care insurance company to send out a nurse for their annual assessment. The insurance company does this to make sure mom still needs to access the coverage for her care at home. I bring up my frame of mind only for reference, and justification, for the rant I am about to impart about the witlessness of this annual exercise. I am sure on some level it is for her protection, to make sure the money is properly needed for her care, but there MUST be a better way!

Mom has dementia, it does not ever get better and is almost guaranteed to get worse. So to waste their resources, my time, but most paramount, continually affront my mothers dignity with their annual memory test is usually more than I can bear. To sit by in silence while the very nice nurse asks my mother the same questions, has her write the same sentences and copy the same drawings, all of which mom consistently performs poorly, and with greater magnitude of failure each year, makes me cry every time they walk out the door.

It is not the poor performance and the documented annual decline that is the hardest part.  I witness that escalation every day. It is watching my once genius mother being forced to do the assignments, that she on some level knows she can’t perform, trying to fake, joke away and in some cases really tackle, all in an effort to stave off what she seems to know is coming….Embarrassment. It happens every year and today was no different. Once she sufficiently failed and everyone in the room was aware of it, she looked at me and said “So now you think I am stupid and can’t do anything for myself.”

I held Moms hand in mine and told her that she will never be stupid and explained to her that she has a memory problem and we are just making sure she gets all the help that she might need. But as always the damage was already done.  After the nurse was gone, mom sat quietly on the couch staring straight ahead, with me next to her asking was she OK. Her lip trembled and she began to silently cry but only replied “I will be fine I just want to be alone for right now.” She looked humiliated.

I kissed mom goodbye, as I had to leave for a work appointment, and promised I would take her out for a lovely dinner when I got home. Then I walked out the door and proceeded to cry in earnest. Once again I had the frustration of having to create a care situation that resulted in her feeling torpedoed as she was trying navigate in her new world.

But later that night, dementia gave me back what it took away when Mom was happy to see me when I arrived home from work, the morning seemingly all but forgotten. She was newly excited about going to dinner and we went to a lovely Coronado bay front restaurant with a stunning view of the San Diego downtown skyline.

We sat across from each other and I told her about my day and then cautiously ventured to ask a few general questions about how hers turned out.  Mom answered with “How would I know I don’t remember anything.  I guess nothing went wrong then.”  I laughed and said “That would be a wonderful life to live where nothing ever went wrong!” Mom looked at me very thoughtfully and said “Not especially. You should know a life with the good and the bad. Otherwise how do you know what is really going on?”

Like I said, living a life in constant contradiction.

 

The New Year brings into our lives new experiences and along with those come new people, and inevitably they become the new victims of my mother’s dementia. Oh not in a sinister way, but in the “Hi my name is Marion and watch out how you phrase things to me because I will getcha” way.

Mom has become so literal with her dementia, or perhaps more one dimensional in how she processes the English language. Especially when it comes to answering questions or following instructions. She frequently needs reminding and redirecting to perform a task or answer a question and simple declarative statements work best with her, as she tends to be quite literal in her interpretation.

As a result my life with mom, runs the range of emotions, depending on who is being addressed, from awkward, explanatory, apologetic to mostly humorous. I never know what each new person we encounter is going to bring into our lives, because of their moments with Marion, and the emotion they will create for me.

So set the stage, with the entrance of a new health care provider. Going to the doctor as I have shared before, is difficult for me because mom is always in the room. As she is the patient, we have to talk about her and whatever issues need to be addressed in front of her. But because of her dementia, of course she has no memory of why we are at the doctor and the purpose of the visit. As a result, mom gets easily agitated and confrontational.

Because mom needed to establish a new healthcare provider here in San Diego, I took her to the new office to meet the doctor last week, with a follow up this week with the Nurse Practitioner for a complete physical.

We started with the typical explanation of her history, her dementia and all the questions that accompany such an inquiry.  I try my best to let mom answer for herself as it seems to keep her calmer, but it also gives the health care provider a better opportunity to see the extent of her dementia.

