Haven't been able to write lately

Sometimes it is so heartbreaking that you can't even think....

A Trip Down Memory Lane

     My brother, Tee, seems to live in the past. His memories are the only place he likes to visit. He collects them like my mother collects twist ties. And the details that he remembers are astounding. I always think of the Springsteen song, "Glory Days" when he starts talking:

("Now I think I'm going down to the well tonight
and I'm going to drink till I get my fill
And I hope when I get old I don't sit around thinking about it
but I probably will
Yeah, just sitting back trying to recapture
a little of the glory of, well time slips away
and leaves you with nothing mister but
boring stories of glory days" Words and music by Bruce Springsteen)

The problem with this is that he has bought a ticket for my mom and keeps expecting her to go. She cannot. He really does need to get with the program. It does not help her, It does not stir anything. She only gets more confused and agitated. And then he goes home. I really do have to talk to him, again.

      Her passport has expired; the road is closed and is not expected to re-open; the concrete has buckled and the potholes are irreparable; their are sinkholes, swamps, deserts, ice fields, cliffs; the tires are flat and the engine cannot be put in gear. Have I used enough figurative language? I can go on, if you want.

      She cannot answer the questions he asks. Nothing makes sense to her. Logic doesn't exist. Time has collapsed. Talk about living in the moment... It is difficult to wrap your head around the way her brain works. Everything in her past is happening at the same time in the present. And some of it may not have actually  happened at all. She gives new definition to the idea of going with the flow. As I like to say, I have to be like a cork on the water...

Th, th, th, that's all for now, folks, see you next time...

All Dogs Go To Heaven

          This is a picture of baby Peanut in puppy jail. Don't worry, he got off soon after for time served.

 Peanut was almost 17 years old when I had to put him down. Have you ever noticed that there are a lot of ways to say died...euthanized; put to sleep; sent to a farm to live; bought the farm; went to meet his maker; passed over; no longer with us; gone; gave up his ghost; cashed out; pushing up daisies; making the transition and on and on.

The doc had trouble finding a vein...finally, an overdose of anesthetic was given to him. He very quickly stopped breathing and about 5 seconds after that his heart stopped. It took me a long time to come to that decision, but it was time. I have been crying all week, and I miss him but am remembering all the great times we had.

Peanut started getting dementia about 2 or 3 months ago. He was clearly confused, hard of hearing with decreased vision. He had, in a very short period of time developed what my mom has, but her dementia has taken place over years.

We decided not to tell my mother that Peanut had died. She does not seem to notice his absence as he spent a lot of time over the past 6 months, sleeping, under the blankets. (He was always a cave dog). She would not remember what I said.

My mom always thought of the dogs as her 'grandchildren' (which worked out well for me, as I do not have children). She has pictures of them in her room, along with her own children, her brother, her parents and her husband. She received Christmas and Mother's Day cards from the dogs, which by the way, she saved.

When Dee would go out to Long Island to visit her mother, she would take the dogs with her. Dee's mom (Em) is 88. Em instantly fell in love with them and Peanut sat on her lap under the covers, Buster at her feet. She brought a picture of the 'boys' to her church to show her friends. Em is now in a nursing home. She has significant medical problems as well as early dementia...but she remembers her furry grandchildren. She has a photo of the 2 of them in her hospital room. Whenever Dee visits, she asks how her boys are doing. Dee also has chosen not to tell her mother about Peanut's death.

It's funny how our animal companions change our lives, and can make us better people. They teach and train us, not the other way around. They live in the moment and do not hold grudges. Their memories are very short. You know the saying...May we become what our animals think we are. And may we have the patience, tolerance and understanding for those whom depend on us.

Rest in peace, 'Peanut Butter'  forever chasing tennis balls, tree'ing squirrels, and running as fast as he possibly can for no apparent reason (so fast, he would flip over).

