My Mother has been doing very well on her new medication regime. However it brings her focus back to events and situations that she had previously not mentioned or had concern about in months.

My Dad is always an interesting topic because in her more confused state she will act surprised to learn that he died. But in her new focused mind she remembers but will remark that it is not a memory she wants to bank. Mom will explain to me that she knows Dad is dead but thinks she wants it not to be true so she puts the idea out of her head.

Yesterday I came in from reading in my room into the family room and sat down next to Mom on the couch. She looked at me and said “Were did he go?” Knowing what she was referring to I asked “Are you talking about Dad?” Mom replied “Yes my husband. I thought he was back there taking a nap but now he is gone.” I cleared things up with a simple statement and said “Mom, Dad died three years ago.” She looked at me, laughed and said “Good excuse for him not to be here then!”

The philosophical discussions about how we medically treat our seniors have always been of interest to me from the time I was in my Twenties. I had the good fortune to live with my Grandmother (my Mothers Mom) during the last year or so of her life, while I was in college, and experienced an early lesson about aging.

Grandma was such a wonderful woman and she lived her old age with grace and humor. She was also the first exposure I had to someone letting me know their wishes privately about no life extending heroics, so I could advocate for her if she were not able to articulate her own choices.

Fortunately I have a family who was in tune to my Grandmother and she was never put through more than she requested. Grandma died at home surrounded by each of her children and I was blessed to have been there as well. She passed away with dignity, respect and in a room full of love.

I think of Grandma often when I am dealing with my own Mother. My Grandma had a very mild memory issue and would repeat herself often but never got to the place my Mother has with her dementia. Grandma was able to be consistent in articulating her wishes for her healthcare up until the very end.

But with Mom it is different in that we have to balance what we knew her wishes to be in the past and what she is expressing in her confused state of mind. As a family we want to give her the choice of change, but how do we know if she is able to comprehend the consequences or understand the ramification of a changed healthcare choice?

As an example, an argument was made to me from a healthcare provider to not give Mom the dementia drugs because there is no way it can reverse what has occurred, no definitive science that it works for everyone (crap shoot) and it delays the inevitable, so why put them in the holding pattern of dementia….what quality of life are you keeping them around for?

Sounds brutal but it made sense to me. Especially for someone like my Mother who my whole life would comment that her biggest fear was that when she got old she would lose her mind and she would not want to live that way. Yet when you ask her now does she enjoy her life and should we do all we can to help her keep her brain healthy she will say yes! So we put her on the drug regime and when I hand her the pills for her to take she will ask “What are these for?” I answer that they are for her brain and she always replies “Well then give me ten of them!” and pops them in her mouth happily.

In the end the rationale for our family was that my Mother is still able to function with some independence at home and so we would do whatever we could to help her remain in her home as long as was safely possible. We support that with caregivers, and for now my being with her, but there may come a day when this will not be possible and Mom will have to be moved.

It did give me pause when I thought about putting her in a holding pattern of sorts by putting Mom on drugs that may delay and as a result just prolong her decline. But as a family we thought we needed to give her every opportunity to stay at home and so here we are waiting for the next healthcare decision and hopefully a smooth place to land!

I was barely gone a week to San Diego but as I walked around the house when I arrived back in Carson City, I found the strangest configuration of items throughout the house. It seems odd to me that there were so many as she had hours of caregiver service each day in residence with her while I was away. It makes me wonder if they just watched her as she made things up and let her be or if they were unaware. I guess it would keep confrontations to a minimum to not address them with her but the least that could have been done was to walk behind her and undo her doings! It seems it was left to me to go around undoing all her creations and collections.

Case in point is that I found my iPad charger chord tied to a small dog harness, as if it had been used as a leash. Did this just go unnoticed or did she make this one when she was alone? I went to put trash in my bedroom trashcan last night and it had disappeared. A hunt around the house found it behind the couch in the family room.  Almost every outdoor cushion and pillow was stacked in the house or under the porch. The cat bowls were filled with uncooked rice and she had placed every pair of reading glasses she owns in a pile on one of her dressers. Her purse was under a pillow in her bedroom with all of Timmy’s stuffed animal toys lined up in front. I found a small dog bed with a shirt over it on a dining room chair.

I am not sure if this is Moms way of keeping busy or if she gets anxious and starts to walk around trying to make sense of her confusing world when patterns get changed. I know my comings and going can create extra stress for her so I have to imagine that contributes to the escalation of these strange behaviors.

One thing I immediately did when I arrived home and began to notice all the creations was to throw away my toothbrush I had left in the holder in my bathroom….not taking any chances on what that may have been used for while I was gone!

Before I left for San Diego, a good friend of mine came up to Carson City to stay for a few days. She is a long time friend and familiar with my Mom and her dementia and does very well dealing with my Mother. That is always important to me when people come to visit because Mom can easily offend the faint of heart. It makes the visit more enjoyable for me as well because I have a tendency to over worry about the situation and run interference when it often is unnecessary.

