Mom and I were in the kitchen and I was preparing a drink and some appetizers for us to take out to the backyard deck. I had just poured Mom a rum and coke when she took the remaining coke from the can, poured it into a cat dish and set it down for the cats to drink. I said “Mom you realize that cats don’t drink coke right?” Her angry retort was “Well mine do, I always feed it to them.” With that said she walked out to the deck to enjoy her drink. I picked up the bowl of coke from the floor, disposed of it and joined Mom at the backyard table.

Once we settled in, I decided to ask Mom if she thought she had a memory problem. She said yes sometimes. I then asked her if I point out a task she is doing incorrectly and she is confrontational about, does she think she reacts that way because she is embarrassed or because she doesn’t believe that the task she is performing is incorrect. Mom said the later.  I answered I thought that was fair and asked if that bothered her that she doesn’t remember how to do things as she once did. She replied no, because she doesn’t remember that she doesn’t remember so who cares!

I laughed and then she looked at me and said “My life is so different since Pat died. I don’t really know what it should look like anymore so I just have to be OK with how it is.” I was a bit astounded that she was able to attribute her change in cognition to the fact that my Dad died and that was why she believed things weren’t as they always had been.

I guess when you have limited ability to reason, you are going to grab on to the low hanging fruit. For Mom, Dads passing is why her life looks different. She is unable to understand she has dementia, so Dads absence is to her an explanation to a life that now looks jumbled. I guess that reason is as good as any.

They say the person with dementia has it easier in some ways than their loved ones, because they don’t know any different. I am not so sure that is true…. Sometimes this journey is a sad one, all the way around.

On a recent visit to Mothers, my brother took Mom and I out to a nice dinner at Adele’s, a local favorite. Mom was excited and happy to be going out but my brother had just arrived that afternoon so she was a bit reserved with him.

Mom kept pulling me aside as we were preparing to leave the house and whispered “Now who is that guy again?” I would tell her it was her son Patrick and she would say “Well of course and how embarrassing! Please don’t tell him I didn’t remember.”  Mom asked me that about three times before she settled in to remember Pat and then her attention was focused on where we where going and why.

We arrived at the restaurant and were warmly greeted by the staff. My brother is a devoted patron and so they remembered him and escorted us to a lovely table towards the front of the restaurant.

After we all were seated, Mom looked round and said “Look here, every one made it expect for me!” I remarked “What are you talking about Mom?” She answered “I am in such left field I don’t know where we are or what we are doing.” … And with that announcement we proceeded to order more than a few drinks and had a lovely dinner together!

My brother Pat made a trip from his home in Denver to see my Mom for the weekend and to attend a high school friends wedding. We kept the weekend pretty low-key with lots of time floating around the pool and catching up, except for the first night we caught up over a bit too much wine!

Mom, Pat and I were chatting it up in the shallow end of the pool the next morning with me sitting on the steps and Mom and Pat floating around. I told Pat I would be the designated driver to the wedding because all the wine I had consumed the night before was counter productive to my weight loss program. I said “I have been doing pretty well at losing this excess weight I am carrying around but I need to stay committed.”

My Mother stopped, turned to look at me and said ” I never noticed that you were carrying extra weight but now that you pointed it out I can see that you are carrying more than you should.”

Thanks for the confirmation I thought and we laughed and I said “I guess I should have kept my mouth shut!”

Perfection I know is subjective but for me I had that day with Mom. Now I don’t want to present she was perfect…lacking in argument and totally compliant….that would be fantasy. But on this day she was engaging, and mostly pleasant, kind to the dogs (A major feather earner from me) and easy and sweet to be around.

Mom was mostly self-sufficient in her busy work… sweeping the outdoor areas and tidying the yard, which I have not seen in weeks. She swam and warmed herself in the sun and had a very relaxing day. In general she was more herself than I have seen in a very long while.

Perfection may be subject but this day came as close as it gets for me…..

My Mother keeps trying to get me to leave. At least once a day she will ask me when I am going home or say “OK well I don’t need you anymore you can go home now.” Most of the time I know she is confusing me with a paid caregiver, but some days I can tell she just wants to be alone. I am not sure why but at times it seems easier for her not to have people around. At those times I will try to keep a low profile and stay out of her way to give her privacy. But it is inevitable that we have to be in each others company at times during the day.

It is easier when she thinks I am from the care service because when I remind her that I am her daughter she acts like it is news to her and then will be glad I made the effort to come visit and be happy to know who I am. It is hardest when she knows who I am but still wants me to leave.

On one such occasion when she asked me to leave I said ” Mom I am you daughter Monica and I am visiting you from San Diego. I can’t leave because I am here to see you.”  Mom asked “Why do you want to see me?” I said “You are my Mother and I love you and want to spend time with you.”  Moms answer was “Don’t you have a life and a husband and children that you should be with? Why are you wasting your time up here with me! Go live your own life.” Ouch!

No matter how hard I try, it is hard to reconcile the contradiction of a person who in the past could not wait for each and every one of my visits, to this person with dementia who is trying to find ways to get me to leave her alone all the time. Yes it is Moms way of trying to find control in a state of mind that offers her none. Yes it is not her talking it is the dementia, but it is still hard to hear your Mother, who always made you feel adored, trying to ditch you all the time!