Addendum: since the day has been going on, my mother has asked many times about Peanut...I guess I'm going to tell her. I'll see how it turns out and let you know. 
Addendum #2: I told my mom that I had bad news and that Peanut had died. She asked how old he was and said how they (our animal companions) become such a part of the family. Then she said, "Love is love". Sometimes, she's magical.

Dealing with Medical People

          Unfortunately, the averages bear has no idea what dementia and Alzheimer's look like. Most of them aren't just ignorant, they are insensitive to the family taking care of them and do not help to preserve the dignity of the parent or spouse.
          Geriatricians specialize in the problems and diseases of old age and aging people. Getting someone hooked up a Geriatrician usually happens AFTER the first symptoms appear. And these symptoms are usually only noticeable if you see them or live with them 24/7.
          My mom has been seeing the same doc for 25 years. (He is also aging.) The idea of bringing her to a new doctor at this time, does not seam reasonable. She recognizes him, recognizes his office and she is seen very quickly when she is there. They have a handi-capable entrance and large bathroom. Here's the deal...when we go to the doc's she tells him everything is "fine,fine" and she feels "great, great". Thankfully she is quite physically healthy except she is unable to give a urine sample on demand.
          I call him outside the room and to tell him what is really going on. I researched the medications and told him what I was thinking. He works closely with me. I continue (and needed) to gather as much information about dementia and medications as I handle. Having a computer and access to the internet is very convenient and time saving. (I have already posted some links on the main page of the blog). The amount of links on Google for dementia is about 4,810,000. That is a lot of information!
          My mother had to be hospitalized for a urological procedure. The anesthesia made her 'loopy'. She was delusional, hallucinating, dis-inhibited (kissing everybody). They had her on a 1:1 aide because of her behavior but neglected to let her surgeon know and they certainly didn't tell me when I was picking her up at discharge. Are you kidding me? I brought her home in that state and the effects of the anesthetize really didn't wear off for days. The first thing she did when we got home was pull out her indwelling catheter. I called her surgeon right away.
          We had to go back to this hospital to be straight catheterized. The E.R. nurse (I am extremely embarrassed for my profession) did not do a mental status exam (ie. do you know what day it is?; do you know where you are?; do you know who is the president?; do you know how old you are?). If she had, she would have known right away that my mother was not oriented and had no recent memory and her older memories were convoluted. I called her outside the room and told this nurse that my mother had moderate dementia. She walked back into the room and said to my mother: "oh, you have dementia?". I couldn't believe it. I thought that not only was the nurse an idiot, but she was also an a**hole. (Again, unbelievably disappointed in my profession.) My mother looked at her with shock on her face. Thankfully, she did not remember what the nurse had said and we went on our merry way after her procedure.
          And eventually, everything settled down and we went back to normal dementia (if there is such a thing).
          The toll on me was significant... but sometimes medical personnel can't see beyond their own little world. Don't forget, we are all going to get old (even you nurses, doctors, and aides) and possibly end up in a hospital. This is how you would want to be treated?  I say, try and keep up, would ya!? 
        