It was particularly hot in Carson City as a heat wave hung over us for the entire week of my guests visit. To manage the heat in a house without central air-conditioning, I have a series of fans and portable air-conditioners I position about the home to maximize the cool air flow. For this to work it takes cooperation from all in residence NOT to turn anything off during the peak cooling hours or the house is miserably hot in the evening.

Mom of course is always the foil in my planning to keep the house cool. She refuses to believe that we need the AC running or the fans on because to her reasoning it is not hot in the house. I will respond to her “That is because I have the AC running Mom, so you need to leave it on to keep it cool.” Mom will insist I am wasting electricity that she has no money to pay for and on and on the argument will go. Finally, I have to resort to putting big signs on everything with an explanation as to why it needs to remain turned on and when that stops working I just follow behind her turning back on what she turns off.

One evening during this week, before I went to bed, I walked down the hall to check on Mom to see if she needed anything. I went into her room to find Mom standing by the foot of her bed wearing a bathing suit. I had put out some pajamas for her to wear and they sat untouched at the end of her bed. I looked at her outfit of choice and said “Mom I put out pajamas for you to change into. Do you want me to help you get dressed for bed?” Mom replied “These are my pajamas.” Knowing were this was going I still corrected her and said “Well no, actually that is your bathing suit” pointing to her bed I said “Those are your pajamas.” As expected she responded with “I always wear my bathing suit to bed. I will just wear this.”

Considering the temperature in her room was about 80 degrees, because of my unsuccessful attempts at keeping Mom away from the fans and AC units that day, I responded “OK then I am sure you will be nice and cool” and said my good nights and was off to bed. I figured there was certainly no harm in Mom sleeping in her bathing suit and it did stand to reason she would be much cooler wearing that than her pajamas.

The next morning at breakfast, my friend came out to greet us and when my Mom was out of the room she said to me “Your Mom scared the shit out of me last night.” I instantly went into my over worrier mode and imagined all sort of awful scenarios that could have befallen my unsuspecting guest during the night! I asked “Oh no, what happened?” She began to set the scene, and said she was not sure why, but she woke up at about 2:00 a.m. and as she told it “I sat up to find your Mom in my room!” Then my friend looked at me with dismay and continued “And she was standing there in her bathing suit!” I broke out laughing and relayed the story of the garment debate of the previous evening. When we both stopped laughing, I asked her what she said to Mom and she replied “I asked her what was she doing” and she said Mom answered “I am not sure” and walked out of her room.

My friend said that was when she realized the fan in her room was off, so surmised that Mom had heard the fan and come into her room to turn it off. I remarked “I hope you turned it back on” to which she answered “Hell no! I was afraid she would come back in so I left it off and it was hot as an oven in my room all night!”

Thank goodness for great friends with a good sense of humor! Motel six may leave the lights on but at Casa Flynn it is every woman for herself!

Leaving to go back to San Diego is always a bit stressful. Not that Mom doesn’t manage quite well with caregivers, but it stresses me out because I have to trust others will be diligent. It is very easy to give in to Moms persistent protestations about not needing help, asking you to leave or worse yet when she is down right rude about your being around.

Her focus and cognition have improved a bit with her new medications, which became a mixed blessing. The better she does the more she is aware others are around to help and the more offended Mom is that we think she needs assistance. So, it can be very difficult for the caregivers to manage being in the house when she is constantly finding ways to try and get them to leave.

The instruction is clear and specific.  They are to reference the list of her children, starting with me,  to call so we can explain to Mom why help is in the house and it shifts the blame to us and off the caregivers. This is not hard but seems the last thing they do to try and address the situation! Very frustrating.

To be fair I think some may think it is an admission they cannot handle the situation on their own. But in reality there are times I cannot get her to cooperate and unfortunately I have no stand in person to which to pass off my frustrations. However I do not think it is an excuse to not call and ask for help and consequently it turns me into a micro manager.

We have cameras throughout the common areas and this gives me an opportunity to monitor caregivers and comings and goings at the house. So it was frustrating to be viewing the other night and see no hint of a caregiver. After 15 minutes I called the service who called the woman who, as it turns out, was sitting in her car because Mom asked her to leave. Really?

We are fortunate and cursed in that Mom does not need constant attention, just assistance. It does take finesse to be able to help without being intrusive and at the same time keep her in the mindset that she still has some semblance of control of her life. We are lucky that most of the caregivers are able to do that with success but I wish time away could be more relaxing and less management on my part!

I remember the first time I embarrassed my Mother in public. I guess it would be more accurate to say one of my earliest memories is embarrassing my Mother in public. We were at The San Diego Zoo and there was a man on crutches standing by us who had an amputated leg. He had a stump and I remember being fascinated by him. I walked over and stood right underneath his stump, looked up and asked him what happened to his leg.