I finally told her that no matter what I had going on in my life that she was still my Mother, that I loved her and cared about her, so she will just have to get used to my being around every once in a while. She looked at me and rolled her eyes and said “Brother how boring for you.” I laughed and said “Well it would be a lot more enjoyable for both of us if you could just be happy to see me and leave it at that.” Mom commented “I will try but I won’t make any promises.” I have no doubt that is one she will keep!

Mom was wandering around one morning looking very tired.  I asked did she feel OK and she said yes she felt fine. But her demeanor was so quiet and her energy so low that I asked her to sit with me for a minute and talk. I imagined it would be a long question and answer session to try and ferret out the true source of her problem.

She sat down next to me and I said “Mom you just don’t seem yourself. Are you sure you are OK?” Mom looked at me and to my surprise she put an immediate finger on the emotion she was experiencing and said “I think I am just depressed.” I was surprised because she had the cognition to distinguish what she was really feeling.

I asked why she thought she might be depressed and she answered “Because I got old. I used to be active and zoom, zoom here and there. Now I just sit around and do nothing with no one.” My instant reaction was to tell her she was not alone, that I was there, she had visitors at least once a month and that we went out and did things together all the time. But instead I held her hand and I said that I was sorry she was depressed and that I imagine it must be difficult to get old and come to terms with not having the life you once did.

I felt it was really important at that time to empathize with Mom in one of the rare moments she was able to recognize her true emotions. So often with people who have dementia, they are feeling one thing but act out a different emotion because of their inability to distinguish between them. Mom was very clear about why she was sad and I didn’t want to diminish her feelings or be dismissive.

Celebrating clear cognition does not only come with happy thoughts and good memories. What makes us human is the nuance of emotions and the intellect to be able to recognize the distinctions. It doesn’t always bring joy to the person having the emotions but it is part of the process we all must go through in life.

Mom and I sat together quietly for a while then I said “Well we can sit here and be depressed for a while or I can take you to lunch…you choose.”  Mom said “Lunch sounds like more fun” …and she was off of the couch in a hurry to find her purse and her lipstick.

I have been known to make an occasional bad decision but tonight tops the list.

Recently, I have been swimming at night enjoying the newly remodeled backyard pool. Because I can, I will sometimes take my suit off and swim, with the pool light off, in the nude. It is a wonderfully relaxing feeling and a perfect way to end the evening before bed.

Tonight I decided I to skip the bathing suit all together and I wrapped a towel around me while still in the house and went out to swim in the pool. Mom came out at some point to chat a bit while I paddled around but soon went back into the house.

After about 30 minutes I decided it was time to go in and so I got out of the pool, wrapped myself in a beach towel and headed for the back door. I noticed the light was turned off on the porch and a feeling of dread came over me. I tried the door knob and it was locked. All the lights where off in the house and both back doors were locked.

I really didn’t want to scare Mom by banging on her bedroom window to wake her and was also a bit apprehensive that she would know it was me or be able to hear me.

We have a hide a key in the front of the house in a lock box. So naked, except for a beach towel, I crept into the front yard to the lock box only to realize I could not see the combination without my glasses!

My second option was the window to my bedroom which was open, but is fronted by a rose-bush. In my current state of exposure I wisely decided against that painful option, not to mention the risk of a neighbor seeing God knows what as I heaved myself through! I finally realized my only hope was trying to wake up Mom.

I banged on her window to no avail until Timmy started to bark. Mom woke up asking, to no one in particular, what that noise was. I said “Mom it is Monica” She yelled out “Ok so where are you?”. I replied that I was standing outside of her window. She said “So what.” I yelled “Mom you locked me out of the house and you need to come to the back door to let me in.” She asked me “What?” at least three more times and I replied the same until finally, to my relief, she understood and came to unlock the back door.

There are so many lessons in this one I am not sure where to start…….

So many things are baffling about witnessing someones memory lose because of the seeming randomness of it all. For instance my Mom can remember to wash her hands constantly but makes a huge fuss when you insist she wash her hair. She will remember to retrieve the mail every day but never attempts to open it. If she knows we are going out to meet people or to dinner she is diligent about brushing her teeth, her hair and putting on lipstick. But when I suggest she change her outfit because her clothes are spotted or inappropriate for the occasion she will push back and say things like “Who cares!” or “No one is looking at me, lets just go!”

One of my biggest personal challenges is to try to not make sense of it.  Just to let the memories and habits filter through her without trying to figure out the hows or the whys in each situation. My desire for insight is not for the sake of my curiosity but selfishly for the sake of my sanity. If I can predict Mom’s behavior based on her memory that day, I can try to create some semblance of routine. Then I can bring some order to what at times feels like chaos and when order happens in this household, it is the closest thing to Zen I can get!