Paper goods

        My mom was the original recycler. She also had a slight case of what we now know is called hoarding. We still (and I mean up until I moved in with her) had shirt boxes from E.J. Korvettes, Gimbels, and Woolworths. She saved and reused aluminum foil (a drawer full of pieces folded neatly),  plastic bags (thousands of them stuffed under the sink), the little ties that come on a loaf of bread, and wrapping paper (enough to wrap up all the food we didn't eat - remember the boiled broccoli?) for the starving children of whatever country was in the news. My mom's favorite line at dinner was, "If you don't eat it, I'll have to give it to the dog". I am not sure she realized that this was not a threat.
         My mom had a room dedicated to storing all of the religious cards she received every month. She must have been on a hundred different religious order's lists. We are talking about 1000's of cards for every occasion where services would be said for the recipient. My mom kept those priests very busy saying masses. She probably single- handedly saved the souls of thousands of people. Bless her.
          That kind of behavior sort of gets a little turned inside itself when she began her decline. Paper towels became paramount. Now she has stacks of folded paper towels inside books and magazines she is reading; stacked on the coffee table; jammed into the couch cushions; inside her bathrobe pockets; inside her purse;  and last but not really, up her sleeves. She has collections of paper stuffed inside any piece of  mail we get with the occasional fig newton or fortune cookie wrapped inside, like a secret treasure.
           She also goes through combs by the case. They get wrapped inside those paper towels and get thrown out. Who would have thunk that I would be buying combs by the gross?
           Pretty much every couple of days, I go through the table tops, her side table, her pocketbook, and her dresser to make sure food has not been wrapped up and stored  "for later". She should have been a magician because I hardly ever catch her at this.
            They (the scientists that be, whoever they are) have purported that there might be a gene ( no doubt wrapped in tin foil) that might be responsible for hoarding. I know Tee's got it and I think I got a dose myself. I buy toilet paper and paper towels by the tractor trailer load because I have a fear of running out. "Be prepared" said the Boy Scout motto. If you need to buy one (of anything), buy two or three so there is a back up. Wow, do I have a back up plan. Anyone need peanut butter?
            I use newspapers to wrap gifts.  If I have plastic bags (I try to use my 'green' reusable bags), I use them instead of tissue paper. But some behavior dies hard. I have enough twist ties to go from here to California, just in case I need one...ya never know.

Wandering

     Before I realized the extent of brain changes that were going on, my Mom still attended church on her own. (She, a devout Catholic). We would drive her and then pick her up. She began to attempt to walk home if we weren't right at the door. She was walking in the right direction but the seed for fear was planted in me.
     She still attended church, but we were never late. When we moved and she was attending a new church, I was still able to drop her off, see her to the inside and wait to pick her up. You might ask why I didn't go in with her, but I don't want to answer on the grounds that it may incriminate me.
      This was also the time I had gotten  her a "I've fallen and I can't get up" personal alarms. She was able to understand and repeat back to me how to use it. Fortunately, she never needed it. She did, however, press it accidentally and told me the Police were asking her very loudly if she was okay. It took me awhile, but I figured out it must have been the alert. (I was a detective in a previous life.) I called them and they informed me that they had, in fact, contacted her thru their receiver. My personal recommendation is anyone, at any age, who lives alone or spends a lot of time alone, should invest in one of these devices.

      When my mom was forgetting her way around the house, we attached a door alarm. We would set it at night, and if the door was opened without unlocking it, an extremely loud alarm would sound. She opened the door once and the noise severely upset her. We (my roommate and myself) have set it off multiple times because we have forgotten it was on. Ah, the vagaries of life.

         I looked into GPS systems, but what I was looking for has apparently not been invented yet. If only I was good with electronics. GPS is in cell phones, "Lo jack", "On star", SIRIUS radio but it is not in a pendant or bracelet. Nursing homes have electronic devices so if the resident walks out the front door, an alarm will sound. There are medic alert bracelets and pendants but they are only good after the person has wandered and then been found. (I have read too many stories of people with dementia or Alzheimer's who have wandered away and then been hit by a car.)
          I have spoken to several companies and their response is always the same, "she could carry a cell phone". If my mom could remember to carry a cell phone, she would not be wandering and would remember where she lives. You could own a fleet of cars and look on a computer and know where each car is, but they can't invent something to see where your parent or child is.
         
          My mom couldn't figure out a cell phone 15 years ago, never mind now. Her VCR flashed "12:00" forever (a sure sign that someone is not good with electronics and probably never will.)

          Today, we have signs on the doors to tell her what the door is for ie. Mom's Room, The Front Door, The Bathroom. It helps when she can't figure out which way to go. Also, rest assured, she watches "The Best in Catholic Television": the mass, the rosary spoken by a  priest and the rosary spoken by teenagers sitting cross legged on a Hawaiian beach each and every day.