My next recollection of this inquiry was my Mother rushing over and yanking me by the arm from underneath his stump. The man never answered me and I remember feeling confused about what I had done wrong. I am sure it was explained to me, but my curiosity clearly was more demanding of my attention than the lecture I was given because I can remember always wondering what had happened to the man’s leg.

Paybacks are sometimes a long time coming but I got mine when I decided to take Mom to one of her favorite restaurants for dinner, Applebees. We walked in and were seated at a booth that was backed up against a bigger one with a party of eight already seated. The waitress took our drink orders and we settled in to looking around and me reminding Mom of the last time she had been to the restaurant.

Our drinks arrived and Mom continued to rubber neck around the restaurant taking in all the people seated at their tables. I had just thanked the waitress when Mom quickly turned to me and said a bit too loudly “Oh my did you see that guy sitting back there? He is huge!” I was a bit confused what she was talking about and said “What?” Mom answered “You know” and proceeded to puff out her cheeks and hold her arms out from her sides to make her point, then to my horror turned to point towards him and said “Look how fat he is!”

To say I was stunned was an understatement but I had little time to dwell on it as I was trying to get her attention back on to me before the poor man saw her pointing at him. Thankfully he was not aware of her focus on him. However, almost every person at the table of eight behind us stopped eating and looked in our direction.

At this point, short of rushing over and explaining to the party of eight that my Mother has dementia and therefore a broken social filter, there was nothing to be done but change the subject; divert, divert, divert! My comfort was knowing the gentleman she found so fascinating never noticed her interest.

After dinner, as we were walking to the car Mom said “I feel a little light-headed did I have a drink?” I answered “Yes you did but I asked the waitress to have them go light on the Rum. By the looks of it however I think she may have forgotten to relay that onto the bartender.” Mom smiled and said “Good for her. I guess that means I will come back then!”……and maybe not! At least not anytime soon!

If you have heard it once you’ve heard it a thousand times, that as people age they regress and revert to more childlike behavior. I find this to be a bit offensive because I do not think a change in cognition or incontinence constitutes a fair comparison to make of a senior and young children. We age, our bodies get tired and although they may mimic childlike behaviors, I do think it is a comparison that erodes dignity.

HOWEVER, there are a few behaviors that parallel and my Mother performs one of those with aplomb. She appears in a room like a ghost! Mom is constantly sneaking up on me when I least expect it. I will be standing at the kitchen counter making coffee, turn around and there she is, hair all wild about her head and her standing close behind me staring! It is past startling!

I know many parents have had that experience when they wake up to find a child standing at the foot of their bed or sneaking into their room in the middle of the night. Thankfully Mom will knock before she enters my bedroom, but throughout the rest of the house… I am fair game.

My savior is typically Timmy who sticks to Mom like Velcro. He usually enters the room first so then I know she is about to follow. His little nails tick along on the kitchen floor so I usually hear him before I see him. But if the little B word is lazy that day and stays in bed,  Mom can slink into the room before I am aware, I turn around and BAM my heart jumps into my throat!

I don’t know why old people and children are both so stealthy. Maybe it is because they are typically both light in weight or because they take small steps so you can’t hear their footfalls. All I know is that when it happened this morning, as I turned around from the coffee pot to find the apparition of Mom, her wild gray hair standing about her head, smiling at me, I was so startled I slopped the coffee all over the floor.

If I didn’t know better I would think she is trying to get rid of me…Hey, wait a minute!?

If a cat looks at my Mom she thinks it is hungry. If it meows and rubs against her she thinks it is hungry. Basically if the cats are doing anything more than sleeping, she is following them around trying to feed them.

We have to hide the animal food in the house because Mom will forget the last time she fed the dog or the cats and feed them constantly throughout the day. I will put out a few decoy cans in the evening in case she gets up in the night to feed them or the cats come in late asking for food.  Then it is my hope she will use that can as opposed to whatever she can find in the fridge to feed them.

I typically get up early to feed the cats so it is done and they are out the door hunting around outside. Otherwise Mom will obsess over thinking they are hungry and I have to convince her they really did eat. If they are around she will say things like “Why is he looking at me? He must be hungry” or “I don’t think the cats ate they look hungry.”

One day I caught her following a cat down the hallway saying “Here kitty, here you go” with a piece of banana she was shoving in front of him trying to generate interest. No go of course. On a recent morning I went out to the garage and sitting next to a favorite cat sleeping area I spied a coffee mug filled with water. When I came back from shopping that same day I passed through the laundry room and found a cat bowl filled with vanilla flavored creamer and one  beside it filled with crumbled up tortilla chips…..I was curious as to why no Salsa? No wonder they didn’t eat it!