Because mom had a recent urinary tract infection, the Nurse Practitioner (NP) started to ask her questions about her daily routine, which included her bowel movements and the “quality” of said routine movement. When mom asked her “What do you mean the quality of my bowel movement?” The NP looked at me knowingly and rephrased with “Your poop, how is your poop?” Mom answered with “Well it is there.”

I am trying my best to stay out of it, after all mom is the patient, but it is all I can do not to start laughing. The NP was amused but professional when she came back with “Good I am glad! But what does it look like?” Mom answers “Like poop!”

At this point I still remained a bystander even as I could not help but laugh at such a predictable answer, and in all fairness a very good one. Finally the NP gets the  rhythm she is looking for and explains “OK but what is it like? Is it hard like little marbles, is it runny, firm or soft?” There is a pause, or maybe it was just me silently saying in my head “Wait for it…” when mom exclaims indignantly “How would I know! I don’t reach down and touch it!”

…and Scene.

 

 

I thankfully hadn’t made it to the sleep stage before Baby Pat returned to Moms consciousness last night and no less than three times called me in to deal with this small child under her covers whom she was fearful of squishing.

I tried all matter of persuasion to get her to let me take him into my room so she could sleep, but each time she realized it was a dog not a child and insisted he stay in her bed where he belonged.

Finally on the last visit when I threw back the cover to show her that Baby Pat was not a child but Timmy she laughed and said “What a cute dog! Well he would have made a cute little boy too!” We both laughed and I placed the covers back over Timmy and mom’s mood changed instantly as she worried “Can he breath under there?” I rolled my eyes and said in exasperation “Yes Mother. He can breath just fine.” Mom looked at me sternly and said “If he is dead in the morning I will be really cross with you.” I didn’t miss a beat when I replied, “Welcome to my world!”

Mom gave me a knowing look, laughed and said good night….and finally she meant it!

All is not lost in the humorous moments with Marion! In the little over a month Mom has been living with us, she has developed some curious new patterns mixed with some old ones, as Mom makes her way in this new life.

It seems poor Timmy still has the bed time identity issue, where Mom cannot correctly recognize him as being a dog. Because he burrows under her bed covers at night to sleep, Mom can feel him but not see him lying next to her.  So at least three nights this month, Mom has quietly tiptoed into our room to ask us to come help her with the Baby Boy she has lying in her bed.

The first night she came in with a big smile on her face asking me to come help her with Baby Pat. Mom said “I am not used to sleeping with him next to me and I am afraid I will roll over and squish him!” My response was to go uncover the offending, and offended, dog and show Mom it was Timmy. She laughed and thanked me, a bit relieved she could relax back under her covers and everyone was back to sleep.

Baby Pat appeared a second night, with the same result, and again relief that it was her dog and not her child buried under the covers. Last night the Baby appeared again but this time without her identifying who she thought it might be.

Being Christmas night I could have made mischief with the coincidence of this child who appeared from nowhere on that very night, but of course that would most assuredly guaranteed me coal in my stocking next year! So I walked Mom back to her room to show her that it was her dog Timmy and not a baby boy under her covers.

But this time Mom was not buying my assurances even after I uncovered her dog to prove it was Timmy.  She looked at me and said “Well OK but he can’t stay under those covers like that he might die!” I laughed and assured her the dog liked being snuggled under the blankets because it kept him warm. I threw the covers back over top of Timmy to prove my point.

As he lay there motionless Mom looked at me suspiciously and said “Are you sure he is OK?” This time I took the dog out from the covers, put him at the top of the blanket and as if on cue, Timmy crawled back under the covers toward the bottom of the bed (Clearly he was tiring of this conversation more quickly than I was).

I pointed to the motionless lump at the bottom of the bed and exclaimed, “See, he likes it!” Mom looked  unconvinced but acquiesced and climbed back into bed with her dog warm at her feet. But I heard her say as I walked out the door “If he suffocates under there you are in big trouble tomorrow!” I laughed and told her Merry Christmas and said good night. And poor Baby Boy was finally allowed to sleep all snug in his bed!