Memories

   Memories do not exist in a straight line. They are more like children's bubbles...tiny and big, bubble within a bubble, bubbles stuck together, bubbles perched on the edge of a leaf of grass; bubbles resting precariously on your hair; and when they pop, you can still see what they were made from. As any child knows, if you catch a bubble on your wand, you can blow new bubbles out of it. But if they land in your eyes, they burn like a son of a gun..

Growing up, I can only remember a few things. They are like 8 x 10 glossy black and white photos/ a still life. The meaning that they have is the meaning I gave them. I don't know if what I think is true, whatever that is. Einstein said "Reality is an illusion. A persistent illusion, but an illusion nonetheless."

My brother Tee remembers everything...what color socks he was wearing on August 24th, 1962; that my grandfather used to drink tea by the gallon; where my father's first job was; what the name of the other dishwasher at Howard Johnson's in Lake Tahoe in 1968. Ad nauseum.

The things my mom remembers with the most depth and clarity centers on babies and music. (I was watching an Elvis Presley concert- don't ask, another story) When I looked over at her, she was singing and knew all the words. I didn't think she ever listened to Elvis before. Whenever she sees my friend Jay, my mom introduces herself. When she sees Connor, she says "how's my little boy, Connor.?".

Memories and logic have nothing to do with each other. Things that are illogical to us (that my 90 year old mom is talking to her  (50ish year old) daughter about her mother (who would have to be 150 years old by now) being alive are never questioned by my mom. Things just are. Talk about living in the moment and not having any constraints.

My mom had repeating bad dreams about three young girls (about 10 years old or so) who were going through her things and stealing her clothes. Did this really happen when she was a child? Who knows. Is it happening now? Not according to my version of reality. Can I convince my mother that there weren't three girls in the house? Nope. All I can do is go along with it.
Early on, she would believe me if I said no one was in the house but us. Now I know she believes only what she believes at that moment and says to me "whatever you say". That translates to "you're an idiot" and I already knew that.

Real events impact on the memories, like triggers. My mom cannot remember that her husband has passed away. She does not remember the funeral or him being ill. She thinks we (the family) kept it from her. I made the mistake of telling her that he was dead and it was like her hearing it for the first time. It was heartbreaking for me, and heartbreaking for her. The next day, she did not remember the conversation. Again, I told her the truth. Apparently I really am an idiot. We both ended up crying.
The devastating events in Haiti produced images and videos of naval ships coming in to port. My mom was annoyed thinking that Dubya was on one of those ships (logically, he would have been 89) and why wasn't he calling her. This time I had learned my lesson. I said, "he would call when he gets a chance".

And now, a message from our next bubble.

Dementia is contagious

Not really but it sure seems like that sometimes. When you are living with someone whose reality is a little permeable, you surely start to question your own. I was giving my mom some of her meds and she asked, "what's this for?" I told her it was a memory pill. She looked at me funny (which she does when she doesn't believe me- all the time, it seems) and said that her memory is fine. And she could drive, too. And walk down to the 'avenue' and go shopping. The last time she walked down to the 'avenue' was in 1978. She has trouble walking across the living room.

In addition, my roommate kind of threatens me if I start getting demented.  When I told a friend about my concern of what would happen should I become demented. He said "have Dee take care of you". Well Dee is only a year younger than I am, so that's not going to work.
I also return the favor by threatening my roommate if she gets demented. When I tell her something four times and she still doesn't remember, she says, "I really don't pay any attention when you are speaking". Sometimes I can't stand her.

I don't have children; I don't have Long Term Care; you rarely know you have dementia until after the brain changes have begun. What will happen to me if dementia or Alzheimer's takes hold?
 Slightest memory lapses becomes glaring. I misplaced my wallet for days because I didn't use it. When I finally went looking for it, I could only remember the last place I had used it. I looked and looked. Dee looked. I looked again, in the same places I looked the first time. Finally I had another pair of eyes, Sue, and I found it at the bottom of a shopping bag.