The one area where I can count on Mother being almost one hundred percent consistent is when it comes to her personal safety. She never tries to drive her car, even though the keys hang in plain view. Mom never attempts to cook, although we added the precaution of a gas shut off valve so she would not be able to if she tried. She won’t walk in the snow or the rain for fear she might fall. Mom doesn’t attempt to cut things with a knife, except her dinner, or use scissors. She knows her neighborhood very well and navigates it successfully on her walks. However if she is having a bad day or is agitated she will only walk to the end of the cul-de-sac and back. It is as if she intuits that she may have difficulty getting home in that state of mind.

I am not naive to the fact that this could change some day soon, so I am diligent in monitoring her activity in case that day arrives on my watch. But in witnessing all this confusion it does give me some measure of relief that her personal safety is still paramount in her mind.

Now if only I can get her not to wear pajamas on her walks, stop putting the flowers in the toilet like it is a giant vase and feed the cats the food I set out for them instead of English Muffins….well I wont hold my breath, but a girl can still dream!

Recently in my Mothers moments of confusion, if pressed to identify who I am, she will often answer that I am her younger sister Marjie.  This week Marjie flew in from California to see Mom and me and it has been wonderful to have her here. However having us both in the house is a bit of a challenge for Mom because she is never quite sure who is in residence.

Trying to explain to Mom who we are more than few times a day sometimes feels a bit like a bastardized version of Abbott and Costello’s Who’s on First (Okay I am not so old as to have been around for the original Abbott and Costello skit of Who’s on First but I remember as a girl seeing it on TV!)

Just yesterday the three of us where in conversation and she suddenly stood up to walk away. I asked “Mom where are you going?” she replied “Well I don’t know who you are or what you are talking about so I am moving on”. I reminded her of who we were and she said “oops sorry” and we all laughed and she sat down to rejoin the conversation.

This is not unusual to this visit but I think my Aunt Marjie was a bit taken aback on how much my Mothers dementia has progressed since she saw her last. Mom will swing from knowing one of us, to both of us, to neither of us in a few hours time. We are both patient with giving reminders but for me the hardest part is not being able to provide Mom an anchor. There is no way to create a point of reference, a touch stone. She is incapable of keeping all the players in her life straight in her mind.

A few nights into her visit, Marjie made us a lovely dinner and afterwards we all sat outside on the deck and talked. Mom was very pleasant, and present as best she can be. When we decided to retire for the evening, Mom said her good nights and walked back to her room.

A few minutes later Mom walked back outside where she found me collecting glasses and straightening the deck area. I asked was she OK and she said “Yes but I was wondering where I am?” I told her she was home. She said “Well I am glad to hear that but I not sure which one” I told her she was in Carson City, that her sister Marjie was visiting and that I was her daughter Monica. Then in an effort to lighten up the mood I said laughing “All you have to remember is that I am your perfect daughter!” Mom smiled and said “Good thing you told me.” I replied “Why? Would you have thought otherwise?” She looked at me knowingly and said “NOW who is afraid I would remember differently?” …. She still has it!

Much has been made of the movie Still Alice staring Julianne Moore as a woman with early stage Alzheimer’s disease. She received an Academy Award for her performance so, being a huge movie goer,  I have been chomping at the bit to watch it.

Strangely whenever I had the opportunity to see it, I chose to pass on it for something lighter, typically a comedy. I found that strange because I knew so much about the movie would resonate with me, considering my current living situation with Mom. Intuitively I knew it was going to be an extension of what I witness with my Mother, so I guess I was always too tapped out emotionally to give it an audience.

Towards the end of my last week away from Mom I decided it was a good time to finally get on Netflix and watch the movie. As expected, I was in tears about a third of the way through the film and they did not stop flowing until the credits began to roll. It was such a touching film and I felt it did justice to so many experiences a family shares with a loved one whose memory is disappearing.

I was particularly touched by the scene where the parents gather their adult children for a family meeting to break the news that their Mother has Alzheimer’s. It was a heartbreaking scene but such a generous gift to bring the children into the process and keep them informed on the aspects of the disease and ramifications they will all have to face.

Afterwards I remember thinking back to that scene and wondering why my parents didn’t do that for us. Especially since my Dad was a doctor, we were an open and loving family with better than average communication skills and we were all aware for years that Mom’s memory was starting to fail. What the hell?

The truth is, like the character in the movie, my Mothers had a genius intellect and so she was able to compensate for and mask the memory lapses for years. This was problematic for our family because we knew something wasn’t right but Mom downplayed it and managed for a very long time before alarm set in for us.

This insidious progression took away our opportunity for the “Aha” moment the family shared in the movie. Mom was in denial and we tip toed around trying not to insult her intelligence, embarrass her or give the memory lapses more energy than Mom was willing to allow. She needed to believe that it was a natural progression of the aging process and that everyone her age had memory problems. So we let her.

This is for me a profound regret. I wish I had been able to get through to her in the early years, before she was unable to believe she was losing her memory.  I wish we could have discussed her symptoms and courses of action she could take to help her odds, if any. I wish I could have found a way for Mom to not be so afraid.

At the very least I wish we had insisted on her facing her condition so we could have memorialized all that was in her mind, all the memories that would be lost. Memories like how she felt on her wedding day, what was the best day of her life, how old was she when she had her first beer or what was her favorite thing about being a Mother.  These and thousands more memories like them, all lost to us now….regretfully.