It is such a curious thing to watch someone with Dementia figure out how to accomplish tasks that once were so natural to them. Because there are holes in their reasoning it is humorous what they come up with as solutions. Even more humorous are the new tasks they choose to create for themselves!

Of particular concern to my Mother are wet or damp items. She is obsessed with drying things or keeping things from getting wet. But the steps she takes to accomplish this have taken on a life of their own as she fills in the blanks with what makes sense for her now.

As an example, Mom will wash dishes in the sink then put the items in the strainer to dry. If there is a large item, like a pan or a cutting board, Mom will take them out into the yard or put them on the deck to dry in the sun. She will not hand dry large items with a dish towel. However Mom will hand dry small items but then immediately takes the dish towel out to dry it in the sun. Same goes by the way for the sponge or the dish-washing brush she used to wash them….all items marched outside to dry on the deck.

Another quirk is the outside furniture next to the pool. All the pieces have cushions and pillows on them, meant of course to be able to get wet. If after you swim you sit on a cushion and get it wet, Mom will take the cushion off the chair, that is already by the way sitting in the sun, and place it in another part of the pool deck in the sun…huh?

The reverse is true for all the outdoor decorative pillows I recently purchased and put around on the outdoor chairs. Again, meant to be able to withstand the weather but she will pick them all up at night and bring them in the house to keep them from getting damp with dew. I have to make the rounds in all the rooms each morning picking them up off beds or out of closets and place all the pillows back on the furniture outside were they belong.

Sometimes she will combine collecting cushions AND pillows but thankfully she will stack the cushions up under the porch and not bring them all into the house for me to have to scavenge the next morning.

All this is eclipsed by her obsession at not wanting to sit on any of the outdoor furniture that has a cushion when she has on a wet bathing suit. She swims many times a day and each time after she swims, she takes off her bathing suit by the pool, then will wrap herself in a towel and only then sit on the furniture. Never with a wet suit, ever. Then the suit has to be placed in the sun and of course when she wants to swim again she has to have a fresh DRY suit and the whole process starts all over again!

Naturally I do sometimes get annoyed by all the extra work this creates for me, sneaking behind her picking up pans, cutting boards, sponges, dish towels and bathing suits. Hunting around the house looking for pillows and constantly replacing cushions on chairs so people can comfortably sit. It can be a bit crazy making at times. But mostly I just have to marvel at it, because in her lack of reasonableness she has created quite a routine, a new one that makes perfect sense to her….and what ever makes sense to Mom will have to be OK for now….because we know for certain that to will change!

I can remember the first time I heard my mother say what I thought was a bad cuss word. I was in high school and she and my Dad were going through a really hard time. She was very upset about something and I heard her say “God Dammit!” I was shocked. Previous to this throughout my life I heard her throw out a “Damn” here and there but that was the extent of it.

My Grandmother, her Mother, used to tell me that people who use curse words do so because they have a limited grasp of the English language. My Mother must have taken that to heart because she was a class act and rarely used foul language. (I’m not sure why I take after my Dad on that front as he had a bit of a potty mouth and I unfortunately can fall into that category …Grandma would not be impressed!) So, as you can imagine I was shocked when my sweet Mother threw the F bomb at me recently!

I was in San Diego for a few weeks so as a result we had caregivers at the house helping Mom. She had just come off a week of my sister being with her but there was a five-day gap before I was to return, so we scheduled help. The third morning into caregivers  I got a call from my Mother who was very angry. She asked me “Why the hell do you have this lady here. I want her to leave but she said she can’t unless you tell her to.” The caregivers have instruction to call us to deal with her outbursts, if possible so we are the heavy and not them.

I reminded her that was right, they were hired by us to help her and can only leave if we agree to it. I said “Mom you made an agreement to go along with this arrangement so you could remain at home living alone.” As expected she did not remember any such agreement and insisted the caregiver leave. I asked “Why is it a big deal if they are there to help you? You usually like people around.” Mom remarked angrily “Because I don’t like her that is why!”

I of course knew that was not true so I reacted in a way that I thought would calm Mom down and replied gently, “Oh come on Mom, you have always really liked Gail and you like April a lot too. She also comes to help. They are there with you a lot and you enjoy them” Without missing a beat she said “Well F___ You!” and promptly hung up on me… Ouch!

I was so shocked. I don’t know why but it really upset me! I called my sister, my partner and a friend just to work though the fact that I knew it was dementia talking, but I still hated it….I really did. About 30 minutes later I called my Mom back to check in to see if things had smoothed out and she answered the phone as the Mom I love. She thanked me for calling, said she was excited that I would be coming to see her in a few days and ended the call with “Thank you so much for thinking of me Dear. I love and miss you and will see you soon.”

And the F Bomb was forgotten….it seems by both of us!