My chihuahua is 16 years old and also has dementia. Fortunately, he is only nine pounds and can be carried outside to pee. He knows where the food is and where his bed is but he is very confused with everything else. He, like my mom, paces. Sometimes, they are like a very slow moving parade.

With my mom, we frequently ask her where she is going. She never really knows; but I don't know where I'm going either. One day at a time.

Driving

My father taught my mother to drive when she was 23 (in 1942). I really can't imagine what kind of teacher he was. When he taught me I was 16. He was pretty patient with me except for the time I hit a garbage can in a gas station.
My mom was direction impaired. Her motto was, "always have a tank of gas". I unfortunately inherited that gene. This is why I have a GPS.
She was also a very careful driver. After her car was rear-ended she became a nervous driver.
Driving is another area when you don't how dangerous driving can be until after the danger has presented itself. The police, the insurance companies and the Department of Motor Vehicles are of absolutely no help in this area.
For most people, their car is their independence; and trying to convince someone to give up their independence is as hard as it was for me to eat boiled to death frozen broccoli when I was a kid. 
As she got older, you could no longer see her head in the driver's seat from the back of the car. For the rest of us drivers, we know that is not a good sign and these cars are to be avoided at all cost. She was no longer able to make left turns. She could not pump her own gas. She got lost on a hospital's grounds for over an hour.
She arrived home at 9PM without her lights on and parked the car on the lawn as if she was drunk (she was not).
It became clear she could no longer drive without it being life threatening, to her and anyone else on the roads or streets.
I was fortunate in that I was living with her by that point. We hid the keys and drove her everywhere she wanted to go. Of course, Tee thought that she could still drive. Oy he is a pain.
I don't know what the right answer is, but allowing someone to drive who is no longer able is definitely a bad idea.

Educating Tee

Just so you know, there is no way Tee can read any of this blog as he is computer illiterate, thinks computers are 'communist' and is generally a Luddite when it comes to the world around us.  Bee doesn't have time to read it but P-Lee understands.

First, I had to educate myself about brain changes and I mean a lot. Thank the powers that be for the world wide web. Search engines produce 11,600,000 sites for dementia alone.  I haven't gone thru all of them....I have a life y'know; but if Google was a person, I would marry her.

Dementia and Alzheimer's are words used interchangeably...but they are two different brain changes. They are both progressive illnesses. The symptoms overlap but there are very big differences. Sometimes the progression is short and dramatic and sometimes it is slow and subtle with bursts of reality or confusion thrown in. This happens at exactly the same time as when you think you know what is going to happen.

The caregiver becomes the expert on the parent. Brothers do not like it when their little sister knows more about anything than they do, never mind about their mom. Some brothers think they know everything but they do not. And a part of me definitely likes being the boss (ah, sibling rivalry never really goes away. We just get better at camouflaging it.)

Since my mother's decline has been a long process, the educating of almost everyone who comes in contact with her is an ongoing  process.
The last time Tee came over, he brought my mom a calendar and a black magic marker to mark off the days. He doesn't get that if she could remember to do that, she would not need a calendar to mark off the days.
I can never forget that, though.

"Swiper, no swiping!"

If you have or know of any children below the age of 5, you might be familiar with 'Dora, the Explorer'. As you can imagine, Swiper's reputation precedes him.

My mother has always been a little light fingered when it came to restaurants. If she liked something, it would end up wrapped in tissues in her pocketbook.
We have an entire set of glasses (previously filled with Manhattans) with a logo for the Red Lantern restaurants.
[Do they even exist anymore?] and really any glass from a restaurant that made the mistake of putting a logo on it. We also have salt and pepper shakers, cloth napkins, and enough sugar and sweet'n'low packets to start our own diner.

Some time ago, my mom would spend the weekend with my brother Bee and his very understanding wife, P-Lee and the grandkids.
When she would come home, we would find all sorts of things in her purse and her overnite bag...children's toys;  hand towels ("Oh, I was wondering where that went", P-Lee said.); soaps; food; tooth brushes; cookies and an assortment of sundry items.
At this point in her life of crime, she rifles thru my room taking odds and ends. When I couldn't find something, like my checkbook, I would go thru her room and surprise!, I would find it. She is surprisingly stealthy when it comes to taking what she wants. We both came home from a visit at my cousin's and I left a few pictures on my bed. Less than five minutes later, one of them was gone. I thought for sure I had dropped it outside. But no, she moves like Cary Grant in "To Catch a Thief". I eventually found it after going thru a pile of her papers.

My roommate thinks I should put a lock on my door, but I feel it keeps her busy. I just hide the checkbook.

The Stove

My mother was never a good cook. She was what I called an "Irish cook". She boiled everything to death (including, can you just taste them, frozen vegetables boiled for over an hour). She had two specialties...Easter and Thanksgiving. The rest of the year you were on your own.

Two of my friends still suffer post traumatic stress disorder from a Chinese food leftover meal. There was  a major problem with her cooking, that as bad as it was, there was a trap door. And I didn't realize it until I started taking care of her.

Tee thought and still thinks..."what are you talking about? Mom's a great cook"; and he eats everything.

When Mom was still on her own, she made herself coffee and cooked food for Tee.
When we began to live together (with my roommate, Dee), the responsibility of cooking fell to the two people who were not my mother. But she always wanted to help..."can I peel the potatoes, set the table", etc.?
The more time passed, the less ability she had in that part of the house..

The main problem with a stove is that you don't know how dangerous it is until that really dangerous thing has happened. She was still making herself coffee in the morning when she forgot about the kettle and then set fire to a dishtowel.  We awoke to smoke alarms going off in all the rooms (they need to be connected to each, electrically, by the way), a thick cloud of smoke on the first floor and my Mom walking around scared and confused. She did not have any idea what to do. Fortunately, except for some melted stove knobs and a some drips of melted plastic on the floor, she was not injured and everything else was as okay as it ever was going to be.
It was the first time ( of many) that I thought she would have to go into a nursing home.
We removed the knobs off the stove and hid them in the mud room. And she never went near the stove again.

And on a personal note, I avoid it myself, as my roommate is a much better cook than I am. But I  "order in" like a champ.

Food

My brother, Tee, lived with my mother on and off forever (mostly on). She did his laundry, cooked and served his food, cleaned up after him, unclogged his toilet, and listened to him as he preached about some sport or game or some other thing she had no interest in hearing about. She would look bored but he never seems to notice.

My mom would take a bite of something and then ask Tee if he wanted it. He would take it and eat it with as much gusto as a person who hadn't eaten in days. She still does this, even today, whenever he is around. Tee has to be reminded repeatedly not to take her food.

When meals are served, my mom's responses are always the same..."this is too much". She says this at each and every meal, day in day out, week after week, month after month, and year after year. Sometimes I can handle it and sometimes I just want to shoot her.

Would now be a good time to say we both have "weight problems"? That we are fluffy, chubby, stout, Rubenesque (for me), big boned, obese or just plain fat...And my other brother Bee seems to be trying to catch up but is really just an amateur at eating.

Relationships with family are complicated. Relationships with food can be even more complicated.

Food, not just limited to sustenance.

The Beginning

My mom had always taken care of the men and children in her life. She had worked and been quite successful but felt it was a wife's job to take care of all the needs of her husband. This included cooking, cleaning, laundry, and doing everything a household requires to run. All her husband had to do was bring home the check, and then his retirement check.
When her husband (Dubya, not his real name) passed away, this is really the critical demarcation in her life. Fortunately (or unfortunately, as it turned out), my eldest brother (Tee, not his real name) was living with my Mom during this time frame. (more about him later).
Looking back, I can see the point where she began to lose her way....